Busted!

Humbled and perplexed

2011-05-29T14:08:00.003-07:00

It's been a long while since I updated this blog. In fact, I often thought about removing it because I practically considered my experience with DCIS to be "over," even though I still had several years of treatment left with tamoxifen.

This past week I had six-month followup appointments with my radiation oncologist and medical oncologist. My radiation oncologist released me -- I wondered when that was going to happen since I was two years out from radiation. She said she still wanted any test results sent to her in case there was a suspicious sighting at some point. I had left that appointment feeling good -- and grateful. Both at that appointment, and the one with the medical oncologist the next morning, I had seen people in the waiting rooms of each doctor who were so obviously ill.

It was truly humbling to witness both older and younger adults battling their respective cancers. I sat there feeling pretty good overall and with a full head of thick hair. I was particularly humbled when I was in the waiting room of the blood lab on Friday preceding my appointment. Three other ladies came in and one began talking about her battle (so far seven-year successful) with pancreatic cancer. I didn't offer any details about my treatment since my DCIS was non-invasive and I didn't have to have chemo. I always think of patients who have to undergo chemo as the "true survivors." One of the other ladies had just been diagnosed with pancreatic cancer, and the 7-year-survivor told her to never give up. One of the others waiting said she had had chemo and radiation and she looked good, obviously there just for a followup. When the tech called me back to draw the usual bloodwork tears spilled out of my eyes. My experience was nothing compared to what these women had or would be going through. How blessed that my cancer was caught so early.

Two years out from treatment I still puzzle over whether I really needed treatment at all -- radiation and tamoxifen. I still don't think they know enough and treatment for non-invasive DCIS is still controversial. And now my latest predicament makes me wonder that all the more.

During my visit with the medical oncologist, I casually mentioned to him that I'd had some pain off and on in my right calf for about six weeks. It wasn't major. Although six weeks ago I did have some very uncomfortable right foot pain, which I attributed to wearing a new pair of sandals four days in a row. During the time I was trying to get over that I did experience some pain in my calf and hamstring, but thought that was from the limping I was doing.

My oncologist took a tape measure and measured my calves, which have never seemed to have been swollen (although I have a hard time know what is "swollen" for my legs -- kinda hard to get the vision of elephantitis out of my head -- like if the legs do not look like that maybe they are not swollen!). He said that he doubted there was a blood clot (no swelling, redness or heat), he would still have me run over to the vascular lab at the hospital for an ultrasound since I've been taking tamoxifen for 26 months.

So on my way over there I thought here is probably a perfect example of mentioning something to a doctor and then they feel obligated to run a test, more for their own protection than anything else. I prayed that if there was anything to find it would be found. And, sure enough, the ultrasound found a small deep vein thrombosis in my right calf.

I was sent back over to the oncologist office. He had consulted with a vascular surgeon while waiting on me and both agreed that blood thinners should be tried before surgery. The oncologist told me that without any other data, they have to assume the tamoxifen caused the clot, and therefore he was taking me off of tamoxifen.

That was a little stunning. Although I had not really wanted to go on tamoxifen anyway, here my "safety net" was being taken away with me having less than half of the five-year dosage I was to have taken. The doctor said I would have to be put on something else, but then he told me I would be on Coumedin for three months. Three months! That kind of threw me too. And not only that, for the next several days I also have to inject another blood thinner subcutaneously in my stomach area. Nineteen vials of blood were drawn for a large panel which I think is to try to determine if there is anything else about my blood that will indicate another possible cause for the clot.
I return on Tuesday for more bloodwork to see if the Coumedin has kicked in and I can go off the injections.

Overall I feel like saying Whoa! Like I've been thrown off a horse I had grown accustomed to riding.

And I have begun thinking those same thoughts I did when I was first diagnosed with DCIS: Did I really need all that treatment? My lumpectomy had large, clear margins. I'm fairly certain the DCIS that was found with new calcifications on my mammo in Oct. 2008 was removed with the biopsy that led to the diagnosis. I went through six weeks of radiation, and thankfully have healed beautifully. I know some other women who have all kinds of problems with radiation. None of my side effects were unsual and I took very good care of my breast during treatment, using liberal amounts of aloe vera and ointments to keep the skin soft. There was pain, but it was manageable.

And I have had a pretty good run of it on tamoxifen. My periods stopped, but I've had mostly seasonal hot flashes, which I experienced before tamoxifen. I think one of my biggest complaints would be the weight gain and dryness. I was aware of the potential for uterine cancer and blood clots while on tamoxifen. But I understood blood clots to be a "rare" side effect. Now, I have to be on blood thinner for three months, with its attendant side effects. And I guess I'm now feeling a little ticked off that tamoxifen led to me having to experience this. On the other hand, I'm thankful the clot is small and it is a good thing it is below the knee.

But now, I also have to do more research, as I did when I was first diagnosed with DCIS. The doctor said I would be put on something else, but didn't say what. Now I have to research other drugs being used to serve as anti-recurrence drugs in women with DCIS. I talked to another oncologist yesterday who mentioned several drugs, an injection, or the possibility of having my ovaries removed to eliminate the production of estrogen. There is an injection that eliminates the conversion of cholesterol into estrogen that occurs in women's bodies.

So, that's where it stands. Do I really need to take another anti-cancer drug? I realize my comedo variety DCIS was considered to be more aggressive. I have no idea if my periods will resume or if I am in "true" menopause. I hope and pray that research on DCIS will advance to a level that they will be able to discover that those of us diagnosed with it do not need nearly as much treatment as we are having to submit our bodies to, with all the attendant risks of side effects.

One year ago -- DCIS anniversary

2009-10-20T20:32:00.008-07:00

Time flies and thank goodness it does. Today marks a year since I received the diagnosis from my surgeon that I had comedo type Ductal Carcinoma In Situ.

It's been 10 months since the lumpectomy, eight months since my radiation treatments ended and seven months since I started taking tamoxifen. I had a breast MRI last week which my radiation oncologist described as "beautiful." (It also showed I have a hiatal hernia.) I had a mammogram in May and nothing looked amiss. I'll have another one next month on the treated breast only. I'm seeing the medical oncologist every three months and am taking 4,000 IUs of vitamin D a day to bring up my blood level of that.

I'm so thankful that the initial shock, the research, the testing, the surgery and treatments are behind me. I will always remember driving home that beautiful October afternoon trying to absorb the news. And that's the most important thing someone newly diagnosed with this should remember: Life goes on. This too shall pass.

I'm grateful to God that I got out of treatment relatively unscathed. I have some rib tenderness from time to time due to the radiation, but hopefully that will disappear completely. I've had a little adjustment at times to tamoxifen. It has pushed me into menopause, but the hot flashes aren't nearly as bad as I've heard some women going through menopause without tamoxifen describe. I certainly don't have as much acne as I used to.

I have to admit I still experience frustration sometimes over the lack of knowledge about non-invasive DCIS and the fact that I had to go through radiation when I think it is possible that I really didn't have to. The science just isn't there yet. I'm still glad I chose the course of treatment I did over mastectomy.

This time last year my head was spinning. I am hoping "lightning" won't strike twice. I have every reason to believe it won't. And so many reasons to be thankful. I know some wonderful people who have lost loved ones to cancer this year. I sometimes still feel weird about the tiny bit I had that was caught so early. Sort of the "zygote" of cancers. I wish the wonderful people who have passed on had been as fortunate to have their cancers caught earlier. In July I took a meal to a young woman with very young children who was undergoing chemotherapy and radiation following a double mastectomy for invasive breast cancer. She is so beautiful and such a fighter. She has a lot to live for.

So, as you are bombarded with lots of pink ribbons on every product imaginable this month, remember that for some of those products, there is a portion of money that goes to funding research.

I pray for those fighting the battle and for God to remind me every day how incredibly blessed I am to be cancer free!

(The photos I took on February 13, the last day of my six weeks of radiation treatments. The thing with bars hanging down from the radiation machine was for giving me the "boost" treatment the last five days.)

"Feel brave all the time"

2009-06-03T10:27:00.002-07:00

A 10-year-old diagnosed with a rare form of adult breast cancer. My prayers are with you Hannah! Fight, fight, fight! Watch ABC's video. Read more about her type of cancer and doctor's comments here.

Follow Hannah's progress at the Sweet Pea blog.

Wham, bam, thank you mammogram

2009-05-12T18:12:00.003-07:00

Today was the six-month followup mammogram following my December lumpectomy for Ductal Carcinoma In Situ. The radiologist said everything looked good, so I am thankful for that!

I'm surprised it didn't hurt more, but I don't think this tech compressed as tightly as some others, so here's hoping the images were a true reflection. I prayed that it would be accurate, so I trust that it was. Magnifications were taken of the diagnosed breast, known as the ipsilateral breast, or as I call it, the breast I rode in on. Ipsilateral is such a fun word to say, however.

A different tech came out later to tell me the radiologist thought everything looked fine, and that I would not have another mammogram for a year, which of course contradicts what I've been told by two other doctors -- that I would have a mammogram every six months for two years following the DCIS diagnosis.

I didn't feel nervous about today's scans. I don't know as I've ever felt nervous about getting a mammogram. I just hope they do a good job. I almost felt like telling the tech, "I can take more" when she was squishing my breast. Somehow if it doesn't make me wince I don't feel like they are compressing enough. Afterward, I picked up my refill for tamoxifen, shopped at Trader Joe's, and came home, just like a normal person. Thank you, God, for good old boring normal.

Tickled Pink: Tucson's Susan G. Komen Race for the Cure

2009-04-20T21:19:00.023-07:00

April 19 was a beautiful day in many ways. The weather was perfect, the turnout at Reid Park for the 11th Annual Susan G. Komen Race for the Cure was impressive, the mood was jubilant, and most of us attending were in the pink. The morning air was chilly, but once the sun rose it warmed up enough to cast off my jacket.

My husband and I parked at a nearby mall and took the shuttle to the park where there were many friendly and helpful volunteers. We hadn't been to Reid Park in years, and the maps provided helped navigate us to the starting point of the one-mile non-competitive walk that began at 7 a.m. We had arrived at about 6 a.m., and had time to peruse several of the many booths set up and enjoy a free cup of coffee. There were also free yogurt, fruit, bottled water and Tucson's own eegee's frozen fruit drinks to be had.

The lovely Martha Vazquez, anchorwoman at the NBC affiliate KVOA and this year's honorary chair of the race, got things started. I was hoping to meet Martha, I really enjoy watching her. She seems so nice.

This was the first time I had attended a Race for the Cure. I wonder why they don't hold them on Saturdays. Maybe because they close the streets around the park and they figure there won't be as much traffic to hold up on a Sunday morning. But if El Tour de Tucson can be held on a Saturday, why not the Race for the Cure?

It is estimated that around 14,000 participated. If I do it next year I may walk the 5K walk instead of the one-mile. I really like this photo at the right that I took while walking. I like how the long shadows of the walkers stretch ahead of me as we head east on 22nd Street. Ladies wearing pink T-shirts are breast cancer survivors. Technically I could have worn a pink shirt, but I didn't feel "qualified" having had non-invasive, Stage 0 Ductal Carcinoma In Situ. Some of the women had elaborate accessories, making a real costume out of their attire. That added to the fun.

Also adding to the fun were the volunteers who cheered us on in our "arduous" one-mile journey.

There were both "in celebration of" and "in memory of" papers at the event to inscribe. I had already made up a memorial to wear. Thank heaven they provided safety pins to attach them. Who uses safety pins anymore? I think I had just a single one in my house. I put a photo of my mother, whom I wrote a little about in my last post. She had a rather dramatic breast cancer history. I wish she could have attended an event like the race. I had to laugh as I went around to the booths before and after my walk. Area hospitals and cancer treatment centers sponsored booths and there were free trinkets. Mom would have loved that! It reminded me of the Appalachian District Fair of my youth. Mom liked to go to all the booths at the fair. Later on, after she had become handicapped from metasticized breast cancer, she fussed at me on night when I had gone on a date to the fair and had not brought home any free junk from the booths. "Do we really need another pencil?" I asked her, and she laughed.

Some people used the freebies in creative ways. This young man, who greeted racers at the finish line of the 5K used the scarf, provided by a car company, and a sheer pink cape (darn, I didn't get one of those!) offered by a beverage company to create an ensemble that an arabian superhero might wear.

After the race/walk, Southern Arizona Komen chapter officials, along with Martha Vazquez and KVOA's Kristi Tedesco, recognized teams and individuals who raised the most money. Then survivors were invited to take the stage. They walked down the hill toward the stage in a line, connected by a pink ribbon. It was very moving. On stage they waved pompoms and danced to Gloria Gaynor's "I Will Survive," and Melissa Etheridge's "I Run For Life." On the stage there was an empty white chair symbolizing those who had lost their battles with breast cancer.

At one point, once every one was on stage (and there were a couple of male breast cancer survivors as well, possibly more), white doves were released and Lord have mercy, that was a powerful moment!
I don't know if you can see the doves in this photo. If you click on it you can see them as white specks against the brilliantly blue Arizona sky.

My sweetie and I then left the park, and headed for lunch at the Tohono Chul Tearoom, where we saw a few other Komen participants.

I just had to shoot the line waiting for a restroom at the event. Fortunately there were a lot of porto-potties, but not located near the stage. Breast cancer may get cured in our lifetimes, but we'll still have to wait in line to winky-tink.

Although the final tally hasn't been reported yet, it is estimated over $1 million was raised. I won't forget how packed the street was at the starting line for the 5K race/walk. This woman held up an encouraging sign for those finishing the 5K race. Thank you, Tucson! Let us not live in fear.

Life is sweet! (Lemon cheesecake at Tohono Chul Tearoom.)

Hello again

2009-04-17T15:38:00.009-07:00

I feel like a (dare I say it?) boob for not keeping up this blog. I know I am not alone in this, as a few other bloggers I stumbled upon after my diagnosis with DCIS last October have not kept up weekly with their blogs either. And I can understand why. After a while, you're tired of thinking about it.

Deciding on a treatment, and treatment itself, is very taxing mentally and emotionally. At some point you just want to feel "normal" again. Or what passes for normal, as I often say. There are a myriad of things that demand our time, and then there is the mental vacation of thinking about other things besides side effects, possibility of recurrence and dealing with doctors (and their office staffs ... oy).

Spring has been full with varied pleasant activities where I live in Tucson, and I have been glad for that. I've enjoyed excursions to botanical gardens (Reminder to self: Do go visit the Chihuly exhibit at Phoenix Botanical Gardens before it closes!), Diamondbacks spring training, some live music, an incredibly wonderful book festival, and planting a vegetable plot with Tucson Community Gardens.

I've enjoyed spring so much (except for the near-constant wind) that I was unprepared for the little wave of emotion that washed over me last Saturday when my Susan G. Komen Race for the Cure T-shirt and "race bib" arrived in the mail. (My husband and I are not racing, but doing the one-mile walk.) As I held up the shirt before me, admiring its design, tears began to roll down my cheeks.

I smiled at my husband as he walked over to me with that concerned look on his face that says, Good Lord, she's crying again, and told him, "I never thought that the first time I would walk in a Susan G. Komen walk that I would have had breast cancer!" I had thought of participating in the walk for years, but had never fully investigated it partly because it is usually held on Sunday morning in Tucson. But now, they even have a category where you can "sleep in" for it if you wanted!

So I hope I'm not a blubbering idiot on Sunday. My dear mother will be on my mind, of course. I'll walk in memory of her and her courageous (and victorious) battle against metasticized breast cancer in the 1970s. After she completed five years of chemotherapy in 1979, she lived cancer free for nearly 15 years before cancer presented on the floor of her mouth (despite not being a tobacco user and not a drinker). She fought the good fight.

I will have in my mind several women whose blogs I ran across during research following my diagnosis in October. I have not followed their blogs very closely in the past couple of months, but nevertheless they have been on my mind. So to Amanda, Jo Ann, Netherfieldmom, Jenni (wherever you are) at Ride A Bike, Nancy, Denise, and Lisa at CatholicMom, this mile's for you!

Next Monday will mark six months already since I was diagnosed. I see the oncologist a week from today for bloodwork to see how my liver is doing on tamoxifen. I started taking the drug on March 14. So far, so good I guess. No hot flashes. But, I did have a very trying week last week, awaking on Monday feeling incredibly anxious, a feeling that lasted and intensified all day, then lingered in various levels for the remainder of the week. It seems that tamoxifen is going to exacerbate PMS symptoms. Joy! I hope, since I do not experience PMS every month, that this intensification of those symptoms will be sporadic as well. My oncologist prescribed .5 mg of Xanax, but I don't think I can take that stuff. It put me to sleep, even after I cut the tab in half. I don't want to go to sleep. I just want to take the edge off when the PMS is acute. I've sometimes had a glass of wine in the past when I've had "regular" PMS (which usually has been crazy-making in itself), but I don't feel like drinking wine at 9 a.m.!! That's a little Valley of the Dolls-ish for me. So when I see him next week I'll ask if I can try something else.

My husband and I have to be at the park very early on Sunday to participate in the walk. So that will kind of remind me of going to Balloon Fiesta in Albuquerque. It's a good thing it's so early because various forecasts predict a high in the low 90s. I'll be taking my camera, so some day I'll post pictures, along with radiation photos I took in February. My radiation oncologist thinks I've healed beautifully from the treatment. I get my six-month followup mammogram next month. My energy (or what I have of it -- LOL), returned within a matter of weeks after radiation treatment ended. I have just a little swelling of the areola and occasional sharp pains, but that's it. I couldn't be more pleased with how it looks, even though it is a tad smaller than it already was as compared to the contralateral breast. When I mentioned that with a group of friends recently (most of them 15 to 25 years older than I), one said, "Well, just stuff your bra! It'll make you feel young again."

If you are new to this blog, you can begin my journey with these posts:
Busted!
Comedo Tomorrow, Comedo Tonight!
Tumbling Tumbleweeds

My DCIS was "caught" by annual mammogram. That wonderful technology that medical science has yet to catch up to. My path read as follows:
RIGHT BREAST MASS, CORE BIOPSIES, WITH CALCIFICATION: CORES OF BREAST PARENCHYMA WITH FOCI OF DUCTAL CARCINOMA IN-SITU, CRIBRIFORM TYPE, WITH CENTRAL NECROSIS, HIGH NUCLEAR GRADE (COMEDO CARCINOMA). ESTROGEN AND PROGESTERONE RECEPTOR POSITIVE. Although my receptor positivity is on the low end of the scale. I asked my medical oncologist if there were any studies of groups of women comparing tamoxifen benefit on those with low receptivity versus high scale receptivity and apparently there hasn't been. He couldn't answer if my being low on the scale meant that my body might not utilize tamoxifen as well as a woman who was high on the scale.

Anyway, more on tamoxifen later. A lovely spring late afternoon beckons. We've had unseasonably cool temperatures the last couple of days. Only in the 60s yesterday and that will be the last of that until maybe late October at the earliest, if we're lucky. Mid 90s forecast by middle of next week. Will my tamoxifen hot flashes coincide with triple digit summer desert temps? Sigh. Oh well, at least I got my radiation treatments over in the winter. About the third week in, when it got too uncomfortable to wear even the loosest of bras, I simply went without. Thankfully it gets cold enough even in Tucson in the winter to wear a jacket, so I could hide behind that and not scare the horses. Relish the small favors!

First and third photos taken at Boyce Thompson Arboretum, and the middle photo of the ice plant taken at Tucson Botanical Gardens.

Lean Hard

2009-02-25T10:18:00.003-07:00

I am almost two weeks out from the end of my radiation treatment. At this point, the area of breast that received the "boost" treatment is still pink, but the skin on the rest of the treated area is fading to a very light tan. The skin does not resembled the brown color that I remember my mother's hip having following her radiation for metasticized breast cancer in the 1970s.

My radiation oncologist told me the last week I saw her that for three days after treatment ended I could expect the itching to become more severe. Instead, about two days before treatment ended, itching stopped and has not resumed! She also said that the skin would peel, and aside from just a tiny bit of peeling on the areola, I would be very surprised if any other treated skin peels. Of course, I'm still keeping the area lubricated twice a day with an aloe vera gel and Aquaphor. There is no sign of impending peeling at all. There is minimal sporadic pain. Sometimes a brief, sharp pain. My doctor said that was a sign of healing. (Heh. It's not that I don't believe that, but sometimes when doctors say these kinds of things it is hard not to laugh.)

The power of prayer

There have been a lot of prayers raised up for me by many people in various parts of the country during my treatment and I am very grateful to God. I believe my side effects to have been minimal. The Sunday before my radiation treatment was to start, the church I attend gave an opportunity after the worship service for anyone who wanted to be prayed for by an elder of the church to do so. Feeling a little sheepish, I decided to take advantage of that offer. I say sheepish because I still find it difficult to get my mind around the fact that I was diagnosed with cancer. The fact that it was like a "flick" of cancer makes that even more challenging, as I wrote about in my first post.

Although I certainly can't confirm this, of course, I believe that between the stereotactic biopsy that led to the diagnosis of Ductal Carcinoma In Situ in my right breast, and the December lumpectomy that revealed wide, clear margins, there was no remaining DCIS in my breast at the beginning of radiation. But, because there was no way to confirm any other areas of undetected DCIS, and radiation treatment would destroy any other spots of it (or is designed to anyway), I went through with it. So the prayer I wanted was for the radiation treatment to not cause side effects that I could not handle, or to not create any of the rare side effects to the small area of lung that would also end up being irradiated (scarring or lung cancer), or to my ribs (weakness in bone), or the risk of creating a sarcoma.

There were several people wanting prayer that day, and my husband and I stood in line. It was one of the most humbling moments of my life, and yet I knew how blessed I was to be in the position I was in -- Stage 0!! I still have to shake my head even typing that. It almost seems absurd. As the minutes ticked by I wondered if I really "deserved" to be there and felt like I was just adding to the delay he was having in being able to go eat lunch. Haha. I imagine he did not feel that way.

When it was finally our turn, the elder listened patiently as I told him why I was there. Oil is used to anoint the supplicant as a symbol of Christ's power and grace. He made the sign of the cross in olive oil on my forehead and then put his hands on mine and my husband's arms and we placed ours on his. I cannot tell you how blessed, how comforting it was to be prayed for in this way. I had tears rolling down my cheeks toward the end of it and I walked away feeling relieved and refreshed. And I praise God for the ministry of prayer. Through Christ I can boldly approach his throne of grace and ask.

Lessons learned
I continue to be grateful and humbled. I have read blogs written by other women diagnosed with DCIS and some of them have faced different diagnoses. Some have had lumpectomies, only to have to undergo re-excisions because the margins were not clear. Some have gone into surgery for DCIS, only to also find invasive cancer. When my surgeon approached my husband in the waiting room on Dec. 2, she told him that atypical cells had been found, but she didn't want to speculate more until the pathology report came back. As it turned out, those atypical cells were hyperplasia, not cancer, and it was not found near the margins.

Recently I had the opportunity to give the devotional at a women's Bible study I attend. I told the ladies about how God had sustained me through this diagnosis and radiation treatment. I told them about how his comfort had given me strength when the memories of my mother's suffering flooded into my mind almost immediately after my surgeon gave me the diagnosis. As humans, it is difficult for us to not compare ourselves to others. Sometimes comparing can be a good thing, but sometimes it can take the focus off of what we are experiencing.

I told the ladies that I had gotten a strong "impression" from God during the early weeks of my diagnosis to pay attention. I'm not a Christian who goes around saying, "God told me this .. " and "God told me that ... " because I find it difficult most of the time to decipher exactly what God might be instructing me to do apart from what is his will as is already revealed in scripture. I'm leery of trying to put a stamp of "God's will" on things I might already be inclined to do just so I can feel "safe" or justified about it. (I tend to recall this scripture a lot!) But it seemed to me that God was impressing upon me to not be distracted by painful memories of my mother's cancers or other women's DCIS diagnoses because he had allowed this tiny bit of cancer to be discovered in me and he didn't want me to miss this experience he had allowed me to have. That probably doesn't make sense to some (or all) of you. If I would dwell too much on my Mom or others, I would shortchange my experience of walking with God through this. I would shortchange my time of experiencing, if you will, a tiny foretaste of death and walking with God through it.

Even this confounding Stage 0 cancer I was diagnosed with is a reminder of what I already know: that unless Christ returns first, someday I will experience my body dying. So, this DCIS, coupled with the fact that I will turn 50 this year, heightens that realization. And, it makes me really glad I'm not onmniscient! Haha. I don't want to know how I will die. And I don't have to speculate because I know my loving and gracious Heavenly Father has already seen the moment pass under his gaze. I heard someone explain God's vision in this way. Time is like a parade. We are standing at one point and cannot see all of the parade, but God can -- the beginning and the end. Because I believe my God to have my best interests at heart, I can trust him with whatever happens. I have this written in the front of my Bible. I forget where it came from: "No experience in my life will ever cancel the reality of the cross."

Am I saying I have no fear? Absolutely not. Fear is natural. Christ experienced dread while facing his impending torture and death. But I am free from dwelling in fear. I had a few fears before going into surgery in December. At one point, because it had been years since I'd been sedated, I thought that I could have a heart attack on the operating table. (The reason I imagined this is because a few years ago a dentist ineptly injected a numbing agent including epinephrin into my bloodstream and my heart went berserk with rapid beating. It was like a major panic attack.) I had to release that fear to God. While I was being prepped, a nurse, technician or whatever she was, replied when I told her that I was allergic to Demerol that "Oh, it's different now [than from when I discovered I was allergic to Demerol following my first breast biopsy in 1979]. They put other drugs with it to control nausea." I immediately tensed up. Did this mean they were definitely going to give me Demerol?? Sure, I was open to the fact that it might be "all different now," and they might have figured out a way to keep me from puking my guts out after the surgery while holding onto my painful breast, but, but, I'M STILL ALLERGIC TO DEMEROL! Fortunately, the anesthesiologist was lurking nearby and when he questioned me about my allergies he said, "Don't worry, we're not going to give you Demerol." R E L I E F. I laugh about it now, but chalk it up to one of those wacky medical experiences where someone babbles on about something she just should have left unsaid.

Yesterday I made the appointment for my followup mammogram in May. Sure, now that I've had this diagnosis I will regard these exams as even more important than before. But I won't be afraid. I refuse! I'm choosing to believe I will not have cancer again. But, even if I did, I can handle it -- because of my faithful Lord. Last week I shared a poem called "Lean Hard" with the ladies at my Bible study that someone had given me a couple of years ago. It reminds me what to do when I do feel fear. I will be remembering its message when I have my first appointment with a medical oncologist next week to talk about taking the anti-cancer drug Tamoxifen (and the side effects I could face from that.) I printed the poem in a post at my other blog. I'm happy to say that the best side effect of this DCIS diagnosis has been an even closer walk with my Lord. For that, I am grateful to have had cancer!

If you are new to Busted!

2009-02-18T14:18:00.005-07:00

Hi there!

If you have recently stumbled upon this blog, or were referred here by somebody, welcome, and I'm sorry! Posting has been light due to, simply, radiation-induced fatigue, and dealing with other pressing matters. I can think of five things right now I should be doing. Including getting some yardwork done while the gentle Tucson winter sun shines. Or perhaps just sitting out there wrapped in a throw while watching the birds. Being diagnosed with cancer makes you think about the way you spend your time.

If you have come here because you are newly diagnosed with DCIS, then it is likely you have already made some treatment plans, or else you are deciding. My thoughts and prayers are with you, whoever you are. Trying to decide which route of treatment to take was one of the most challenging things I've ever had to accomplish. Once you've decided which option is best for you, it will feel soooooo good just to be finished with deciding!!

When I was diagnosed in October, one of the first things I did upon arriving home was to start researching. On the Internet, I found information that was both helpful and vexing. You will too. Like my surgeon told me, "The good news is you have choices, and the bad news is you have choices." The good news is there are treatments available for this Stage 0 cancer, and the bad news is that medical science hasn't quite caught up to the improved technology in detecting signs of cancer. And the maddening truth is that for those of us whose DCIS was "caught" by new calcifications showing up on a mammogram, we can think of others whose invasive cancer tumors were somehow not caught early enough by the very same technology! Talk about a weird sense of "survivor's guilt," and I still don't even know if I can truly say of myself that I am a "cancer survivor." Stage 0??? Non-invasive??? "Survivor, interrupted?" It's weird, yes. But, on the other hand (I need a few more hands!), I'm so grateful to be in this weird state. I've seen up close the alternative.

Here are some websites that helped me as I began searching for information to help me make my decision.

I really liked DCISinfo. I found a wealth of information on this site that I thought was well-explained. The section on Understanding Risk is especially helpful. It was also from information on this website that I decided upon diagnosis to have a second opinion done on the biopsy slides themselves. After all, the pathology report from my biopsy was what every other doctor I saw was going to be working off of. It is your right as a patient to have any second opinion on any aspect of your diagnosis or potential treatment that you wish. There was just a little of what I might call "mild protesting" on the part of my surgeon's office when I said I wanted a second opinion, but after some more local researching and phone calling on my part, it was done. I decided I not only wanted a second opinion but one from a pathologist who was not in any way connected to the lab where the first pathology was done. The second pathologist came to the same conclusions as the first pathologist. If he hadn't, then I would have sought a third pathologist to examine the biopsy slides.

Of course there is the venerable breast cancer crusader, Dr. Susan Love. You can do a search here on DCIS. The site also links to the latest news on aspects of cancer research, such as this article which appeared in the New York Times recently on the dubious benefits of vitamin supplements.

Health Crossroads had some interesting information.

When you come across articles like this one, whether from a medical journal or not, you need to pay attention to the date of the article. It could be more current findings have made some statements outdated. One of the best things about doing research is that it helped me to think of questions to ask my doctors. This was dated material, but interesting (and somewhat vexing) nonetheless.

It's important to try to understand risk. There are many factors involved, and sometimes doctors will explain risk in terms of comparing groups of subjects involved in DCIS studies, instead of presenting your individual risk of recurrence.

You may be recommended for genetic testing for the BRAC1 and BRAC2 breast cancer gene mutations if you have had a family member diagnosed with breast cancer. This page on the National Cancer Institute website was helpful.

A DCIS search on BreastCancer.org will yield a lot of reading.

Here's something I found on breast irradiation treatment.

The Johns Hopkins Breast Center has a wealth of information, and there is an Ask An Expert forum on which you can post questions relating to your diagnosis. I also spent a great deal of time in November looking at their Artemis newsletter backlog.

That should be enough for now. Once I had done a bunch of research, and as I struggled with the options, I did a Google blog search and found several women blogging on thier cancer. I was wishing I had someone I could talk to who had been through the exact same diagnosis. Some bloggers were first diagnosed with DCIS, but then surgery discovered invasive cancer as well. Reading some of these blogs was helpful, and sometimes it was scary. It could be easy to let a blogger who is struggling with side effects of whatever treatment she chose sway your decision. Only you know what you are willing to go through and how well you can live with whatever decision you make.

I've had relatives and friends who have had to make difficult decisions regarding various medical procedures. I have counseled others to find out all they can, pray about it, make the decision, go through the decision, and then I would tell them that the most important thing was not to look back. And now I can say that that is more easily said than done! :-) But I still believe it. As I write this, I have finished six weeks of radiation treatment following a lumpectomy in December. In a couple of weeks I will have an appointment with a medical oncologist to talk about getting on Tamoxifen. I feel confident about the decision I made. The outcome for lumpectomy with radiation is close to that of mastectomy. The Tamoxifen should help with preventing recurrence in both the ipsilateral and contralateral breast. When I finally decided in November, the week before Thanksgiving, at that point in time I just could not see myself going through mastectomy with breast reconstruction. Later on I'll blog more about my decision. But for now I've caught up just a little, and posted some sites where I found information helpful to me.

If you are in the midst of deciding what to do about your diagnosis of DCIS I pray you get all the information you need, feel comfortable with your doctors, and know that this blogger is thinking about you as you weigh your options.

To find out how it started for me, go here:

Busted!
Comedo tomorrow, comedo tonight!
Tumbling tumbleweeds

And remember: This blog is a chronicle of my experiences following diagnosis of Ductal Carcinoma In Situ. It is written as personal reflection, and although I will link to information I've found on DCIS, anything published here is not meant to replace or even augment information or advice you would receive from physicians regarding your own or others' DCIS diagnoses. You may leave comments at LW1959ATgmailDOTcom.

Week Three

2009-01-23T14:39:00.003-07:00

Skipping ahead again. I don't have the energy right now to finish with backstory. Today I completed my third week of radiation treatment. I love the weekends! (Three more weeks to go!)

This morning I lay there in the dark thinking about how much I didn't want to get out of bed. I reminded myself that tomorrow I could sleep in. The predictions that were given me at the beginning of this are coming true. I'm seeing more redness now, like a sunburn, and indeed, I have felt more tired this week. Although I have to wonder just how much of that is due to radiation. I hit the wall Wednesday night as I was trying to make dinner. I was not enthusiastic about what I was making, but I needed to eat. It didn't turn out very well (pasta primavera over whole wheat spaghetti -- how can that be messed up? when there's not enough sauce!), and while trying to get the kitchen cleaned up I bottomed out and knew I needed to just go to bed before I fell down. I slid between the sheets at 8 p.m.

I'm thinking of napping right now. That is so hard for me to do. I'm afraid sleeping now will keep me awake tonight. It seems like such a useless thing to do. The patient education sheet they gave me on radiation side effects says "During radiation therapy treatment, the body uses a great deal of energy." (Then why am I gaining weight instead of losing it???) "Stress related to illness, daily trips for treatment, the effects of radiation on normal cells -- all contribute to fatigue. Some people feel unusually tired after a few weeks of therapy or after completion of all treatment. For some, the increased fatigue causes mood swings, feeling emotionally high one moment and sad and low the next. Feelings of tiredness or weakness can be profound at times and will gradally subside after your treatment is finished, taking anywhere from 6 - 12 weeks."

Six to 12 weeks. Oof! Here's hoping mine won't last that long.

A peaceful musical interlude is in order, don't you think? Here is the incomparable singer/songwriter Gino Vannelli accompanied by the talented Dutch jazz pianist Michiel Borstlap. Savor.

The gene-y in the bottle?

2009-01-07T17:26:00.002-07:00

Probably not, but this article on the identification of a gene that contributes to the metastasis of breast cancer has promising implications for dealing with both breast and prostate cancers.

Meanwhile the clock ticks.

"This is not prime time yet and it may never get to prime time ... This is the type of stuff that gives one hope we're making progress in the war on breast cancer. But it's the beginning and hypothesis-generating ... not hypothesis-proving."

Comedo tomorrow, comedo tonight!

2009-01-05T19:31:00.008-07:00

Picking up from the end of my first post, the October afternoon my surgeon gave me the results of the stereotactic biopsy was one of those sunny blue-skies-smiling-at-me days that Tucson is famous for. One of those days that bad news is the furtherest thing from your mind.

I drove home, alternately saying aloud, "Wow" and "Okay, Lord." It was difficult to articulate beyond that. My "two young roes," now a couple of middle-aged goats (and one of which was an "evil twin!"), were reaching the culmination of years spent being "at risk."

Several years ago, Nike ran an ad featuring a photograph of a woman and her look-alike daughter with the line: "You don't have to be your mother." I had watched my mother deal with the ravages of cancer and the ravages of cancer treatment since I was ten years old until I was 36, when she died. In the back of my mind, I had wondered if I would end up the same way. The year I turned 41 was intense for me as that is the age my mother was when she had a mastectomy for a malignant tumor. Then the years passed and as I mentioned in my first post, I began to allow myself to think I might not ever have cancer, even though I had the additional risk factors of never having given birth, and of having had numerous breast biopsies.

One of the first thoughts I had when my doctor gave me the news was how much I dreaded having to tell my sister, my only sibling. Now she had two first-degree relatives with breast cancer. She had spoken several times of having bilateral prophylactic mastectomies to eliminate her risk. Would this diagnosis propel her to finalize that decision?

When I got home, I entered as usual through the garage into the kitchen where the afternoon light was filtering in through the west-facing window of the den. There were the familiar piles of clutter on the breakfast bar and table, the familiar silence of a kitty-less house that I'd grown accustomed to since having to euthanize my 16-year-old calico "talker" in 2006 (for cancer, incidentally). Everything looked the same as when I'd left it, but everything was different, and before I could stop it the words rushed out of my mouth: "I wish I could turn back the clock to before the appointment."

I knew I had to call my husband, but I hated to give him the news while he was at work. His job had been quite demanding lately, with him having to work overtime, sometimes not getting home until after 9 p.m. I went to the computer and began researching, when I remembered that a friend from high school, with whom I'd reconnected in the past year, had written that she had been diagnosed with something similar. I found her letter (her's is Lobular Carcinoma In Situ) and then wrote her a quick email. Knowing my husband would probably be calling me soon if I didn't reach him first, I dragged myself to the phone.

Have you ever tried to sound upbeat about something you were completely disappointed about?

"Well, I think I'm okay ..." I began, then gave him the details.

"I'm going to wrap up here and come home," he said.

Relief.

While I waited for him to arrive I continued to Google words from my pathology report, not liking what I was finding, especially the description of this "comedo" aspect of the DCIS. Even though DCIS is considered Stage 0 cancer, non-invasive, there are still differing characteristics that can determine its severity and possible likelihood of metasticizing. Apparently I had the "high octane" variety. The kind that might go "vroom-vroom" if it could.

I realized "comedo" is one letter away from comedy, but I was having trouble finding the humor. This website had much useful information about pathology:

"Comedo type DCIS. Comedo looks and acts differently from other in situ subtypes. Comedo tends to be slightly more aggressive than other forms of DCIS. These cells are closer to invasive breast cancer cells in how they look and behave than other forms of DCIS. Comedo cells look different under the microscope because the center of the duct is plugged with dead cellular debris, known as necrosis. Necrosis seen under a microscope in DCIS usually means that the cells are fast-growing and are generally more aggressive or high-grade. Also, microcalcifications (small abnormal calcium deposits) are frequently seen in the areas of necrosis."

Not nice. Yet, not invasive. Again, how to feel about this stuff, this Stage 0 cancer with dreams of something more?

When my husband came into the room his first words were, "I'm sorry," which I felt glad to hear, considering I had noted that my surgeon had not said that when she gave me the news. Do doctors not say that anymore? Or is that sentiment (however faked it might be) reserved for patients with "real" cancer?

We hugged. I was still too stunned to cry. And then, like the two former journalists that we are, we recommenced to Internet research. He ordered a book that evening, which I now refer to as "My Big Book of DCIS," and we laughed about wagging it to the appointment with the radiation (RADIATION!!) oncologist. I'd be AWI ("armed with information") for sure striding into her office with that 573-page thing.

I went to bed that night and managed to sleep somehow. The next morning as I was getting ready for my Bible study class the phone began ringing. It was the radiation oncologist's office wanting more information and to schedule an appointment. No flies on her! When I got off the phone with her, there were two messages, one from the surgeon's office and another from the radiology center. Suddenly I was popular, but obscurity had never looked so appealing.

Dealing with the phone calls made me late for class, and they were finishing up as I entered. There was little time left for prayer requests, and I hastily told the group of ladies that I had been diagnosed with what was considered early stage breast cancer and that I had to decide between mastectomy with breast reconstruction or lumpectomy with radiation. (Way to crash a party!) The leader of the group said, "May we lay hands on you to pray?"

"Sure!" I said. And those dear ladies came over and put their hands on my shoulders and arms and prayed over me. What a blessing. We headed downstairs for the video portion of our study, Beth Moore's "Jesus, The One and Only," and her comments spoke to me in so many ways. The focus was on the Sermon on the Mount, and she set the scene of that famous delivery of Christ.

"Jesus went throughout Galilee, teaching in their synagogues, preaching the good news of the kingdom, and healing every disease and sickness among the people. News about him spread all over Syria, and people brought to him all who were ill with various diseases, those suffering severe pain, the demon-possessed, those having seizures, and the paralyzed, and he healed them. Large crowds from Galilee, the Decapolis, Jerusalem, Judea and the region across the Jordan followed him." Matthew 4:23-5:1

Moore said it was as if Jesus was pointing out to his apostles: "Here's your constituency."

"These were sights that would have been stunning to the disciples. That kind of scene of suffering points out that life is not fair. God brought them to that setting so they could see the injustices of life," she said. And into that scene Jesus said, blessed are those who mourn, who are meek, who are persecuted. Moore said Jesus indicated "blessed are they if they trust me through this."

I needed to hear that. I don't deserve God's comfort, but He is gracious to supply. I had hardly begun to absorb my diagnosis when He began to administer His reassuring touch.

Much needed research

2009-01-05T17:57:00.003-07:00

Here is an encouraging article about a new, much-needed study getting under way to help determine which forms of Ductal Carcinoma In Situ are mostly likely to metasticize. It's too late to help me, as I just started my six weeks of radiation treatment today, but I hope the research will help someone down the line to be able to be treated for DCIS with lumpectomy alone.

The Susan G. Komen For The Cure foundation awarded the grant for the study at the University of Pittsburgh. Now you know where some of that fund-raising money goes.

Like I said, it's too late for me. Well, at least for THIS incidence of DCIS. It's possible there could be more in my future. As the article states:

"DCIS represents over 50,000, or 20 percent, of new breast cancer cases each year. While DCIS is considered a stage zero form of cancer because it doesn’t spread beyond the milk ducts, it can be a precursor to other invasive breast cancers."

And we don't need no stinking precursors, do we?? Curse the precursors!

Tumbling tumbleweeds

2008-12-21T22:01:00.003-07:00

Don'tcha just hate it when someone starts a blog, but never updates it? Yeah, me too. I've got a lot of good excuses. I think they are good anyway. And I'm the one with the bum breast, so deal!

Since I last posted, I just haven't felt like updating as I was spending enormous mental energy researching, evaluating and deliberating treatment options for the DCIS diagnosis I introduced below. Throw in waiting for genetic test results and a trip out of town, plus trying to prepare in some way for the Big C (Christmas) while I was comtemplating (and at times avoiding contemplating) the little c, and I felt too constrained to sit in this uncomfortable computer chair that makes my legs hurt to hash it out in print.

It's been a trip.

But, I'll try to catch up with the gory details, which serves as a warning to some of you. If all things cancery and boobular are icky-poo subjects to you, then please, go your merry way. For that matter, if bad puns make you grimace, feel free to move along little dogey, because I am afflicted in more ways than one. There's a zillion blogs in the naked cyber city, and you can have your pick. There's also lots of women blogging about their breast cancer experiences. In fact, as I was trying to decide on a name for this blog, I found one of my ideas taken.* In my research, I was humbled by the stories of so many women who are going through such wretched diagnoses. And I read about women going through invasive cancer treatments who are ticked off at those with the "baby cancer," DCIS. However, I have discovered that while it can be humbling and strangely comforting to know I'm not as "bad off" as some women battling breast cancer, each woman's diagnosis and decision on how to treat it is a uniquely different challenge. And the myriad of emotions one feels at a cancer diagnosis, even a "baby" one, belongs to the patient alone.

So, I will catch up eventually. Not to spoil the nail-biting suspense (LOL), but I did choose the "less-invasive" route of treatment. (However, I don't particularly see that much difference between lumpectomy, radiation and Tamoxifen versus mastectomy with breast reconstruction. Let's face it, it's ALL invasive. I just didn't feel like I was up to such an extensive surgical procedure as mastectomy with breast reconstruction at this time.) I was mapped for radiation this past Friday. The first of 30 treatments start on Jan. 5 (unless the Lord returns before then, and wouldn't THAT be grand!). Which reminds me, if you are not only uncomfortable with anatomical references (both clinical and slang), cancer talk and bad puns, but also with expressions of Christian faith, then you are wished Godspeed.

Before I catch up I hope to get rid of this terrible head cold which has decided to grace me this holiday season. Until then, if you are a woman reading this and you haven't done your monthly BSE, then all hands on deck!! If you haven't had your annual mammogram, make an appointment tomorrow.

*Here's hoping the pretty author of "Tough Titty" is doing well since her last post was in August.

Busted!

2008-11-11T15:34:00.005-07:00

Can anything ever really prepare you for a diagnosis of cancer? Even a "baby" cancer, or "pre-cancer," as it has sometimes been referred to, this Ductal Carcinoma In Situ of the breast?

I mean, it's one thing to know that your chances of breast cancer are increased because your mother had invasive breast cancer at age 41. Or that your chances are increased because you've never had children. Or that your risk increases simply as you age.

It's one thing to have had nine breast biopsies as I have over the past 29 years, three surgical and the rest needle core biopsies. Actually, it had become routine for me, especially in this decade: annual mammogram, and then every couple years I would be recommended for another biopsy. And having relocated numerous times probably didn't help. A new city, a new breast specialist. Another occasion to have to recount my mother's dramatic cancer history, and then watch as the doctor shook his or her head as he or she palpated my chest.

"Your breasts really are lumpy, aren't they?"

I used to joke that perhaps my breasts were the Bermuda Triangle of lost house keys and rolls of film. I faithfully performed my monthly BSE (breast self-examination), and even I shook my head over it. The best I could do was to try to determine if anything felt different or new among all those varied lumps and bumps and thicknesses, some large and some tiny as grains of rice.

On Monday, October 20, I showed up at my surgeon's office for my bi-annual breast exam appointment. Four days prior, I had undergone my ninth breast biopsy in 29 years. My mammogram of October 8 had shown some new calcifications. I was told following the mammogram that they were coarse, but in the minutes before the stereotactic biopsy, I was shown the enlargement views of my right breast, on which I distinguished a linear grouping of fine specks adjacent to the cluster of larger, coarse calcifications. A technician told me that the line of calcified specks were of more concern than the coarse calcifications. She also said that they couldn't know for sure until they were biopsied and that they could very well be benign.

The stereotactic biopsy, which I have always likened to "having your tires rotated," because the patient lies prone on a table with the breast falling through an opening, is a pretty simple affair. Once the patient is more or less comfortably positioned, the table is elevated several feet and the radiologist and technicians work out of sight, underneath the patient. It's not painful. A numbing agent is introduced and x-rays are used to determine the exact focus of location to biopsy. A needle is inserted with a gun-like implement, and then samples are taken through the needle. For future mammographic reference, a small clip is inserted at the close of the procedure to mark where the samples are taken. The worst part is lying still with my head to one side during the entire procedure.

I was told repeatedly before and after the procedure that the pathology results would not be ready by the time I had my appointment with my surgeon four days later. So, when I arrived at my surgeon's office, I was not expecting the nurse to tell me they were awaiting the results to be faxed at any moment. I undressed, put on the little paper jacket and climbed onto the examining table, trying not to perspire, as the room was warm. Minutes ticked by. Another benign biopsy, I assumed.

Following a quiet knock on the exam door, my surgeon breezed in and immediately told me the biopsy had found ductal carcinoma in situ. She put my copy of the pathology report in the chair next to the table. I heard her words, but my mind was spinning, trying to follow what she was saying, as a memory came flooding.

About 12 years earlier, I had done a little research on ductal carcinoma in situ following my first appointment with a breast specialist in another city. And from what I had read in the latter 1990s, I remembered hoping I would never be diagnosed with DCIS, because its treatment was then considered controversial. To some extent it still is.

I struggled to pay attention to what my surgeon was saying. She layed out the treatment options very matter of factly, looking me in the eye as she stood in front of me. I felt cornered. With each option she mentioned, it was like an alarm went off in my head, reminding me of the aye-ooo-ga warning sounds on a submarine. She told me my options were mastectomy with breast reconstruction (MASTECTOMY!), lumpectomy with radiation (RADIATION!) and very likely getting on the drug Tamoxifen (TAMOXIFEN!).

Mastectomy! Radiation! Those are treatments for big-time cancer! I had cancer!

Or did I?

The surgeon explained that the cancer cells in the duct had not spread outside of the milk duct. She also said they could not spread. "It's like the cancer hasn't figured out a way to get out of the duct," she said, which I understood to mean that it weren't for trying!

But I still had to wonder: If the cancer's in a duct, and it can't get out of a duct, then is it a duct? I mean a cancer? Would it indeed be correct to say I had breast cancer?

"Yes and no," my surgeon said. "Yes, because those are cancer cells in there, and no, because it has not spread outside the duct."

Ohhhhhkay ...

At one point, after she went over the pathology report with me and I stared at foreign words like "comedo" and "cribiform," this bizarre news still trying to sink in, and so many memories of my late mother's struggles and sufferings beginning to rise to the surface, I broke down in tears for a few seconds. Silent, my surgeon handed me a tissue, watching me. I quickly recovered, feeling a responsibility to understand everything my surgeon was trying to tell me. Besides, could I really cry over this? I mean, I was lucky, right? It had been caught early! It was only DCIS! It had not spread! I was lucky! I should be grateful! It was stuck in the duct! It couldn't get out! I was lucky! I also still might need to have a MASTECTOMY or RADIATION! Because it was cancer. Sorta, kinda cancer.

Was this really happening? Since the age of 19 I had had eight benign biopsies. My mother had had three benign biopsies before her malignancy at age 41. I was about to turn 49. After eight benign biopsies, countless (well, at this point I've lost count) mammograms and magnifications, and at least six or more surgeons kneading my breasts in various U.S. locales, I had allowed myself in the past couple of years to think this sweet thought: I just might never have cancer after all!

Busted!