Thursday, July 11, 2013

Packing for the Journey


I'm Kay. I'm a mom of 2 and a Nanna of 5, living in Colorado. I paint pictures and write stuff. I'd like to share my experiences with DCIS with you. It's not a long story, but so far, a good one - one that I believe may help someone else if I'll just tell it. So here goes. It all started in late 2008, when my sister-in-law was diagnosed with stage 3B, node-positive breast cancer. My heart ached for her, and I longed for something I could do to help her. Research on her condition brought to light some troubling facts: one in eight (now some say seven) women will be treated for this in their lifetime, and 108 women die from it every day. With those odds, I thought it worth the time to read further, and so I did. What I learned turned into a passion for prevention, for myself and others. I added important supplements and other protocols to my daily health regimen, and continued to read, to keep up with changes. I screened, though less often than recommended, recognizing the value of screening but with (I believe) a healthy aversion to ionized radiation applied anywhere to the body's sensitive tissues, predominantly tender breast tissues. My doctors were comfortable with my protocol of more frequent self (and of course, annual clinical) exams, using mammography only when something was detected. This seemed to work well. But I didn't know that some cancers are only detectable via mammography. They cannot be felt until much later.    

May 6, 2013:  Mammogram
On one of these diagnostic screenings on May 6th of this year, the lump I noticed was of no concern but another (non-palpable) abnormality was discovered instead. A second radiologist's opinion agreed that a biopsy should be done. 

May 16, 2013 - Biopsy
A biopsy was done that day, and yes, it was DCIS, or Ductal Carcinoma in Situ. -Stage Zero breast cancer. When my surgeon called me with the results, it was not a gut-punch. I did not feel faint. I did not fear for my life. Thankfully, I knew well what DCIS was. It was one of the areas of breast cancer care that had intrigued me the most in my five years of study. I knew that the survival rate was extremely good and that the main risk of its treatment was just that- its treatment. Over-treatment, to be exact. -Or under-treatment, for that matter. I'd read numerous articles and blog or forum posts on the difficulty of tailoring care for these patients in the absence of clear prognosis projections. See, the term "in situ" means, "stays in place." In situ cancer is not invasive. When taken out of the milk duct, it hasn't the ability to invade outside tissue. It needs to make further molecular changes to get to that point. And not all in situ cancers will do that. The data gap is: which ones will make those changes and eat their way out of the duct and which will not? In which patients will a suspicious lesion progress to Invasive Ductal Carcinoma (IDC) and in which will DCIS live out its natural life along with its host, never bothering a thing? 

May 30, 2013: Second Opinion, First Team Conference
Confirmation of first opinion. DCIS. Low and intermediate grade, cribriform, non-comedo necrosis. No infiltrating ductal carcinoma present. Estrogen and Progesterone receptor positive, 69 and 11% respectively. At a team conference that day, my genetics consultant noted that at this time, my family history did not qualify me for BRCA testing, though my mother's life was shortened by lymphoma and my sister is currently in Melanoma treatment. This was a relief. Then, my nutritionist and I discussed nutritional support and food options to squelch tumors and balance estrogen (which have, by the way, been extremely effective thus far.) My oncologist and I came to a decision that I would undergo lumpectomy, in my view nothing more than a wide biopsy, based on the fact that after needle biopsy, a wider biopsy (lumpectomy) could show invasive cells (upgrade) in approximately 20% of DCIS patients. Also, I liked the idea of excising abnormal tissue, as well as excising all of it (with wide margins). Margin size is one of, if not the most important factor in assessing recurrence risk. I was comfortable with this and consider it appropriate treatment, even though no invasive cancer was later found. I needed to know what was in there. That's just my comfort level. So surgery was scheduled. In the two week interim, I optimized my diet and other lifestyle factors in case it mattered. And if not, it would certainly help me heal more quickly. 

June 12, 2013 - Wide Biopsy (lumpectomy)
Surgery went well. I opted for full anesthesia. I awoke with no nausea or other problems. I left the hospital feeling great and grateful. The incision healed well, and a small hematoma left from the needle biopsy was removed, so even the bruising from that was gone. My only concern: all the ionized radiation used during the two procedures for locating work areas and confirmation of the removal of suspicious tissue (micro-calcifications). I presume that all the radiation I saved myself from by foregoing routine exams in my forties had now been received anyway. But I've read that cancerous changes to radiation-damaged DNA are augmented by estrogen, a compound that I have far less of now than I had then. And now, radio-induced cancer has a decade less of my lifespan in which to form. So I like to think it's at least a wash. Only time will tell.
Results: widely negative margins (meaning they got it all and then some-in excess of 1 cm.) My surgeon did a superb job. She knew of my aversion to traditional preventive therapies. Whether that influenced the margins, I do not know. All that was found in the biopsy was low grade in 2 of 14 blocks examined. Again, cribriform and micropapillary, negative for necrosis. Closest margin up against chest wall. Size: 6mm.  

Don't Judge Till You Done Been There
I'd read stories of autopsies of women who died of other causes, revealing DCIS which had been in the breast for years to no harm whatsoever. All this is true. But data such as this may be spun in various ways, with judgmental tones. I'd also read that no DCIS will ever progress and that, as one-fifth of all breast cancer diagnoses, DCIS is just a money-maker and statistic-brightener for the evil cancer industry. Now that I've been there, in my opinion, this is not true. On the other hand, I'd read that if you have DCIS, you must do anything and everything you can to rid your body of it and its ability to return, even procedures which carry their own risks over the years. Again, now that I've been there, I find that this is also not true. 
Thanks to what I call divine providence, I was aware of it all from the beginning. The cancer conspiracy theories (some not without merit) and on the other hand, what I call "pink panic," where patients are so fearful that the only goal is reducing recurrence risk, using whatever methods necessary, however risky they themselves may be down the road.

I was also aware of how today's medicine can often be a trap. Many doctors even say so and advise that the best thing one can do for their health is to stay away from doctors, jokingly. But it really isn't funny. A DCIS diagnosis means a heavy dilemma with numerous precarious choices and a steep learning curve in making them. Many women do not want to do the work or deal with the dilemma, so they treat themselves per the one-size fits all "standard of care" and hope for the best. I don't judge or criticize them. We're not all the same. Some just don't have the time or the interest. And I wish them the best. But as for myself, I knew what the DCIS dilemma meant, and was strangely ready for it. A peace and assurance ran like a river beneath me, and I knew that God would be my personal instructor. He had prepared me thus far, and would not now let me down. But I was not without my doubts and misgivings. Although deeply grateful that the abnormality found in my body was not more serious, I was actually somewhat frustrated, in a sense. I knew that I would have to step very carefully if I was to avoid being caught up in well-intended protocols that could jeopardize my general health in the end. -Health which is more valuable to me than anything except my spiritual life. 

June 27, 2013:  Second Team Conference
With a successful surgery behind us, here is where we decide how to move forward. Would radiotherapy or Tamoxifen (standard of care is to do one or both) be necessary? My research led me to all but memorize several of the major studies, particularly the ones which came closest to matching my own hystological results. My oncologist and I agreed that where I stood at this point, my risk at 5 years was about 5%, 10 years, 10%. Radiotherapy is known to reduce risk by about 50%. For someone with a 30% risk, the 15% reduction is considerable. For me, not so much. Only about 2.5%. When considering the very real (though less than in days past) risks of radiotherapy, particularly for someone such as myself with other cancers in the family (ex: high amounts of radiation can switch on latent genes), it doesn't appear that the benefit exceeds the risks. Even less so for Tamoxifen. Thus, we agree that watching and waiting, while living an optimally healthy lifestyle, is sufficient prevention for the time being. In addition, whole breast radiation can usually be used only once. If used now and IBC recurs (actually occurs), the radiotherapy choice is gone and mastectomy is the only option left. So, even though it seems that relatively few patients feel comfortable with no further therapy, my team supports me fully in this decision.

July 10, 2013: Oncotype DX Results
There is one more tool in science's current arsenal of prognostic projection, which I asked my onco for. It is the Oncotype DX. This assay takes molecular markers from lumpectomy tissue and "does the math" to come out with a single number which can project risk of recurrence. The numbers run from 1 to 100. The lower the number, the lower the risk. My score is 13. This places me at an overall (DCIS or IDC) 10-year recurrence risk of 11% and more importantly, an IDC risk of just 4% (a full point lower than my onco and I had previously projected for just five years!) Again, at 50% reduction, radiotherapy buys me just 2 points. I can live with an invasive risk of 4%  versus 2% and looking over my shoulder for other cancers or heart disease due to therapy. Hey, recurrence of DCIS is not the only thing patients have to think about-we also have hearts, lungs, bones, and thyroids to take care of. And when radio-induced lung cancer appears at age 62, it probably won't be in situ.

Are We There Yet?
It has been lamented by experts that we do not yet have the science to stratify risk by groups of DCIS patients, and thus be able to tailor their care to their risk. If this is still true, it will not be for long. I believe that we are nearly there, if not already there for some of us. I am comfortable with the choice that I have made in not using further therapy to prevent recurrence. This is because I believe that there IS enough science to correctly stratify my risk and tailor my care. But I really had to do my homework to feel that comfort. And the support of my team at Porter Adventist Denver, under the expert direction of breast surgeon Colleen Murphy, deepens that comfort. Their team conference method, which they call Multi-disciplinary Clinic, is both efficient and effective, as skilled health care must be a cooperative, collaborative venture. I believe that I have received the very best care that is available there. Another fine resource which I may use at some point in time is renowned breast pathologist  Michael Lagios, St Mary's San Francisco. Dr. Lagios is available for second opinions directly to patients as well as their care providers.

July 11, 2013:  Going Forward  
I've asked my team members individually how I am to avoid this happening again. That is, having to go to surgical lengths to verify low (or no) risk. They have few answers. But these are mine:
Eat right. 
Lastly, keep your team (that is, if it's a good one like mine.) They know you, and your physiology. They know what you've been through together, and will less likely overreact. In fact, I'll do my best so that my team cannot forget me, lol!
Of course, my little journey has just begun. Five years is quite a ways down the road, and ten years further still. But I am full of faith and confidence of a bright future. Updates will be posted and dated for those wishing to see how the journey goes. Until then, just a few words of advice as you travel this road:
1. Get second opinions. Always. DCIS pathology is not as precise as it could be.
2. If things aren't going quickly enough for you, you may be able to schedule specialists yourself.
3. Get everything pre-approved with your insurance. You'll be glad later.
4. Use every tool that you (or your insurance) can afford. This is your health!
5. Trust yourself. Don't look back. But do keep up. As science evolves, so must we. Don't get left behind.
6. Trust others. There is no substitute for experience. 
7. Trust God. He gets you. He loves you. He's FOR you.

Well, there it is. I've written it a thousand times in my head, but all the data is now in and it's time to put it out there. I hope it helps someone. If it has helped you, please feel free to comment and/or subscribe.
Health, life, and peace to you!

UPDATE 7/2014:

I did use the services of Dr Lagios. He said that the grade of my lesion was not low and intermediate, but only low, due to the fact that there was no necrosis found. He agreed wholeheartedly that I should wait to use any further treatments, as my risk of recurrence was so low that further treatment would not help much. And he noted that no HRT that I had used up to that point made any difference in this diagnosis, nor would any continued use affect recurrence risk. This is a big relief.
6-Month and 1-year follow up screenings are all clear. One year down, a lifetime to go. 
Thank You, God!
In this year, I've had the amazing privilege of encouraging many other patients through this blog and other activities. I'm so glad to be able to help. My prayer is to help many more as time goes by. My heart is full of joy and hope.

UPDATE 10/2014:

It has been proposed that the name "Ductal Carcinoma In Situ" (ductal cancer in place, or unable to invade) be changed. Why? First, because DCIS cells looks exactly like cancer but cannot metastasize. So are they truly cancer? The ability to metastasize should be required before a cell is called cancerous, the proposal states. Why? Because even though some forms of DCIS can be dangerous (given time), much of it is ultimately not. But tell that to a woman who's just been told she has ductal CARCINOMA in situ. After the word carcinoma, she hears nothing else. Many newly diagnosed DCIS patients will do anything and everything and RIGHT NOW to remove this thing. And some of what they do may be too much, with new risks that can hurt them later on. This has led to reduced quality of life for many patients, something which can be at least partially fixed with the name change. And with increasingly more sensitive screening methods like 3D mammography, more and more of this is being found. Without proper nomenclature, statistics on this abnormality could further cloud and confuse our picture of progress in treating invasive cancer - a whole 'nother thing.

The new terminology? DIN. Ductal Intraepithelial Neoplasia. -A mouthful, yes. It effectively means pre-cancer. Studies in Europe and now in the US are beginning to use it. It won't be long before the term DCIS is a thing of the past. And for patients like me, that is just fine. At low grade, small, and widely excised, I've always considered my lesion to be a pre-cancer anyway.
It's just nice to know that this opinion has now become official.
And with better names and less confusion, treatments can be tailored better - a huge improvement. Who knows? Maybe soon, the purpose of this very blog (to help sort out some of the confusion for new patients) will be finished. That would also be just fine.

UPDATE 10/2015:

Much has occurred in the last year. At my 2 year screening, suspicious microcalcifications were found in both breasts again. I was surprised and disappointed, but not necessarily afraid. My breast surgeon said that it was a new occurrence. A friend reminded me that even though my risk for RE-currence was low, my risk for new O-currence was still twice that of other women because I had already been treated for disease. This is true. Add the two metrics together and things looked a bit different. It actually helped me to not feel so let down by science. This oversight on my part is one of the reasons why this journal is so important for others reading it, who find themselves in my position. Make sure to count ALL your risk categories.

Though disappointed, I was still glad not to have used radiotherapy. There's a 50% chance that these suspicious areas would not have been found had I done so. But only 50%. And the therapy still has its own risks and side effects.

I knew one thing from just this one mammogram. More was going on in my breast tissue than originally thought. Was it just benign calcification? Was it more low grade disease? (Usually, mastectomy is recommended for multi-focal disease, even in situ.) Was it higher grade? What invasive measures would it take to find out? I'd had one mammo-guided, vacuum-assisted needle biopsy and didn't want another one. If biopsy was to be done, it would be surgical (especially since I believe that surgical is the only complete biopsy anyway). My surgeon agreed.
I had premonitions of diagnostic mammos followed by two surgical biopsies followed by perhaps more surgery to gain adequate margins, and that was only if it was more low grade disease. What if it was more advanced? And either way, what about two more years down the road? Lather, rinse, repeat? Where would it end?

So I had a decision to make. These were the options.
1. Consider the low risk of the last lesion, and stop the madness by simply walking away from further diagnostics and treatments, living cleaner than ever, focusing more on breast health than I already have (maybe bordering on obsession) and learning to feel comfortable with the unsatisfied curiosity of what's really in there? I admire those who can take breast conservation to this level, but it's not for all of us, even if we aren't necessarily afraid.

2. Do the diagnostic mammos, probable biopsies, and possible further treatments, per the pathology. Maybe on both sides. Then, when all is finished, even if breast cosmetics are still intact, wonder about when the next time will be, and whether we are headed, even after all the conservation, for mastectomy in the end anyway.

3. Do the mastectomy, prophylactically, even before knowing what this is. Both sides. Reduce risk to 2%. No more mammograms, no more research to validate choices. No obsessing. Walk away, finished with it.

I chose #3. Extreme? In my opinion, not after seeing this again, in less than 2 years, and now in both breasts. Post-mastectomy biopsy showed a new, intermediate grade DCIS in the right side, twice the size of the last one, and lots of microcalcification, with numerous changes, in the left. The fact that this developed in less than 2 years made me glad to have made this choice. And the fact that I had omitted radiotherapy last time made immediate reconstruction much easier than it may have been had I radiated that tissue before.

It appears that in the end, I was low grade multifocal. The standard of care for this would be single mastectomy. Unlike my first event where I chose less than the standard of care, this time I decided to, in the opinion of some, exceed the standard by doing both breasts. Again, this was my second go-round with this, even though it was very early stage again. This may never have hurt me. But I was tired of wondering, studying, preventing. Tired of procedures. Just tired.  In my mind, the decision to replace both breasts and reduce risk was more one of logistics than of medical necessity. I hope to minimize all the procedures. I want to live my life. I love mountain tops and beaches, and would rather spend my time there than in MRI or mammography clinics. I want to wear gowns to dance, not to screen. I'm ready to move on. I'm told it doesn't matter now that I've been previously treated. My risk is low. Very low. Not nil. But very low. And for screening, all I need do is to visit my surgeon once a year for an exam. Cosmetic result for a nipple sparing procedure with immediate reconstruction is very good. At this writing, I am about halfway through the process, and it is going nicely, though it has not been without its pain and challenges. Watch the blog for new posts on the process. I feel comfortable with this choice but it's not for everyone. The fact is, each of us is different. Some have a high tolerance for risk, some play it safer. No judgment here. Our diversity is beautiful. What's most important is that we are here to help each other if we can. I hope that even through all the changes, this journal continues to help others. Health and peace to all!