DCIS Treatment Plan: A New Standard of Care!
Comments
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Lisa- thats a great idea. Some people just read around for information when they are trying to make a quick decision. It would be great to have it posted.
Decision-- ty
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panky:
I am a layperson with no medical training.
I note you were diagnosed "last week (via excisional biopsy) with encapsulated papillary carcinoma and DCIS, my margins were positive . . ." In addition, you noted that sentinel node biopsy (SNB) was not recommended at this time.
"Encapsulated papillary carcinoma" seems to be a less common observation. It is possible that associated histopathological findings may inform the exact diagnosis (e.g., as an in situ lesion or special type of relatively favorable invasive disease) and/or the appropriate treatment strategy for your condition. Please confirm this with your doctors.
Please be aware that information here discussing treatment approaches appropriate for pure DCIS might or might not strictly apply to your specific situation with encapsulated papillary carcinoma and DCIS.
Please be aware that information here regarding treatment approaches appropriate for invasive disease might or might not strictly apply to your specific situation with encapsulated papillary carcinoma and DCIS.
If you consider any information from these boards in your treatment decisions, please be certain to confirm with your expert medical providers that: (a) all information is accurate, current, and applicable to your specific case; and (b) your thinking is sound from their expert medical perspective with respect to your unique diagnosis.
BarredOwl
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I appreciate your sharing this information. DCIS is still difficult to understand, in terms of treatment and risk factors for recurrence.
Actually, some of my research over a year ago, (and still ongoing,) stated that because it is a non-invasive "cancer," or "high risk, pre-cancerous cells" as my surgeon calls it now, it by definition can not recur, only occur again. In any case I wish this new treatment protocol, no radiation after lumpectomy, for hormone receptor positive status only, the drugs you mentioned, was more widely used. After I completed radiation I conferred with my oncologist, who said it was up to me and did not seem distressed at my decision, I decided against hormonal therapy. Radiation after lumpectomy offers a 15% risk of a new cancer occuring, 50% DCIS, 50% invasive. I honestly felt, for me, I had put myself through enough for something that they are now saying was sometimes over treated. I did not want to take the drugs because of potential side effects. I am an oncology nurse and know what women complain of. Still, had I had the option of the drugs vs radiation I would have taken the drugs. My experience with radiation really was not bad. My fear of it was much worse.
My mammogram was negative last August and does not need to be repeated until next August. If I was at such high risk of another breast cancer one would think they'd follow me a little closer. I am taking a gamble here, I realize that. At my visit with my surgeon last August, he still recommended drug therapy. I will be seeing my oncologist in March and if he feels strongly in favor I will reconsider.
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Marijen,
I'm not sure I understand what you mean by "no primary giving off invasive cells...?" There often is no lesion or mass with DCIS. Often, as in my case it is suspected by the arrangement and form microcalcifications take on mammogram. The DCIS are the primary cells. If they give off invasive cells they are no longer DCIS but IDC or Invasive Ductal Carcinoma. A game changer.
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Hello, Ladies, I am happy to share the information with all of you. I don't think that BCO has published anything about what I am going to share. I got this thread, which I started confused with another thread, and I didn't want to get off topic!
I am wrung out from a very hard day. My mother has Stage IV breast cancer and she is in the ICU at a local hospital unable to breathe on her own. Please give me some time to rest this evening, and I will share what I know. Some of it may or probably is already be explained in earlier posts but I can go over it once again.
Of course, BarredOwl, nobody should use information on these boards to make treatment decisions. These boards are to ask and answer questions and share what we have learned. In my case, the answer was not available on any authoritative sites anywhere on the Internet. I was fortunate to have an expert on DCIS weigh in to provide invaluable guidance. The information I am going to provide may be unfamiliar to local doctors and at some large facilities too but the medical team at the comprehensive cancer care center where I was treated immediately moved to change my treatment plan when the idea was suggested to them.
Back later after dinner and rest. I have a six to eight week recovery period, and I cannot lift a finger for 30 days after surgery to do housework. My brother made dinner for me.
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Leenso - I'm not sure where you got that? A primary gives off invasive cells or it wouldn't be a primary? Is it from an old post? I would have to reread it....
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Marijen,
Oh yes, probably on page 1 or 2 of this thread! This has been fascinating reading for me today. I had not gone on this site for many, many months and decided to again today because I suggested my best friend do so as she has a new diagnosis of DCIS on stereotactic biopsy (like what I had over one year ago,) and now after surgery, unfortunately a new diagnosis of IDC. She was given a choice whether to have her nodes checked or not and has chosen to. Wow! That wasn't even a choice before! But as Decision Freak has shared her incredible personal journey with us, as well as others who have shared, opinions and experience vary widely, including in prestigious facilities! It's actually quite scary to hear of momoschki's experience! I am an oncology rn at a small community hospital and was very lucky to have as my breast surgeon a doctor I've known and worked with for almost 30 years, and who keeps up with all the newest research. Or tries to, there is so much still to be discovered about DCIS. When I replied to your post, marijen, I thought it would follow directly after your post, from November I think! Not important now. I probably misunderstood you.
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Hi Leenso, yes I don't see it. But it might have been something I cut and pasted. Not sure. Oh well. Glad you like the thread - it worked out well for DF, she ended up with breast reduction paid for by insurance as a way to eliminate possible cancer cells. We gather information from here and there that apply to our unique situations. Not something the doctors have time to do for us apparently.
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To Decision Freak,
Thank you for sharing so much of your journey. It was like reading your diary! I hope now you can put to rest, at least for a while, all the research and hours spent doing it, ruminating and stressing. You are one gal who's really done their homework with quite a remarkable outcome! I wish you a speedy recovery and my thoughts and prayers are for your Precious Mother. As far as the genetic testing, it would be more important if you had children, or your brother, does he have children? Of course, it would also be important information for research. But it is very expensive if not covered by insurance. Did you say you did go through with it?Rest well, thoughts and prayers are with you as well. Netflix is a Godsend for those who are recovering! And Amazon Prime. So many series to chose from to engage your attention! Rest well and thank YOU!0 -
marijen,
Did you say you had 12 nodes dissected with one positive? It sounds like you have been through a lot. And radiation now? It sounds like you've been undergoing treatment, in one form or the other, for close to one year?
Brave woman. My best to YOU!
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Leenso, thanks. bco threads probably kept me from going bezerk! Had two extra surgeries to clean margins too. And I have a missing IDC - Unknown occult primary. But there are others here with much more, way more, complicated, sad, painful, long stories. So far so good for me. I am supposedly NED at the moment.
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Hi panky:
Further to my post to you above, I noticed in another thread you mentioned that the pathology showed:
"2.1 cm encapsulated papillary carcinoma with associated DCIS".
Further, it showed:
"papillary carcinoma, both features of encapsulated and solid papillary carcinoma, most consistent with encapsulated papillary carcinoma, DCIS is present, negative for EIC, pT2, Inking blue - entire margin assessment, still waiting for the marker analysis."
Speaking in terms of size only, 2.1 cm (21 mm) is "T2" where, T2 is:
T2 Tumor > 20 mm but ≤ 50 mm in greatest dimension
I am guessing that the "associated DCIS" may be more of an incidental finding to the primary diagnosis of pT2 papillary carcinoma. Your treatment plan must be adequate to address the papillary carcinoma (and as such, should also address the associated DCIS (after adequate removal of the DCIS)). Please confirm this.
You may already know this, but your personal level of risk of recurrence without radiation and/or endocrine therapy may be different from that of those whose disease was confirmed by all post-surgical pathology to be pure DCIS. Please obtain a personalized risk assessment (for example, after all available post-surgical pathology is available).
Please confirm all information above with your doctors to ensure accurate, current, case-specific expert advice.
Hopefully, you will learn more from your next surgical consultation tomorrow.
BarredOwl
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Many new members whose primary diagnosis is DCIS find this post from Beesie to be extremely helpful. It is a good idea to bookmark it and read it over and over, because there is a lot to absorb.
A layperson's guide to DCIS (scroll all the way up to the top of the page to read the original/first post):
https://community.breastcancer.org/forum/68/topic/...
BarredOwl
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Where are my manners? I failed to welcome the new members that have joined this thread. My sincere apologies. Give me a little time, and I will return to formally welcome you. I am going to address panky's post. As I mentioned, I was going to PM panky because I thought I was in another thread.
panky, you are in my estimation on the right track in the questions you are asking. I cannot give medical advice, but I can tell you about my treatment decisions and why I made them.
First, I did not want radiation, and I took six months trying to figure out my options. Based on my first excision or lumpectomy on August 14, 2015, I have pure DCIS, grade one. I did not have the other histological description you have of encapsulated capillary carcinoma.
Based on my diagnosis, the team wanted to try me on Tamoxifen during the two months between when we first met on November 12, 2015 and the second lumpectomy scheduled for January 26, 2016. They felt the Tamoxifen might shrink the tumor and make it easier to get negative margins. The team suggested that I might use Tamoxifen or aromatase inhibitor drugs as long-term adjuvant therapy for five to ten years to reduce my risk of recurrence or new cancers in either/both breasts in lieu of radiation. I started Tamoxifen the day I got back home. The side effects were horrendous. I had to stop the Tamoxifen on December 5. The MO, an assistant professor who fell way short in the people skills department, said would try me on the aromatase inhibitors after surgery. I wrote her an email saying I needed a DEXA scan and maybe a dental evaluation if I had osteoporosis. She wrote me back an excoriating email saying she wasn't going to put me on AI drugs since I had little chance of recurrence. M impression was that she did not want to bother with assessing my health risks for AI drugs. She obviously did not understand why I was seeking world class medical expertise to explore all of my treatment options. I asked for her immediate removal from my wonderful medical team. When the time came, my breast surgeon, who is a wonderful person and physician, moved quickly to help me determine my suitability for AI drugs.
I contacted Dr. Laura Esserman who is the top expert in DCIS and a strong advocate against DCIS low-grade over-treatment. Dr. Esserman has no problem with appropriate treatment of high grade DCIS, despite being vilified by some people for her advocacy. Dr. Esserman had originally referred me to my medical team. I asked her if I could explain what was going on, and she was receptive to my writing an email. I said Tamoxifen nearly killed me, that AI drugs were (at that time) off the table. I did not feel I would get through radiation without serious and major problems due to my fibromyalgia. I live in chronic pain, and I felt that any long-term side effects from radiation would do me in. I didn't know what to do.
I got a reply from Dr. Esserman a week later. She wanted to know how I felt about a breast reduction and lift. I knew there were serious risks, but I was thrilled. I had suffered from DD cups for years, but had no idea that breast reduction could be used as a tool in cancer treatment and prevention. Dr. Esserman with my permission called my breast surgeon who was totally on board. A week later I traveled 450 miles round trip to meet with the plastic surgeon for evaluation.
In the meantime, I did some reading. I found that breast reduction could potentially reduce my risk of cancer equivalent to Tamoxifen at my age, 61. I also discovered that it can be dangerous to irradiate large breasts. From what I read, a woman that wears a large C breasts or D cup had the right to ask for a breast reduction before radiation. The risk of irradiating large breasts are radiation poisoning or short or long term serious problems with the breasts. This information was new to me. I later found out that until the breast reduction came up as a treatment and prevention option, that my cancer care treatment team had no clue about the size of my breasts or that I wore a DD cup. When I met with my breast surgeon right before surgery, she was very pleased that she could take out as much tissue as she deemed necessary because the plastic surgeon would fix any cosmetic defects during the oncoplastic surgery. The breast surgeon told me if I only had a tiny risk of cancer recurrence that she would recommend against radiation. She said if I did need radiation that it would be much safer with the smaller breasts.
The plastic surgeon agreed to do the reduction and lift. We decided she would reduce me to a C cup from a DD cup. She told me that I had very dense breasts. Surgery was a little more than a week away. I was told that Medicare would pay for the breast reduction and lift as part of my cancer treatment. I had already bought an extra health insurance policy under Part C Medigap to cover the many co-pays and co-insurance that I would face regardless of my treatment plan.
I had a lumpectomy and oncoplastic surgery immediately following on January 26, 2016. I was under general anesthesia for 4.5 hours and in recovery for 2.5 hours. I woke up in a surgical vest and surgical drains coming out my body. I saw the plastic surgeon the next day in a post op. She was pleased with her work. I saw her again the next week. I saw my breast surgeon for post op about a week out of surgery. She told me that my path report was entirely negative. I had no rogue DCIS cells. I was completely cancer free. Under those circumstances, the radiation oncologist said she would never order radiation for someone with no signs of cancer and a negative path report.
I am 15 days out of surgery. I have two more weeks until I can do housework. I cannot lean over to pick up things that drop on the floor. My breasts are still swollen from the surgery. I feel like a new person without heavy, pendulous breasts. I have scars that may always show a little but they may heal well.
The surgeon wants me to consider AI drugs. I had a DEXA scan ordered by the surgeon. I got the results today. I do not have osteoporosis. With less pain in my back and neck, the doctors want me to see if the AI drugs are tolerable. Dr. Esserman sees no downside of trying the AI drugs or of taking them for 10 years to prevent cancer
I will end this post with the caveat that echoes Barred Owl. I started this thread, and I did not know anything about ductal carcinoma in situ. All I knew was that I wanted appropriate treatment, not over-treatment of pure DCIS, grade 1 (low grade DCIS). This thread represents my own unique decisions and does not assure that my choices will be safe or efficacious for everyone. All decisions should be discussed by you and your doctors. You should have a high level of comfort with your treatment plan.
I do not publicly say where I live because it is a small Southern town. I have gone to a large city with a comprehensive cancer care treatment program that works in conjunction with a large teaching hospital.
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Someone asked about genetic testing. I went through genetic counseling at the treatment facility. It was determined that my risk factors were family-environmental. I could not say for certain that my family does not have Ashkenazi Jewish blood. Thus, I could have declared myself Jewish and the facility would have done the tests. The main line of the family tree that I suspect may be Jewish has a last name that is very common among Jews all over the world - Shipman. I am a direct descendant of the Lancaster, PA Shipman line and the Pittsburgh Woods line. The Woods I don't know about either, but they are still a highly prominent family with whom I am not acquainted despite being a descendant, so I am going to leave that potential stone unturned. In any case, I saved the option for later, but I seriously doubt I will have the testing. I think the assessment is right on. I didn't want to spend Medicare monies unless there was a compelling reason.
Genetics testing has gone way down in cost since the Supreme Court decided that a company cannot patent the genetic code of a gene.
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Decision Freak and Barred Owl, thank you both so much for the great information and feedback! I feel pretty prepared for my meeting with the surgeon this afternoon. Yes, the "associated" DICS is puzzling to me and I will ask about it vs "pure DCIS". I have Kaiser for insurance and am not sure how the reduction as treatment idea will go over, but am keeping my fingers crossed.
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Hello everyone, I'm new to this particular discussion and fairly new to the board itself. I have been following many conversations with great interest. I have a large area of DCIS in my left lower breast and more toward the back, though in the same quadrant. It's a big chunk for my D sized breast, and now they're talking mastectomy. Oh, perish the thought.
I've read in a few places about neoadjuvant hormone treatment being used to shrink the area. DecisionFreak, in an earlier post, you said docs were giving you tamoxifin for this purpose. Did they volunteer that option? I ask cos I'm asking around my area and people say no. They just want to cut and be done with it. I would love to find someone who would be willing to give me a couple of months trial so I don't need to lose part/all of my breast! Any advice?
Also, Marijen, were you in the letrozole trial? I'm gathering you were given the dates of your pre-surgery treatment. If so, how did that go for you? Unfortunately it closed by the time I inquired.
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Simsoka, I might have been in a trial I wasn't informed about because my BS slipped and said "it was a study" when I asked him how come I was put on Letrozole first for six months. My original positive node was 4.1 cm, it shrunk to 2.1 after three months and then nothing for another three. (after surgery the macromet size of the one node was 3mm). In the beginning I thought maybe it would shrink down to zero and be gone but that was before I had time to research. In the fourth and fifth month I was busy with skin cancer surgery and still hoping it would shrink, in the sixth month I was very ready for surgery. Never liked my MO, feel she wasn't straight with me. My BS was, but by then too late. I suppose it doesn't matter but I haven't had a full body scan since all this started so who knows? I asked the MO how will I know if it spread and she said I will get symptoms or more lumps - great! They refused me a tumor marker test like CTC. I didn't get genetic - so I'm doing it on my own. I'm supposed to be cancer free at this moment in time. I am glad I was able to have time to let it all sink in before surgery, but if I had to do over, would have asked for surgery in three months not six. Also I've heard from another member that "a" study (not sure which one) flatlined after three months which is my experience. BS said this is how they do it in Europe because waitlines for surgery are long. I also have an unknown primary tumor - IDC, i.e. occult.
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simsoka, stop and do not pass go. I have to help a friend this morning but I will be back to answer your question. And, welcome to the thread! This is exactly why I started this thread - to discuss new options.
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simsoka, I left my local area where the doctors were clueless, and I pursued care at a comprehensive cancer care treatment center 225 miles from home that is supported by broad medical expertise from a major teaching hospital. At my first meeting with the medical team, the MO prescribed Tamoxifen. Many MOs prescribe oral chemo preventive drugs such as Tamoxifen or AI drugs (for post-menopausal women) to help shrink tumor before surgery and prevent new tumors. The idea was that I would be on Tamoxifen for five to 10 years, but I was only able to tolerate Tamoxifen for three weeks. I had terrible side effects and that may have been an indication that the drug was working.
I consulted with two highly regarded experts in addition to the medical team. With pure DCIS low grade, I believe they said after reviewing all my imaging studies and slides that I had up to six months to review my options after the first lumpectomy on September 14. I met with the medical team at the comprehensive cancer care treatment center on November 13. At that meeting, the MO prescribed Tamoxifen and we set the surgery date for January 26. On January 26, I had a second lumpectomy plus breast reduction and lift. These procedures were all part of my cancer care and treatment and prevention plan. At my age, 61, a breast reduction confers protection against breast cancer roughly equivalent to Tamoxifen.
The Patient Bill of Rights allows you to have a say in your medical treatment. It is against the Patient Bill of Rights for a doctor to make a unilateral treatment decision. There are probably emergency situations where the surgeon cannot ask the patient for permission but yours is not one of them. The Patient Bill of Rights is an official document that carries weight. If the doctors refuse to give you neoadjuvant therapies with no ironclad medical reason, then you can tell them they they are violating your Patient Bill of Rights to deny you therapy that could affect the outcome of your illness. You could probably report them to the state medical board but it is hard to get good treatment unless there is mutual respect among doctor and patient. If you can locate a comprehensive cancer care treatment center nearby, I would highly recommended your getting treatment there. I would hope your desire for neoadjuvant therapy would be honored at this type of facility. I think these facilities are listed on the National Cancer Institute web site or you can run a Google search.
About your lumpectomy, if the DCIS lesions are is in the same quadrant, the surgeon may be able to take them out and have a plastic surgeon do a bi-lateral breast reduction if your breasts are large enough - probably large C or D cup.The plastic surgeon may be able to fill in the area taken out with tissue from your breast if it is a large area that is removed. It is my understanding that breast conservation surgery is being done on women with larger tumors, and there may be various reconstruction options. The PS told me right before surgery that she might have to put in a tissue expander if the breast surgeon took out a large chunk. It turned out that she did not need to put in a tissue expander but she did some flap surgery to fill in the space where the breast cancer surgeon removed a large amount of tissue.
These treatment options are state of the art and have not achieved widespread acceptance. If you do not want a mastectomy, then I would push hard to learn about the other options and to find a team willing to work with you. You will only find out about ALL of your treatment options by pushing the doctors.
I can help you with accessing transportation and lodging resources if you need to travel away from home to meet with a medical team for an evaluation and treatment plan.
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DecisionFreak, this is incredibly helpful. I will take some time digest and write back.
xo to you!!!
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Marijen, Thank you for sharing your story. I must say that you and everyone here are so generous in sharing.
Sounds like you have had twists and turns on this path. I guess that's the way it goes. I'm certainly finding it to be true in the few weeks since I began this journey. Seems your doctor put you on a trial without your knowing, and mind was not forthcoming with that possibility at all. So your lumpectomy was smaller than it would have been originally, correct? Can you share more about needing a full body scan or what a CTC is? Also, what is an occult? (I'm learning!)
Interesting that neoadjuvant therapy is commonly done in Europe. Probably smaller lumpectomies going on over there...?
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simsoka, it is within the realm of possibility that the short course of Tamoxifen did shrink my tumor which had already gone through one excision with positive margins and that my immune system took over and swept the rest of the tumor away. It is impossible to know what happened, since there were clearly malignant cells after the first excision but the path report found not one malignant cell after the partial mastectomy and breast lift and reduction. Given what marijen wrote about letrazole shrinking her tumor, it is well worth pursuing neoadjuvant therapy. You could run a PubMed search to see if you can find high quality studies or clinical trials on this type of therapy with Tamoxifen, Evista or the three AI drugs.
Will return with names of three AI drugs unless someone kindly wants to provide the generic names. If you are post menopausal, AI drugs can be prescribed.
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Simsoka and DF, I learned that the size of the node and DCIS, I guess anything that is measured.... depends on the PLANE it is measured in. In my case, the final measurement was compared by to the original measurement and adjusted for being in the same plane (geometry). The comparison was done by the pathologist. And so what may have seemed large in one plane is not so large in another? Only pathologists know for sure
CTC is circulation tumor cells. I have a study somewhere that says to measure the CTC saves about 11 months time before a tumor becomes palpable or causes symptoms. My BS promised me he would do it but I never got a result. Since it was back in November I would think the result would be in......
A Petscan shows "hot spots" that could or not be cancer. I'm sure someone else can give more information on the Pet Scans or you can search.
In my case because the MRI, the Petscan, the Mammo, and the US did not find my IDC (occult tumor) getting the neoadjuvant thereapy first, before the positive lymph node was removed showed the Letrozole is working in my body. But since then I have found out there comes a time when hormonal therapy may stop working and they are working on a blood test to determine that, not available yet.
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DF, There was a Letrozole study that ended on January 28. Unfortunately, I did not catch it in time, but I'm hearing from others of its success, and like you they say there are centers willing to do the neoadjuvant treatment with hormones. I am encouraged.
I'm also glad to hear of the Patient Bill of Rights. I didn't know it existed, but it only makes sense. I have been confounded by the prospect of not being able to exercise options even if they're not today's standard of care.
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Marijen, whew -- the geometry stuff! Your comment gave me a chuckle.
So does the CTC serves as a timer in terms of urgency to take action? Would it work for DCIS? Although, there may a tumor lurking in my breast that hasn't made itself known yet. I'm hoping that's not the case.
I have been wondering how much time I have for experimentation. Hoping for a couple months' latitude anyway.
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Simsoka,
Here is a link to a new DCIS study opening this year by the same researcher who lead myLetrozole study:
https://www.sciencedaily.com/releases/2016/02/1602...
Just on the look out for something that might help your situation! It seems to be all about timing though...
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simsoka,
Shelley Hwang at Duke University has been working closely with Dr. Laura Esserman at University of California, San Francisco to raise awareness for the need to find improved treatments for DCIS and to raise Federal monies for clinical trials to study DCIS and risk factors for other breast cancers. Even if you did not join a clinical trial at Duke, you could seek treatment by Dr. Hwang at Duke University. Dr. Hwang, who I am about 99 percent sure is a breast surgeon, would work with a full medical team. I love the team approach. Dr. Esserman referred me to a wonderful medical team at another big cancer care treatment center that performed my partial mastectomy (it was a lumpectomy but so much tissue was removed that it became a partial mastectomy requiring the breast reduction and lift). I was also able to weigh in with Dr. Esserman about AI drugs and she felt there was no harm in seeing if I can tolerate them. I have had a bone scan to see if I have osteoporosis because AI drugs can weaken the bones. My bones are strong so I will probably try them out.
I can help you in learning about transportation and lodging resources if you want to travel to Duke University for treatment. I considered going there but my team is as good as they get.
Also, I will check into the two treatment facilities you mention and also see if I can find other cancer care facilities near you. My feeling was that I was making decisions that would affect me for the rest of my life and I wanted to make the best ones possible for me.
kayb, thank you for the list of AI drugs.
My apologies for not welcoming everyone. I am only two weeks out of surgery and still tire easily. I will bring out the welcome wagon soon.
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simsoka, I asked quite a few people, including the medical team itself as well as two other breast surgeons and some on these boards how much time I had before I had to take action. Most women jump into surgery and radiation quickly out of fear. Some with invasive cancers cannot afford to wait. However, I had a full pathology report with stage, grade, and hormone receptor status. I also had numerous mammograms, ultrasounds, and an MRI. Do you know your hormone receptor status? How did you get the diagnosis and size of the DCIS? Tamoxifen and the AI drugs are effective for estrogen positive tumors.
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