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DCIS Treatment Plan: A New Standard of Care!

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  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    I feel really bad that I have not done my job in welcoming everyone. I appreciate those of you that are jumping in to provide information to newcomers. I will try to do better but I am mainly keeping body and soul together to heal from a very invasive and difficult surgery.

    I have said from the beginning that I started this thread knowing nothing about breast cancer treatment. I wanted to learn about DCIS because I didn't want to be pinned to the standard of care. People stepped in to correct my mistakes and were supportive as this thread grew. The thread has been quiet for a while. I am very glad to see people showing up with serious questions and others being on the spot to provide assistance.

    As far as the standard of care goes for DCIS, it is becoming tailored to the specific woman's needs. In five or ten or fifteen or twenty years, there may be sufficient information to predict which treatment options will work best for DCIS tumors with certain characteristics. At this time, in my opinion, it is a very good idea to find the best informed medical team you can find and then ask questions and keep asking questions until you are comfortable with your treatment plan.

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    DF, I'm stage 0 but grade 3, and from what I've read, grade 3 is not something to mess around with. I've had multiple mammograms, and MRI and pathology done with a full report (comedonecrosis, etc.). Unfortunately, it did not include the estrogen receptor status, which of course may make the whole discussion about hormone therapy moot. Apparently, the pathology group that did my biopsy does not test for ER status until after surgery and refuses any requests to do so prior to surgery. So frustrating. I wonder if this is the case just for DCIS??? My second opinion surgeon is also confounded by this, but I'm hoping we can do something about that Monday -- either get the original pathology group to send remaining tissue to the new pathology group or if another biopsy is necessary, well, so be it. Horrible procedure, though.

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    DF, an addendum to all of my prior notes over the past 24 hours, thank you so much for helping me in a time of recovery for you. I'm really grateful. May you heal quickly and completely. I'm thinking of you.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    simsoka, I had an excisional l biopsy and the pathology report included my ER/PR status. I knew the same week that I had hormone positive receptor status. I don't understand the surgical group's rationale. I think you are correct in finding an MO as soon as possible. DCIS is not invasive cancer. Without being an expert, I can only tell you what I would do. Run like the wind to find help!

  • chisandy
    chisandy Member Posts: 11,223
    edited February 2016

    Yup. My friend with a recent grade 3 DCIS diagnosis was told she's ER/PR- and has yet to schedule surgery. They generally don't test DCIS for HER2, but if her MRI-guided biopsy of a second mass discovered via MRI shows an invasive component, it'll be tested for HER2 as well. HER2+ status does make targeted therapy (Herceptin, Perjeta) a possibility, thus an extra tool in the arsenal that HER2- patients (i.e.,both Luminal A and triple-neg patients) don't have if other adjuvant therapies either fail or stop working.

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    DF, can I ask the size of your area of DCIS?

    Caber, thanks for being on the lookout!

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    ChiSandy, good to hear from you. I hope you are well. I will be going on AI drugs in the next month and was thinking of you. My second surgery found that I am completely cancer free. No rads for me, but surgeon wants me to try AI drugs.

    simsoka, you have the right to ask for tissue sample to be tested for hormone receptor status. If the pathology group won't do it, tell them they are violating your Patient Bill of Rights and ask them to send the tissue to another group. You are trying to make an extremely difficult decision about chemo preventive drugs before surgery and you need to know. The actions of the surgery and pathology groups do not smell right to me. I would be writing letters of complaint and sending them with a signature required on receipt as people are terrified of written documentation. Keep going up the chain of command with the path group and if you don't get help write the state licensing board for the path group. Aso the MO that you are going to find for help. ChiSandy is right in saying that some with DCIS wait quite a while for surgery but it would be good to get an opinion from the MO about how much time you can wait. In my case, most said I was good with waiting three to six months for the second surgery. Sounds like the surgeon needs the money to pay his office rent.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    See the forum DCIS and topic Pathology Report - Would Like Some Other Opinions for the tumor size information. Ignore my comments that precede the description as they are full of misinterpretations.

    What the surgeon originally told me was one centimeter, but the two surgeries ended up removing a large mass of tissue. In the second surgery, there was no malignant tissue detected in the large mass or the tissue removed in the breast reduction.

    Lots of people had opinions about the level of urgency but I relied on opinions from experts I contacted, from the medical team, and from people on this board with a diagnosis similar to mine that seemed credible. I will tell you that ChiSandy has been on these boards for quite a while now and that she is smart. Still, expert opinions are very important.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2016

    Simsoka:

    In the United States, the recommended work-up for DCIS under National Comprehensive Cancer Network (NCCN) breast cancer treatment guidelines (Professional Version, 1.2016) includes:

    "Determination of tumor estrogen receptor (ER) status"

    It is possible that in some cases, there is not enough tissue remaining for ER status determination. Otherwise, under current guidelines, ER testing is generally performed. Most people diagnosed with DCIS here do receive ER and PR status determinations on biopsy.

    The official pathology report should expressly state if there was inadequate tissue. If not, you may wish to ask to speak to the pathologist and request a reasoned statement as to why ER testing was not done in your case. It you do not receive or cannot obtain a satisfactory explanation, you may wish to seek a second opinion regarding the pathology at least.

    Some institutions provide second opinion pathology review. For more information, see this page and related pages (listed at left here):

    http://www.breastcancer.org/treatment/second_opini...

    I was drafting while Decision was posting. Here is her earlier thread:

    https://community.breastcancer.org/forum/68/topics...

    Her history is distinct from yours (as she has noted above) due to having an excisional biopsy.

    Her relatively much smaller area (~ 1cm) of low grade DCIS may have been essentially completely removed by the first excisional biopsy in September. Complete surgical pathology was available to her for a large amount of excised tissue (see dimensions below) and showed no evidence of invasive disease:

    Procedure 1 (08/11/15): A stereotactic core-needle biopsy removed tiny amounts of tissue.

    The pathology found ADH, with concern for DCIS. Therefore, Procedure 2 was recommended.

    Procedure 2 (09/14/15): An "excisional biopsy" was performed.

    Procedure 2 removed a rather large chunk of tissue ("breast tissue weighing 21 gram in aggregrate and measuring 5 x 3 x 1 cm, 2.5 x 2.5 x 1 cm, 3 x 2.5 x 1 cm"). Among other things, the pathology on this material found "Ductal Carcinoma In Situ (DCIS)" about one centimeter in greatest dimension.

    According to the dated pathology report, Procedure 2 (the excisional biopsy) found the "Ductal Carcinoma In Situ (DCIS)" which was "[a]pproximately 1 centimeter in greatest dimension."

    "Evaluation of Margins: DCIS extends close to (0.05 mm or less) and is likely focally at an inked and cauterized tissue edge in sections examined"

    Following excisional biopsy, immediate re-excision was recommended by the first surgeon in view of margin status. She sought expert advice regarding possible options and timing of possible further intervention(s).

    Pursuant to expert advice, surgery was scheduled for January 2016. My understanding is that the recommended endocrine therapy was in view of this waiting period, and was directed at the possibility of residual disease if any following an excisional biopsy. She took about three weeks of tamoxifen, before discontinuing therapy due to side effects. No residual disease appears to have been found following the lumpectomy/reduction in January. Whether this relatively short treatment time could have achieved any reduction in residual disease appears to be unknown, assuming there was any residual disease (which is also unknown).

    At all times, Decision was a suitable candidate for lumpectomy. Her DCIS diagnosis was made by excisional biopsy of a large amount of tissue that showed no evidence of invasion in the excised tissue.

    A person who is not a candidate for lumpectomy, who has a large extent (~4 cms) of high grade (grade 3) DCIS with comedo-necrosis, and who was diagnosed by minimally invasive biopsy, is: (a) in a substantially higher risk position based on histopathology and extent of disease; and (b) has a much greater degree of uncertainty as to the possible presence of an invasive component due to the very small amount of tissue sampled at biopsy.

    BarredOwl

    P.S., By the way, as I clarified in that thread, I lacked the expertise to know what is a safe time period to wait for re-excision (if it were in fact indicated), and I felt that potentially waiting six months to seek expert advice on this question was not advisable.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    Hi, BarredOwl, thank you for the very clear and cogent exposition, and the addition of common pathology practices. After getting expert opinions on my timeframe, I waited two months to get a compete re-evaluation of my diagnosis. In November. two months after the first excision, I had yet another set of mammograms (bi-lateral which the surgical group had refused to do), ultrasound including lymph nodes, and a second opinion on the tissue slides that showed DCIS close to or at the inked margins. The new medical team agreed on the original diagnosis and said that it was very acceptable to wait until after the holidays to perform the second lumpectomy that turned into a partial mastectomy and breast reduction and lift.

    simsoka, I believe Memorial Sloan Kettering is one of the best facilities in the United States for getting treatment for DCIS. Are you talking specifically about Memorial Sloan Kettering? Some hospitals have branch facilities so I want to make sure. They are doing break through surgery on DCIS that has apparently resulted in low rates of recurrence according to a news article I read on BCO.

    I have checked with a breast surgeon to confirm Memorial Sloan Kettering's status as a top notch cancer treatment facility.

  • marijen
    marijen Member Posts: 2,181
    edited February 2016

    DF, please expand - what is break through surgery?

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    DF, Sloan Kettering a couple of hours away. There's also Dana Farber in Boston (also about 2 hours away) and Smilow at Yale, which is about an hour away.

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    BO, unfortunately, this is me:

    "A person who is not a candidate for lumpectomy, who has a large extent (~4 cms) of high grade (grade 3) DCIS with comedo-necrosis, and who was diagnosed by minimally invasive biopsy, is: (a) in a substantially higher risk position based on histopathology and extent of disease; and (b) has a much greater degree of uncertainty as to the possible presence of an invasive component due to the very small amount of tissue sampled at biopsy."

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    simsoka, I wouldn't get too entangled in specifics until you get additional information. It is easy to get tied up in knots. Surgeons are performing breast conservation surgery now on women with larger tumors than before. I can't say what a top flight surgeon coupled with a plastic surgeon might be able to do for you because the surgical treatments and techniques are changing. Do not despair. You will need the energy to work in partnership with a great cancer care team.

    Could you travel to NYC to have treatment at the Memorial Sloan Kettering Cancer Institute. I think it is in NYC and is called an Institute. I can help you locate resources for lodging and there are most likely monies available to helo with transportation costs. I have to make sure this is the facility that has great expertise with DCIS, and I will confirm with you that I have the right facility. I asked a breast surgeon about Sloan Kettering in Boston but she is on vacation so I am going to figure this out.

    I took four grueling 450 round trips to the comprehensive cancer care and teaching hospital where I received my care. I still have appointments there at the end of March so more travel is coming. It was tiring but I wanted the highest level of medical care possible. I spent relatively little money because the American Cancer Society has a partnership with Embassy Suites Hotel, and I stayed in a beautiful suite free of charge three times in a row in a month period.

    Will do some more research but I think Memorial Sloan Kettering Cancer Institute is the top cancer treatment facility in the U.S.

    Getting tired now.

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    DF, I'm with you on wanting the highest level of care -- and the most forward thinking of specialists. I will also travel if necessary. Thank you so much for all the checking! You really don't need to, but I appreciate whatever you find out -- as long as it's not taking a lot of your time. A hug to you. Get some rest!


  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2016

    Simsoka:

    Please keep in mind that I am a layperson with no medical training.

    I concur with Decision that you should not hesitate to seek a second opinion at a center of excellence in order to obtain current, case-specific expert professional medical advice advice regarding surgical options and treatment plan. One benefit may be additional professional input regarding your personal risk / benefit with different interventions.

    BarredOwl

  • sandcastle
    sandcastle Member Posts: 289
    edited February 2016

    The top Hospitals are....MD Anderson.....Sloan.....Mayo Clinic and then Dana Farber......Liz

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    Hi, Sandcastle, thanks for your list of rankings!

    I guess there must be different lists, but it doesn't matter as they are all great facilities. However, I believe Memorial Sloan Kettering may have established itself as the frontrunner in surgical treatment of DCIS (not sure if coupled with radiation but will try and verify) with rates of cancer recurrence after lumpectomies performed at that facility declining over the last few decades

    BCO published a news article recently highlighting this stunning news but I want to double check what I read.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    simsoka,

    Please run a Google search for the following article published by MD Anderson which Sandcastle has flagged as the foremost cancer treatment facility in the US. Read it all including the sidebar about the facility's interest and new initiatives in considering the use of neoadjuvant therapies and reviewing the need for surgery and/or radiation in certain women with DCIS.

    Ductal Carcinoma in Situ: Choosing Treatment for a Common Group of Early, Confined Breast Cancers

    If you travel a long distance for treatment, the American Cancer Society can arrange for you to take a commercial jet flight with donated miles. If you think this group is in line with your thinking, you could probably travel to Texas and meet with the group for an evaluation and start your neoadjuvant therapy right after that if both you and they agree is is a good idea and if you have hormone positive cancer. On the other hand, the group may be willing to meet with you and do your surgery a few days later using oncoplastic surgery to remove your DCIS and then do a breast reduction and lift that will compensate for having to remove a large amount of tissue. I know I have read that surgeons are doing lumpectomies for larger DCIS tumor masses than they did in the past.

    I did find the article on the BCO site about the decrease in cancer recurrence after lumpectomy for DCIS at Memorial Sloan Kettering over the past few decades. I got the impression that this study might be generalizable to other facilities due to improved imaging and maybe other techniques. I think you can run a search in the News section of BCO to find the article.

    It does seem that MD Anderson has a strong interest in all aspects of DCIS including neoadjuvant therapies. It might be challenging to orchestrate having your care there but then all the pieces might fall into place. I would print out the article that I have cited and take it with you when you meet with your MO. Or, maybe you don't want to bother with an MO where you live. Maybe it might be a good use of your time to get on the phone and talk with the MD Anderson folks. Only you can decide, but it is clear that you can find a medical team somewhere that will work with you.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    simsoka, I contacted a top breast surgeon that is a foremost expert in DCIS treatment. She replied right away to recommend that you meet with Freya Schnabel at NYU who she says is pretty open-minded about such things. I specifically mentioned that you are being railroaded by your path and surgical groups that will not provide information on your hormone receptor status or discuss neoadjuvant therapies with you.

  • sandcastle
    sandcastle Member Posts: 289
    edited February 2016

    DF.....you have to get some sleep......get rested....Liz

  • momoschki
    momoschki Member Posts: 218
    edited February 2016

    Just want to add here that FreyaSchnabel was my breast surgeon and still follows me 2x year. I think she's excellent and certainly is an expert in her field.

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    Thank you, DF! And momschki, it's so great to have a recommendation from someone who's been a patient.

    I called Dr. Schnabel's office today but it was closed for President's Day. I will try again tomorrow. I also have a call in to my second-opinion surgeon to talk about all this stuff.

    Meanwhile, I had a happy day today. A radiologist with my first opinion doctor thought she detected additional DCIS in another area of the breast (in addition to the confirmed 4 cm area). I was to have a biopsy with my second-opinion group today to confirm the radiologist's suspicion, but they saw no sign of what she saw via mammogram, and there was no sign of it on the MRI either. So no biopsy (phew), and no mastectomy, at least not unless there are surprises down the road.

  • momoschki
    momoschki Member Posts: 218
    edited February 2016

    simsoka, feel free to PM me if you have specific questions about Dr Schnabel. And great news that there was no evidence of additional DCIS

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    simsoka, great news about the DCIS not being in another place in the breast. With a size D cup, I discovered there is a risk of radiation poisoning and short and long-term serious impacts from radiation. So, you need to know going into surgery if you are going to require radiation. If you do, which I suspect you may due to the histological features of your tumor, then you have the right to request bi-lateral breast reduction. Don't hold me to this but I believe I saw that surgeons are doing breast conserving surgery on patients with DCIS tumors as large as 4 cm. It may depend on the location of the tumor and other factors. I will be crossing my fingers that you can have cancer surgery and oncoplasty. I am 61 and I am enjoying having new breasts that don't flop around! It is like getting a new life. One breast is a little lumpy but the PS says it will smooth out.

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    congratulations on your new breasts, DF! May you enjoy them!

    My second opinion surgeon didn't flinch at a 4cm area for lumpectomy. May that continue to be so. She did say I'd need both radiation and adjuvant hormones (depending on the receptor status, which is still tbd). Ihave an appt with a plastic surgeon tomorrow and have a long list of questions for him. Oncoplasty is high on the list.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    Yay, it sounds as if you are making progress! Onwards! Don't get upset if the PS is clueless. I would imagine with a high level of confidence that Dr. Schnabel can arrange for a PS at NYU.

  • april485
    april485 Member Posts: 1,983
    edited February 2016

    simoska, you are in a very unique and wonderful situation in that you are very close to top notch facilities for your care. MMSK, NYU, Beth Israel, all in NYC are top notch as is Dana Farber in Boston and of course I am biased about Yale and Smilow as I received my excellent care there and it is an up and comer in the list since they only opened less than a decade ago and already made the top 50 in the NCI centers and moving up slowly but surely.

    You could not do wrong with any of these facilities. I had a great BS, Anees Chagpar (head of the breast center at Yale) and so wanted to throw her name out there. She was responsive to allowing me to enter two clinical trials, one of them for shrinking my lesion before surgery and also partial breast external beam radiation. I am seeing her next Tuesday for a follow up and if you like, I will ask her if she feels lumpectomy to be feasible for 4cm of DCIS and also if she thinks breast reduction to be a good option (which sounds like a great option for some larger breasted women) Just let me know.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    april485, thank you for your very valuable comments. I appreciate your providing insights into the various facilities available near simsoka and also your letting us know about your participation in two important clinical trials. You have provided such important patient-focused information, and I am certain it will be helpful to other women seeking to learn about ALL their treatment options. Breast cancer treatment and prevention for DCIS and many other breast diseases seems to be changing at such a rapid pace that it is nearly impossible to learn about all the possible options by going to traditional cancer web sites. I hope you chime in to tell us about your experiences if you are comfortable in sharing any additional information.

  • april485
    april485 Member Posts: 1,983
    edited February 2016

    My trial is rather controversial around these parts since it involves taking an herb that people know to be estrogenic. Below, I copied and pasted what I wrote on another thread about this.

    I participated in a pre-operative clinical trial (although I did only plan a lumpectomy before I agreed to the trial) as well, but not with an AI. I took black cohosh, an over the counter herb to see if it would shrink my DCIS prior to the surgery. When I was diagnosed with stereo-tactic biopsy, my lesion was thought to be 2-3 centimeters but when they did the LX it was found to be around 5mm in size. My MO (who heads this trial) was thrilled and was hopeful the black cohosh was the reason it shrunk. Can't be sure until they gather all of the data and the trial ends but hey, it was worth a shot to me. I was happy it was so small when they took it out. I did have to have a second surgery though because I was also in a clinical trial for partial breast rads and one margin was less than 1mm and they all had to be at least 2mm's in size to qualify.I was treated at Smilow Cancer Center at Yale in CT. It is an NCI designated center. Here is the link to the black cohosh trial. https://medicine.yale.edu/cancer/research/trials/active/50-2.trial