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DCIS Treatment Plan: A New Standard of Care!

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  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    JerseyRenee01,

    With lumpectomy alone, there is a high risk of recurrence. Even my medical team, group of three oncologists at one of the top ranked teaching hospital with a comprehensive cancer care, a team trying to work with me has said I need at least one adjuvant therapy, either radiation or chemo preventive drugs. And, that is if the second lumpectomy is pure DCIS.

    These are difficult choices. My team started me on Tamoxifen right away. I don't like the idea of taking it, but I have the chance of stopping this tumor from growing and maybe shrinking it before the second surgery.

    It is strictly one day at a time

    Your team will have more definitive recommendations after the path report. Same for me, but I am driving myself crazy, anyway.




  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    JerseyRenee01,

    I am surprised that the Penn doctor who has done clinical trials is saying lumpectomy alone. I was thinking someone might say that to me, but I was wrong. The science is not there yet to say who can have lumpectomy alone without a high risk of recurrence.

    I have pure DCIS with no other problems on any imaging or ultrasound and no lymph node involvement. I have had tons of mammograms, two ultrasounds, one lumpectomy with path report saying DCIS, and three opinions.

    I suspect the Penn doctor may sense your hesitation and may be waiting until he has more information.

    I was thinking mastectomy at first. The more I thought about it, the less inclined I was to do it. Survival rate is same for mastectomy as for lumpectomy plus radiation. Still, it is an option if it is desirable to avoid radiation.



  • april485
    april485 Member Posts: 1,983
    edited December 2015

    Yes, it is used to treat Mets although mostly I see AI's used for this purpose. But, tamoxifen is also use in DCIS (and AI's for some of us who cannot take tamoxifen and are post-meno) to prevent recurrence (odds are small for this) and to prevent another BC from developing if we are ER+ which in my case I most definitely am (>95% ER+) so most (but not all) DCIS is treated with radiation and/or tamoxifen or AI. The rads are also to prevent any stray cells that might have been missed in the lumpectomy (usually no rads for mastectomy except rare cases I have been told) from causing trouble down the road. Small DCIS lesions often are able to forgo rads so they like to make sure that at least tamoxifen is given if ER+. At least that is my understanding although many opt out of both and do fine. No one size fits all in BC, that is for sure!

  • JerseyRenee01
    JerseyRenee01 Member Posts: 144
    edited December 2015

    I guess until they get that final path report they cant put the pieces together!

    I just don't know if this nipple thing should even be an issue! I guess the bonus of doing that surgery was to check nipple to see if ok to even do nipple sparing MX cause otherwise keeping it at BMX they checking it then, worst case I have to go back & get them removed.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    marijen and everybody,

    It is good to know the doctors and other providers have to tell Medicare patients ahead of time in writing if they are providing services or equipment not covered by Medicare. I have had some fights with medical billing offices trying to force me to pay providers when Medicare said I didn't owe any money. I won.

    I am supposed to get pre-approval for genetic testing. I am finding out there is probably more cancer in my family tree than I knew about. Only my mother is a first degree survivor from what I know, but I have cousins that I don't know anything about.

    I read about the dangers of Ambien. Now, I don't want to take it. I am already taking enough meds with side effects. I did not take it last night. I stayed awake and got very little sleep.

    I am tired of thinking about this topic. Somebody recommended light distractions. I help take care of my mom who is 85 years old and who is undergoing chemo for metastatic breast cancer, and I do some of the housework. I feel guilty doing fun things these days. I was remembering how much fun my family had when I came home during college holidays. And, despite the hard work, how much fun I had when I worked in the D.C. area. It was a roller coaster life, but it was better than sitting on the couch trying to figure out my risk factors for breast cancer. And, how much fun I had getting two advanced degrees. I had some health problems but I was mostly okay. Life was exciting and interesting for a very long time. It is impossible to predict individual risk without a great deal of information, anyway.

    Well, now I have to see the GYN doctor because of brown discharge two weeks after starting Tamoxifen. I really don't think it is serious given that I had a D&C and polyp removal with large tissue sample biopsies in August 2014. I cannot believe that I went months with a brown or reddish discharge in 2014 and did not see the GYN doctor until I had uterine bleeding.Talk about denial. I was okay, then, no uterine cancer.

    Too many meds, too many doctors.

    No wonder I jumped on a small airplane for a joy ride at 4000 to 8000 feet to meet with my cancer doctors. Life is not worth living without some joy and challenge.



  • marijen
    marijen Member Posts: 2,181
    edited December 2015

    Decision Freak - please go here to check side effects (adverse reactions to Femara and Tamoxifen) http://www.drugs.com/pro/femara.html I see endometrial hyperplasia as a bigger one for Tamoxifen. And there is plenty more at this page. http://www.drugs.com/pro/femara.html

    Found under the first chart:

    When considering all grades during study treatment, a higher incidence of events was seen for Femara regarding fractures (10.1% vs 7.1%), myocardial infarctions (1.0% vs 0.5%), and arthralgia (25.2% vs 20.4%) (Femara vs tamoxifen respectively). A higher incidence was seen for tamoxifen regarding thromboembolic events (2.1% vs 3.6%), endometrial hyperplasia/cancer (0.3% vs 2.9%), and endometrial proliferation disorders (0.3% vs 1.8%) (Femara vs tamoxifen respectively).

    At a median follow up of 73 months, a higher incidence of events was seen for Femara (13.8%) than for tamoxifen (10.5%) regarding fractures. A higher incidence was seen for tamoxifen compared to Femara regarding thromboembolic events (4.5% vs 2.9%), and endometrial hyperplasia or cancer (2.9% vs 0.4%) (tamoxifen vs Femara, respectively).

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    Yes, I know about the increased risk of uterine cancer, endometrial lining overgrowth, and hyperplasia. I think I will need to be monitored given the fact that I had atypical uterine cells in August 2014.

    I have fibromyalgia and other health issues. My first inclination was to have a mastectomy. I don't want radiation and I don't want any of these chemo preventive drugs. I am not feeling well on the Tamoxifen. All the progress I have made in dealing with my fibromyalgia is flying away.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    Hi, again, marijen,

    Thanks for posting the link comparing Tamoxifen and Femara. I looked at the chart and found it interesting






  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    I just read in the Web site guidelines that we are supposed to greet all newcomers that post to our threads. So sorry if I failed to you greet some of you. I have read all of your posts with great attention and care.

    For now, this thread represents all I know about the standard of care for DCIS. I seem to be moving in a Dragon slaying (problem solving) direction. I will continue to monitor this thread and add relevant thought and read and respond to additional posts.

    This thread has been a rich experience for me. For those who have posted to date, I am in genuine awe of how much you care.




  • Canadagal71
    Canadagal71 Member Posts: 1
    edited December 2015

    I just wanted to reply to your comment about DCIS not being palpable. My DCIS was VERY palpable, (13cm tumour that felt like half a lemon), but did not show up on mammogram or ultrasound.I was told it was fibrous dense breast tissue. After 8 months a specialist did a needle biopsy and confirmed that no, it was not beneign. It was cancer. My DCIS was very palpable and finally showed up on MRI. Ive had a unilateral mastectomy and am waiting for pathology reports as to weather or not I'll need radiation. I'm getting a mastectomy on the other side as well. I don't want to live with the worry that comes along with having breast tissue at all!

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited December 2015

    I wanted to add some news about my journey.

    I was unable to tolerate Tamoxifen. The SE's nearly killed me. At this time, AI drugs are off the table.

    I ran into a roadblock with my treatment plan at the comprehensive cancer care treatment center and major teaching hospital where I am being treated.

    I turned to a foremost breast surgeon and asked if I could tell her what happened. She agreed. After she read the massive email I wrote her, she got in touch with me. She said radiation treatment is too risky at this time. She wanted to know how I felt about breast reduction surgery. It was clear to me that breast reduction surgery after lumpectomy could remove many or most or maybe all errant cells usually destroyed by radiation. She called my surgeon with my permission, and my surgeon is 100 percent on board. So am I.

    This was the best option I had heard. I was doing a dance, at least in my mind. I am 40DD, and my breasts cause terrible back and neck pain, but few doctors will not accept Medicare for breast reduction surgery. Since mine is being done to treat cancer, Medicare will pay to have both breasts match each other.

    Without these huge breasts, I know I can live a far more vigorous life. That includes vigorous exercise. And, if I have a recurrence or invasive cancer, and if I need radiation to survive, the doctors will be able to irradiated one or both breasts. As you know, once a breast is irradiated, the doctors cannot irradiate it again.

    So, this is where I am in my journey.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited January 2016

    Hi Decision:

    Sorry the plan did not work out. I don't know much about reduction, but there is a lumpectomy + reduction thread here:

    https://community.breastcancer.org/forum/91/topics...

    BarredOwl

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited January 2016

    barredowl, I am thrilled with the new treatment plan. Preliminary data shows that breast reduction itself may significantly lower the risk for breast cancer. The caveat is that nobody is recommending breast reduction surgery for the purpose of cancer prevention. In my case, the breast reduction will likely remove most or all of the errant DCIS cells that are usually destroyed by radiation, it may help prevent future cancers, and it will give me a new life since these breasts are destroying my functionality and mobility and keeping my pain levels high all the time. I wanted a treatment plan that addressed my unique needs. I will go out on a limb to say that I think DCIS treatment will gradually move away from one size fits all. I have low grade DCIS with no evidence of any other disease process. So, it makes sense, given my health profile, to treat the DCIS conservatively and to keep the person with the disease as functional as possible. Thank you very much for the link!

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited January 2016

    I saw the plastic surgeon this past week at the comprehensive cancer care center where I am being treated. It was an extra trip requiring about 450 miles of round trip unplanned travel before I leave again on January 24. The plastic surgeon agreed to do a breast reduction immediately after I have my second lumpectomy on January 26. Make that bi-lateral - two breast reductions! At this time, I will not have radiation treatment or chemo preventive drugs such at Tamoxifen or AI inhibitors. Tamoxifen nearly killed me.

    I will go from a 40DD to a C cup in both breasts. The plastic surgeon told me the more breast tissue she removes the lower the chance of breast cancer. The plastic surgeon will also perform breast reduction surgery on my left breast so both breasts will match.

    All of the tissue will be examined to see if there are undetected tumors. The plastic surgeon told me that I have very dense breasts. Women with dense breasts have a far higher rate of bc according to a news article summarized on this site. If new tumors are discovered, we have a new diagnosis and probably a new disease. Breast cancer can easily hide in dense breast tissue.

    So, I started my journey to discover if there is a new standard of care for DCIS. I think as new research findings come out over a period of many years, much more will be known about DCIS than we know now. Since DCIS is many diseases under one umbrella, it seems likely that treatments may be adapted as closely as possible to the level of DCIS and the tumor characteristics.

    What I can say for certain is that you cannot sleep walk through breast cancer treatment. If I had accepted what I was told, I would be in line for radiation treatment. If you want information on why radiation treatment is a bad idea for large breasts (size D cup or larger and sometimes a size C cup) send me a PM and I will send you link on the topic. If I need radiation treatment after my breast reduction based on the pathology report, I will have a better chance of a good outcome than I do today. However, if the tissue reveals many hidden tumors, which is possible given the density of my breasts, I would imagine there is a very real possibility that I may require one or perhaps two mastectomies. This is the worst case scenario but I would prefer to find out now and not later.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited January 2016

    Hi Decision:

    Hoping for smooth surgery, a speedy recovery, and the best possible pathology results for you!

    BarredOwl

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited January 2016

    BarredOwl, thank you for your kind words. I am hoping for a the best positive outcome while mentally preparing for the worst. I am a generally positive person, but I have become increasingly aware that breast cancer is a beast.

  • joyefull
    joyefull Member Posts: 1
    edited January 2016

    your post was so long I'm sorry I had hard time taking it all in. I had dcis grade 3 had lumpectomy and 6 weeks radiation I choose no meds cause of side affects. I had wonderful team n SW FL. I will say radiation did shrink my left breast. So I look little odd but I wear a good bra. Are u taking tamoxifen?

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited January 2016

    Hi, joyefull,

    I am sorry that the radiation shrunk your breast. You might want to ask your doctors if your breasts can be matched with plastic surgery if it bothers you.

    I took tamoxifen for three weeks, and I thought I would die. At my age, the breast reduction will confer appropriately the same protection as radiation. The doctors think radiation is too risky for me with my severe fibromyalgia.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    I saw the breast surgeon and the plastic surgeon last week in post ops after my second lumpectomy and Oncoplasty, bi-lateral breast reduction and lift as well as flap surgery to fill in an area where the breast surgeon removed a large tissue chunk.

    In my post op with the breast surgeon, I found out that the pathology report was negative. I am completely cancer free. No DCIS cells or other cancer were found in the massive tissue sample removed from my breast. The tissue sample from my August 2015 showed DCIS cells out to the inked margins. In between the time when I kept researching my treatment options, the DCIS that remained after the first surgery vanished.

    The radiation oncologist told the breast surgeon that with a negative pathology report she would never order radiation. So, I won my battle against rads. The breast surgeon had told me before the January 26 Surgery that if the risk of recurrence was tiny based on the pathology report that she would recommend against radiation. Turned out nobody could find any DCIS.

    The breast surgeon, who heads up the breast health center where I am being treated, wants me consider AI drugs as chemo preventive against a recurrence or new cancer. The breast reduction and lift are an adjuvant therapy for me reducing my cancer risk equivalent to Tamoxifen.The breast reduction and lift reduced some of my chronic pain so AI drugs are back on the table. The breast surgeon sent me for a DEXA scan to see if I have osteoporosis. If I don't, I guess I will try the AI drugs though I am not excited about the idea of more meds over and above what I already take.

    So, I have been through two lumpectomies and a breast reduction and lift. The oncoplastic surgery allowed the breast surgeon to take out a large chunk of my right breast for cancer treatment. The plastic surgeon followed immediately behind doing flap surgery to fill in the tissue removed by the breast surgeon. The PS reduced my breasts from a DD to a C cup size.

    It took extensive research, a very good cancer surgeon receptive to a breast reduction and lift (oncoplasty) as an element of cancer treatment proposed by a famous cancer surgeon, two lumpectomies, a breast reduction and lift, and flap surgery to treat my low grade DCIS. I will not require radiation as there is no DCIS to radiate. I believe that I accomplished my goal of determining if there is a new standard of care emerging for DCIS. I believe that my case shows that doctors and patients can work together to develop a treatment plan for a specific patient's needs.

    Did I receive over treatment for DCIS? Maybe, since I was cancer free when I had the re-excision six months later. Do I regret the path I took? Not at all. I am glad to be free of the large breasts that weighed me down. I had no idea that a breast reduction and lift would be folded into my cancer treatment and prevention plan, but I am grateful it happened. I may bear visible scars for the rest of my life but I am willing to accept the scars as the price I had to pay in an effort to avoid radiation.

    I am on the fence about the AI drugs. I guess that is the next chapter.

  • momoschki
    momoschki Member Posts: 218
    edited February 2016

    Decision Freak, your experience in some ways mirrors my own. Much initial diagnostic confusion which yielded 3 separate dx's from 3 different major NYC hospitals: DCIS, borderline DCIS-ADH, and finally pure ADH. Lumpectomy revealed nothing suspicious-- normal. Apparently whatever it was was completely removed by the needle biopsy. After much research on my part, I decided on pursuing a bilateral reduction for additional prevention purposes. Went from a D to a B. Both the plastic surgeon and my onc and the time told me this procedure would cut my risk by half.

    Was I over treated? Perhaps, but I don't regret my decision at all. It's frustrating that oncoplastuc surgery does not seem to have made it into the mainstream -- I had to do a bit in searching on my own to find a team that embraced this approach. I've also been taking Evista for over a year so far, hoping it will increase myodds if never having to deal with this crap again.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    I mentioned the need to advocate for Oncoplasty to my plastic surgeon. She agreed. The surgeons know about it but the patients don't. I am very happy with my decision.

    I wrote BCO and told them they are way out of step in failing to cover Oncoplasty. No reply. It will be the next wave. It won't stay hidden as a treatment and prevention option much longer.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    P.S. I think oncoplasty can be easily done at any comprehensive cancer care treatment center that is affiliated with a major teaching hospital. The problem now is that patients don't know about oncoplasty and don't know its role in cancer treatment and prevention. A famous breast surgeon got involved with my case, and the surgeon was thrilled that I was willing. Not everybody is a candidate. Large breasts are probably necessary. No smokers. General good health to survive hours under general anesthesia. I knew this was a one time opportunity. I took it while I am young and healthy enough to cope with a brutal assault on the breasts. It can be dangerous surgery. Not everybody can cope with the stress.

  • momoschki
    momoschki Member Posts: 218
    edited February 2016

    What I found surprising (and discouraging) was the fact that the oncoplastic approach was endorsed (and hence performed) at one hospital, while less than 2 miles away, at another major NYC teaching hospital, my choice was dismissed: "Oh, we've never heard of that", they practically sneered and completely denied any preventive aspect to the surgery.

    Because I had to switch hospitals, I did the lumpectomy and the reduction separately. I didn't find the recovery from the reduction bad at all. By the third week out I was pretty functional and now, after almost 5 year, the scars are pretty invisible-- you'd have to really look hard to notice them.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    Well, Dr. Laura Esserman at University of California, San Francisco told me she has been using this approach for a decade. I had the lumpectomy done and immediately after the breast reduction and lift. No sneering, but I was at a top ranked comprehensive cancer care treatment center in a large Southern City, and the plastic surgeon said she did oncoplastic surgery all the time. Local and regional hospitals rarely have the expertise and knowledge found at large teaching hospitals.

  • momoschki
    momoschki Member Posts: 218
    edited February 2016

    Sadly, they pretty much sneered at me at NYU, which isn't exactly a rinky-dink institution. At Weil Cornell, on the other hand, they enthusiastically endorsed and performed the surgery. I think it says a lot about how far from the mainstream this approach is when a major teachinghospital and comprehensive cancer care center in New York City dismisses this as a viable option.

  • panky
    panky Member Posts: 11
    edited February 2016

    Hi Everyone,

    I'm new here, diagnosed last week (via excisional biopsy) with encapsulated papillary carcinoma and DCIS, my margins were positive and the marker analysis isn't completed yet. I have Kaiser and live in Nor Cal. The surgeon is recommending doing a re-excision/lumpectomy followed by radiation. He is not recommending a SNB.  I am 52 and have dense breasts, D cup.

    I am actually fine with having more tissue taken out, I'd like the peace of mind of more possibly cancerous tissue taken out, more effective radiation w/o large breasts (or even no radiation and drug therapy instead depending on the marker analysis?) plus the freedom of smaller breasts (for sports, not having straps dig in etc.).  I'm seeing a different surgeon at Kaiser this Thursday to get a second opinion.  I'm now thinking my best scenario might be lumpectomy with reduction on both sides with a lift. 

    Is this something you've found to be covered by insurance?  I believe that federal law requires insurance to pay for reconstruction following a mastectomy, but what about lumpectomy followed by radiation, which could disfigure one breast and leave it smaller than the other? 


    Thanks for your help and input!




  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    panky, based on what I learned, a woman is in serious danger having radiation with large dense breasts. I am taking this to PM. If anybody wants to know what I learned and why I had oncoplasty, let me know and I will write a post. I don't want to go way off topic but Panky needs to know some things that I am going to share privately.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    panky, I wrote you a long PM in response to your post. I lost the PM. I have important information for you. I will write another PM for you as soon as possible. You need to know your treatment options with large breasts before you go into surgery and radiation.

  • LisaAlissa
    LisaAlissa Member Posts: 34
    edited February 2016

    Hi DecisionFreak!

    Not to impugn the value of PMs, but there are probably lots of other women whose situation sounds like Panky's. And they're probably wondering what important information you have...why not just put it in a post?

    Just a thought...

    LisaAlissa

    Etc: spelling

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

    Yes, I was thinking the same thing DF.