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DCIS Treatment Plan: A New Standard of Care!

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  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    april485, thank you for the information. I admire you for being brave enough to join the black cohosh trial! It will be interesting to see the clinical data when it is published.

    I am wondering if the three weeks I was on Tamoxifen might have shrunk or destroyed the DCIS cells left from the first surgery since it is my understanding that the path report found no cancer. The radiation oncologist said she could not write orders for radiation therapy since there was no cancer. I think that it is very interesting that doctors at the NCI centers (the facility where I received care is a designated NCI cancer care treatment center) are using neoadjuvant therapies on what seems to be a regular basis to try and shrink DCIS tumors.

    The breast surgeon asked me to consider AI drugs for five to ten years. I am going to give them a try but I am concerned that they will make my fibromyalgia and arthritis symptoms more painful than they already are. I think there may be some trials where the researchers are experimenting with the dosing schedule of AI drugs to see if that will make a difference in the side effects.

    I dread having terrible hot flashes again. The Tamoxifen induced hot flashes are nearly gone.

    If I can't handle the SEs from the AI drugs, I won't take them. I don't want a seriously diminished quality of life. I will monitor my breast health carefully, exercise vigorously, and eat stinky and unpleasant vegetables that kill cancer cells!

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    Hi to my friends out there,

    I have been on a mission these past few days. First, I spoke to my surgeon who is on the case with getting definitive info on my hormone receptor status. She's requested my pathology tissue from the other hospital that doesn't test for it; hers does. She also hooked me up with an oncologist for info on neoadjuvant hormones or other things that could possible shrink the area of DCIS. So this is good! And because I am still very much in an investigative mode, I cancelled my lumpectomy scheduled for next Wednesday. I hope I am not putting myself at risk (it's been almost six weeks since my diagnosis), but I feel I would be doing myself a disservice if I didn't understand all my possible options so as to make a really informed decision.

    Have I told you I'm also working with a naturopath? I'm on a fruits and vegetables diet plus supplements, and knowing the HR status will help her develop an even more targeted plan, possible including AI natural foods.

    I met with a plastic surgeon yesterday. DF, seems I don't qualify for oncoplastic surgery. My breasts are a size D but they're kinda perky, so not good candidates (there's probably more to it than that, but that's what I retained!). He did state that if I had oncoplasty and had to go back for margins, his work could not be undone and redone, so it would mean a mastectomy. That may be what I ultimately end up with, but it's not where I want to start. He also said that radiation has a huge effect on the breasts --- lifting and shrinking -- often worse than the effects of lumpectomy. I will need radiation. What a bummer. Though I did find out my DCIS breast is a half CM smaller larger than the other one. I'm glad it's not the other way around. Maybe it will help keep me in balance -- a little???

    April, it would be wonderful to hear Dr. Chagpar's perspective given the high-level info I've given here. Thank you so much for the offer. DF and momoshki, I have Dr. Schnabel in my back pocket if I'm unable to make strides with my current group. I did get in touch with her office on Monday, but they need to see all my records and have me go down to NYC in person. I want to see things through with my current team first.

    Thank you for all your help, everyone. So much appreciated! And DF, I hope your recovery is coming along. Are you on narcotics? The plastic surgeon I spoke with said that's usually necessary for the first few weeks after reconstruction. Said working might not be possible -- even though I'm a freelance writer and work almost exclusively from home. He said my mind just wouldn't be on my subject matter. :)

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    simsoka, it sounds as if you are making great strides. I don't know if I would take the word of one PS about the oncoplasty but I had a different situation. I had already undergone one lumpectomy and the breast surgeon removed a large mass of tissue in the second lumpectomy (it was really a partial mastectomy as the PS had to do flap surgery) to make sure she got all the cancer that was not actually there. I was told radiation on size D cup breasts places the patient at risk for radiation poisoning. However, I probably don't understand all of the factors that could influence your breast surgery. I had heavy, dense, pendulous breasts. So, I can really only speak for my situation on the oncoplasty. There is always more than one way to do things.

    I did not take even one narcotic pill after I left the hospital. I never got the prescription for narcotics filled for the first excision or the second lumpectomy with the breast reduction, lift, and flap surgery. The anesthesiology resident had told me the day before the second lumpectomy and oncoplasty that gabapentin is being used increasingly to reduce post-surgical use of narcotics. So, I took one narcotic before I left the hospital, and after that, I went back to the hotel and took gabapentin and acetaminophen. I had gabapentin with me because I already take it for fibro pain. I live in chronic pain yet I don't seem to have much post-surgical pain. I am the worst person to ask about pain control.

    Gabapentin makes some people drowsy. I found out a few years ago that narcotics destroyed my judgment after I discovered major errors in a government project I was working on before I turned it in. I had been taking narcotics and was completely oblivious to the cognitive problems they were causing.

    As soon as you schedule your surgery, you should look for a thread on the BCO site for your surgery month. I was on the January 2016 Surgery thread. You could run a search with the key words and look at this thread as it is a great and very informative thread. By joining the thread for your surgery month you will learn a great deal about preparing for surgery, options for controlling pain, anesthesia, understanding lymphedema if you have lymph node removal, etc. Actually, I didn't need all the obsessive lists that some people created but that was because I had very good surgeons and good pre-ops the day before surgery along with a post op with the PS the day after surgery. And, I had neither lymph node removal nor a mastectomy. I learned about surgical drains but the little bit of blood and fluid that came out of my drains was so small as to be laughable. I am fortunate that my incisions which are extensive appear to be healing. I followed the instructions I was given as closely as possible. I am still concerned about the tissue that was moved during flap surgery but the skin over it has a good color, and there is no apparent tissue disintegration that I think would be obvious. There are many things that can go wrong during or after breast cancer surgery, and reading through the January 2016 Surgery thread might prepare you. I am sad to say that most patients receive very little information on post-surgical complications. I think mental preparation is a big part of the battle. I keep crossing my fingers that I will get through my recovery period of two months with no major problems. I am heading down the finish line on the first month post-surgery.

    So, I hope you keep moving in a positive direction to a place where you feel comfortable with your treatment options. I would ask your doctors how much time you have to explore your options. My timeline is not relevant to your situation.

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    Hi DF, It occurred to me that the PS I spoke to was talking about tummy tucks for mastectomies or moving latissimus dorsis tissue from the back to the breast for lumpectomies. That's probably why all the drugs. Oh, but you did say you had flap surgery. Hm. Doesn't that involve movement of a lot of tissue, too?

    My surgeon told me the standard of care is to have surgery within 8 weeks of the diagnosis. I'm not sure what that's based on. Perhaps to convey the urgency that we can't allow risky situations to run on forever without attention?

    Do you know why radiation on size D cup breasts is specifically mentioned as putting the patient at risk for radiation poisoning? I would think any size breast could be at risk, but that's just logic talking. I'm finding that my personal brand of logic doesn't always apply when we're talking medicine.

    You can see that I still have more questions than answers!

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    The PS moved some fatty tissue from one place in the beast to cover the space carved out by the surgeon. There could be some risk of tissue death, but I didn't have much choice since I was under general anesthesia when the PS had to make the decision about what to do. I wanted to avoid radiation very badly.

    I would not have the type of reconstructive surgery being discussed by the PS you consulted. The potential risks are too high for me, but that is my perception. I can't answer many questions about PS that moves tissue from one part of the body to another and cuts through important muscles but I have read about some bad stuff happening

    I keep going back to the idea that the best care available is from a full medical team at an NCI designated comprehensive cancer care treatment center or one of the exceptional facilities discussed by others in this thread.

    My personal and possibly uninformed opinion is that treatment timeframe is variable depending on the type of cancer. Survival for some types of cancers has been linked to rapid treatment, according to a news release posted recently on BCO. Nobody ever told me there was a standard of care schedule for DCIS, level one. Your tumor has a higher level of risk for becoming invasive and I don't know how that affects your window of opportunity to explore treatment options.

    I hate to be cynical, but the private general surgeon I saw first had his nurse practitioner call me and tell me that I had DCIS that would definitely turn into invasive breast cancer. That was a blatant lie designed to rush me into surgery. After I woke up and realized I was being railroaded, I cancelled the second surgery. I checked in with many medical professionals to determine how much time I had to come up with a treatment plan. If I had been a good girl and had done what I was told, I would have been unhappy for the rest of my life.

    I would imagine that the risk of radiation poisoning is higher for a large C or D cup due to more tissue being exposed to the radiation. There can be other significant short and long-term risks for radiating large breasts based on what I have heard. You can run a search on PuMed and pull up research on the dangers of radiating large breasts. I nearly got thrown into the radiation chamber because my medical team failed to realize how large my breasts are. Did it occur to you that the PS doesn't want to deal with the challenges that might be posed by doing oncoplastic surgery that you may need? That happened to me with an MO that didn't want to deal with issues around my being prescribed AI drugs. I wrote a letter documenting what had happened, and I had the MO released from my team by my breast surgeon who heads up the breast health center where I am getting care.

    Some doctors want the low hanging fruits. They want the easy money.

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

    Not to be a contrarian here, but I don’t just have D breasts: I have (acc. to the Universal Cup Size std.) D6 (I cup US or G cup UK) breasts. And I got radiation--was never told about radiation poisoning. Perhaps that was one of the factors in my getting the accelerated partial-breast radiation protocol: the area irradiated was the tumor cavity and a small margin around it, about the area of a B or at most small C. I was treated at an NCCI Breast Center of Excellence, part of a major medical school. My RO and MO are both on salary. Of course, I had invasive ductal, not DCIS--there was a single identifiable solid tumor, not scattered calcifications or cancer-filled ducts.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    Edited after a PubMed search

    Hi, ChiSandy, it doesn't sound as if you are being a contrarian. I am very glad that you explained how your radiation was performed as I have worried about your radiation exposure since I read a post where you discussed your bra cup size! Based on what you saying, the team chose to irradiate only a section of your breast equivalent to a B or C cup. That lines up with the idea of not exposing your entire breast to irradiation. There is an overview on PubMed that covers this topic and discusses the potential of radiation toxicity for women with large breasts that is available to anyone that wants to run a simple keyword search. In addition, there are other articles discussing the long term effects of radiation on large breasts. The PS validated that the author of the overview article was known to her as an expert. I was told by my breast surgeon that radiation would be much safer after the breast reduction. I did enough homework myself to feel satisfied with my own decision.

  • Annette47
    Annette47 Member Posts: 108
    edited February 2016

    For what it’s worth, I had radiation on D cups (definitely at least D - occasionally DD depending on brand) and had no issues whatsoever. All of my cancer was removed in the stereotactic biopsy, but I was still recommended whole breast radiation with boosts (because of a micro-invasion).

    As with Simoska, my cancer breast had always been slightly larger than the other one. For the first year or so after treatment, it was even larger than it had been (some swelling is normal for up to 2 years following radiation) but now, 3 years out, they are finally about the same size - something I had wished for most of my life, LOL as it makes fitting bras much easier.

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

    This is all very informative. I did not know that large breasts were at more risk when having radiation. I don't have them so I guess I never paid attention. I am a barely C cup and had partial breast rads in a clinical trial. You had to be post-meno, over 50, either DCIS or Stage 1, very recent (within 3 weeks) lumpectomy only, margins over 2mm on all sides and had to have a CT scan daily to pinpoint where the rads would be aimed. It was 2x a day, at least 6 hours apart, times 5 days and done! I opted to do it due to the short course. I did not burn, but I did have serious exhaustion for several weeks after completion that hit me like a brick wall. My breast surgeon implanted gold seeds in my breast prior to having the rads. It was done at higher dose than someone on the 5-6 week course but in the end, did not receive the amount someone with the longer course would receive. Basically, it was like having 10 boosts.

    The jury is still out (they are compiling stats still) on whether this works well long term, but I decided to do it due to the short time frame and the fact that if I ever have to have MX, I likely won't bother to reconstruct since I am already in my 60's and not worried about having them done. Twice a year, I still see the RO for 5 years and she takes pictures once a year. My breast that had the radiation is most definitely smaller/shrunken a bit. The dark skin has all but disappeared (finally as that was kind of bugging me) but the thing I don't like is the fact that my breast is definitely harder and more "rock" like.

    simoska, I will definitely talk to the Doctor about whether it is something she would do in terms of size. The way I get all of my doctors to answer me honestly is to ask them point blank "If it were your wife, mother, sister, daughter etc., would you recommend this" and it seems to work. I can tell by their facial expression they feel obligated to tell the truth.

    SillyHeart

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    Hi, everybody, my Dell computer broke down about the time of my breast cancer diagnosis. I can't publish the links to the articles on PubMed about irradiating large breasts because I am writing on a cell phone.The research literature is publicly available to anyone that wants to do a key word search. I am not giving medical or treatment advice. I have made it clear throughout that this is an imperfect record of what I have learned as a layperson, not an expert, and of my decision to seek out and learn about ALL my treatment options. If I can help someone on this board locate an expert medical team or treatment facility where he or she can get answers to inform life altering medical decisions or if I can provide a place where relevant topics can be discussed and others such as ChiSandy can enhance the discussion as she certainly did or April485 can help another cancer patient seek expert opinion as she has said she wants to do, then I will consider this thread to have done its job in bringing up critical topics for which information is not easily found or obtained. However, it is important to consult with the best experts you can find to make your own decisions after you become aware of the health issues that might impact you.

    As this thread grows, I keep learning and adjusting my knowledge base I definitely don't mean to frighten anyone. The effects of radiation on large breasts do not always show up right away. The articles I saw go back at least 15 years and some appeared to be long-term follow up studies. Please nobody panic. Each woman has a different physical make up and health profile. I think it is highly probable that your radiation oncologist looked at your breasts and made a risk/benefit determination but it scared me that my great doctors and medical students and other professionals involved did not realize that it would be risky IN MY CASE to irradiate without the breast reduction and lift. The clinical care coordinator who sat in the room where a big group of doctors and medical students saw my breasts was floored when she found out that I was a DD cup. It just goes to show that even the experts can miss important determinants that may affect breast cancer treatment.

    I was having breast reduction to lower my risk of breast cancer after the second lumpectomy. I had large, heavy, pendulous breast that are also quite dense. This type of breast appears to be at significant risk for radiation toxicity and short and long-term side effects. Without doing a full literature review, the most definitive thing I can say is that it is my understanding that there are plastic surgeons who are advocating the view that a woman with a large C cup or D cup or larger has the right to request a breast reduction before radiation. I mentioned to my PS that I wanted to learn the most effective way to be an advocate to help women learn more than they commonly know about oncoplasty in breast cancer treatment and prevention. My PS said she thinks it is an important area of cancer treatment and she felt that I should take it on. The entire team including the medical students who are learning about PS and in some cases PS and its role in oncoplasty became aware that I was doing my own medical research, and the PS was looking over my shoulder when I gave a third year medical student a hand written citation for the PubMed article that provides an overview of the role of oncoplasty and highlights some of what is known about the health impacts of irradiating large bressts. The PS nodded approvingly and said she knew the PS that wrote the article.

    I said there is often more than one way to do things, and ChiSandy mentioned partial breast irradiation that she had. I am not an expert but I think that partial breast irradiation is still being evaluated for its effectiveness in DCIS treatment as opposed to full breast irradiation. I had ACS send me clinical trials for which I might qualify, and I remember seeing clinical trials on various types of breast irradiation for DCIS that are under active study or evaluation. I was very surprised to learn in looking at the clinical trial descriptions that breast irradiation is clearly an area of significant research interest, and I would surmise that research into breast irradiation techniques must be seeking to improve effectiveness and probably also to reduce the risk of side effects to the woman.

    The PS did reduce me from a DD to a C cup and MY surgeon told me after the surgery that if I did need radiation that it would be safer for ME.

    My 85 year old mother has Stage IV breast cancer and she is in the hospital on a large machine providing oxygen to her lungs. She lost her lung function at some point, but the doctors don't know why. She has been on aggressive chemo and it may have degraded her immune system and opened the door to a lung infection. I had to tell my brother to take my mom to the ER on November 4 when I was out of town doing post ops. She has been hospitalized since then, and the doctors are aggressively treating her with antibiotics, steroids, and even something for shingles.

    I am trying to heal from the cancer surgery and breast reduction and lift. I am concerned about my mother who may or may not be with us very long. My brother had to be hospitalized last week, and he needs medical care. I feel overwhelmed!

    I will monitor this thread and if I feel better I will try to post some of the links on breast irradiation. I may take a break from doing much writing on the thread but will try to help answer questions if I have anything pertinent to say.

    I encourage anybody that feels capable of being part of a clinical trial to study DCIS treatments to contact the American Cancer Society for a list of relevant trials or to contact a specific research institution if there is a trial underway in which you might be interested in participating. It is the only way that treatment options for DCIS can be evaluated and studied for specific sub groups.

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    Hi DF, So sorry to hear of everything that's going on in your life. Sometimes it happens like that -- all at once. Please take care of yourself.

    I learned today that my receptor status is positive (so glad to finally know that) AND I met with an oncologist who may be willing to work with me on pre-surgery hormones to shrink the DCIS. He's got some research to do, but will be getting back to me early next week. I am hopeful. My fingers are crossed. I may be able to put off thoughts of radiation and reconstruction, at least for a while.


  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    Yay, simsoka, I hope you can shrink the tumor! It may change your options if that happens. Will keep my fingers crossed for you that you have a great outcome.

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    Thank you, DF! I will keep you posted.

    Smile

  • percy4
    percy4 Member Posts: 13
    edited February 2016

    Just checked in after some time away, so may not be Posting about the most recent comments. But. As to exercise. My RO (the smartest and most logical doc I ever met) was very study-oriented. He told me that while diet and weight are important, STUDIES have shown that ongoing exercise (ongoing; truly) has been shown to cut BC recurrence by over 30%. One reason, in addition to the fact that my personal recurrence chance is fairly low, that I opted to exercise rather than take anti-hormonals. Apparently, the recurrence chance is cut with exercise EVEN if you exercise but don't lose weight. Probably this does not apply to truly obese women, but, in general.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    percy4, my breast cancer surgeon told me the same thing about exercise. I probably have a very low risk of recurrence since I ended up with a negative path report, but the breast surgeon still set me up to see an MO and sent me for a DEXA scan. The surgeon went the distance for me so I am going to try the AI drugs. If I have intolerable side effects, I am not going to stay on the drugs. I am going to work towards vigorous exercise. I walked about one-half mile yesterday. I have to lose 45 pounds to get my BMI down, but exercise will be the top priority.

  • panky
    panky Member Posts: 11
    edited February 2016

    Hi Everyone,

    I haven't posted in a couple of weeks.  But wanted to report that after meeting with a second surgeon (I didn't love the first one who did my first lumpectomy) and then meeting with the plastic surgeon, instead of having a second lumpectomy, I am going to have oncoplastic surgery (my cancer affected breast is already smaller from the first lumpectomy). The plastic surgeon recommended this for my D cup breasts, it will give the surgical oncologist easier access to remove more tissue (I have papillar carcinoma in the lower right quadrant with associated DCIS) with hopefully clear margins this time.  The PS will then do a reduction and lift on both breasts.  I'm still supposed to have radiation afterwards, followed by drug therapy because my cancer is estrogen positive. The PS will leave the cancer breast a bit larger to account for shrinkage from radiation.  I was worried that Kaiser would not approve of this solution but was pleasantly surprised when the PS said that she'd read my file and everything I'd mentioned to the surgical oncologist and recommended the oncoplastic surgery which is what I thought would be the best solution.  Thank you Decision Freak, for showing me this option.  My surgery isn't scheduled yet but will be in early March.




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

    I wish the option of reduction had been made known to me by my BS. (Of course, it’s a longer recovery and we’d have had to cancel our cruise--but I would have given my eyeteeth to be taken down to a DD from an H/I cup--which radiation increased to an I/J). Perhaps that axillary seroma might never have ruptured from the weight of the breast (as my BS’ partner hypothesized as he stitched it up) and I might never have developed cording & lymphedema. Oh, well--hindsight is 20/20.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    Yes, Sandy, after I read about your breast size and the seroma, I was genuinely concerned. It seemed inappropriate to upset you since you had already had radiation. I am going to PM you.

    Everybody, what I know, I have shared on this site. As I recover from my surgery, I will try to make additional information available.

    Yet once again, I am going to reiterate that I am not a medical professional. The research I did was to support my own treatment decisions. Many factors affect each decision made between doctor and patient.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2016

    ChiSandy:

    Sorry you are dealing with this. It seems like lymphedema and cording are pretty unpredictable regardless of surgical choice, and choosing something different may not have the affected outcome. I had championship-level cording on both sides after bilateral mastectomy and sentinel nodes biopsies, including the side with a single node removed, no seroma, no radiation, no nothing (except giant cords).

    BarredOwl

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    BarredOwl, you are a rigorous thinker that brings major insights and fire power to the discussions here, and I respect you. Many surgical outcomes may be unpredictable as you suggest but I respectfully submit that some pre-surgery choices may affect surgery and treatment outcomes. I know you are trying to comfort Sandy, but that does not obscure her desire to know what options were not made available to her. Sandy is a lawyer and a multi-talented artist who may want to settle her mind with the available facts.

    I am genuinely sorry to hear about your cording. Breast cancer is vicious, and I admire your tireless spirit to help others in locating authoritative information and guidance.

    DF

  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2016

    I said: "It seems like lymphedema and cording are pretty unpredictable regardless of surgical choice, and choosing something different may not have the affected outcome."

    As the drafter, to avoid any possible ambiguity, I should have added at the end of that sentence: "with respect to lymphedema and cording." But my remarks were made in the context of another post, and I trust ChiSandy understood both my intended meaning and the support I wished to extend to her.

    BarredOwl

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    Body Mass Index (BMI) greater than 30 is a key risk factor for lymphedema. I will post the link for an article published in 2013. Researchers of that article recommend pre-surgical counseling for patients with BMI over 30. Also, an article on SNB with surprising findings I think. Focus of lymphedema research is to identify risk factors for lymphedema.

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

    DF, many women have lymphedema that are not at all over the ideal BMI so I put very little credence in some of these studies. It might be one of many risk factors but then again, so many "risk-factors" are bandied about when it comes to BC that I am growing wary of them all to be honest with you. It is a "blame the victim" mentality and it is starting to bug the hell out of me.

    I know you are trying to impart information that could have value for people but whenever I see the words "risk-factor" in this forum, I start yawning if truth be told. I worry that women with a BMI over 30 (me) will start to think they are the reason for their issues with BC and lymphedema which may or may not be true but has yet to be proven beyond a reasonable doubt and it serves no purpose to blame oneself. The study samples are always very small it seems! Edited to add one such study and they even say sample size is small! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3971794/

    The only few so far that have a VERY definite correlation to BC besides the BRCA and other genes/family history has been those irradiated at a young age for another cancer and those who had a previous breast cancer. Also, HRT has been correlated but other than those, all of the hoopla about the others has yet to be absolutely proven. They have an idea that women who get their periods really young (me) stop really late and have babies late or not at all and yada, yada, yada but what about the many people who did EVERYTHING right including exercise, good weight, eat a mostly or all plant based diet, children born young age and breast fed and on and on.

    There are far too many of those for me to believe much of the studies. I really am beginning to feel that all of this is random. It is a pre-disposition for our bodies to do something that is not normal in terms of cells going awry.

    Hugs for trying to educate but risk factors are leaving me cold lately. Just my 2 cents. Off my soapbox. Feeling like too many blame the victim studies cited lately and this one got to me probably because I am overweight...

  • simsoka
    simsoka Member Posts: 23
    edited February 2016

    Hi everyone. Update on preadjuvant hormonal therapy for me. The oncologist I met with here researched it with one of the hospitals that participated in the trial and agreed to manage the treatment for me. BUT when he consulted the surgeon, she said that since she uses the calcifications as a guide for what to remove in surgery, even if the area shrank or went away altogether, she would still remove the same amount of tissue as before. What a conundrum. The oncologist referred me to the surgeon he spoke with at Dana Farber, so now I'm going up there for a consultation. This new surgeon has had some success with removing smaller areas post-hormone treatment, and he has first-hand experience with the study, so I'm happy to get his third opinion.

    But I have read that calcifications rarely go away. Not sure what to make of all this. It's a microscopic disease. I understand the dilemma but removing tissue for phantom disease just doesn't sit well with me! Oh, and I have also cleaned up my diet, eating mostly fruits and veggies, including lots of aromatase-inhibiting foods (cruciferous) in the hopes of aiding recession.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    simsoka, you are making great progress. I don't know about the micro calcifications. I am glad to hear that you are consulting with the surgeon at Dana Garber. I read something this morning about surgical removal of tumors that are 4 mm or smaller. I have a busy day but will see if I can locate the article. Now I am curious about the micro calcifications. My surgeon removed a very large chunk of tissue, but the plastic surgeon replaced it in flap surgery. I am embroiled in a situation at the acute care hospital where my mother is being treated. I will check back in later.

  • BarredOwl
    BarredOwl Member Posts: 261
    edited February 2016

    As of this date, in general, those initially diagnosed with clinical Stage I invasive ductal carcinoma (and clinically negative nodes) will receive sentinel node biopsy under NCCN guidelines for purposes of axillary staging. SNB has a low, but well-established association with lymphedema (reports of the incidence vary).

    New members can learn more about lymphedema here:

    http://www.stepup-speakout.org

    As of this date, the NCCN guidelines applicable to a person initially diagnosed with apparently pure DCIS and receiving breast conserving surgery (lumpectomy) are different. Sentinel node biopsy can usually be avoided in such case, although there are exceptions as explained in more detail here under the heading "Additional Information":

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

    In contrast, as a person diagnosed with apparently pure DCIS by biopsy, but receiving bilateral mastectomy, within applicable guidelines I received concurrent bilateral SNB. "[A]s reported in 10% to 20% of cases overall" per ASCO, my surgical pathology identified invasive cancer, and I was upstaged to Stage IA.

    BarredOwl

  • summerangel
    summerangel Member Posts: 182
    edited February 2016

    April485, I'm sorry that you feel that studies just blame the victim. I don't feel that way at all, because studies are meant for the population, not the individual. Any "risk factor" may or may not apply to the individual, and it may or may not produce the result looked for in the study. In the case of Lymphedema, it's been shown over and over again that higher BMI increases risk. Here's a review study that looks at multiple studies with many total patients: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC439374... Does that mean a thin person who had one or two nodes can't get it? No, of course not, as we all know.

    I think it's natural at first to feel bad when we find out that something we've done has been linked with a health issue, but in reality no one is perfect and we all live our lives with certain risks. If we tried to live completely "safely", none of us would ever get into a car and drive!

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

    I don't at all feel "the studies" blame the victim. I just don't put much credence in many of them. Every single day the television, magazines, newspapers, online publication cite another thing that we can do to stay healthy or another thing we should not do to stay healthy. I am just wary of so many limited studies that cite things as the cause. So many new BC patients come here for information and to find support. If they think they are going to get LE if they have a SNB or Axillary node biopsy because they have a high BMI, they might REFUSE to have one which could impact their very lives. So, I felt I had to say something about this because it is not the definitive reason women (and men) get LE for sure. Just my 2 cents as I said before.

    Edited to add that I don't even have lymphedema! Also, not one of the studies cited in the article you posted above had even a thousand people in them and two had less than 50. They even use the word "hypothesize" and that this needs more study. They did one of the studies with mice. When they know for absolute certain that something is causal, then it is different. I stand by what I feel.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    Sorry about the feelings you are having April. I am too tired to tease apart all that has been said. The point I was making is that pre-surgical counseling is being recommended. Decisions made before surgery can potentially affect outcomes. It is a point that I will keep making. We educate ourselves and pick out what seems relevant and do-able, and we make medical decisions based on a host of factors thsr make sense to us. I could go on but I got in a gigantic fight with the medical staff of the hospital where my mother is receiving care for her collapsed lungs.

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

    DF, I was in no way trying to upset you personally. I just worry that newbies will come and see that BMI stuff and then decide not to have nodes taken when they are told it is medically necessary. You are an intelligent and caring woman who posts lots of very informative information here. I just don't want someone to read too much into those studies is all.

    I hope that your Mom's condition improves and that you are ok. Hugs and prayers are with you.