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DCIS Treatment Plan: A New Standard of Care!

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Comments

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    April, you didn't upset me. Did you know that local and regional hospitals tend to take nodes more often than top notch major hospitals? I don't see why anyone would be influenced one way or the other by knowing BMI may be a risk factor for lymphedema. If they know, they can take steps to help prevent lymphedema. American Cancer Society has a large document on prevention and treatment of lymphedema. They will send it by email to anyone who requests it, and the same information is on the DCIS web site.

    Information is power, and I believe that the more we know, the better decisions we can make. The day I repress information out of fear is the day that I stop breathing.

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

    I know you don't see why anyone would be influenced by knowing that BMI can cause LE and not have them taken, but the sad fact is that it will influence someone who is newly diagnosed and frightened. While it has been established that high BMI is a possible contributor to LE, it is NOT a given that someone with a higher weight will get LE and that is how it will read to someone and that is why I posted what I did.

    I never suggested you should repress information but wanted to present another side to this because at least it opens dialogue between a BC patient and her doctor on a subject that is often never even talked about and so that is all good. I have said enough now and do not wish to stir the pot or get anyone upset or angry. I always try to come from a place of helping on these boards and as such, I said my piece and let whomever reads this discourse decide for themselves.

    Just needed to make sure that women know that it should not affect their decision to have lymph nodes removed if medically necessary just because they do not have a BMI under 30 because that could lead to very serious and dangerous consequences. As serious as LE is, sometimes taking nodes is absolutely imperative.

  • trailrose
    trailrose Member Posts: 89
    edited February 2016

    I had my BMX January 2015. They also removed sentinel lymph nodes on both sides due to me having a variant in the MSH2 gene. I asked my BS if I should be concerned with LE since I'm so active and he said since I was thin and physically fit the chances are very low. He and one of the PA's at the center said that they are realizing that women with high BMI's tend to be at higher risk. I personally didn't research this and know that not everything is "textbook" but find it to be interesting.

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

    trailrose, may you stay LE free. Unfortunatley, risk continues throughout life for this awful LE issue. Mostly in the first 3 years. I hope that being in good shape holds you in very good stead in this regard. Best of luck!

  • trailrose
    trailrose Member Posts: 89
    edited February 2016

    April485- Thank you. Believe me I still worry about it! So far I have been very lucky through my whole ordeal. My Sister, who was diagnosed with Stage III BC at the age of 27, 12 years ago is still going strong. She had many axillary lymph nodes removed from both sides due to having a BRCA 1 gene mutation and still hasn't suffered from LE. She is currently 50 lbs. overweight! I also met a wonderful woman 3 weeks ago who had Stage III BC in 1983 with the majority of her lymph nodes removed on one side and she doesn't suffer from LE. This woman is in her 70's but extremely active and super rail thin. She also has had appendix cancer and thyroid cancer!

    Watching my younger Sister go through chemo, radiation, BMX at the young age of 27 was traumatic for me to see. So early on I heard about LE and when I myself was diagnosed (43 yrs. old) with high grade DCIS I already knew way too much about BC. It sucks but life is to be enjoyed. I won't let it bring me down or live in constant fear.

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

    Amen trailrose...so sorry about your sister. Happy that she is still going strong and is healthy! You are both much too young to be going through any of this BC stuff. In fact we are all much too young to be going through any of this stuff. I think an appropriate age for DCIS or BC is .....ummmm.....never! LOL

    You are smart to stay active and thin as it most definitely is healthier no matter how you slice it. Hugs and best to you and may you always stay BC and LE free!

  • trailrose
    trailrose Member Posts: 89
    edited February 2016

    April485-I'm sending you a big hug!

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    Oh, well, I am dead tired. Everybody has a right to her opinion. I don't care what people write here as long as it is mostly relevant. If it is interesting and useful that is a big bonus. Opinion is opinion. We are all fighting for our lives in one way or another, and we ALL deserve compassion and caring and consideration. Hugs to all.😘

    The rest of you are very well capable of conducting a high level, informed and polite debate on lymphedema and BMI while I am watching my mother fight for her life at an acute care hospital from lung collapse that may render her too weak for chemo to treat her Stage IV breast cancer. I will have to catch up on the posts later. Welcome to newcomers and please know that I am very interested in what you have to say but I am in the middle of a family crises right now.

    The FACT is that the vast majority of women are risk averse and it would be highly unusual for a woman to refuse to have lymph nodes removed if the doctor says it is medically necessary. Would I refuse if a doctor that I respect said I had to have the nodes removed? If the doctor produced the medical evidence and appropriate policy guidelines, heck no, I wouldn't refuse. My BMI at diagnosis was 30. If I had required lymph node removal and if the doctor had counseled me about lymphedema and had told me how to learn possible ways to prevent it, I would have been grateful.

    However, the doctor would have to make his case clearly and with authoritative sources. I think BarredOwl presented the policy guidelines on lymph node removal. There are a considerable number of outliers like me who will relentlessly pursue the doctors and scour the available research and search our souls until we feel we know enough to make informed decisions about our own breast cancer treatment.

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


    I truly hope your Mom weathers this crisis and will be thinking of you DF. You don't need this on top of all you are dealing with and I enjoy friendly discourse like the above and when someone presents intelligent thoughts here, it makes it interesting and informative. I want you to know that I am truly sorry about your Mom and hope she is doing ok. Hugs.

  • trailrose
    trailrose Member Posts: 89
    edited February 2016

    DF- I'm so sorry that you're going through this with your dear Mother. My thoughts are with you at this time and I'm sending you a big hug. Thank you for your knowledge and extensive research you have done.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    Just a quick update. This is off topic, but I have mentioned my remarkable 85-year old mother who has metastatic cancer in her liver and her bones. My mother's doctor at the acute care hospital called today to say that my mother is rapidly recovering from her lung collapse in early February. She may be discharged from the hospital next week. We might send her to a rehab facility for two weeks to build up her strength again. The doctor thinks my mother still has some life in her.

    April, I like your concept of "friendly discourse." I once lost a friend when I made an effort to explain to her that many scientific insights occur by chance or happenstance or come from close observation or even dreams. We were graduate students studying literature at a major university. She didn't want friendly discourse on this topic. In her mind, science progresses in a perfectly linear way with new findings being generated by researchers in lab coats. This is of course the process by which each scientific hypothesis is tested, refined, and maybe revised. In any case, we had been good friends but it was too threatening for her to consider that new science emerges from the same creative chaos as art. She never spoke to me again, though I once sent her a check for $400 years later when I was working as a writer and she was a poor law student that had gone into credit card debt! So, onward with friendly discourse!

    This thread has brought new surprises to me. I thought it was over with my surgery but that was not the case.

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

    "new science emerges from the same creative chaos as art" Amen to that DF. As you well know, medicine is an art, not a science for sure. The science comes from repeatable and observable conditions derived from us guinea pigs, the patients..lol Thank goodness most of us willingly subject ourselves to their trial and error methods or they would know nothing about anything I suspect.

    Glad your Mom is doing well!

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited February 2016

    april485, I have learned from my mother that is essential to listen carefully to the patient's specific complaints. It has been a long road to understanding that it is necessary to hear what is being said without reinterpreting based on my own biases. It sounds simple but when you are dealing with an elderly person's health complaints it is a very had thing to do. When we have fallen short it has been when we failed to listen.

  • DecisionFreak
    DecisionFreak Member Posts: 435
    edited March 2016

    Edited to shorten post and to remove information that needs verifying

    Hi, again, April and BarredOwl, I was reading over a thread that I started last year in September after my first surgery. I noticed that both of you weighed in along with others to help me understand my pathology report and determine next steps. I had threads before that one to which you may have replied. Anyway, both of you have been companions since the start of my journey and have been very helpful. I am grateful beyond words that in this big world there are people like you that stopped to help. Thank you. I am active on some other BCO threads and try to chime in when I can.

    Some people have written about neoadjuvant therapy. I had no idea when I was given a prescription for Tamoxifen at my first meeting with the medical team that I was receiving neoadjuvant therapy! I was looking at a John's Hopkins University website and it clearly states that neoadjuvant therapy can sometimes cause the tumor to shrink or disappear before surgery. I stayed on Tamoxifen for three weeks and I think that is why I didn't have any cancer when the breast cancer surgery was done.

    Off topic. I am having reproductive tract issues right now that are concerning. My problems are borderline. I am not sure why but these issues are stressing me out far more than breast cancer. I am very upset and will be seeing my GYN doctor tomorrow.

    Has anyone read that some researchers think AI drugs are very toxic? I saw this somewhere, not sure if it is true. I bring up this topic because it seems as if most people that have been treated for DCIS are offered tamoxifen or AI drugs to prevent breast cancer. AI drugs do prevent recurrence but I read in at least one place that they do not improve overall survival. Not sure why, but one reason may be that about 67 percent of women that start AI drugs stop taking them after three months. I am not anxious to submit my bones to being crumbled by these drugs or suffering from hot flashes or additional arthritic symptoms. I never had hot flashes before I went on Tamoxifen, and now I have hot flashes every day. I take Gabapentin for fibromyalgia and it is also given to prevent hot flashes but it causes water retention and keeps me from losing weight so I have lowered my Gabapentin dose and the hot flashes are worse. I already have arthritis and fibromyalgia and I don't look forward to more pain than I already have. I don't want bone drugs due to having dental problems that might place me at risk for jaw problems.

    I drive myself crazy thinking about this stuff. I guess it comes down to not wanting to take AI drugs.

    Does anyone know if it is true that AI drugs do not improve overall survival? For a long time, researchers said radiation after lumpectomy did not improve OS but I think there is new data now saying that survival is longer for women that receive radiation. I would have gone over the deep end if radiation had been recommended. As it turned out, I didn't qualify for radiation and didn't have to make a difficult decision about whether or not to have radiation. I may wish someday that radiation had been possible.

    Completely off topic. No need to read this paragraph unless you are interested in the way doctors and hospitals treat patients. I will complain to the woman that runs this thread that Decision Freak ran the horse down the wrong road going way off topic. Have I put everybody to sleep yet? I am still waiting to hear when we can get my mother out of the acute care hospital and into rehab. I have figured out how to lodge embarrassing and legitimate civil rights and HIPPA complaints against the acute care hospital as a punishment for treating my mother like a dying woman instead of a living one and a big complaint against another local hospital that treated my mother in an unconscionable way last year. I am sick and tired of the doctors and hospitals in this small Southern town feeling they can get away with anything. The lady at the state public health department told me to call her when I am ready to lodge a formal complaint about what happened last year. I could tell that she was disturbed when I told her what had occurred. I asked her what the benefit would be from filing a complaint. Her response, "Maybe someone else's Mama won't have to go through what yours did," Am I angry about the way hospitals where I live treat the elderly and the helpless? Yes, I am.

  • hillhouse103
    hillhouse103 Member Posts: 1
    edited July 2016

    Hello, Decision Freak!

    Sounds like I might be a freak from another mother; I too was diagnosed with DCIS, but level 2-3, and I had a "partial mastectomy" as they call it; really a lumpectomy, but my breast definitely looks "damaged." Haha. Anyway, I told the radiation oncologist that I didn't want radiation because if cancer reoccurs in that breast, my only other option would be chemotherapy. Many, many people don't know this very important fact about radiation. In fact, I just read radiation articles on this site that neglected to mention it. The radiologist said radiation in my situation was considered "standard of care" but he understood why I deferred. Then it was on to the medical oncologist, who recommended an AI but said I might want a DEXA scan first. Sure enough, I have osteoporosis, so she agreed that I could take Tamoxifen if I could tolerate it. I took all this information to my trusted gynecologist, who agreed that an AI wasn't a good idea, and reminded me that radiation wouldn't help the other breast at all, where medication would.

    So in short, I made my own treatment plan. You have no idea how many women have said to me, "Well, I didn't have a choice" about their own treatment. Of course you have a choice! All the best to you.

  • sandcastle
    sandcastle Member Posts: 289
    edited July 2016

    You, sure do have a choice....because it is your, journey....Liz