unilateral of bilateral mastectomy for DCIS?

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dragonsnake
dragonsnake Member Posts: 159

I need some help with descision making on my  next treatment  step. I was originally diagnosed with 3 cm high grade + comedo necrosis DCIS in the breast. Two lumpectomies removed 4.5+4 cm lesions, one margin is still not clean. MRI did not exclude residual DCIS around the lumpectomy cavity. The other  breast also lit up, but they attributed it to cysts, and said that no malignancy was found; ordered a new MRI in 6 months. My surgeon was leaning toward a third lumpectomy  even before the MRI,  which means rads. Every time I point out to him that I'm from Chernobyl zone,  was exposed to radiation and do not want rads, he dismisses it. After antibiotics given during the lumpectomies my GI tract is in mess. Nothing is digested properly ( I eat only apples, veggies (raw and cooked), and some boiled beef and chicken.)  I've got yeast infection. My surgeon is not concerned about this either. He is considered the best breast surgeon in the area, and I think that he knows how to cut, but he is all for breast conservation.

I just cannot do numerous surgeries to remove this and then that.  I'm leaning toward a double mastectomy, but afraid of SNB on both sides (that my surgeon usually does for mastectomies),  and it's consequences, i.e.  that I may develop a lymphedema, PMPS, and have no good hands for the IV,blood draws, and blood  pressure measurements.  My DH wants me to do more biopsies on the seemingly non-affected breast, and cut it as needed, but he is not against a  mastectomy for the cancerous breast.

I would really appreciate your opinion and your experience shared with me.

Comments

  • Jelson
    Jelson Member Posts: 1,535
    edited June 2016

    dragonsnake - I checked some of your previous posts and note that not only does your surgeon brush off your history of radiation exposure and your antibiotic treatment related digestive issues, but also your history of fibroids as it relates to a possible prescription for tamoxifen in the future. You certainly have had to be your own advocate so far and i the future, unless you switch surgeons or avail yourself of consultations with a radiologist and medical oncologist. I would lay out your issues and concerns and compare how they are impacted by your alternatives: a third lumpectomy, a unimx or a bmx. by issues/concerns I mean radiation, multiple antibiotic regimens,multiple surgeries, lymphedema, side-effects of tamoxifen etc. which procedure is most likely to reduce the issues which concern you?


  • dragonsnake
    dragonsnake Member Posts: 159
    edited June 2016

    Jelson, I'll see MO and RO this week. I 'm  also seeking a consult at UCSF with Dr. Esserman, who will not see me but transfer to one  of her associates. My problem is a reflection of modern medicine: they do not treat a patient as a whole but concentrate on separate issues. The first lumpectomy was done in a hope that DCIS is just 3 cm - 5.5X5 cm piece with additional margins  removed. The second  one - 3.5X4.5 cm +  margins, it had  more DCIS, which was not detectable on high-resolution mammogram. I understand that the surgeon goes in blindly, and has to guess. I also understand that doctors must be detached to do their job,  but I's me - a living human being who is a subject of their procedures, and it cases suffering to me. I'm seeking your advice on how to approach the whole situation, because you  have been there, and understand the emotional and physical toll of medical treatment. I can approach it rationally, but my heart cannot accept certain rational decisions. I'm a scientist, but I fully understand the limitations of a scientific method. Medicine is hardly a science: it's impossible to build a scientific  model of a phenomenon, design and carry out an experiment, and prove or disprove this model based on experimental evidence. Medicine is about what works, and what does not. Unfortunately, what works for one ,does not work for another individual. It would be so nice to have some intuition and faith, and not  make decisions based on fear. I'm seeking your advice on decision-making. Thank you

  • LAstar
    LAstar Member Posts: 1,574
    edited June 2016

    I took probiotics and ate lots of plain yogurt to help with the effects of antibiotics.

    This is a tough decision!!! I too had suspicious spots on the other side from the MRI, but after my BMX nothing was found there. A benefit of MX is avoiding the radiation. If there is nothing suspicious on the other side, there is no reason to have a SNB on that side. I did not and am glad to have a "good" side for blood draws.

    Our situations are very similar: extensive DCIS, involved margins after two lumpectomies, suspicious spots on the other side. This is a difficult decision that really only you can make. I have gone back and forth on whether or not having the prophylactic MX was a good idea. I've avoided a lot of intense monitoring that would have been done, but I removed a healthy breast. Reconstruction is no fun.

    One of my friends said that "you have to do what you can live with in the dark of the night." It seemed overly-dramatic at the time, but there is truth to it. Do what gives you the most peace moving forward. There are no good options with this stuff, only Crappy Option A vs Crappy Option B. I wish you the best. Ask any questions. Hugs!

  • dragonsnake
    dragonsnake Member Posts: 159
    edited June 2016

    Thank you for everyone's compassion and support. I'm trying  to be somewhat detached, and rationally approach   my case, but my heart is in fear, and it clouds my judgement. And I do have questions.

    Did your surgeon offer SNB for the suspicious breast? How did you make a decision not to do SNB on it? What if the suspicious stuff turns malignant after  BMX?

    Also, how would I know if cancer returns to my flat chest?

     I will not do reconstruction to avoid more surgeries.

    My DH is the one who pushes for cutting off piece by piece, when the pieces become malignant. I cannot convince him that each procedure causes physical and emotional turmoil.  

    I'm worried about lymphedema and PMPS, and the havoc  antibiotics will certainly do to my GI. It took me three years to nurse my intestines to some resemblance of normalcy after h. pylori treatment. I'm taking  probiotics for three years now with limited success.


  • Icietla
    Icietla Member Posts: 1,265
    edited June 2016

    At this thread linked here, member Ruthbru's post reproduces the content of a classic post by member Beesie, reviewing a lot of considerations in deciding extent of surgery for breast cancer.

    https://community.breastcancer.org/forum/91/topics/844998?page=1#post_4740006

    I am very concerned that others -- your Surgeon and your husband -- are trying to steer your decision. Yes, everything about breast cancer -- and every cancer -- sucks, and it is devastating -- to our Life Partners too, of course --, and there is a lot of feeling of helplessness -- for our Life Partners too, of course. In an ideal world, we would wish cancer away. But we have the awful situation, and the awful options of the appropriate surgical treatments. That is one break (of sorts) we should be able to count on -- making our own choices from among our options. The extent-of-surgery issue -- there is nobody -- Nobody! -- that decision will affect nearly so personally and so immediately (in every sense) as it will affect you -- all your days, all your nights, all your time, you will live with it. So it should be your choice, what would put you at your most comfortable from among the options -- from your physical comfort, from your spirits, from any concerns you may have that are part of you being the unique person you are.-- in short, it should be your own choice, whatever will put you at the best peace you can have about your situation.

    This is very personal too -- some stuff to ask yourself -- understand, no response/s required or wanted here. You and your husband would already have the answers in yourselves. What is he thinking? Is his stated preference coming from a protective mindset? Is he thinking that smaller surgeries/procedures would be easier for you, would cause you less shock, less suffering? Can he turn off his thinking to listen to (and absorb) your concerns that bear so much on your needs? Would your living together in peace depend upon your acquiescing to his preference, or could he adjust to your deciding for yourself about your surgery? How strongly are the two of you bonded? Even these considerations may weigh in deciding for yourself what would be best for you.

  • LAstar
    LAstar Member Posts: 1,574
    edited June 2016

    Dragonsnake, if we seem rational and composed, it's only because we have already been through it. There is no way to make these decisions without feeling scared and emotional.

    Ask your surgeon if he will mark the sentinel node on the other side with a titanium marker or something like it but not take it. Then if you have a BMX and find something in the other breast, the node can be identified later for removal. The surgeons act like taking a node or two is no big deal, but they don't have to live with the aches and pains and sleeves.

    I definitely made some treatment decisions that surprised my husband, but they were my decisions. He was a kind compassionate partner through it all, but they were not his breasts. He could forget about cancer for periods of time. I could not.

    Monitoring after BMX is tricky. I had trouble finding an oncologist who would follow me. One onc just told me to come see him if my bones start hurting. Fortunately, I finally found someone who takes my concerns seriously. BMX for DCIS is the most extreme treatment, and imaging is difficult to interpret for my reconstructed breasts. I've requested an MRI so that I can have baseline images in case something pops up.

    Hopefully you will have a quick recovery since you are not bothering with reconstruction (what a nuisance that has been!). I've heard some great recovery stories on this board, and there are threads for those who choose not to reconstruct, even with details on clothing options. Be clear with your surgeon about how you want to look post-MX. I have read some threads of women who wake up and find that their surgeons have left the breast skin because they were just certain that the women would change their minds and want to reconstruct. Grrr.

    I had some lingering zinging pains after MX for between 1-2 years and then they stopped. I just had a lymphedema flare-up after almost a year without and no obvious reason for it to pop up. None of this is a big deal, just an annoyance. You WILL get through this!

  • Icietla
    Icietla Member Posts: 1,265
    edited June 2016

    Dragonsnake, does your husband not understand that any (every) instance of breast cancer is life-threatening? That radiation treatment is generally considered necessary with breast-conserving surgery, and that any given tissue can have no more than its determined limit of radiation treatment? Any of your Doctors can give your husband simple explanation of why a cancerous breast must not be treated as if it were a salami. Would he listen to them and accept it from them?

    [I understand, I really do, about having had lots of radiation exposure and having it dismissed/disregarded as a risk factor for the stated reason that it did not count as a risk factor because it was not therapeutic. What difference would that -- the why of it -- possibly make to our chest tissues and their having had possibly contributing or even sufficient causal conditions to become cancerous?]

  • dragonsnake
    dragonsnake Member Posts: 159
    edited June 2016

    My DH, although highly educated, is mildly in denial. His philosophy is to cut only what's necessary. I made a  clear point to my surgeon  that I do not want  rads from the start, but was hoping that DCIS was highly localized. I could not mentally accept a mastectomy from the beginning. The extend of the problem was not known to me. I was lead to believe that grading of dcis is  subjective, and there are instances when rads can be omitted. Only after researching high-grade dcis and realizing the seriousness of it, I started thinking about a mastectomy. My surgeon also gives me "low %"  talk on lymphedema.  I want to have at least one good side. I doubt I'll have any support on BMX from the surgeon. He did the oncoplasty with each lumpectomy - could not help himself. Now I have a dog ear in between my breasts where there was some fat,  and look like a hooker from Total Recall.   Looking back at my posts, I would advice myself to find another surgeon, but mine is the best in town who does bc surgeries. I also may have an option to go to UC Davis, but it is a teaching hospital, and they let students practice cutting  you. I have an acquaintance   that had meshes put in for his hernia, ended up with a big bruise extending from his knees to the neck, got hooked on pain meds, an eventually fired from his job.

  • Icietla
    Icietla Member Posts: 1,265
    edited June 2016

    [Quote] " I would advice myself to find another surgeon," [Quote] "I doubt I'll have any support on BMX from the surgeon." [Quote] "I also may have an option to go to UC Davis,"

    Dear, Listen! Listen to yourself!

    I went to the best Surgeon in town. I woke up with deflated breasts. Please read through this page linked here.

    https://community.breastcancer.org/forum/82/topics/818608?page=18

    I am not trying to influence your choice. I wish for you to make your own surgery choice and to have your own choice respected, treated as worthy as any other choice.

  • dragonsnake
    dragonsnake Member Posts: 159
    edited June 2016

    The truth is - no surgeon is perfect, but teaching hospitals allow students to practice procedures on patients. This is not acceptable for me. I need surgeon to do his job after I make up my mind what to do. They are humans that have their own philosophy and outlook on life , and they live by it. Any surgery can turn out badly, even in the hands of a good surgeon.   I'm very much aware of possible bad outcomes.  I'm scared to death already. I have the insurance that I have. I cannot go to Pink Lotus clinic, or have surgery at UCSF by Dr. Esserman, or by Dr. Silverstein. I've seen another surgeon  covered by my insurance regarding my other surgical issue, and I wasn't impressed: he just said that I have to decide if I want to do a procedure, or just stop bothering him. He also came very much recommended. Surgeons perform procedures to the best of their ability and to the best of their judgement. Like all of us they make mistakes and have bad days. Their job is to make life and death decisions every day. No human being can handle such stress. They  also have to stay detached  from our personalities in order to do their job. We as patients pay for their mistakes, but that's what we have to accept when we  seek their help. They are not Gods.

  • dragonsnake
    dragonsnake Member Posts: 159
    edited July 2016

    Here is the update on my condition.

    After many consultations and many  considerations taken into account, after two lumpectomies that failed to achieve clean margins, and an MRI that showed more suspicious spots in the DCIS breast and high- background signal in the contralateral breast,  I proceeded with  a double mastectomy, no reconstruction. I had a SNB on the cancerous side only; two lymph nodes were removed during the surgery.  I requested to be given a toradol/ketorolac pre-incision.  I was given ketorolac as a pain-killer after the surgery  (every 6 hours for the first 24 hours) . I did not take opioids, only extra strength Tylenol afterwards.

    I had my drains removed on the 7th day. I have a reasonable range of motion, within 90 deg, but cannot dress myself independently. My left hand hurts and feels weak, my shoulder is sore,  but no apparent swelling. My chest swells by the end of the day, though. I do a modified bikram yoga for the muscles in my back and legs, without moving my arms beyond 90 deg.  I also went for a walk several times. .  I still do not have my pathology report because they are waiting for my previous pathology slides to be returned from UCSF where I had my second opinion.

    I really wouldn't be able to go through all this the guidance and support of wonderful ladies on this board . THANK YOU for being there for me, for your wisdom and kindness, for your hard work educating other members, and your relentless following of all relevant research.


  • ksusan
    ksusan Member Posts: 4,505
    edited July 2016

    Glad you're on the other side of it!

  • LAstar
    LAstar Member Posts: 1,574
    edited July 2016

    So glad you have this behind you, dragonsnake! Best wishes for good news and soon.

  • dragonsnake
    dragonsnake Member Posts: 159
    edited July 2016

    I  got my pathology report later today:  nodes are clean, some DCIS around the lumpectomy site, no IDC found in either breast, seemingly clean margins. This is the best I could hope for. My husband  thinks that I needlessly cut out the breasts, but I'm happy if I can  avoid rads and hormonals. I didn't do well on the pill - was rendered non-functional, foggy minded,  with restless leg syndrome after only 4 days on estrogen. I realize that tamoxifen and AIs can be different, but still... Well, I hope I bought myself some time, but I fully realize that the ugly recurrence  beast can raise it's head any time, and BMX is not a cure but a chance .

    Thank you again for sharing your experience and expertise, for being there for me, for your help and understanding. I'll strive to pay it forward.

  • Meow13
    Meow13 Member Posts: 4,859
    edited July 2016

    Good pathology you should have an excellent prognosis no IDC fantastic.

  • LAstar
    LAstar Member Posts: 1,574
    edited July 2016

    Great news! So maybe you're done? Rest and heal well with a new dose of peace-of-mind.

  • dragonsnake
    dragonsnake Member Posts: 159
    edited July 2016

    I'll see my MO in a couple of days, and figure out  if I need some further treatment , including a possible hysterectomy for fibroids and hereditary uterine cancer, and how I can be monitored for possible recurrences and mets. I guess it's not easy to find someone who is willing to order MRIs on the regular basis for me.  

  • LAstar
    LAstar Member Posts: 1,574
    edited July 2016

    I have had trouble finding someone to order MRI's but I finally did find both an OB/GYN and Onc who think it's important to have an MRI every 2 years. My insurance pre-approved it, which was a big relief. Results came back clear 2 weeks ago, and I am thankful.

  • dragonsnake
    dragonsnake Member Posts: 159
    edited July 2016

    This is great news!

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2016

    Great news dragonsnake and LAstar!

    BarredOwl

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