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BREAST CANCER & ME *DECISIONS* Part 3

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    BREAST CANCER & ME *DECISIONS* Part 3

    **DECISIONS**

    Previously on BREAST CANCER & ME
    bad mammogram, led to a needle biopsy being done
    a Dx of DCIS, ductal carcinoma in sutu, basically cancer stage 0 still within the milk ducts and breast lining.

    After my doctor called with the DCIS dx., we were in his office within a few days.

    He examined the biopsy site and reassured me the bruising was normal.
    He came back in to discuss options after I was dressed again.

    Drawing a picture of what MY DCIS looked like was very informative. The cells were not only in the milk ducts, but also attached on the outside of them. There were a lot of them on several milk ducts. They were all still contained within the breast lining so far.
    Several were very close to my right arm pit/ lymph glands. He doubted they had spread, but would want to remove it to make sure it's clean. I agreed.
    He then laid out ...

    SURGERY OPTIONS

    Lumpectomy, removing just the affected breast tissue. In my case that would have been almost the top half of my right breast. I was a 36C barely. So basically, would have been breast removal.
    No go for me.
    Plus lumpectomies usually mean radiation followup and I did not want to undergo that with my MS fatigue. He said radiation would make me extremely tired. My DH answered that I wouldn't be moving then because I only had a few good hours of energy a day already.

    MASTECTOMY OF AFFECTED BREAST
    My case, just the right one breast would be removed. I wanted all the cancer cells removed, so that was a definite yes.

    DOUBLE MASTECTOMY-
    SIMPLE ONE ON LEFT BREAST, RADICAL ON RIGHT

    I asked him if i was crazy to want both breasts removed and would Medicare pay for it. He reassured me that it wasn't crazy, many women did that. In his opinion, my left breast would probably be affected within a few years.
    This was going to be my 14th surgery, if I could avoid another one, I would.
    So I told him that was what I wanted to do.

    The term 'simple mastectomy', doesn't mean it's easy. Just that they only take the breast tissue, not any lymph glands. The one lymph gland they took from the right side made it a 'radical mastectomy'.

    TO RECONSTRUCT OR NOT TO RECONSTRUCT
    Like most of us women, i rather liked having boobies. They made clothes fit better, definitely help with my body & self image, etc.
    So, I asked about reconstruction. The surgeon explained that it would make for a longer surgery. He would do the mastectomies, then a plastic surgeon would come and put in implants.
    It sounded straight forward enough to me. I was imagining waking up with fake boobies after surgery.

    PLASTIC SURGEON APPOINTMENT
    I was referred to a plastic surgeon. It took longer to get into see him. I was becoming impatient, but still holding onto the idea of having 'boobies' after surgery.

    Well, plastic surgeon burst my bubble! He explained that saline implants went in after surgeon.
    Then wait for breast to heal about a month before doing saline injections,
    At this point I was fogging over because this is NOT what I wanted to hear.
    Weekly injections, breast tissue expanding, etc., etc.???

    I left with 9 pages of read and sign consent forms. While reading, (remember these were MY plastic surgeon's forms, others may be different) I realized that I had a problem with at least one item per page.

    I didn't realize that saline implants were pumped up to right size over a month or more, then SURGICALLY removed and silicone ones inserted!
    I didn't want ANY MORE surgeries!
    Plus there were a lot of disclaimers about twisted implants, infections, breasts not being symmetrical, etc. All that alone almost made the decision for me.

    But, I still searched the web to see pictures of what I would look like with reconstruction and without. There were plenty of websites that I researched and studied for days. I will list them at the end of this. Some are not medical websites so PLEASE view them for what they are, someone's OPINION. NOT MEDICAL FACT

    After much prayer, research, talking to brave women who've faced breast cancer. Their stories helped me a bunch! Thank you to all who helped me through this time!!!
    Also discussing with my husband, who told me to do whatever I needed to do.
    It was a hard decision, but I opted for
    NO RECONSTRUCTION.

    It was the right decision for me. I'd had so many surgeries, I had a grandbaby due in a month, which meant she could come at anytime. A reconstruction would take longer to recover from and I just wasn't willing to put my life on hold that long.

    My decision in no ways puts down those who opt for reconstruction.
    I TOTALLY understand why anyone would want reconstruction. Under different circumstances, I might have.
    But I had time pressure and was so sick of being sick!!
    I'd just 'recovered' from a relapse that took months of steroids & antibiotics to relieve the symptoms. So I was physically weak going into all this.

    FYI- there are several types of reconstruction surgeries. Some can even be done years after mastectomies.

    Listed are some websites that helped with my decision,

    Please be aware that not all of these are medical websites (from a hospital, cancer institution, etc,) As before I strongly suggest reading what your plastic surgeon gave you and check out their websites first.

    Several of these sites have graphic photos of actual chests before and after reconstruction. They are purely to help you decide. Only the torso is shown, nothing identifiable about the person. These I found very helpful in being very realistic about what to expect to look like if I didn't do reconstuction.
    Read carefully what the captions say, some chests look like they did not have reconstructive surgery, but in fact did and something went wrong.
    I also have listed a website dedicated soley to those who decide, for whatever reason, not to reconstuct. This site I still find very encouraging and instructive.

    Prosthesis are also a consideration if you don't do reconstruction. There are so many advanced ones coming out. Great alternative to surgery.
    But that's for another post.
    http://slu.adam.com

    http://www.siteman.wustl.edu

    http://www.plasticsurgery.org/Recons...rocedures.html (this one has before & after pictures of many different breast surgeries.

    http://breastfree.org (this website is not run by a medical facility. It shows what to expect after surgery. Advice on breast forms, or to go breastfree and even what type of clothing to wear.
    I still consult this site. It's very informative and uplifting to me to realize others have decided not to do anything but surgery.

    Still more decisions to be made, though i'm not in a hurry.

    Of course, this is just a small sample of what all is out there. Do some research on your own. What you decide will affect the rest of your life. So take your time, research, talk to others, whatever you need to do to feel confident about your decision BEFORE you act on it.

    Please contact me if I can help you personally at www.poohb3ar@msworld.org and I will answer you as soon as I can.

    Take care and may God bless you!
    "All things are possible for those who believe." Jesus

    #2
    My story: DCIS (left) 12 years ago. I had had silicone breast implants since 1985 and they always felt uncomfortable, and got harder over the years. Then I found the lump (in between yearly mammograms)

    When I had my biopsy done the margins did not come back clear and so I had to go back into surgery. It was decided to do a sentinel node procedure to check my lymph nodes. If they were all negative or if 2 or less were positive, I would need only chemo; if more than 2 were positive I would need radiation and chemo. At that point I was so freaked out that the margins were not clear that I told them I wanted a mastectomy "to get rid of all of it" (and I really did not want radiation). Only one node was positive, so I had 6 months of chemo.

    I then went to the oncology surgeon who put in the temporary spacer for reconstruction; the spacer failed (corner curled up, making a bump under the skin that was annoying). So I went back and told her to take it out and that I would just go without. I have had no regrets about this even 12 years later... it is what it is.

    Comment


      #3
      bless your heart andi!
      sounds like you've really been through it.
      i'm so glad the cancer was caught and removed.

      what you described about the implants is exactly why i was scared to do them. i'm glad they work for some ladies, but i just didn't want to take the chance.

      it's wonderful that you're at peace with the dbl mastectomy.
      did you check out the website www.breastfree.net it is a wonderful source for us ladies who've decided to do just that, go 'go breastfree'. we not only burned our bras, we loped off the boobies!

      radical to many, but being cancer and worry free is worth it to me!
      it has wonderful stories from others, tips on what to wear, other sites to check out, etc. it is NOT A MEDICAL site. just a helpful patient site.

      plus the photos of after surgery really prepared me for when the bandages came off.

      thanks for sharing!
      God bless you!!!
      "All things are possible for those who believe." Jesus

      Comment


        #4
        oops, misunderstanding...

        I did not have a double mastectomy; just a single left radical one. However, at the time I did not have the right implant removed and went for 9 more years with that in, wishing it were out. (didn't think it would be covered by insurance because it had been "cosmetic" in the first place).

        So when I could stand it no longer I went to a surgeon to talk about removing it and it was covered; I had it removed in 2009. I was so happy to not have that foreign object in my breast anymore. But this is not the end of the story...

        In December I had a mammogram and the technician decided she needed to get a "deeper" film of that breast since the implant was now gone.... fast forward to about June. My right breast had gone back UP to the size it was when I had the implant and was very firm and felt uncomfortable.

        A mammogram confirmed that the capsule where the implant had been (which had been left in) had filled up with fluid (probably from the deep mammogram). So my choice was to go back to the surgeon to see if he could drain it, or just leave it alone to reabsorb (takes a long time). A surgeon friend of ours said that I might not want to do anything as draining it could open up a whole new can of worms. So that's where I am now... I think it is slowly reabsorbing, but I know that I don't want to have surgery to remove the whole capsule. I really regret ever getting the implants.

        I'm just DONE with the whole thing... and now I find out my daughter wants to have implants!!! I tried to talk her out of it using my experience but I guess she'll do what she decides to do.

        Comment


          #5
          I am another MSer who was diagnosed with DCIS in Sept of 2010. I decided to have double mastectomies due to my mom having died of ovarian cancer and I while my test came back clear that it was not a hereditary type of cancer I am not convinced that test covers all cancers and since my mom is dead there is no way to test hers vs mine.

          Anyway I had immediate reconstruction and have regretted it ever since.

          I had a bleed and was back in surgery within 8 hours of the first surgery.(I ended up with a Tram flap on the right -cancer side, and DIEP on the left-non cancer side) The good side that I removed "just in case" had the blood supply die and I lost that breast I have since had that breast removed again and later had the muscle from my back transferred around to the front. I look like a bad road map leading to nowhere. I also have had issues with healing from this last surgery where basically if I get bumped and somehow the fat starts to melt, gets infected, and the incision finally opens up and gunk leaks out for a few days and then heals over until the next time (this has gone on for over a year now)

          I know there is a thread on the breast cancer forum in the DCIS sub section that several of us with MS who have also been diagnosed with breast cancer have gathered and chatted.

          If I had a crystal ball back then I would have done complete double mastectomies and been done with it. There is no way it could look worse than I do now and I could have saved myself months and months of recovery from failed surgeries. I admire you for your choice. My fake breasts are not even close to looking "natural" so they were a waste of time, money and pain!!!!!

          Comment


            #6
            After much prayer, research, talking to brave women who've faced breast cancer. Their stories helped me a bunch! Thank you to all who helped me through this time!!!
            You are a brave woman your self!!!!!!!
            hunterd/HuntOP/Dave
            volunteer
            MS World
            hunterd@msworld.org
            PPMS DX 2001

            "ADAPT AND OVERCOME" - MY COUSIN

            Comment


              #7
              my decision

              I was very blessed when I was making my decision for what to do regarding my breast cancer. My surgeon's answer was a "lumpectomy and radiation is the normal coarse of treatment" Well there has been very little "normal" in my life.

              I was blessed with friends with friends in the right places. I was able to consult with two leading oncologists at leading breast institutes. One in Dallas and one in NY. I was able to sign a release with Vanderbuilt and they sent my biopsy results to them. I also have been blessed with my current MS support group co-leader who is a breast cancer survivor. The unfortunate thing of her story is that she is a bone cancer patient now. (but doing wonderful) I call her my 4th angel after the breast cancer conference that I went to this weekend.

              My local oncologist was chosen based on my fourth angel's experience with local oncologists. And she was wonderful enough to go with me. I also used to work at the hospital that I went to see the oncologist. They are revamping their breast cancer clinic and the navigator is a nurse that I used to work with. She asked if she could sit in on my consultation so that she could learn. That poor oncologist had three nurses he had to face.

              He did a wonderful job explaining all of my options. He did not go with, this is the usual treatment. He also did a wonderful job with answering questions regarding how this may respond because of my MS and MS treatments.

              Given my strong family history of cancer I did not want to deal with this ever again. I also did not want to do radiation. I did not want to do chemo. I did not want to do anything at all on top of the MS treatment. I didn't want breast cancer, but I had to deal with it.

              Add to it that I have wanted a breast reduction for years. But, we have to have documentation that there is a medical need for that. I get documentation for it and then I get MS and then they don't want to aggrivate my MS by doing elective surgery. I was putting pain patches on my back every night because of the pain. I did not sleep well at night because of back pain. I spent half of the night in the recliner for over 4 years.

              Oh, and you need to add another pill to your regimine. You will have to take Nolvadex to prevent further breast cancer in the other breast. Really!? How well has this worked for the women that I know?

              So.............., I chose the double mastectomy. Oh, and we need to schedule you with the plastic surgeon for reconstruction. Wait a minute, do I have to do the reconstruction? I am putting pain patches on my neck every night for two many years. I am not sleeping because of the pain in my upper back and neck. They were a constant knott. I could not tolerate muscle relaxers, so no help there. Spent many $$$$$ for massage and accupuncture to help with the pain also.

              So, guess what, no reconstruction for me. I don't want anything foreign in my body. I am just going to get the weight off of my shoulders and neck, why would I put weight back on there. No way no shape or form. What about what your husband wants? Ummmm, he is not the one that is caring this weight around, nor does he have cancer. I will ask him, but sorry, he does not have the final say in this.

              5 months later. I am doing the best I have for years. I am not having pain like I did before. I am sleeping the whole night through that I have not done for over 4 years. I have weaned myself off of most of the narcotic pain medications that I was on for back/joint pain.

              There is no guarentee in life. I am hoping that I will never have to deal with the cancer word again. I never have to deal with the complications of chemo or radiation. Boob and bra free (I no longer have to buy bras at $30 a piece) and loving it.
              God Bless and have a good day, Mary

              Comment


                #8
                all facing breast cancer are courageous!

                it's a battle that can't be ignored. even if you do nothing, you end up battling the pain, health deteriation etc.

                kelm, andi, lifegoeson, thank you so much for sharing!!

                i know it's not easy, but for those who choose not to post are learning from our experiences.
                i don't want anyone feel pressured to 'tell your story', we'd love to encourage you but it is absolutely 'ok' if you don't care to talk. we all understand, this isn't an easy subject.

                i'm so sorry for the pain all have gone through.
                i pray that someday this cancer monster will be conquered!
                until we need to hang on tight and win the fight!!!!

                take care and GOd bless ya'll!!!!
                "All things are possible for those who believe." Jesus

                Comment


                  #9
                  A Different Decision

                  After two mammograms and three ultrasound assisted biopsies, I was diagnosed with invasive lobular carcinoma involving both breasts. The only treatment option to protect my life was double radical mastectomy. I was so terrified and depressed. It was only the confidence the breast surgeon inspired in me - and the promise that reconstruction would create a body that was neither disfigured nor mutilated - that enabled me to decide that I could go though with what would be my first-ever surgery.

                  There were two possibilities, the plastic surgeon explained. Saline implants could be placed at the time of the cancer surgery, and that would be that. No more surgeries needed. I was not enthusiastic about this option because the plastic surgeon felt silicon gel implants enabled him to be more artistic and because I knew the saline implants were hard and unnatural in tactile qualities compared to the gel. The other possibility was a two-part reconstruction - saline expanders put in at the time of cancer surgery and then they would be replaced with gel implants in a separate surgery three or so months later. This is the option I chose. It turned out to be grueling, but worth it to me.

                  Because of the expanders, my cancer surgery was almost four hours long - one hour for the breast cancer surgeon, the rest for the plastic surgeon. I was three days in the hospital and two weeks in nursing home surgical rehab. I had four drains and had to try to sleep barricaded with five pillows. (I'll talk about the MS exacerbation and the physical and occupational therapy in another post.)

                  After I got out of the nursing home, I went to the plastic surgery office to be "expanded" every week to ten days. The expanders were hard as rocks and had rigid, sharp edges which I could feel all the time. The expansion sessions were bizarre. A titanium chip identified were the saline solution should be injected in each one with a needle that looked like the kind cooks use for turkey basting or gardeners use to spray the roses.

                  I could have chosen any size, but I wanted just the same, as closely as possible. Every expansion was more painful than the last, but ice packs and pain killers kept me going. About midway through the expansion process, I had had a real breakdown - I looked into the mirror and saw a freak.

                  Nevertheless, visits to the plastic surgeon's office turned out to have an unexpected benefit. Logically enough, plastic surgeons have their offices in very, very nice neighborhoods. There was a fine-dining restaurant nearby - so we scheduled our visits for the day there was the grass-fed beef special served only "at the bar" for a great price between lunch and dinner. Just parked the Jeep among the Porsches and Jaguars and were treated like regulars in no time. LOL

                  Almost three months after the cancer surgery, the saline implants were changed out for the gel permanent implants. It was a much easier surgery, and I was glad to see them go. I've had my new, silicon "bionic bosoms" for eight months now, and most of the time they feel like part of me. A clot of scar tissue that had developed at the edge of the left expander is just about dissolved. The skin scarring is already almost invisible. I still haven't decided whether I want to continue with a nipple reconstruction - a surgical fold of my own skin and a tattoo. Before the surgery, I saw pictures of reconstructions, but I think mine look better by far than any of the photos I saw.

                  I know my water workouts have helped. The plastic surgeon told me at my last check-in that he wished all his patients did the movement work I do.

                  Stay lifted,
                  Susan
                  "Life is short, and we have but little time to gladden the hearts of those who travel with us; so let us be swift to love, and make haste to be kind."
                  
-Henri Amiel

                  Comment


                    #10
                    Survivor (in many ways)

                    I just discovered this thread and boy, is it relevant.

                    In Dec., 2010, i was taking a shower (why do these things always seem to happen in the shower?), when i noticed that my right breast felt hard as a rock and looked distorted, unlike my left breast. I had never noticed this before; it was as if it appeared overnight from nowhere.

                    I got out of the shower as quickly as possible, and called my husband into the bathroom and asked him what he saw. He said my breasts didn't look the same and when he touched them, he said my right breast felt hard. Saw my PCP first thing the next morning and and he immediately sent me for a mammogram. Result was not good and i was immediately sent to a breast surgeon. (Amazing how fast they can rush u through and "squeeze" an appointment in.)

                    Surgeon sent me for an MRI of my breasts and did a needle biopsy. Results was a 6cm. mass in my right breast putting me at Stage III Lobular Invasive Carcinoma. Off i was sent to an oncologist who specialized in breast cancer and my "treatment team" (including my neurologist...i have had RRMS for years) made recommendation for a mastectomy.

                    Issue was, since the mass was so big to begin with, i had to have chemotherapy BEFORE surgery in order to hopefully shrink the mass enough to allow surgeon enough room to remove mass and get ''clear margins". Also, i had to be taken off all my MS meds (Gylenia) because could not take them as well as have chemo at same time. Neurologist told me that cancer treatment would take approximately 1.5 years and i could expect an exascerbation somewhere in that time frame but was necessary since first priority now was the cancer.

                    Immediately started 6 months of chemo followed by double mastectomy (opted for that since my mother and maternal grandmother both has breast cancer which made this even weirder since i was a "good girl" given my family history and had mammograms as well as physical checkups every years and all was always negative) and 30 radiation treatments (took out 9 lymph nodes during surgery and found 3 that were positive). My head was in a fog for the year and a half of treatments. Also wanted reconstruction and so had expanders inserted at time of mastectomies and then after approximately 5 or 6 months (who remembers?), had permanent implants inserted.

                    Approximately one year to the day of dx, i was declared a SURVIVOR. I think that's when i really cried.

                    Of course, neurologist has been correct, shortly after being declared a breast cancer survivor, i had one of the worst relapses of my MS ever. Was hospitalized twice (first time 6 days, second time 8 days) and had plasma exchange the second time because we were running out of options. That was approximately 2 - 3 months ago. Today, i am doing well and waiting for BG-12 to be approved so i can start it the day it is released.

                    Again, i survived and will continue to do so by fighting as hard as i can and counting on the lucky little angel that sits on my shoulder.

                    Comment


                      #11
                      Dear Docsal80,
                      Thank you for sharing your story. Truly you are a star among us survivors. My thoughts and prayers are with you.

                      Stay lifted,
                      Susan
                      "Life is short, and we have but little time to gladden the hearts of those who travel with us; so let us be swift to love, and make haste to be kind."
                      
-Henri Amiel

                      Comment


                        #12
                        Thank you all for telling your stories. I am just about speechless here, not knowing what to say. Virtual ((hugs))) to all of you, I wish continued healing for you

                        Comment


                          #13
                          Just adding my part in this series... No decisions for me to make but things have changed. The surgeon cut out the lump. All the edges were clear. Nothing in the lymph nodes. I thought I was home free with just radiation.

                          No such luck. My cancer is triple negative. Only 10 - 20% of the cancers are (and I'm always the winner). It means the cancer won't react to hormonal drugs and it also means that if one tiny cell got away somehow it would be very aggressive. So I'm having chemo before the radiation.

                          A few years ago there was a woman in my neighborhood who had a type of BC that was very aggressive and wouldn't react to treatment. We prayed for her (didn't help). I feel like it describes my cancer.

                          Tomorrow I'm doing a PET scan to check there's nothing hidden anywhere. Next Monday I'll see the oncologist again. My neuro's disappeared which is a problem since I couldn't get tysabri this week cause of the upcoming chemo.

                          I feel like my life is Dr appointments
                          Dx 1/86 at age 23
                          Copaxone 1993 - 2011 (except when I was pregnant or nursing)
                          Tysabri - 2011 - present

                          Comment


                            #14
                            oh donna, bless your heart!

                            i just felt sick when i read your entry and noticed it was today.
                            so hard to believe that you got such bad news when it looked like you were in the clear.
                            will continue to pray for you. i can't even begin to imagine how hard this news was for you.
                            hang in there! know that we all care & want to know how you are.

                            take care & God bless & heal you!
                            "All things are possible for those who believe." Jesus

                            Comment


                              #15
                              Sorry to hear of the triple negative result, glad to hear your margins are clean. So many seem to have to go back for surgery when margins are not.

                              You have already proven yourself to be strong, and I believe you wil get through this. Try not to compare yourself to others, you will be unique and sounds like you are under the care of the best. They are taken all steps to insure your best care.

                              I was very scared of radiation, but I am also lucky. No fatigue. No change in he texture of size of my breast. No adverse side effects after 2 1/2 years. Knock on wood! My point is only to stay positive and take it one step and day at a time. I will be praying and thinking of you.

                              My niece has aggressive stage 4 cancer, has been treated for over ten years. Don't ever think that there is no hope until there isn't. We are going to be OK.

                              Comment

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