TRIPLE POSITIVE GROUP

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Comments

  • willa216
    willa216 Member Posts: 165
    edited November 2016

    Kattis:   I second what Tunegrrl and Mommato have said. I had a unilateral mastectomy with immediate reconstruction.  My PS said she wants to  wait until  everything settles before she does  anything on the opposite side, if need be.   It takes some time to see where your breast will "sit" , what the final shape will be and how it will heal (especially if radiation is needed).  I wish somebody would have made it really clear to me upfront that immediate reconstruction is a multi-step process that can take some time even when everything goes well.  It's wonderful to have reconstruction as an option but it does requires patience.    Please be sure you speak to your surgeon, though, about your expectations. If you feel confident you will be more relaxed in recovery and that will help you heal.    Take good care. 

  • Kattis894
    Kattis894 Member Posts: 218
    edited November 2016

    I understand the concerns with reconstruction. My biggest concern is the cancer in all of this of course. Just heard that with immediate reconstruction there can be problems during the radiation that might harden the silicon pouch so not sure I like to risk that at all. I feel I do not really need any breasts moving forward in my life, that being said, yes it could be nice to have my nipple to remain on the healthy breast and remain pretty much flat chested for the remainder of my life.

    I always had big boobs, size D and if anything good would come out of this nightmare, basically it is to experience having pretty much a flat chest for once. I think I would enjoy that very much. Also considering the cancer might come back in at least half the patients I am more concerned about that fact than the size of my boobs. To have one enormous one and one that is completely flat just seems to be a problem that I am not sure I can handle as well.

    I have worked in fashion my hole life where small boobs pretty much are a norm amongst models (I am not a model) so why not have a flat chest for a change and see it as something positive. I am going to ask to meet the surgent that will operate on me earlier than planned just to be able to take everything into consideration instead of just going what they tell me would be the "normal" norm for what they usually do.


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited November 2016

    Hi Kattis!

    A lot of women choose to go flat after surgery, and many choose a bilateral mastectomy to achieve symmetry. There's a forum here entitled "Living Without Reconstruction after a Mastectomy." There's also a BCO Page: "Going Flat: Choosing No Reconstruction." If you do choose to go flat, you may face some resistance from the surgeons, many of whom assume that women will choose reconstruction eventually. So, they leave extra skin "just in case" they change their minds. Of course, if you're serious about no reconstruction, you will then have to get another surgical procedure to get rid of the extra skin to achieve a suitable flat look.

    Good luck, and I hope that your surgeons are responsive to what you want, not what they want.

  • Kattis894
    Kattis894 Member Posts: 218
    edited November 2016

    I think I would like some shape in my chest area so going flat might not be for me,however thought to make it more even at once would be preferable if the cancer allows it of course...

  • Silvertop
    Silvertop Member Posts: 2
    edited November 2016

    Kattis, I had the same diagnosis, the same treatment (I live in Europe too) and the same concern: after all the treatment the lump felt the same. But when I had the operation they found the tumor had gone from 4.5 cm to 3 mm, the lump was mostly scar tissue from the biopsies. So they went for a lumpectomy, node removal and radiation. Now on Tamox, it has been 4.5 years and I am doing fine!

  • Hazel15
    Hazel15 Member Posts: 15
    edited November 2016

    Hi everyone...I am new to the site. I was just diagnosed last week with triple positive breast cancer after lumpectomy. The surgeon says that they did not get clear margins which means I have to go for another operation. Can anyone give me their experience with this? Im going for a 2nd opinion at Sloan in nyc on monday

  • Tunegrrl
    Tunegrrl Member Posts: 196
    edited November 2016

    Hazel, i haven't had my surgery yet but from what i've read in the discussion forums, it seems that for almost everyone, re-excision is a breeze. Best of luck.

  • wabals
    wabals Member Posts: 242
    edited November 2016

    I had a reexcision of 1 margin at Johns Hopkins. Really just like the 1st surgery there which was a piece of cake

  • amylsp
    amylsp Member Posts: 188
    edited November 2016

    I had two reexisions, so three procedures total. The anxiety was the worst thing to deal with (worrying about what they would find/ whether they would get clear margins, etc.). The reexisions themselves were fairly easy to deal with. I'm a Massage Therapist and was back to work in a few days. :)

  • Hazel15
    Hazel15 Member Posts: 15
    edited November 2016

    thanks all....I am extremely stressed out with this whole thing....its been bad news after bad news....I had no idea there was even a chance of a 2nd operation. My friends told me not to search the Internet. So when I got the news I was like "what?, really?" Have any of you heard of just doing the chemo, herceprin, radiation, and NOT going back in for a second operation

  • Leslie2016
    Leslie2016 Member Posts: 316
    edited November 2016

    Hazel when a doctor removes the lump, it isn't visually defined when they go in. There is nothing to tell them this is the good tissue, this is the bad tissue so they take what they believe they need to for the lump to come out. When they do the pathology they can check if there were any cells against the wall of where they cut. If there is, they need to go back in and take more because leaving the cells will cause it to just come back. I didn't need to go back in, but many, many women do. It's not uncommon and doesn't mean that the doctor made a mistake. It just is what it is. Even though I didn't have to go back in as the margin was large enough, they did find that I have an area of DCIS that we didn't know about. I'm doing my chemo now for the IDC and I'll figure out the DCIS at some point.

  • Hazel15
    Hazel15 Member Posts: 15
    edited November 2016

    Leslie, thanks so much for your reply...and happy thanksgiving

  • Tunegrrl
    Tunegrrl Member Posts: 196
    edited November 2016

    minneswede, thanks for the good chuckle!! I can totally imagine that elongated swear

  • Kattis894
    Kattis894 Member Posts: 218
    edited November 2016

    minneswede,

    Nice to meet another Swede here...:) Yes I have noticed you need to push a bit. I am so glad I joined this site because it gives me some insight on my other home country, United States and what woman are going threw there and also in Canada.

    I have pushed to meet the surgeon earlier than planned in order to have some time to think about the surgery that was proposed to me with immediate reconstruction. I am certainly not sure I want to go threw the silicon pouch process at this point at all. The more I think about it I rather remove my other healthy breast keeping the nipple etc just to make my chest be more even for the next few years as well as using a prosthetic ( a small one) until reconstruction seems safer and perhaps they can do it without the use of silicon at that point. I am not an expert in plastic surgery or reconstruction so feel I should be able to also meet the plastic surgeon not only the "cancer removal" surgeon but seems the hospital only booked me with the surgeon removing the cancer even if two of them are booked for my surgery on the 21 dec.

    I have been so busy with other things that I have had no time concentrating on this and should of course take the time now to inform myself as much as possible in order not to just "do what they tell me" without considering options and reading more on this site what if available.

    Radiation therapy is planned after surgery, every day for 2 months, it seems with a silicon pouch there can be issues that I like to avoid. Also I like to not stress this hole thing in case of mets etc. They still have not scanned my body for that since my nodes were clear, but who knows, I still want to check once the operation in done.

    I am going for another mammogram on Dec 1st, since my large tumor 6,5 x 4 cm has not changed in size after all this treatment, but yet not grown, I am a bit discourage and worried that if I do have mets they will have a better chance to survive and grow due to the medication not totally working on me. Well, I am getting some different opinions from the onc and the surgeons so feeling confused about the hole thing. It seems I am just a number in statistics at this point and not sure what they are anyway. The onc keeps telling me I will know more after surgery, the surgeon told me they already know lots (see my signature)...so which is it? They do not seem overly concerned about it but I am.

    Anyway, I am ranting, I have not been thinking about my decisions for a few days and need more information from different sources. Any advice given here is gold to me.

    I just finished my last chemo with taxol before surgery and now I am only on herceptin every 3 weeks. My body feels beat up and my brain seems to function with lots of emotions ups and downs. I need to calm down and take some time to really think this over. I printed out the questions to ask the surgeon on this site and they were chocked I had so many questions...now I am printing out the section of questions to ask about reconstruction so I am sure they will be as surprised again...I am calling the hospital tomorrow to prepare them about the fact that I do have a lot of questions and require more time than usual to talk them threw.

    Silvertopp thanks for your words..I hope the pathology report will be positive for me as well. I am also thinking a lot about nutrition, raw food, juicing and such. Nobody tells me it is important at the hospital, outside they do. I also asked I need to help to get in some kind of shape. I can´t even walk up some stairs without feeling exhausted at this point.

    They do have a program for that but as Minneswede mention you have to push and ask for everything, thing is you got to know what to ask for, that is my problem, I don´t without taking time reading and finding out on my own first.

  • Blownaway
    Blownaway Member Posts: 760
    edited November 2016

    Hazel - I had to have a re-excision also due to close margins. The second one also had close margins. I was supposed to have 6 rounds of TCH, of which I could only finish 4 (per labs, s/e's). This was supposed to be followed by 36 external rads and a full year of herceptin alone. I did the rads but herceptin had to be stopped after an additional 3 infusions due to heart failure (total of 7). My worry is that some cancer cells may have gotten into the blood stream and migrated but the only thing to do is wait for symptoms.

  • Eileenohio
    Eileenohio Member Posts: 460
    edited December 2016

    Good Afternoon Ladies. Just wanted to share my good news and give hope to those just beginning this journey.

    Just had my annual mammogram I am now officially 5 years CANCER FREE.. Hooray..

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2016

    Awesome news, Eileen! Always glad to hear good news on the board.

  • Keiki
    Keiki Member Posts: 51
    edited December 2016

    Kattis, to me, a double mastectomy makes sense. I had DCIS and made that decision, I am not sorry. For peace of mind, especially with an aggressive cancer like yours.

    I had NSM , very tricky as the breast tissue must ne removed leaving a very thin, fragile flap. I had an excellent team, still had some scarring. No infection or necrosis. Skin health is very important. I don't know if the nipples were worth it.

    Regarding reconstruction, expanders, implants are their own little hell. I have had no problems, just the process.

    Learn about DIEP. More involved but less time in the overall process. You could go flat now and opt for this later.

    We are very lucky to have many options, just hard to decide. You are on the right track. Nutrition, overall health, emotional support. Stay strong. Let us know results of 12/1 mammo.
  • PatriciaU
    PatriciaU Member Posts: 4
    edited December 2016

    Hi,

    I found a lump on October 30th, in for appts and biopsy on the 2nd and was told it was indeed cancer on the 4th.

    I went back on the 10th for an appt with the surgeon and found out I was ER/PR positive. HER2 went back for more testing. I had a lumpectomy on November 15th with my follow-up on the 29th. That is when I was smacked in the face with the HER2+ news.

    My tumor was 3.1cm and 1 lymph node was taken. it did test positive but was microscopic at .8mm.

    I did have to go in for a re-excision on Friday (Dec 2nd). I have my first appointment with Oncology Tuesday. I was told that Chemo would most likely be recommended. I was really hoping to avoid chemo. I don't want to do that to my body but I also want to minimize the risk of my cancer coming back so I will have A LOT to think about.

    I'd like to hear from/chat with others that have had the same diagnosis.

    What was recommended?
    What did you decide to do?
    What do you wish you had done differently?

    Thanks so much for any input you can offer.
    Patricia

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2016

    Hi!

    I found out that I was HER2+ before surgery and I had a large lump (5 cm+) that was Grade 3 (growing like kudzu in the lab, my MO gushed), plus one compromised lymph node (fine needle biopsy).

    My medical oncologist (MO) recommended chemo before surgery. This had two advantages: 1) chemo could shrink the tumor so I might be able to have more surgical options (a lumpectomy opposed to mastectomy); and 2) we could see whether or not chemo was doing the job. I had an MRI and PET scan before chemo; they would be compared to the MRI and PET scan after chemo.

    My MO recommended Adriamycin/Cytoxin (four infusions every two weeks) + Taxol/Herceptin (12 weeks)/Perjeta (4 weeks). She likes that regimen because more of her patients finish it than Taxotere/Carboplatin/Herceptin/Perjeta. I agreed to chemo because 1) HER2+ cancer is very aggressive and mine was Grade 3 and on the move (in one node); and 2) chemo came with targeted therapies like Herceptin and Perjeta that have proven to be life-savers for HER2+ women. I also completed a year of Herceptin alone.

    Chemo was very successful as it wiped out the active cancer in my breast and node. I was able to get a lumpectomy, and to avoid reconstruction, which can be time-consuming.

    Because of my tumor's size and nodal involvement, I also did six weeks of radiation. I am currently on Aromasin and Zoladex for hormonal therapy.

    I wouldn't have done anything differently. I was 46 at diagnosis, and have a lot of life ahead of me. I was able to work through chemo and rads, and I haven't sacrificed much at all in terms of quality of life.

    Best wishes to you! No one really wants to do chemo; I hope you have a productive discussion with your MO.


  • Leslie2016
    Leslie2016 Member Posts: 316
    edited December 2016

    I had a lumpectomy for my 1.8cm IDC with sentinel node biopsy. No spread to the nodes. MO then recommended chemo since I'm TP, which I'm doing now. The plan is for radiation afterwards, with Herceptin for a year. My chemo is FEC-D, which is the standard here in Canada. I am very happy with my care so far; my cancer centre is awesome.

    What would I change? Well, for some reason my hormone receptor results from the biopsy went the way of the dodo bird, so we didn't have the results before the surgery. (It's complicated...I had biopsy at one hospital which used Lab A for testing...preliminary results got to my GP, but not the final...after the preliminary results I had my GP send me to the hospital closer to home, and they use Lab B for results...so they were looking in the wrong place). Also after my lumpectomy which had clear margins they did find that there is still an area of DCIS that we haven't dealt with yet. Of course being new at all this, I didn't realize a report was missing/incomplete. If I could change things, I would have known I was TP before the surgery...of course I still would have had surgery first, but I *might* have chosen to have a mastectomy instead of a lumpectomy as the surgeon convinced me the lumpectomy plus radiation would take care of it with less recovery time. Chemo was never on the table since we didn't realize I was TP. I have full confidence everything will still work out properly, but I feel like if I had known and made my choice of surgery with all the info, I may not still be wondering about this stupid DCIS while doing my chemo.

  • Blownaway
    Blownaway Member Posts: 760
    edited December 2016

    If I could go back and do it over again, I would request lower dosages of TCH over a longer period of time rather the standard of care. If you read my previous post, you will see how the drugs have adversely affected my quality of life going forward (ie nerve damage).

  • ashla
    ashla Member Posts: 1,581
    edited December 2016

    Hello and best wishes to all..

    A very informative read about estrogens!



    https://theconversation.com/what-women-with-breast...

  • Zoziana
    Zoziana Member Posts: 114
    edited December 2016

    Ashla-Thanks; helpful and easy to understand.

  • Hazel15
    Hazel15 Member Posts: 15
    edited December 2016

    for those that found cancer in one node did you opt to have an axillary biopsy? I cannot have radiation to armpit (my lungs are damaged). I have to have a 2nd surgery to clean the margins. One hospital is saying do remove more lymph nodes the other is saying you don't have to. What are your experiences?

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2016

    Hi Hazel!

    My radiation oncologist and surgeon removed all my Levels 1 and 2 lymph nodes (long story), but I wouldn't necessarily advise you to get that done (increases the risk of lymphedema). Can your surgeon just remove a few "neighboring" lymph nodes, close to your compromised node? That's what my medical oncologist advised.

  • momwriter
    momwriter Member Posts: 310
    edited December 2016

    Hi Hazel,

    I had micromets in 3 (biggest was 1 mm, rest smaller), I did have the AND. I was in a gray area- as 2 would not indicate removal and 4 would (if I did radiation). . In the end, It was a painful surgery for me, and it turns out there was no more cancer in the rest that they removed, so in effect, it was unnecessary. To lower my chances of lymphedema, and because I had the ALND, I opted out of doing direct radiation though the area did get some.

    I'd go with whichever hospital/specialist sees the most patients of your type and is up on the most current trends. They could also show you studies that justify their decision making.




  • BCS2016
    BCS2016 Member Posts: 9
    edited December 2016

    I have been reading this list for three weeks and still am not through it all! Wanted to say thank you to everyone who posts such valuable information. I start my first chemo (TCH) tomorrow. Very nervous.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited December 2016

    Good luck, BCS2016!

    Hope you have an easy go of it. I remember thinking that I should take my prescription anti-nausea meds before my first infusion. I had no idea that I'd be pumped full of anti-nausea meds during my first infusion. Sometimes, the first infusion goes slowly because the oncology staff is making sure that you're not having an allergic reaction to it. Bring something to do -- knitting, laptops, book, etc.. You could be there for awhile.

  • Kattis894
    Kattis894 Member Posts: 218
    edited December 2016

    Hallo all,

    So today I met with the surgeon and all is decided. Surgery date moved forward 2 days to the 19th of Dec. I am greatful, really want this lump gone.

    I will remove the entire breast and not do any reconstruction at this point nor breastreduction on my healthy breast. My cancer is aggressive and has not changed in size during the entire treatment before surgery so they are not sure if I would need more chemo or can do radiation directly before the pathology report. I find the risk too high to go ahead with a breast reduction at this point since it takes longer to heal, even if it would feel better. They would then have to wait with treatment in case I need it. My decision felt pretty easy. I want to deal with the cancer before dealing with reconstruction or the "look" of my breasts. I would never forgive myself if waiting a few months would "kill" me in the end.

    Of course I am scared and hoping the pathology report will show that my lump is almost dead or completely dead at this point...if not, well the saga continues with more chemo. I am planned to start radiation and hormon treatment in January as of now, but of course this might then change. They can do the reduction on the healthy side after radiation (so in about 3 months) if things go ok. For the reconstruction on the other breast I have to wait almost 2 years.

    This certainly is not a sprint but a marathon.

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