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  • Stix
    Stix Member Posts: 610
    edited February 2015

    How many lymph nodes with the dissection? I think that 1 sounds better 2 me. I would get stoliers opinion.... yet stay local. If something happens to the cosmetic s then go to NOLA.

  • allydp
    allydp Member Posts: 361
    edited February 2015

    Stevens - I also saw Dr. Lori Pierce for a 2nd opinion on rads and cannot say enough great things about her. She knows her stuff and has a great bedside manner. I had two pages of questions for her and numerous studies for her to review, as I was in a grey area with rads. She read all of them and spent well over an hour with me. She then offered to coordinate UofM giving me a 2nd opinion on all my pathology from St. Joe's. It was a pain to get the slides sent over, but she followed up numerous times.

    Stix - how are things going? Have you decided on next steps moving forward? Even though I'm not happy with my results, I'm going to give my body some time to heal. I had 4 surgeries last year, 3 of which were in the last 4 months. My body needs a break. This will give me lots of time to meet with PS's and make an informed choice, as well.

  • Stix
    Stix Member Posts: 610
    edited February 2015

    ugh ally. that is too many surgeries in a short period. not sure what i am going to do. I think my implant is falling again despite the strattice.

  • klanders
    klanders Member Posts: 152
    edited February 2015

    I had two surgeries with two different doctors scheduled this week for the same lump - and I canceled them both. I just didn't have a peace about going with either surgeon even though I liked them both a lot. So on to Plan C. I had consulted with MD Anderson when I first got cancer two years ago. I sent an email to my doc there and she called me yesterday to chat. She has experience doing lumpectomies on mastectomies so I feel good about having her do my surgery, even though it's going to mean waiting a few weeks for surgery. She will do a sentinel node biopsy and will try to avoid taking too many lymph nodes. Now I just have to figure out the logistics of it all. I will definitely try to go back to NOLA after my radiation. Bummer - my breasts are beautiful right now and it will cost me a lot to have more work done. Maybe I'm just being vain!

  • Stix
    Stix Member Posts: 610
    edited March 2015

    Hope you are doing well klanders. To all that saw my other posts. My reconst. revision is looking better. But, i still think it will need another revision. At least it hasn't dropped to the ground yet. Just too wide on the lower half of the breast in which has caused an overfilled lower pole look when compared to the other breast. Also a bit too lateral I am almost two months out. I am hopeful it won't last too much longer- hopefully only one more revision. Things can still change though.

    I reached my 5 year mark on Feb. 26th of being cancer free. I had a private mini-breakdown that day. But, it didn't last long...:).

    Life is getting better....at least i hope.

  • jlstacey
    jlstacey Member Posts: 117
    edited March 2015

    Allydp- did you see another PS? Do you think your breasts look better now

  • klanders
    klanders Member Posts: 152
    edited March 2015

    I had a bombshell dropped by MD Anderson. I was scheduled for a lumpectomy (I've already had a BMX with DIEP recon) next Thursday. My doc called and canceled. We are still flying to Houston this week but they want me to do 5-6 months of chemo before surgery. We were/are in total shock. My Kalamazoo doc was happy to do just a small incision to take out my two small tumors and she wasn't going to check my lymph nodes and absolutely no chemo she said! MD Anderson says I'm stage 3, high risk (3rd cancer in 2 years) and fortunate that it hasn't metastasized. I don't want chemo but I also don't want to do this again two years from now.

    The stinky part... when I had my BMX the doctor in New Orleans didn't get clean margins so he had to go back in. Everything I've now read says that my oncologist should have recommended that I do radiation at that point. But no one every said anything about that to me. Just another reminder that we need to do our research and be our best advocates.

  • Stix
    Stix Member Posts: 610
    edited March 2015

    klanders.. everyone has different opinions re radiation etc. I had several grade 3 cells that they say we're all in the ducts. Personally I think i would do what md Anderson says.c ant you do the chemo after sx. ? U think they would want that out of u.....

  • Jean54
    Jean54 Member Posts: 1
    edited March 2015

    IrishDancingMom I just had surgery in January and I live in Michigan. Had a lumpectomy and genetic testing and now deciding whether to go ahead with radiation therapy or not. Hard to know what to do

  • Stix
    Stix Member Posts: 610
    edited March 2015

    KLanders...where was your oncologist out of?

  • Momine
    Momine Member Posts: 2,845
    edited March 2015

    Klanders, why are you considered stage 3?

  • klanders
    klanders Member Posts: 152
    edited March 2015

    I won't know a whole lot until I actually meet with the docs in Houston this week.The nurse said I'm stage 3 - maybe because this is my 3rd cancer in two years - I know I'm considered high risk. The first time it was in each breast but they were counted as two different cancers. I'll ask them to clarify.

  • Momine
    Momine Member Posts: 2,845
    edited March 2015

    Klanders, yes, please let us know what they say. I will be thinking of you.

  • Stix
    Stix Member Posts: 610
    edited March 2015


    Klanders, Where was your oncologist that said you didn't need radiation from?  Please let everyone know from MI or New Orleans.

    I thought you meant your cancer was grade 3.... not stage. I am thinking that is what they meant- but IDK for sure

  • formydaughter
    formydaughter Member Posts: 121
    edited March 2015

    klanders. Sending you support!

  • allydp
    allydp Member Posts: 361
    edited March 2015

    Klanders - I am thinking they meant grade 3 and not stage 3 as well, but keep us posted. You'll be in my thoughts.

    Stix - huge congrats on reaching the 5 year mark!!

    jlstacey - no I haven't scheduled anything yet. I found 2 new masses in my breast near my original tumor. I had biopsies last week. One came back benign and the other was too close to my implant to get good pathology. I go in for surgery tomorrow to remove it to find out exactly what it is. After dealing with all this, I'm tired and decided my breasts are fine for now. I can't wear a bathing suit, but I look fine in clothes. I'll revisit in a year or so.

  • Stix
    Stix Member Posts: 610
    edited March 2015


    Good idea ally to wait for the breast surgery. If I need another revision (which is likely)- I decided to wait a good 9 to 10  months from this January. I am just so tired of having surgeries- I want to change jobs- get back to my normal life and work on my career a bit. 

    Its funny- some people think "wow" you get 4 weeks off in the summer when your on a leave. It sucks. They have no perspective whatsoever.

    stix

  • klanders
    klanders Member Posts: 152
    edited March 2015

    Update from cold and gray Houston. What's up with that? I leave Michigan and the weather is better at home than here! We are heading home tomorrow after two days of tests and doctors. They are very thorough at MD Anderson and did fine needle biopsies on two lymph nodes (initial results benign) and what turned out to be a cyst. I asked the doc this morning about my stage and she said usually I would be considered stage 4, but she was putting me at a stage 3. I can't remember all the reasoning but it has to do with the aggressiveness and how I had cancer in both breasts the first time and now a recurrence in under two years. They want to hit this with everything they've got. I'll have 12 weeks of Taxol. Then 8-12 weeks of A/C. Then surgery and 6 1/2 weeks of radiation to the whole breast and lymph nodes.

    When I had my BMX/DIEP two years ago NOLA didn't get clean margins (Dr. Gray was the surgeon). NOLA is primarily just plastics surgeons. I had never seen a radiation oncologist since it wasn't supposed to be needed. If I had a radiation oncologist in Kalamazoo maybe he/she would have suggested that I do radiation - my medical oncologist in Kalamazoo never suggested it. That is the really tough part - because my journey has taken me to so many places (Kalamazoo, Grand Rapids, University of Michigan, MD Anderson and NOLA) it's tough to figure out who's leading the charge and to coordinate all the records and care. I have to decide now who is going to do each part this time around. I can't stay in Houston until December.

  • Momine
    Momine Member Posts: 2,845
    edited March 2015

    Klanders, thanks for the update. I assume there is no distant recurrence, and that is why she is keeping you at stage 3. You can have Houston coordinating, but get the actual chemo infusions at your local hospital. One good thing with chemo is that it is completely standardized at this point.

    Considering that you had a small tumor and did BMX, how did they fail to get clear margins? Was the tumor close to the chest wall? I am guessing they did the BMX and DIEP recon in the same surgery?

  • Stix
    Stix Member Posts: 610
    edited March 2015

    you must be a stage 3 A klanders.... right?

  • Stix
    Stix Member Posts: 610
    edited March 2015

    I went to my PS yesterday. He confirmed the implant has dropped. The skin is not holding the implant. He wants to see me at 3 months. I am only two months. I could tell by the look on his face- it was a sadness look- that he probably won't be able to do too much more. I hope I am wrong.  Anyway, I think I am headed for a diep. If so I will go to U of M or NOLA.

  • enjoyevrymoment
    enjoyevrymoment Member Posts: 239
    edited March 2015

    Klanders

    Thinking of you and hoping you are doing well.


  • klanders
    klanders Member Posts: 152
    edited March 2015

    No distant metastasis that they can see. I did BMX and DIEP reconstruction all at once. I have no idea why they didn't get clean margins - maybe because NOLA's normal breast surgeon wasn't there that week and they had a general surgeon, Dr. Gray, perform the surgery. They were comfortable with his experience and I just wanted the cancer OUT so I never questioned the fact that he wasn't strictly a breast surgeon. That was a mistake, I think. Also, I was told yesterday by a U of M breast surgeon that they would never go back in to try to get clean margins on a mastectomy because it's impossible to determine where to start looking since the flesh has all been removed. They would have had me do radiation instead.

    I can't go back - only forward. My other mistake was discontinuing tamoxifen.

    So, now I need to make better decisions on chemo. I have two choices: University of Michigan - do surgery first then after they look at the tumors if they aren't aggressive then they'll do 4 cycles, every three weeks of Taxotere and cytoxen. If it's aggressive they will do what MD Anderson is recommending - taxol 12 weeks and AC for 4 cycles/every 2 weeks. MD Anderson would do the chemo first and then surgery.

    I need to decide soon.

  • Momine
    Momine Member Posts: 2,845
    edited March 2015

    Klanders, they have done a biopsy, so surely they must know what grade the cancer is and they must already have a Ki-67 score. In other words, they shouldn't have to do surgery to determine aggressiveness. I would really ask the Michigan team exactly what the determining info is that they hope to learn from surgery.

    The advantage with doing chemo first is that you can very easily determine if it is doing what it is supposed to be doing.

  • Stix
    Stix Member Posts: 610
    edited March 2015


    I had second opinions at u of m.  They told me.... "we Are here to save your life" - when asking about reconstruction b4 hand. If they are going to do the same treatment... I would go closer to home.

  • Stix
    Stix Member Posts: 610
    edited March 2015


    i changed my mind on that. If MD anderson has different suggestiions and their tx is more aggresive then I would ask U of M to follow their (MD andersons)  recommendations - tell them you would feel more comfortable with their aggressive treatment... yet you want to be treated at U of M ... because you like the hosptial....

  • klanders
    klanders Member Posts: 152
    edited March 2015

    MD Anderson told me "chemo is chemo is chemo." They were comfortable with me getting it anywhere because it is all pretty standard. (Of course, they would ask the local oncologist to follow their recommendations.) They DID say that radiation should not be done just anywhere. There is a new type of radiation protocol with a special breathing technique to help protect the heart when you are radiating the left breast.

  • Momine
    Momine Member Posts: 2,845
    edited March 2015

    Klanders, that sounds exactly right, on the condition that UM follows the chemo protocol suggested by MDA. When I was DXed, loads of Greek friends thought it was nuts that I was treated here and not in the US. But I had gotten exactly the same info you just got.

  • Stix
    Stix Member Posts: 610
    edited March 2015

    Klanders, If you are having chemo followed with radiation. I would have it at u of m and have them follow MD andersons protocol.

    does U of M have that special radaition that MDA is speaking about - re: protecting the heart? Or do you need to travel for that?

  • mmtagirl
    mmtagirl Member Posts: 325
    edited March 2015

    UM does have the special breathing protocol for rads on the left. The doctor I consulted with was awesome. I ended up doing rads closer to home and my localness it's followed the same protocol. My put on a pair of goggles and saw a computer screen image that tracked my breathing. I held my breath during the treatment. It was not too difficul

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