Recurrence after bilat mastectomy?

Options
1568101138

Comments

  • tobyj
    tobyj Member Posts: 19
    edited November 2010

    Congratulations beckward!  Thank you Julie!  I cannot wait to get pathology results.  Then, clean house.  Thank God for my good family support.  God bless you all.

  • D4Hope
    D4Hope Member Posts: 352
    edited November 2010

    I hope everything turns out okay tobyj

  • nervousdaughter
    nervousdaughter Member Posts: 1
    edited February 2011

    I just joined this forum as my mom was diagnosed with breast cancer and is scheduled for either a single or double mastectomy next week.  There is atypical lobular hyperplasia in the second breast and there is no medical reason to remove.  She may opt to remove anyway to avoid the anxiety of follow-ups on that one.  Is there any research that shows if you remove both that cancer finds its way to a different part of the body instead of the other breast?  This is not worded very well, but my concern is that if she were to get more cancer down the road, it might be good to have that breast there for it to go to versus another part of the body that is tougher to treat?  Has anybody heard anything about this????

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited February 2011

    Nervous, I know what you're trying to say, and NO it won't go somewhere else just because there is no breast. Having said that, the recurrence rate is the same whether she gets the 2nd breast off or not. I did both because I didn't get reconstruction. I stay flat. I didn't want more surgeries. I also didn't want to hear those words again. I won't hear "breast cancer' if it comes back, but "mets". That I will deal with if it happens.

  • DMD
    DMD Member Posts: 61
    edited February 2011

    Dear Nervous, I agree with barbe1958....based on all of my research and discussions with my doctors...there is no reason to believe that if you remove the other breast the cancer will then just find another spot to go to. Unfortunately, there are no guarantees when dealing with cancer and everyone is different, but your mom needs to work closely with her doctors, research all her options and figure out which treatment plan is best for her. You are obviously a very caring daughter to have come to this site to look for some answers so you are helping her by trying to stay informed.  Your support will mean a lot to her...your mom will get through this like we all have. Remember to take care of yourself too!  Best of luck to you both we will be thinking about you and sending positive vibes!

  • bdavis
    bdavis Member Posts: 6,201
    edited February 2011

    Just found this forum... I had a lumpectomy in December, but I am considering a PBMX after chemo just because I don't want to think about this anymore, and have other benign things in my cancer breast... After reading this, it seems there really is no such thing as forgetting about it... but my odds are hugely improved, right?

    My current plan is finish chemo, 6 weeks of rads and then 5 years tamox... plus ovary removal... plan B is to have PBMX and maybe no rads (but not sure)... I did have one small trace .38mm in sentinel node... bith bs and onc say MX is not medically necessary...

    Having genetic testing Monday.

    Thoughts??

  • tobyj
    tobyj Member Posts: 19
    edited February 2011

    My results were good!  :)  God bless

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Sorry to hear you had a recurrence Laura.  Glad you found it early!  

    Intellectually, I know the risk for recurrence in the breast tissue is still technically there after a BMX, but emotionally it felt right for me.   Plus, I wanted to avoid radiation if at all possible.

    No regrets. :) 

  • annie06
    annie06 Member Posts: 156
    edited April 2011

    Just found out IDC after bilat mast and reconstruction. 5 years out. Here we go. Recovering from surgery....not sure what other tx will be as of yet. Came very unexpectedly, but I have peace. Looks like we're all in this together.....

  • lsugirl
    lsugirl Member Posts: 49
    edited April 2011

    Annie - I'm sorry you're having to go through this again.  Would you let us know how you found the recurrence so we can all be "on top of it".  Thank you so much and God bless!!  

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2011

    Annie, that just friggin' SUCKS!!!!!!!!!

  • annie06
    annie06 Member Posts: 156
    edited April 2011

    Thanks all. It was a very noticeable lump...small...near scar and original site of first Idc. Two US said benign. Everyone thought granuloma. Two years go by. Idc 1.7 cm. My chance of recurrence with bilat mast?? Low. But when it's you.......it's 100%. I am trusting and resting in God, and thankful for the peace I have thru Him. Every day sure is a gift.......more tests....appts......

  • Kadyann
    Kadyann Member Posts: 53
    edited April 2011

    Annie,

    i am dealing with a similar situation.  I was 6.5 years out.  It is a little up in the air as to whether I am dealing with a recurrence or new primary because of some differences in pathology.  Mine was also found near original site but was surrounded by healthy breast tissue which is somewhat unusually but a good prognastic feature.  I think that I relaxed a little when I got past the 5 year mark, but I don't think that I will be able to do that ever again.  Good Luck!

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2011

    Kadyann, you are ER+, you didn't have to worry UNTIL the 5-year mark! ER+ is slow growing. We don't have to worry for the first little while, but have to step up the vigilance as time goes on. ER- ladies have the risk at the beginning, but as time goes by, the odds of occurrence goes down.

  • Kadyann
    Kadyann Member Posts: 53
    edited April 2011

    My original was er/pr negative.  I had dcis with microinvision of 1.9mm.  DCIS was commedo w/ necrosis grade 3.  Current idc is grade 1 er + , her2+.  I received a second opinion this time from the Mayo Clinic and their pathologist felt that 1.9 mm was too small to grade and that it was possible that I had high grade dcis and low grade idc (although from my own research does not sound real common).  However the first was definitely er/pr-.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2011

    Okay, in that case, it was the grade 3 that did it. Cancer SUCKS!

  • Kadyann
    Kadyann Member Posts: 53
    edited April 2011

    Well, that's the tricky part because if this is a recurrance the idc was grade 1 so the grade 3 dcis shouldn't have mattered that much.  I am one of those cases that doctors love to discuss and sit around and ponder.  Interesting for them , not so much for me

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2011

    Have they considered the possibility that there was IDC in your DCIS right from the start? That is common.

  • Kadyann
    Kadyann Member Posts: 53
    edited April 2011

    There was, that was the micro invasion of 1.9mm.  I basically had a whole lot of nasty dcis and just 1.9 mm of microinvasion so my official stage was T1a.  The 1.9 mm was too small to determine her2 so I was basically treated as a triple neg.  I had a mastectomy and no further treatment.  The confusion is that the original diagnosis was high grade idc (original oncologist stands by diagnosis) but this is low grade and looks extremely different under the microscope.  The original 1.9mm is just too small to tell much about so both doctors concede that there is really no way to tell if it is a recurrence or new primary.  Each is leaning a different way so I did go with the more aggressive treatment plan.  It is also unusual to have a grade 1 her2+ cancer.

  • annie06
    annie06 Member Posts: 156
    edited April 2011

    Kadyann

    So surrounded by clean tissue is a good prognostic factor? I need more info. I should get some this week. I have NO idea what my tx will be. I'm done guessing. Will it be aggressive...more aggressive than last time? Is radiation something I would benefit from? Chemo again? ugh. I always knew I was at risk...and I was proactive. I just couldn't push their hands to get this thing out of me. Nobody was concerned. Seems crazy to me. So here I go again. I don't want to be bitter....that is it's own cancer. :-( I am looking ahead (trying to)...not back. God is my shield and my strength!

  • Kadyann
    Kadyann Member Posts: 53
    edited April 2011

    From my own research and my doctors comments it would seem that having the idc surrounded by healthy breast tissue after a mastectomy is both unusual but good.  I think it was in Dr. Susan Love's book that I read that it is viewed more as residual than a progression of disease. It is much more likely to come back in the scar, skin or nearby lymph nodes.  Radiation was not an option for me at this time but if you did not have it the first time around I bet that will be a recommendation now.  I found that studying my path report was very helpful as I had several things that were quite unusual.  Just had my 3 month checkup yesterday and all is well so far.  You will get through this!! Oh, and I had 2 opinions and both consider this still a "curable situation" for what ever that is worth.  I am fine with NED as long as I am around to become a little old lady.

  • annie06
    annie06 Member Posts: 156
    edited April 2011

    Thanks for the info!!! I will get more tomorrow. I am anxious to see the path report (in a good way). My surgeon didn't think there was anything left to be concerned about re: radiation...and I didn't have it last time...IDC...mastectomy, A/C dose dense, tamoxifen...then right prophy mast with bilat recon. I also had genetic testing and that was neg. I am pre meno so I will likely have ovaries out and put on an aromatase (sp?) inhibitor. I wanted that done years ago!!!!!!! Said I wasn't 'high risk'. OK. Thankful that I am resting in God. No surprises for Him. He's got me. I'll keep you posted!

  • Leisa1968
    Leisa1968 Member Posts: 11
    edited April 2011

    I was hoping to never have to deal with cancer again, but yet another scare.  I see the surgeon tomorrow for ultrasound and consult.  I was dx in March 2008 after celebrating my 40th birthday and getting my 1st mammogram.  IDC stage II with 2/9 nodes positive.  I chose chemo with double mx.  I just celebrated my 3 years only to find a lump a few weeks later under the "good" boob.  I just hope it has not decided to turn on my too!Wink

    Also I have been having a pain between my chest wall and the implant, really bad when I cough or sneeze.  Has anyone else experienced this?

    The one thing I try to do is keep positive and not worry about the unknown which we all know is so much easier said than done.  I am thankful for this board and appreciate everyone sharing their stories!  I will hopefully be posting good info tomorrow!

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited April 2011

    Hope to hear good news from you today Leisa! I had an ultrasound yesterday in my armpit and they're pretty sure it's all normal. If I don't get a call-back in the next couple of days when it gets reviewed again, I can breathe.

  • loridb
    loridb Member Posts: 1
    edited April 2011

    I had breast cancer 4 years ago, with lumpectomy. At the 3 year checkup, they found another lump. Second lumpectomy last year-same breast, but no clean margins (even though I had 2.5 cm margins). When my surgeon was getting clean margins, he took out another tennis ball size lump, and found a 3rd tumor. So then I had the mastectomy last summer. After the swelling went down, I noticed a lump in the mastectomy site. When the insurance would pay, I had it tested (a couple of weeks ago) and it is the same colloidal, estrogen receptor positive, well differentiated cancer as the first three times. I just had a second lump in the same mastectomy site biopsied today.

    My oncogen test in 2007 said that I'd reduce my chance of metastasis 4% with tamoxifen, chemo, aromatase inhibitors or radiation, by 2010, those same treatments would reduce my chance of metastasis 10 years from now by 1%. Now I guess it is even lower. I am thinking about turkey tail mushrooms, iodine, hyperthermia, nanoparticles- Does anyone have any experience with these treatments?

    As the standard tools don't work well 1% reduced chance of metastasis is way too low for me to want to do those treatments. I'm scared when I read that one of the keys tosurvivability is the amount of time between the mastectomy and a recurrence, and mine was less than a couple of months. I have a great surgeon-super meticulous. I'm wondering if I need to be as scared as I am when I read the research about recurrence after mastectomy?This could have been  a stray cell-andit is the samenot very aggressive cancer. I also read that colloidal cancer is not likely tomove into the lymph system. Any advice from women with similar diagnoses would be appreciated!

  • teds_pammy
    teds_pammy Member Posts: 3
    edited May 2011

    hi its teds_pammy again: I have been reading  your posts and I never realized how many of us there are. It is really scarey to find a recurrance after taking all the treatments, chemo, radiation, tamoxafin and bilateral mastecomy. What else are we supposed to do?

  • teds_pammy
    teds_pammy Member Posts: 3
    edited May 2011

    hi its teds_pammy again. I went for a biopsy today and the news was good. Dr. says it's a fatty calcium deposit from all the surgery I've had over the last 4 months.

  • mommy2sweethearts
    mommy2sweethearts Member Posts: 3
    edited June 2011

    Hi there,

    I was diagnosed with bc in Aug. 2008 when I was 31 years old. It was stage 2b, grade 3, hormone receptor positive, her2neu positive. I had a double mastectomy, reconstruction, hysterectomy (due to pre-cancerous growths from tamoxifen), 6 rounds of chemo, and 1 year of herceptin. Now almost 3 years after diagnosis, I have a lump near the original tumor site. Did MRI last week and now they want to look at it more closely with an ultrasound. They will do a biopsy if needed. Tomorrow at 8:00 am is my appt. Please pray that it will just be scar tissue or something! My children need me around for a long time yet. They are 9, 8, and 4. My mom died of bc when she was 43. I was 20 and that was still too soon. I was hoping I would never have to deal with this again. Please pray!

    Thanks,

    Ellen  :)

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited June 2011

    Praying VERY hard for you today Ellen!! Please post back here to let us know how you're doing!

  • DMD
    DMD Member Posts: 61
    edited June 2011

    Sending out prayers, hope, love, hugs, positive thoughts....anything it takes to ensure that this is just an unfortunate scare for you!!!!  Please let us know when you get the news that ALL IS OK!!!

    Dawn

Categories