anyone have a re-occurance with bilat masectomy?

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everytime i read about a reoccurance its in the other breast! I have had a bilateral masectomy and want to know who common a reoccurance is...

any comments or stories please share
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Comments

  • cathleen8
    cathleen8 Member Posts: 7
    edited July 2007

    I had a re-occurrence over my R. mastectomy incision on to a right node and skin spread, plus hard lumps and all within only a month after the surgery and then it spread into a node in my left breast. This will know doubt have to be removed but I am in treatment with Chemo and just to begin radiation. My cancer is ILC HER-2-NEU-2 (8/10 nodes+)

  • tos
    tos Member Posts: 376
    edited July 2007
    Cathleen8 boy I am so sorry you have had a recurrence and so soon, only a month after surgery!
    I had a bilateral last April after being dx again on the other side w/what they call a new primary and have been wondering what to look for when doing a self breast exam. Did you find your recurrence or was it found during testing or an exam?

    I sure hope things go as smoothly as possible for you during your chemo and rads.
  • linderella
    linderella Member Posts: 1
    edited July 2007

    I had a bilateral in dec. 2001/ triple neg. grade 3 one node. It came back in a lymph node under my arm in June of 2004. Went back on chemo and had radition and so far NED.

  • mar8dar
    mar8dar Member Posts: 23
    edited July 2007

    i had bilateral mastectomy after intial diagnosis. When the labs came back on the other breast there were precancerous conditions

  • Carmelle
    Carmelle Member Posts: 388
    edited July 2007
    i had biulat mast in march 03...there was DCIS in my good breast after surgery.
    had invasive + nodes on other side. chemo, rads. ooph and nothing so far, my right side had margins positive after mast.
    Michelle
  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited July 2007
    How did they find the cancer in your lymph node??
    I just had a bi mast on 3/21....node negative....
    Traci
  • colleen42
    colleen42 Member Posts: 50
    edited July 2007
    thanks for all the responses...I worry about re-occurance on the chest wall and really wanted to know how common it was..
    thats awful to have to go thru chemo again!
  • GreenHeron
    GreenHeron Member Posts: 85
    edited July 2007
    I had lumpectomy (3 surgeries to get clean margins) with Chemo and rads DX Feb 03, finished rads Aug 03. Bilat January 05. Still NED.

    good luck to you! I hopw we have the same cancer god.

    Flash
  • Harley44
    Harley44 Member Posts: 5,446
    edited September 2007

    Hi.

    I had bi-lateral mast. on May 2nd, node negative... I'm getting chemo, 4 tx of Taxotere and Cytoxan.  I have just had tx #3.  Will have #4 on Oct 9th and reconstruction on Nov 7th...

    I like to hear encouragement from others.

    I sure don't want to go thru this again!

    Good Luck!

    Harley

  • cewoliver
    cewoliver Member Posts: 32
    edited September 2007

    I am worried now. I did not have chemo. My oncotype score was 12% distance recurrence and I had invasive cancer. I did have double mastectomy and complete hysterectomy but I am not getting any more treatment .I am now wondering if I needed more .Chemo or rads?

  • roseg
    roseg Member Posts: 3,133
    edited September 2007

    Are you on a hormonal?

  • acarr
    acarr Member Posts: 104
    edited September 2007

    I had bilateral modified mastectomy in 1990.  I had 8 rounds of Adriamycin, Cytoxin and 5-FU.  About 8 months after I finished chemo, I had a recurrence on my cancer side.  I didn't undergo chemo again, but did have surgery and radiation.  I've been cancer free since then. 

  • jezza
    jezza Member Posts: 698
    edited September 2007

    I had a grade 3 cancer...no node involvement. I had a prophylactic mastectomy 6 months after my first mastectomy...no chemo no rads. My breast surgeon thought I was high risk to get bc in remaining breast...which is why I decided on the 2nd mastectomy.That was 15 and a half years ago...no recurrence.

    jezza

  • Sandra1957
    Sandra1957 Member Posts: 1,701
    edited September 2007

    jezza - That's AWESOME!!

    Did you take or are you on any hormonal therapy??  Ductal or Lobular?

  • cewoliver
    cewoliver Member Posts: 32
    edited September 2007

    Rose I have not been on line in a few days .No my oncologist said I did not need any since I had to have a complete hysterectomy. I was on femara for 8 months but developed a tumor (thank God it was   b-9) But it was 10 cm. and very painful . I had lost my right ovary the month before because a report had said it was on the right side.

    So was told next am oh so sorry but now we will have to take out the left ovary as soon as you recover from this . It grew from 4 to 10 cm. in 6 weeks. Anyway now I have very little confidence in some of the doc's I am seeing .Should I just get over it and go on .It is hard since I was made fun of for being scared when I found my lump. The surgeon had me wait for a month for mammo because he said it was nothing . Then found out is was not cyst and after removal turned out to be I.D.C. and the margins were not clear so I freaked out and went to another breast surgeon(who I love )and had double mastectomy. I had abnormal cells in both breast and lost all nodes and some muscle. Nodes were clear but I hear so much about re-occurrence that was really just a miss the first time.Thanks for letting me vent this a.m. and I covet any remarks.Love Elaine

  • Calico
    Calico Member Posts: 1,108
    edited September 2007

    acarr and jezza,

    thank you for your success stories and congrats on beeing ned for so long

    God Bless

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008

    Cewoliver,



    I saw your post above. How awful that the doctor humiliated you for being scared of a breast lump, which then turned out to be breast cancer! Shameful!



    I understand you took Femera for 6 months, which suggests your breast cancer was estrogen sensitive. Rose asked if you were on a hormone, and you answered no, that because of your hysterectomy and ovaries having been taken out, your doctor advised it was not necessary.



    It's never to late to start a hormone drug, Cewoliver. Many of us use a hormone as a "safety net" to double reinforce the treatment we received (your surgery).



    Perhaps you might want to talk with your oncologist, or if you do not have one, ask your primary doctor to refer you to an oncologist to discuss whether a hormone might be helpful.



    It may give you more peace of mind, which is definitely worth a lot.



    Keep posting, perhaps with the details of your original tumor findings, like size, and the pathology report, and talk about any lymph nodes, and estrogen or progesterone (receptor) positive or negative. Perhaps we can help too.



    All the best,

    Tender

  • sahalie
    sahalie Member Posts: 2,147
    edited September 2008

    Hi everyone,

    I had a bilateral mastectomy in 2006 with no reconstruction.

    I just graduated to check ups each six months.

    I am wondering what the norm range is for our cancer antigen

    test CA15-3 is and does it fluctuate?

    Thanks. 

  • Calico
    Calico Member Posts: 1,108
    edited September 2007

    I think anything under 32 is "normal". Mine was 19 when diagnosed then 20 after mastectomy, down to 14 and lately constant at 17.....I freaked out when it went to 20 but my onc says it could fluctuate by the minute....so no worries he says....

    God Bless

  • cowgirl
    cowgirl Member Posts: 777
    edited October 2007

    While I did not my aunt did. As my surgeon explained it any cell can cause cancer.

  • KLynn
    KLynn Member Posts: 1,407
    edited October 2007

    Hi Colleen, I had bilateral mast. in 2000. I had chemo radiation and herceptin for 1 yr, also took tamox for almost 5 yrs when i had my recur . The recur of mets was to the lungs (Many spots in both lungs no large tumors). that was in 2005, I have been getting chemo and hercetpin for almost 2 yrs. this time and today just found out I no longer will be getting chemo, only the hercetpin because I am in remission. It took a long time to get rid of the spots but hopefully  I will stay clear for a long time. Take Care KLynn

  • mkl48
    mkl48 Member Posts: 350
    edited October 2007

    HI,

    How did you get Herceptin in 2001 for early stage disease. I thought it was for mets only then? I know it was approved for neo or adjuvant in about 2 years ago. Kate 

  • KLynn
    KLynn Member Posts: 1,407
    edited October 2007

    Yes  Kmb,  I was part of the original herceptin trial then, some women were put on 6months of herc. while others got the year plan. I was hoping at the time to get the 6 months because after chemo and rads I had just about had it. Of course my luck i was given the yr plan lol,( luck of the draw). I was able to quit at any time because of the trial, and i though I would , but when push comes to shove you do what you have to and iIstayed  the course of 1 yr. which I am very grateful for. I was stage 2 something --- I had 6 of 17 positive nodes.I have a great doc and followed his advice. My initials are KLB funny huh???? Take care KLynn

  • Krisseykatz
    Krisseykatz Member Posts: 21
    edited December 2007

    ME!  and I am hoping that it is ONLY a local re-occurance.  I had extensive DCIS 2 yrs ago and had a bi-lateral mastectomy..No node involvement...(they took 3 nodes)  possible lymphovascular invasion, but I had a second Oncology opinion and that was ruled out..by 2 Drs.   Now I have a lump in my reconstructed cancer breast that is positive for malignant cells..and basically, I am freaking OUT!  DCIS?  the good cancer?  help..my surgery isnt until next week!

  • Krisseykatz
    Krisseykatz Member Posts: 21
    edited January 2008

    Hi there...I am finally done with all my excisional biopsies..(there were 3) all cancerous..in my reconstructed mastectomy breast...(I have bi-lateral mastectomies with silicone implants)...got my blood work results back...and PET scan results back and NO METS..thank GOODNESS...I had DCIS, STAGE 0 2 yrs ago, bi-lateral mastectomies..and now exactly 2 yrs later...3 new invasive cancers...one of which may even be a new primary.

    So now I start Chemo, Andriamycin and Cytoxan on Thursday!   Then surgery to get the margins clean under my arm from one of the tumors, then 8 weeks of Radiation!   And they told me how lucky I was to have the "good" cancer....Since they can't take any more lymph nodes, ( I had 3 removed before)...they are treating me as if I was a stage 2b or 3....can you believe this?  Less than 1% chance of recurrence...and lucky me!

  • Calico
    Calico Member Posts: 1,108
    edited January 2008

    Krissey,

    that is so unfrigginbelievably unfair!!!...I am sending you a big cyber hug!!

    Thank God no mets.

    I suppose due to the mast you didn't get Tamox or AI's?

    Do you have hormone receptors yet for the new primary?

    Why can't they take more nodes? Would they not want a complete axillary disection?

    Lots of good thoughts, vibes and prayers for an uneventful chemo!! May it kick cancer butt once and for all!!!!!

    Hugs!!

  • jch
    jch Member Posts: 54
    edited January 2008

    Krisseykatz,

    I hope things go well for you. I logged on tonight (to obsess a little) because I go in tomorrow to get a pea-sized lump on my reconstructed breast looked at....I had DCIS, grade 3, ER negative, in multiple spots, and had bilat. masts about a year and a half ago. Your story is certainly not the one I wanted to find....nor the one I am sure you want to be going through. Hang in there. I'll be thinking of you. 

  • Krisseykatz
    Krisseykatz Member Posts: 21
    edited January 2008

    ICH!  Please let me know how your appointment goes!   There are really and truly a ZILLION (well, not exactly) but a lot of other things it could be!  Fat Necrosis...Scar Tissue...etc..Do you have Implants or totally new tissue from a Flap?  Fat Necrosis is pretty common in the tissue transplants.  As for the other question...I had three invasive cancers taken out..One was microscopic...The others, one was er+ 40% and the other was er+10%..still waiting on the Receptor test results....When I had DCIS I was 90% er+, I guess it is normal to drop a little..but the 10% is the one they are questioning as a new primary..it also has an invasive lobular component while the others were ductal.

  • Krisseykatz
    Krisseykatz Member Posts: 21
    edited January 2008

    Oh yes...and the NODE question...I spoke with both my Oncologist and Surgeon on this one, because I had so many previous Breast Surgeries, Biopsies and Axillary Disection..the pathways are all messed up..so to speak....so it would be difficult to go back in and search around.....

  • jch
    jch Member Posts: 54
    edited January 2008

    Krisseykatz, I have an ultrasound set up for tomorrow, so hopefully I will know something then. I will be thinking about you for your first chemo....

    Julie (JCH) 

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