Anyone at high risk of recurrence..

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  • JaxsonHarley
    JaxsonHarley Member Posts: 95
    edited December 2006

    Hi Nancy, I wish you well with your treatment. I was diagnosed with DCIS 4 yrs ago, 2 lumpectomies & radiation. I was really uncomfortable with the side effects of Tamoxifen,one of them being a risk of uterine cancer, which my mother had. I don't know, I guess I am just really nervous having Atypical cells show up on another biopsy in the same breast, instead of waiting and watching & trying to put it off by taking something, i am thinking that a mastectomy would put an end to all the speculation & worry.I guess it will all come down to what the surgeon is thinking when I see him in 2 weeks.I will check back here to let you know what we decide, Thanks, take care, Jackie

  • scared4myaunt
    scared4myaunt Member Posts: 1
    edited December 2006

    my aunt is 72 she has been cured from brest cancer in her left brest for 6 years. no they think its in her right brest does sanyone know anything about this

  • JaxsonHarley
    JaxsonHarley Member Posts: 95
    edited December 2006

    scared4myaunt, First of all, prayers for your Aunt right now, I hope it turns out that she doesn't have it again. I think once you are diagnosed, no one is really "cured" from it. They are just put into a remission, where there is no sign of the disease.It can show up at any time, any where, after having treatment for it, this is called recurrence.What kind of treatment did she have the first time? Would she talk to you if you voiced to her your concern?She might be able to explain things more clearly to you.Either way, I hope it all works out for her,take care, Jackie

  • mkl48
    mkl48 Member Posts: 350
    edited December 2006

    It can just as easily be a new primary. That is yet to be determined it seems. Both are quite different than distant disease. It is discouraging, but an event to be delt with. if a new primary it is independnent in outcome. Beth

  • JaxsonHarley
    JaxsonHarley Member Posts: 95
    edited December 2006

    Thank you for clearing that up Beth, you are totally correct. Jackie

  • yellowfarmhouse
    yellowfarmhouse Member Posts: 279
    edited December 2006
    Hi Janis,

    I've been looking trials up lately. Is this trial ( the vaccine ) only for stage 3 and 4? I am not really sure what stage I was for sure as it didn't say on any report and my onc. couldn't ( or wouldn't ) tell me either. I had four nodes positive and one was 1.5 cm which was almost as big as one of my multifocal tumors. It didn't say if the nodes were matted. As far as I can tell I was 2B/3A.

    Also, would you fly out to Washington for the study or is there someplace closer?

    I have been frequently checking Mayo's website for applicable trials but nothing really good there which surprises me as such a well respected place. Maybe more of the research is at the big universities?

    Anyhow... I'm also hoping that a Tykerb trial comes out for those of us who had Herceptin and were "stage 1-3".

    Just my thoughts... thanks for posting this topic
    Wendy from Wi
  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited December 2006

    I ask my doctor, it is not open yet. I was hoping I could do it locally. My oncologist is really into clinical trials. I will let you know.

  • yellowfarmhouse
    yellowfarmhouse Member Posts: 279
    edited December 2006
    Thanks! My onc. isn't into them much at all. I go to a really small clinic here in WI. He told me that I should keep my eyes open for trials as "patients hear of them before they do." I've had many frustrations with my onc. but ultimately I fought of and got the treatment I wanted to do. I'm thinking of switching my oncology care to Mayo in Rochester where my friend goes. If it wasn't for this board and all the info I gleaned from you and all the other great ladies here I think I would have complacently taken what they had offered.
    I'll keep watching for more info and will also try to let you gals know what I learn too.

    I SO appreciate you all,
    Wendy
  • seahag
    seahag Member Posts: 2
    edited January 2007
    Hi, I'm new to the board, but have some questions about clinical trials. I had left mast in Nov and began treatments last month. 4x every 2 wks AC then on to T 4x every 2 wks. I am also a lung cancer survivor of 13 years. My big question is that I was under the impression that unless you began with a clean slate (no meds, ie Chemo/Rads) clinical trials would probably not apply. Can someone confirm?

    Tks much and Happy New Year to all!
  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited January 2007
    seahag...not true. Some trials are open, but usually the disease has to progress..

    Congrats on being a lung cancer survivor. 13 years?? Awesome.

    Janis
  • rsinkey2005
    rsinkey2005 Member Posts: 6
    edited January 2007

    Hi Jackie, I too had atypical hyperplasia in my right breast in 2002(which technically is precancer). That was the 2nd time I had been biopsied. By 2005, my "suspicious microcalcification" turned out to be Stage 1 breast cancer with microinvasion. I decided on a double mastectomy and have never regretted my decision. I also am an OB-GYN nurse and have seen too many women with reocurrences. This is a very individual and personal choice we all have to make and live with. I can say my only regret is being undecisive at the time of my surgery as to whether I wanted immediate reconstruction or not. Knowing what I know now, and what I went through 6 months later to have the expander put in, I would definitely recommend women to have the tissue expander put in right after the mastectomy.

  • JaxsonHarley
    JaxsonHarley Member Posts: 95
    edited January 2007

    Hi Rsinkey! Thanks for sharing your story with me, I do so appreciate it at this time of non-stop thnking about everything.I am convinced that if I take the "wait & see" attitude, I will undoubtly be fighting a bigger fight the next time. I do believe my only wise choice is to have the bi-lateral mast., an Oomphrectomy at that time also, and having immediate reconstruction done.I just have to research what my alternatives are as far as recon, as I have been previously radiated on the left side.I would really rather not do the flap method, it just seems so drawn out of a process.When was you mastectomy? And how are you doing now? I hope you are well and on the road to recovery.Thank you again, Jackie

  • seahag
    seahag Member Posts: 2
    edited January 2007

    Thanks for the information. That is good news. Prior to my breast surgery, I signed (tons of paperwork) to have my tumor donated? for research, etc. My surgeon is associated w/Moffit, in Tampa, FL where they have a program that you can "donate" your tumor for research and your kept in an info. bank. If they come up with trials, etc that might fit your profile, you are then contacted by the person who signed you up. All info. is protected by privacy laws. Glad to see that this is all progressing in a promising way.

  • rsinkey2005
    rsinkey2005 Member Posts: 6
    edited January 2007

    Jackie, I had my bilat. mastectomies Sept. 2005, with 3 lymph nodes from each side (all neg) removed. I started the first part of reconstruction in March 2006, when the expanders were put in. My fills started in April and finished in July. My 2nd stage exchange surgery is scheduled for March 2007,when the real implants will be inserted. I am doing well, thank you, and I know you will too. Please let us know how things are going and what you find out at your surgeons office next week. Take care and stay strong!!

  • JaxsonHarley
    JaxsonHarley Member Posts: 95
    edited January 2007

    rsinkey, I have my surgery scheduled for March 15th.I met with a really great plastic surgeon, and we will do a bi-lateral, with expander to the right side(unaffected side) with implant, and a lat. flap with expander to the left(Previously radiated)with implant.He said this would be the best way to go,and that everything would look great in the end.So it looks like we will both be headed in the OR in March.Can I ask you why did you have to wait from July to April for the exchange?Is it because you had to undergo further treatment? I appreciate so much having someone to talk to about all this, sure makes it alot easier.Thanks again, Jackie

  • Carolslowski
    Carolslowski Member Posts: 5
    edited April 2007

    I am starting to get very concerned reading all these posts. I had a lumpectomy in 2000 for dcis with marginal margins. The surgeon said that it was not really a cancer but like a pre cancer that they got early. He said I should probably have radiation but it was up to me. (Very Non-chalant) never told me to go off the premarin, never mentioned this tamoxifen. I wanted to be sure so I had many rounds of rads. Now, I have some mircrocalcifications (not many the radiolgist says)but sent me to a (different) surgeon. The surgeon wants to do a biop on that left one and because he found a lump in my rt. one...he wants to do a sonogram with a possible biop of that too. So from hwat I am reading here...my chances for recurrance plus ca on the other side were increased: 1. Because I've had a lumpectomy and 2. because I had DCIS even tho the surgeon said it wasn't really cancer (?) and 3. Because I still took premarin for a time after the lumpectomy? This is scarey news. Can anyone please enlighten me on this? I had a stroke in Sept. and I am only 56 years old....how can this all be happening?

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    edited June 2007
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