New and just had double mastectomy

anitap1
anitap1 Member Posts: 25
edited March 2014 in Breast Cancer #1
I am 11 days out from a double mastectomy. Having the second was my option so that I don't have to go through this again. I returned to the doctor yesterday, and received most of my pathology report. The FISH report wasn't finished. Good news! My lymph nodes were free of cancer. I had 99% progesterone and 99% estrogen receptive and HER/new 2+ in the initial biopsy results. I understand that the HER 2+ is the one I need to be more concerned with. I guess I am just in limbo until I get the FISH results. I was hoping the drains would come out yesterday, but the doctor said they were not ready. I had cervical cancer when I was 27. I won that battle. Now at 63, I am facing a new battle. I just needed to talk to those who have been there and done that.
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Comments

  • Dot53
    Dot53 Member Posts: 239 Member
    #2
    Hi and Welcome...
    I am glad
    Hi and Welcome...

    I am glad you found us... I also had a bilateral mastectomy back in Dec 09..still going through the process... there are many wonderful women on this site that will be happy to answer your questions or just be there for you....

    Best,
    Dot
  • new2me
    new2me Member Posts: 177 Member
    #3
    Mine is HER2 positive
    HER2 Positive means this is a gene inside your cancer cell telling it to grow very fast. The good thing about this is that there is a drug specifically for this kind of cancer. Called Herception - it is considered a smart drug and will not make you sick or lose your hair like the other Chemo meds. I have to take herception for a complete year - but I also have to take the others - others that have side effects. But only for 6 treatments. So....I'm hoping when I am finished with my first 6 and am taking only the herception - it will be a piece of cake. I'm very new to cancer and have only had 1 treatment so far. So, what I say could be different from others.
    MIne spread to 2 out of 15 lymphnodes and after my PET scan it showed that nothing had spread anywhere else in my body. But I also know that small microscopic cells could have slipped through this is why the Chemo.

    So sorry you have to find this site this way. My heart goes out to you.

    Good luck to you

    Kelly
  • anitap1
    anitap1 Member Posts: 25
    #4
    Dot53 said:

    Hi and Welcome...
    I am glad
    Hi and Welcome...

    I am glad you found us... I also had a bilateral mastectomy back in Dec 09..still going through the process... there are many wonderful women on this site that will be happy to answer your questions or just be there for you....

    Best,
    Dot

    Thanks for responding.
    Thanks for responding. Everything is so new to me. The woman at the "boob store" recommended that I get on here. I'll have to thank her.
  • anitap1
    anitap1 Member Posts: 25
    #5
    new2me said:

    Mine is HER2 positive
    HER2 Positive means this is a gene inside your cancer cell telling it to grow very fast. The good thing about this is that there is a drug specifically for this kind of cancer. Called Herception - it is considered a smart drug and will not make you sick or lose your hair like the other Chemo meds. I have to take herception for a complete year - but I also have to take the others - others that have side effects. But only for 6 treatments. So....I'm hoping when I am finished with my first 6 and am taking only the herception - it will be a piece of cake. I'm very new to cancer and have only had 1 treatment so far. So, what I say could be different from others.
    MIne spread to 2 out of 15 lymphnodes and after my PET scan it showed that nothing had spread anywhere else in my body. But I also know that small microscopic cells could have slipped through this is why the Chemo.

    So sorry you have to find this site this way. My heart goes out to you.

    Good luck to you

    Kelly

    Mine had grown from the
    Mine had grown from the initial diagnosis until the surgery. Thanks for the information about the HER. The surgeon didn't really explain any of this. I will be back and learn from you and others. Thanks
  • Sally5
    Sally5 Member Posts: 87
    #6
    anitap1 said:

    Mine had grown from the
    Mine had grown from the initial diagnosis until the surgery. Thanks for the information about the HER. The surgeon didn't really explain any of this. I will be back and learn from you and others. Thanks

    Here to help
    Anitap1

    Welcome. Sorry you have to be here. I am almost at 7 weeks. (doubIe also) It all gets easier with time.

    It is important to stretch. Of course, ask your dr. first. My doctor said it was important to get your range of motion back.

    Sounds like you are keeping a positive attitude. (I know it is easier said than done).
  • carkris
    carkris Member Posts: 4,553 Member
    #7
    Sally5 said:

    Here to help
    Anitap1

    Welcome. Sorry you have to be here. I am almost at 7 weeks. (doubIe also) It all gets easier with time.

    It is important to stretch. Of course, ask your dr. first. My doctor said it was important to get your range of motion back.

    Sounds like you are keeping a positive attitude. (I know it is easier said than done).

    welcome you will love the
    welcome you will love the people on this site, they are smart, caring, non judgemntal and helpful. I had a double but 16 years apart. I wish I had done it before, but hindsight is 20/20. hope you get more good news.
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #8
    Dot53 said:

    Hi and Welcome...
    I am glad
    Hi and Welcome...

    I am glad you found us... I also had a bilateral mastectomy back in Dec 09..still going through the process... there are many wonderful women on this site that will be happy to answer your questions or just be there for you....

    Best,
    Dot

    I want to welcome you, even
    I want to welcome you, even though I am sorry that you are here. I had a lumpectomy, so, I don't know what you are going through.

    Want to wish you good luck!

    Hugs, Debby
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #9
    carkris said:

    welcome you will love the
    welcome you will love the people on this site, they are smart, caring, non judgemntal and helpful. I had a double but 16 years apart. I wish I had done it before, but hindsight is 20/20. hope you get more good news.

    Hi and Welcome! You have
    Hi and Welcome! You have found the best group of bc survivors ever that will support you and encourage you all the way thru your treatments.

    Wishing you good luck!


    Sue :)
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #10
    anitap1 said:

    Thanks for responding.
    Thanks for responding. Everything is so new to me. The woman at the "boob store" recommended that I get on here. I'll have to thank her.

    Congrats on clean nodes!
    Congrats on clean nodes! That is great!

    Good luck to you and rest and recover from your surgery!


    Hugs, Jan
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #11
    Sally5 said:

    Here to help
    Anitap1

    Welcome. Sorry you have to be here. I am almost at 7 weeks. (doubIe also) It all gets easier with time.

    It is important to stretch. Of course, ask your dr. first. My doctor said it was important to get your range of motion back.

    Sounds like you are keeping a positive attitude. (I know it is easier said than done).

    Sally
    Hoping you can rest, relax and recover quickly too!

    Sue :)
  • Alexis F
    Alexis F Member Posts: 3,598
    #12
    Dot53 said:

    Hi and Welcome...
    I am glad
    Hi and Welcome...

    I am glad you found us... I also had a bilateral mastectomy back in Dec 09..still going through the process... there are many wonderful women on this site that will be happy to answer your questions or just be there for you....

    Best,
    Dot

    Welcome to this great
    Welcome to this great support group of survivors! There is a wealth of information and

    experience here just for you!

    I didn't have a mastectomy, but, I want to add my good luck wishes to you!


    Lex♥
  • anitap1
    anitap1 Member Posts: 25
    #13
    Ritzy said:

    Sally
    Hoping you can rest, relax and recover quickly too!

    Sue :)

    Thank you. I am doing
    Thank you. I am doing nothing except teaching online college courses and chatting on Facebook. My husband is taking excellent care of me. I am really just waiting on the FISH results so I know if I will be taking chemo. I did take my initial pathology report from the biopsy to the oncologist who treats my mother (92 with non-Hodgkins Lymphoma) and he said from those results he felt sure I needed chemo. I am just thankful that I had regular mammograms. I have had lumps removed before. The seventh lump was the one with cancer.
  • 24242
    24242 Member Posts: 1,398
    #14
    anitap1 said:

    Thank you. I am doing
    Thank you. I am doing nothing except teaching online college courses and chatting on Facebook. My husband is taking excellent care of me. I am really just waiting on the FISH results so I know if I will be taking chemo. I did take my initial pathology report from the biopsy to the oncologist who treats my mother (92 with non-Hodgkins Lymphoma) and he said from those results he felt sure I needed chemo. I am just thankful that I had regular mammograms. I have had lumps removed before. The seventh lump was the one with cancer.

    Welcome
    You have found a great place to be and understood. The waiting game seems to be the worst. I guess once treatments start we manage to buckle down and get through them. I found just living in the moment the easiest way to get through too much to think of anything or anyone else. It is our blessing to have those around us who love us and can comfort us. I have always been proud of being able to see the miracles when most are still looking. They come in the simplest of forms.
    Tara
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #15
    Hi and welcome -i just found
    Hi and welcome -i just found this wonderful site a week ago today, when I was diagnosed with breast cancer in my right breast. You can read all the information written by doctors or others, but to read other's experiences and insight on here has been invaluable to me! Friday I'm meeting with my breast surgeon to schedule my mastectomy, and I will also be having both removed. Sometimes I just lurk and read, sometimes I comment on a thread or two, and a couple times that I posted questions I got more answers and encouragement than I imagined.
    Blessings :)
    Heather
  • Christine Louise
    Christine Louise Member Posts: 426 Member
    #16
    Her2/neu 2+ but FISH negative
    My initial path report showed Her2/neu as 2+ but the FISH test came back negative.

    I hope your drains are coming out soon! Best of luck to you!
  • maggie24
    maggie24 Member Posts: 3
    #17
    Christine Louise said:

    Her2/neu 2+ but FISH negative
    My initial path report showed Her2/neu as 2+ but the FISH test came back negative.

    I hope your drains are coming out soon! Best of luck to you!

    Good Luck
    I had a double mastectomy in April. Cancer in one breast, the second mastectomy was my choice. I am HER2 neg. with no lymph node involvement, stage I. I just did not want to go through this ever again. I had three drains in for three weeks and reconstruction done with expanders at the initial surgery. Had my third tx out of four with cytoxin and taotere yesterday. I also had a port put in for the chemo. There are so many decisions in the beginning and I tell myself that was the hardest part. I get a neulasta injection the day after chemo and for me that is the worst of all of it as it gives me bone pain in my back, but I start claritin a week before the shot and it really helps. The expanders are quite uncomfortable, do not know if I would choose this route again. I think that my plastic surgeon overfilled me in surgery as I went from no chest to a D cup. I have not let him fill me yet although he wants to do two fills prior to surgery in October. I may let him do one fill and see how I tolerate that. I am bald, but wear wigs and scarves and try to stay as upbeat as I can. I have a wonderful husband and family and have found if I laugh and am upbeat so are they. I have done my share of crying too, but find that trying to stay positive is what helps me most. Good luck to you. Keep looking forward to the light at the end of your tunnel.
  • Katz77
    Katz77 Member Posts: 598
    #18
    Welcome
    " Boob" store. lol Thought I was the only one who called it that. Hope all your answers and concerns will be addressed here. Know mine have. Good luck with Fish results. I don't know what that is. Maybe someone will tell me. Even ater a year of this road, I stil find things to ask my onc. Never stop learning when I come here. ( :
  • bakerette
    bakerette Member Posts: 74
    #19
    maggie24 said:

    Good Luck
    I had a double mastectomy in April. Cancer in one breast, the second mastectomy was my choice. I am HER2 neg. with no lymph node involvement, stage I. I just did not want to go through this ever again. I had three drains in for three weeks and reconstruction done with expanders at the initial surgery. Had my third tx out of four with cytoxin and taotere yesterday. I also had a port put in for the chemo. There are so many decisions in the beginning and I tell myself that was the hardest part. I get a neulasta injection the day after chemo and for me that is the worst of all of it as it gives me bone pain in my back, but I start claritin a week before the shot and it really helps. The expanders are quite uncomfortable, do not know if I would choose this route again. I think that my plastic surgeon overfilled me in surgery as I went from no chest to a D cup. I have not let him fill me yet although he wants to do two fills prior to surgery in October. I may let him do one fill and see how I tolerate that. I am bald, but wear wigs and scarves and try to stay as upbeat as I can. I have a wonderful husband and family and have found if I laugh and am upbeat so are they. I have done my share of crying too, but find that trying to stay positive is what helps me most. Good luck to you. Keep looking forward to the light at the end of your tunnel.

    chemo
    Hi, I'm new to this. I get my bilateral mastectomy on July 16. I was of the understanding that if the lymphs were not involved there would be no need for chemo. Have I been mislead? I have been diagnosed with right breast interductal carcinoma insitu. That was on 5th of May. Since then I had another biopsy because another spot was found it was a little larger, still tiny. But the first wasn't big enough to run a panel on they said the second was. hormone neg. solid form, comedo. The comedo is what scares me as that is an aggressive form. But it is still 3 weeks till surgery. Will it still be insitu by then? So far they say it is very small very early non invasive but very aggressive. Ay yi yi! I intend to get the immediate reconstruction with expanders also. I have read that they are very uncomfortable like a tight band around your chest. So much fun to look forward to huh?
  • Hubby
    Hubby Member Posts: 325
    #20
    Katz77 said:

    Welcome
    " Boob" store. lol Thought I was the only one who called it that. Hope all your answers and concerns will be addressed here. Know mine have. Good luck with Fish results. I don't know what that is. Maybe someone will tell me. Even ater a year of this road, I stil find things to ask my onc. Never stop learning when I come here. ( :

    Had to Look up FISH test
    I had to look up Fish test myself. This is from cancer.org:

    Testing of the biopsy or surgery sample is usually done in one of two ways:

    immunohistochemistry (IHC): In this test, special antibodies that identify the HER2/neu protein are applied to the sample, which cause cells to change color if many copies are present. This color change can be seen under a microscope. The test results are reported as 0, 1+, 2+, or 3+.

    fluorescent in situ hybridization (FISH): This test uses fluorescent pieces of DNA that specifically stick to copies of the HER2/neu gene in cells, which can then be counted under a special microscope.
    Many breast cancer specialists feel the FISH test is more accurate than IHC. However, it is more expensive and takes longer to get the results. Often the IHC test is used first. If the results are 1+ (or 0), the cancer is considered HER2-negative. People with HER2-negative tumors are not treated with drugs (like trastuzumab) that target HER2. If the test comes back 3+, the cancer is HER2-positive. Patients with HER2-positive tumors may be treated with drugs like trastuzumab. When the result is 2+, the HER2 status of the tumor is not clear. This often leads to testing the tumor with FISH. Newer test methods are now becoming available as well (see "What's new in breast cancer research and treatment?").

    Basically it looks like a more accurate HER2 testing method.
  • anitap1
    anitap1 Member Posts: 25
    #21
    Heatherbelle said:

    Hi and welcome -i just found
    Hi and welcome -i just found this wonderful site a week ago today, when I was diagnosed with breast cancer in my right breast. You can read all the information written by doctors or others, but to read other's experiences and insight on here has been invaluable to me! Friday I'm meeting with my breast surgeon to schedule my mastectomy, and I will also be having both removed. Sometimes I just lurk and read, sometimes I comment on a thread or two, and a couple times that I posted questions I got more answers and encouragement than I imagined.
    Blessings :)
    Heather

    I wish I had found this site
    I wish I had found this site before my surgery. The six weeks of waiting for the surgery was the hardest part. I have been pleasantly surprised at how little pain I have had since the surgery. The only areas which bother me are the drains. The drain amount is way down today, so if they are down tomorrow, I can get them out. I have gone to church and to the beauty shop. Since I am not supposed to shower until the drains come out, I just had to go get my hair washed. I had a friend who had a bilateral mastectomy and she told me to get a carpenter's apron to wear to support the drains. The apron is wonderful. I just put it under my shirt and no one even sees the drains.

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