New and just had double mastectomy

2

Comments

  • anitap1
    anitap1 Member Posts: 25
    #22
    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!

    I hope my FISH test comes
    I hope my FISH test comes back negative. If not, I will have to have the chemo. I go to the oncologist on Monday.
  • anitap1
    anitap1 Member Posts: 25
    #23
    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. ( :

    I think that talking about
    I think that talking about it makes it easier to go through. I opted not to have the reconstructive surgery. If I was a younger woman, I might go through it. At 63, I don't need them. My husband went with me to talk to the plastic surgeon and when he described what was involved, my hubby and I just looked at each other and shook our heads. Those that come in the box are fine for me. In fact, it has been wonderful not even wearing a bra for these two weeks since surgery. The nurse told me to do what I felt I needed and not consider anyone else. With this decision, we do what we feel we need. We are the ones living with it.
  • anitap1
    anitap1 Member Posts: 25
    #24
    Hubby said:

    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.

    This is exactly how the
    This is exactly how the oncologist explained it to me. I am just anxiously awaiting my results.
  • anitap1
    anitap1 Member Posts: 25
    #25
    bakerette said:

    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?

    I waited about that long
    I waited about that long before I had surgery. My cancer had grown just a little. There was no cancer in the other breast. I decided to have both so I didn't have to worry as much and so I wouldn't have to go through this a second time. The waiting was more difficult than the surgery. I have gotten along very well. I was really dreading it, but it wasn't as painful as I had imagined.
  • anitap1
    anitap1 Member Posts: 25
    #26
    bakerette said:

    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?

    I waited about that long
    I waited about that long before I had surgery. My cancer had grown just a little. There was no cancer in the other breast. I decided to have both so I didn't have to worry as much and so I wouldn't have to go through this a second time. The waiting was more difficult than the surgery. I have gotten along very well. I was really dreading it, but it wasn't as painful as I had imagined.
  • anitap1
    anitap1 Member Posts: 25
    #27
    bakerette said:

    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?

    I waited about that long
    I waited about that long before I had surgery. My cancer had grown just a little. There was no cancer in the other breast. I decided to have both so I didn't have to worry as much and so I wouldn't have to go through this a second time. The waiting was more difficult than the surgery. I have gotten along very well. I was really dreading it, but it wasn't as painful as I had imagined.
  • cahjah75
    cahjah75 Member Posts: 2,631
    #28
    anitap1 said:

    I think that talking about
    I think that talking about it makes it easier to go through. I opted not to have the reconstructive surgery. If I was a younger woman, I might go through it. At 63, I don't need them. My husband went with me to talk to the plastic surgeon and when he described what was involved, my hubby and I just looked at each other and shook our heads. Those that come in the box are fine for me. In fact, it has been wonderful not even wearing a bra for these two weeks since surgery. The nurse told me to do what I felt I needed and not consider anyone else. With this decision, we do what we feel we need. We are the ones living with it.

    Anita welcome to the bc site
    Anita welcome to the bc site. I was just diagnosed 5/24. I had Invasive Lobular Carcinoma (6.8cm) in the right breast and LCIS in the left breast. Because of family history I had bilateral mastectomies done 6/22. I came home from the hospital 6/24 and I'm doing well. Occasional pinching where the drain sites are. I tested estrogen/progesterone + but HER2 -. Because of the size of my tumor I need both chemo & rads. I see my surgeon 6/29 and hopefully the drains will be removed. He put bandages under a very tight looking sports bra and I purchased camisoles at Boutique at cancer center that have velcro pockets to hold the drains. Very feminine looking. Good thing since I'll have to wear 24/7 for awhile. I am 61 and spoke with plastic surgeon before surgery. I haven't made a final decision but am leaning towards no reconstruction. I think I can live with the boxed variety too! lol

    The bc network has given me so much knowledge and perspective. The ladies and a few hubbies have been so informative about what they've gone through. There is no embarrasment here either. Ask whatever pops into your mind. We are all a support group within ourselves. Best of luck to you and visit here often!
    Char
  • slynch
    slynch Member Posts: 82
    #29
    Welcome
    I was diagnosed in March and had double mastectomy in April. Found this site before my surgery and cannot tell you how much it helped me before the surgery. Got lots of valuable information from people who had been there. For me the drains were the worst. I did opt for reconstruction and the expanders are a little uncomfortable but it gets a little easier each day. I am back to all of my old activities but can still tell when I have done too much so don't push yourself. Sorry for the reason you are here but you will learn alot on this site. Hope your test has good results.
  • anitap1
    anitap1 Member Posts: 25
    #30
    slynch said:

    Welcome
    I was diagnosed in March and had double mastectomy in April. Found this site before my surgery and cannot tell you how much it helped me before the surgery. Got lots of valuable information from people who had been there. For me the drains were the worst. I did opt for reconstruction and the expanders are a little uncomfortable but it gets a little easier each day. I am back to all of my old activities but can still tell when I have done too much so don't push yourself. Sorry for the reason you are here but you will learn alot on this site. Hope your test has good results.

    Thanks
    Thanks; it has been 15 days since surgery and I still have the drains. I am anxious for the FISH test results. Now, since the hospital was not punctual sending the tissue to the lab, I have to wait until July 6. I am not pushing myself. I am walking some on the treadmill but not a lot. Thanks for the encouragement.
  • anitap1
    anitap1 Member Posts: 25
    #31
    cahjah75 said:

    Anita welcome to the bc site
    Anita welcome to the bc site. I was just diagnosed 5/24. I had Invasive Lobular Carcinoma (6.8cm) in the right breast and LCIS in the left breast. Because of family history I had bilateral mastectomies done 6/22. I came home from the hospital 6/24 and I'm doing well. Occasional pinching where the drain sites are. I tested estrogen/progesterone + but HER2 -. Because of the size of my tumor I need both chemo & rads. I see my surgeon 6/29 and hopefully the drains will be removed. He put bandages under a very tight looking sports bra and I purchased camisoles at Boutique at cancer center that have velcro pockets to hold the drains. Very feminine looking. Good thing since I'll have to wear 24/7 for awhile. I am 61 and spoke with plastic surgeon before surgery. I haven't made a final decision but am leaning towards no reconstruction. I think I can live with the boxed variety too! lol

    The bc network has given me so much knowledge and perspective. The ladies and a few hubbies have been so informative about what they've gone through. There is no embarrasment here either. Ask whatever pops into your mind. We are all a support group within ourselves. Best of luck to you and visit here often!
    Char

    Thanks Char
    Thank you. You had your surgery more recently than I did. I had a friend who told me about the apron for the drains. I wear it under my shirt, but I should wear it on the outside and give free advertisement for our local lumber company. :-) The plastic surgeon said that I can change my mind down the road, but I really don't think I will. Good luck to you. I will be back often.
  • jk1952
    jk1952 Member Posts: 613
    #32
    anitap1 said:

    Thanks
    Thanks; it has been 15 days since surgery and I still have the drains. I am anxious for the FISH test results. Now, since the hospital was not punctual sending the tissue to the lab, I have to wait until July 6. I am not pushing myself. I am walking some on the treadmill but not a lot. Thanks for the encouragement.

    Hi Anita and welcome to the

    Hi Anita and welcome to the group that no one ever wants to join. I noticed on another post that you are originally from SW Florida. We own property on Pine Island, where we hope to build someday. Also, we bought a sailboat which will be our home most of the year after I retire in two years, and that was docked in Bradenton for the winter. Were you near either of those areas?

    I had a bilateral last year with reconstruction using abdominal tissue (DIEP), and I'm very happy that I chose the reconstruction route. I'm 58, so almost as old as you. But, it is a personal decision, so whatever gives peace is the right thing to do. Hope you don't need chemo...I know how draining the waiting is.

    Joyce
  • anitap1
    anitap1 Member Posts: 25
    #33
    jk1952 said:

    Hi Anita and welcome to the

    Hi Anita and welcome to the group that no one ever wants to join. I noticed on another post that you are originally from SW Florida. We own property on Pine Island, where we hope to build someday. Also, we bought a sailboat which will be our home most of the year after I retire in two years, and that was docked in Bradenton for the winter. Were you near either of those areas?

    I had a bilateral last year with reconstruction using abdominal tissue (DIEP), and I'm very happy that I chose the reconstruction route. I'm 58, so almost as old as you. But, it is a personal decision, so whatever gives peace is the right thing to do. Hope you don't need chemo...I know how draining the waiting is.

    Joyce

    SW Florida
    We lived more inland. I was born and raised in Clewiston, FL and after 25 years, moved to LaBelle. They are in the same county. My son's in laws live on Pine Island. Our son and his family live in Lehigh which is almost connected with Ft. Myers. The doctor talked to me about moving the tissue from my stomach area, but I had too large of a fat roll so he would have to do the expanders. I thought I might get slimmer at the same time. :-) I just really don't want the extra surgery. I have done so well with the mastectomy that I don't want to have anything else which is not necessary. It doesn't bother me and my husband is fine with it. If I find later that I want to have the expanders, I can still do it. The doctor said my insurance will pay for it years from now. I hope you enjoy retirement in Florida. I just don't like the heat. It is hot in Tennessee right now but we don't have as long of a hot period. I joke about SW Florida and say that they have summer and summerette. This past winter was colder for them than norm. I enjoy the seasons. I had never seen seasons.
  • jk1952
    jk1952 Member Posts: 613
    #34
    anitap1 said:

    SW Florida
    We lived more inland. I was born and raised in Clewiston, FL and after 25 years, moved to LaBelle. They are in the same county. My son's in laws live on Pine Island. Our son and his family live in Lehigh which is almost connected with Ft. Myers. The doctor talked to me about moving the tissue from my stomach area, but I had too large of a fat roll so he would have to do the expanders. I thought I might get slimmer at the same time. :-) I just really don't want the extra surgery. I have done so well with the mastectomy that I don't want to have anything else which is not necessary. It doesn't bother me and my husband is fine with it. If I find later that I want to have the expanders, I can still do it. The doctor said my insurance will pay for it years from now. I hope you enjoy retirement in Florida. I just don't like the heat. It is hot in Tennessee right now but we don't have as long of a hot period. I joke about SW Florida and say that they have summer and summerette. This past winter was colder for them than norm. I enjoy the seasons. I had never seen seasons.

    Anita, we went to the Sugar

    Anita, we went to the Sugar Festival in Clewiston a few years ago, so I know exactly where Clewiston and LaBelle are. We wanted to spend a few days in FL, and there were some singers that we enjoy that were going to be at the festival, so we decided to go to Clewiston for a couple days of the trip. We enjoyed our time there.

    We spent three weeks in Newfoundland and Labrador last summer, and there was snow in August in Labrador City: one of the motel employees (motel named Two Seasons Inn) said it was named for 'this winter and last winter'. Pretty much the opposite of your saying about FL.

    Hope your recovery continues to go well and that you make sure to rest as much as you need.

    Joyce
  • anitap1
    anitap1 Member Posts: 25
    #35
    jk1952 said:

    Anita, we went to the Sugar

    Anita, we went to the Sugar Festival in Clewiston a few years ago, so I know exactly where Clewiston and LaBelle are. We wanted to spend a few days in FL, and there were some singers that we enjoy that were going to be at the festival, so we decided to go to Clewiston for a couple days of the trip. We enjoyed our time there.

    We spent three weeks in Newfoundland and Labrador last summer, and there was snow in August in Labrador City: one of the motel employees (motel named Two Seasons Inn) said it was named for 'this winter and last winter'. Pretty much the opposite of your saying about FL.

    Hope your recovery continues to go well and that you make sure to rest as much as you need.

    Joyce

    Sugar Festival
    Joyce, the Sugar Festival has really grown since we left Florida. I will be there (Lord willing) this next year. We are having a class reunion during the Festival. The Festival in LaBelle is the Swamp Cabbage Festival. The Swamp Cabbage Festival is one of the biggest in the small towns. Thanks, between my husband and mother watching me, I am getting plenty of rest. I am anxiously awaiting the FISH results so I will know if I have to have chemo.
    Anita
  • Megan M
    Megan M Member Posts: 3,000
    #36
    anitap1 said:

    I hope my FISH test comes
    I hope my FISH test comes back negative. If not, I will have to have the chemo. I go to the oncologist on Monday.

    I am praying that your FISH
    I am praying that your FISH test comes back negative for you! Let us know what you find out Monday! Good luck!

    Hugs, Megan
  • Christine Louise
    Christine Louise Member Posts: 426 Member
    #37
    bakerette said:

    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?

    bakerette, I don't know if you'll see this
    Hi and welcome. I had a bilateral and my lymph nodes were clear. Based on a test called OncotypeDX, I chose to have chemo. The test tells what the chance is that the cancer will return if you don't have chemo. I emphasize that, in my case, I had the choice.

    You could start a new discussion topic and people will respond to your concerns and questions. I'm afraid your post is kind of buried in the middle of this thread.
  • jnl
    jnl Member Posts: 3,869 Member
    #38
    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

    Big congrats on clear nodes!
    Big congrats on clear nodes! That is wonderful! Good luck to you!


    Hugs, Leeza
  • SamuraiMom
    SamuraiMom Member Posts: 295
    #39
    Rolling Out the Pink Carpet
    Hi!

    I opted for a double and had mine on 9-9-09 and never looked back!

    Just finishing up reconstruction with my last step of tatoos coming in about two months.

    Welcome!!!

    xxoo,
    SamuraiMom
  • Angie2U
    Angie2U Member Posts: 2,991
    #40
    anitap1 said:

    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.

    Hi anitap! The waiting is
    Hi anitap! The waiting is the hard part, and, unfortunately, we have to go thru it.

    Hoping you get your drains out soon. They are awful

    Wishing you good luck!
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #41
    anitap1 said:

    Thanks
    Thanks; it has been 15 days since surgery and I still have the drains. I am anxious for the FISH test results. Now, since the hospital was not punctual sending the tissue to the lab, I have to wait until July 6. I am not pushing myself. I am walking some on the treadmill but not a lot. Thanks for the encouragement.

    thank you!
    Thank you for sharing your information on this thread. I have cancer in my right breast, but have also opted for a double mastectomy, and having expanders put in to start reconstruction immediately. I'm just waiting on the call back from my surgeon's office -they're coordinating schedules with the plastic surgeon so hopefully I will know today when I have my surgery. It sounds like you're doing very well with your recovery, and since I'm a big old baby, that's encouraging to me, I am a little bit scared of all the down time, I have a 9 year old and a 19 month old that I have to chase after! The apron is a good idea, too. Just wanted to say thanks again for sharing, when you hear from someone who has just gone through what you're about to go through, it makes it a little less scary!
    *hugs*
    Heather

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