Thinking Double Mast

rrogers34
rrogers34 Member Posts: 135
edited March 2014 in Breast Cancer #1
It's been awhile since I have posted, but I do check in. I pray everyone had a good Christmas and New Year. I see so many new names and that makes me sad, however you have come to a great place for advice, comfort and support. For those of you who dont know me, I was diagnosed with IDC stage 1 her2 positive er+ and pr+. Had lumpectomy in Dec 09, went through 6 rounds of Chemo )Carboplatin, Taxotere and Herceptin. I just had my last round of Hercpeptin Dec 30th. My Port was taken out in Dec as well. I have had one mammo and it came back fine. (However the mammo came back fine when I had cancer). I had gone to my obgyn and we found a lump in the very bottom of my left breast, he sent me to a breast surgeon. I wanted a Mastectomy but the Dr and my hubby talked me out of it. My Original Surgeon did not want me to have a re-excision, said it wasnt nec. I was scheduled for Surg on a Friday, get a call on Monday saying the surgeon would be out for about 6 weeks. Thought she was sick. I had to find another dr which I did. Long story made short, I had a re-excision in May, Lost my Dad the day after fathers day and find out that my Original Surgeon was let go as well as her husband. Have no idea why? My effected breast is larger than the other. I have what they say is a seroma, but the original Surgeon said mu original lump was a fibroidadenoma. Had I not kept up with checking it, who knows. I had actually had cancer from Jan 2009 until November 2009 and didn't know it. While under going FNB and ultrashounds. Scary. I went to a PS thinking about a breast reduction. He said, if they find "any" microscopic cancer it would be auto mastectomy. I am considering just getting them both off and do a reconstruction. Any advise? Gotta go am at work,

Comments

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #2
    wow...sorry about your
    wow...sorry about your changing Drs and all you have gone through. I went to a general surgeon-when I went back for my follow up said leaving...I wish I had known prior-I would have found someone else...but he did good job.

    Also I had to wait 5 wks (and i just wanted it over with) since he was on vacation.
    Sorry ,also, about the lose of your dad.
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #3
    It is such a difficult and
    It is such a difficult and individual decision. All I can say is trust your gut. Back in 1987, I had Stage 3 A and was told I had no choice but to have a mastectomy (large tumor, small breast). I asked then about bilateral mastectomies (I wanted both off) and the docs said no because my chance of having a recurrence was small.

    Fast forward about 8 years and 2 of my 3 sisters diagnosed with breast cancer and the docs were then telling me I needed to get the other breast off. So, in about 1995, I had the second mastectomy and reconstruction.

    Personally, if I had to do it over again, I would get both off and then have reconstruction. Doing one at a time, my reconstructions are definitely lopsided. That is my story, but all of us are soooo different!
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #4
    Hi,
    I had cancer in my right
    Hi,
    I had cancer in my right breast and chose to have bilateral mastectomies. I was 34 when diagnosed. I had them both removed because 1-having bilateral & reconstruction would give me the best, most even appearance, and 2- i wanted to do everything I could in MY power to prevent it from ever coming back. Better to do too much than not enough. Best of luck to you in your decision :)
    *hugs*
    Heather
  • mimivac
    mimivac Member Posts: 2,143 Member
    #5
    Hi
    Nice to see you again. I don't post as much anymore either. The decision you are making is very personal. I agree to go with your gut. I had a lumpectomy with grade 3, triple negative breast cancer diagnosed at age 34. I am very happy with my decision. I didn't think a mastectomy was necessary in my case and I was advised by my doctors that a lumpectomy was perfectly adequate. There is no decrease in survival rates when going with lumpectomy (plus radiation) versus mastectomy and it was important for me to be as non-invasive as possible with my surgery decisions. Choosing a mastectomy is also a perfectly viable decision. Take some time to think about what would be right for you, medically, physically, AND emotionally. Good luck!

    Mimi
  • lynn1950
    lynn1950 Member Posts: 2,570
    #6
    As Cynthia says, follow your
    As Cynthia says, follow your gut. I had a bilateral mastectomy in 2007 and don't regret it for a minute. I haven't had reconstruction yet, but if I ever do I hope that it will be even, though I'm not sure how easy that will be since one side had radiation and one didn't. I don't wear a prosethesis, but that's my choice. I was small breasted to begin with. As Heather says, I wanted to do everything in my power to stay the beast. Also, I didn't want to go through the whole ordeal a second time, if there was any way I could help it.

    So, there isn't one "right" answer. The best answer for you will come from your heart. xoxoxox Lynn
  • rrogers34
    rrogers34 Member Posts: 135
    #7
    lynn1950 said:

    As Cynthia says, follow your
    As Cynthia says, follow your gut. I had a bilateral mastectomy in 2007 and don't regret it for a minute. I haven't had reconstruction yet, but if I ever do I hope that it will be even, though I'm not sure how easy that will be since one side had radiation and one didn't. I don't wear a prosethesis, but that's my choice. I was small breasted to begin with. As Heather says, I wanted to do everything in my power to stay the beast. Also, I didn't want to go through the whole ordeal a second time, if there was any way I could help it.

    So, there isn't one "right" answer. The best answer for you will come from your heart. xoxoxox Lynn

    Thank you
    Well first I want to thank everyone for all of the encouraging words. The reason I am seriously considering this route, is the PS said they test the tissue they take out when they do a breast reduction, if they find any microscopic cancer then it is automatice mastectomy on my left side. I guess my thought it, why not just do it and get it over with. The new Doctor I found was on the news as the Drs choice of Drs, which makes me feel really good. I am a 36DDD and very pendulous in other words really saggy. Always have been. I'm not worried about loosing my boobs. Really? I'm more scared of the surgery, recovery, the expanders, and how many surgeries do you have go through? I know this will upset many but first I have to quit smoking. Can you believe that...... I still smoke.... is that nuts or what? I really want to say so much to my newer Pink sisters and to those who are still in treatment or had a recurrence. I think about you all everyday. I wish we could all meet like on a Pink sisters retreat. when I can I will post an updated picture of my hair. It is growning in THICK and curly. Not alot of length. Maybe a little over an inch. I feel like a chia pet...... LOL.......Will post more when I can.

    Love you all........... Oh, I got a Tee Shirt for Christmas that says, I fought like a girl and I won. LOVE IT although I have not gotten the "official word" that I am dancing with NED.
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #8
    rrogers34 said:

    Thank you
    Well first I want to thank everyone for all of the encouraging words. The reason I am seriously considering this route, is the PS said they test the tissue they take out when they do a breast reduction, if they find any microscopic cancer then it is automatice mastectomy on my left side. I guess my thought it, why not just do it and get it over with. The new Doctor I found was on the news as the Drs choice of Drs, which makes me feel really good. I am a 36DDD and very pendulous in other words really saggy. Always have been. I'm not worried about loosing my boobs. Really? I'm more scared of the surgery, recovery, the expanders, and how many surgeries do you have go through? I know this will upset many but first I have to quit smoking. Can you believe that...... I still smoke.... is that nuts or what? I really want to say so much to my newer Pink sisters and to those who are still in treatment or had a recurrence. I think about you all everyday. I wish we could all meet like on a Pink sisters retreat. when I can I will post an updated picture of my hair. It is growning in THICK and curly. Not alot of length. Maybe a little over an inch. I feel like a chia pet...... LOL.......Will post more when I can.

    Love you all........... Oh, I got a Tee Shirt for Christmas that says, I fought like a girl and I won. LOVE IT although I have not gotten the "official word" that I am dancing with NED.

    very personal decision
    Just wanted to add ... that if you choose MX and reconstructive surgery, no PS will do the work if you smoke. They'll want you to stop smoking at least six weeks before you have the surgery and not smoke at all during the whole process.

    The whole reconstruction process was longer, more arduous, more painful than I thought it was going to be. You'll have no feeling in the 'foobs.'

    As everyone else has said, do what you feel in your gut.

    Take care!
    d
  • Chickadee1955
    Chickadee1955 Member Posts: 356 Member
    #9
    Dawne.Hope said:

    very personal decision
    Just wanted to add ... that if you choose MX and reconstructive surgery, no PS will do the work if you smoke. They'll want you to stop smoking at least six weeks before you have the surgery and not smoke at all during the whole process.

    The whole reconstruction process was longer, more arduous, more painful than I thought it was going to be. You'll have no feeling in the 'foobs.'

    As everyone else has said, do what you feel in your gut.

    Take care!
    d

    I was diagnosed with IDC
    I was diagnosed with IDC estrogen/progesterin + HER-. Stage 1, no nodes involved. Although I was offered a lumpectomy, I opted for bilateral mastectomy for many of the reasons others have already posted.

    Had DX in April 2010 and chose delayed reconstruction. I just got my implant exchange last week. I had the expanders put in November 30th and did hyper-speed expansion so that my insurance would be paying 100%. If I went the traditional 4-6 months of slow expansion I would have had to pay my new calender year $1000 deductible and then 20% of any covered charges. PS put in the expanders with 350cc's. The first 'fill'was just one week after the expanders were put in and I thought I would die from the pain. It was worse than any of the surgeries but only lasted a few days. I had a 2nd small fill to even out the size and then let it lie for a couple of weeks before the implant exchange surgery. Very quick. PS says it will be a year before we will see exactly how the implants will 'settle' and then I can think about nipples.

    Each of us has to choose our own path. I kept asking my doctors why the least knowledgeable person in the room, i.e., ME, had to make all these hard decisions! Good luck, you'll do what's right for you. Once you've made up your mind, don't look back or second guess yourself.

    Chickadee
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #10
    rrogers34 said:

    Thank you
    Well first I want to thank everyone for all of the encouraging words. The reason I am seriously considering this route, is the PS said they test the tissue they take out when they do a breast reduction, if they find any microscopic cancer then it is automatice mastectomy on my left side. I guess my thought it, why not just do it and get it over with. The new Doctor I found was on the news as the Drs choice of Drs, which makes me feel really good. I am a 36DDD and very pendulous in other words really saggy. Always have been. I'm not worried about loosing my boobs. Really? I'm more scared of the surgery, recovery, the expanders, and how many surgeries do you have go through? I know this will upset many but first I have to quit smoking. Can you believe that...... I still smoke.... is that nuts or what? I really want to say so much to my newer Pink sisters and to those who are still in treatment or had a recurrence. I think about you all everyday. I wish we could all meet like on a Pink sisters retreat. when I can I will post an updated picture of my hair. It is growning in THICK and curly. Not alot of length. Maybe a little over an inch. I feel like a chia pet...... LOL.......Will post more when I can.

    Love you all........... Oh, I got a Tee Shirt for Christmas that says, I fought like a girl and I won. LOVE IT although I have not gotten the "official word" that I am dancing with NED.

    expanders & surgeries
    Have you tried using anything to help you quit? I had quit before I got pregnant with my daughter who's now 2, and after I had her i started smoking casually again, when we went out, or when i was around other people who smoked. I used the nicotine patch to quit for good & it really helped the cravings. It got to where I'd smoke 2-3 cigarettes A WEEK but when I had that craving i needed one so bad -the patch helped me through the cravings & i only used it for about 5 days. Might be worth it to try! My mom quit using Chantix, also.
    For me, the expanders didn't get painful until towards the end. First off - the biggest size implant you can get is 800cc. It seems large but I was a 38D when i was diagnosed, and my implants are big around, but don't project as far out, as my boobs did before. I told my plastic surgeon from the get go that I wanted "the biggest boobs he could give me" - they preserved as much of my skin as they safely could during my surgery since they knew I would be going large, that way my expansions weren't so bad. I got 100cc every 2 weeks on my fills-they didn't hurt getting them, once I got up to about 650ccs is when they started getting painful, i just had 1 fill that was extremely painful & after that we went down to 50ccs and that was more tolerable & painless. I just had the 2 surgeries -my mastectomy & they placed the expanders at the same time, and after my expansions were done I had my exchange surgery -which was not bad at all. Went home that night, had 1 day of really bad pain, then it was much easier. No drains for the exchange either! I still have to get my nipples reconstructed but i think that is outpatient as well. And, although I don't have the same sensation, my entire boobs aren't numb. Just along the scars. Maybe because they preserved alot of my skin, i don't know. I don't regret my decision at all! Don't beat yourself up about the smoking - you do need to quit to have the surgery but don't beat yourself up over it!
    *hugs*
    Heather
  • jnl
    jnl Member Posts: 3,869 Member
    #11
    CypressCynthia said:

    It is such a difficult and
    It is such a difficult and individual decision. All I can say is trust your gut. Back in 1987, I had Stage 3 A and was told I had no choice but to have a mastectomy (large tumor, small breast). I asked then about bilateral mastectomies (I wanted both off) and the docs said no because my chance of having a recurrence was small.

    Fast forward about 8 years and 2 of my 3 sisters diagnosed with breast cancer and the docs were then telling me I needed to get the other breast off. So, in about 1995, I had the second mastectomy and reconstruction.

    Personally, if I had to do it over again, I would get both off and then have reconstruction. Doing one at a time, my reconstructions are definitely lopsided. That is my story, but all of us are soooo different!

    I had a lumpectomy, and, am
    I had a lumpectomy, and, am so thankful that I could. Your surgery is your choice and your decision. Do whatever is best for you, and, you only.


    Good luck,

    Leeza
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #12
    Dawne.Hope said:

    very personal decision
    Just wanted to add ... that if you choose MX and reconstructive surgery, no PS will do the work if you smoke. They'll want you to stop smoking at least six weeks before you have the surgery and not smoke at all during the whole process.

    The whole reconstruction process was longer, more arduous, more painful than I thought it was going to be. You'll have no feeling in the 'foobs.'

    As everyone else has said, do what you feel in your gut.

    Take care!
    d

    i dont smoke but the plastic
    i dont smoke but the plastic surgeon i saw said that it is not when you quit smoking but if there is any nicotine in your system. she was concerned with me even though my significant other smokes but has always smoked outside since we met last june. she said one woman quit smoking a month before her reconctrustion, she did a nicotine blood level test and cancelled her surgery because she had nicotine in her system.
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #13
    mimivac said:

    Hi
    Nice to see you again. I don't post as much anymore either. The decision you are making is very personal. I agree to go with your gut. I had a lumpectomy with grade 3, triple negative breast cancer diagnosed at age 34. I am very happy with my decision. I didn't think a mastectomy was necessary in my case and I was advised by my doctors that a lumpectomy was perfectly adequate. There is no decrease in survival rates when going with lumpectomy (plus radiation) versus mastectomy and it was important for me to be as non-invasive as possible with my surgery decisions. Choosing a mastectomy is also a perfectly viable decision. Take some time to think about what would be right for you, medically, physically, AND emotionally. Good luck!

    Mimi

    My oncologist recommended a
    My oncologist recommended a lumpectomy with rads, which is what I had. I also wanted the least invasive and a lumpectomy with rads is equivalent in recurrence and life expectancy as having a mastectomy. Wishing you good luck.


    Debby

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