Double masectomy question

Boppy_of_6
Boppy_of_6 Member Posts: 1,138
edited March 2014 in Breast Cancer #1
I had a lumpectomy so I need a question answered on masectomy. I have a friend, she is 51, that was dx'd about a month ago with stage 1 IDC.No nodes involved. She has opted for a complete masectomy. She is really small so the thought was a lumpectomy would really disfigure her. She is small all over so will prob go with implants at a later date. She met with the surgeon today. They are saying no rads, no chemo and no follow up with Onc. I do not know her status ER,PR or HER2. I have ask but never got an answer.I am just concerned about the no follow up with an Onc. Is this normal? Ok I know there is no real normal but it just worries me. God Bless
(((Hugs))) Janice

Comments

  • sweetvickid
    sweetvickid Member Posts: 459 Member
    #2
    I wouldn't listen to the surgeon
    She needs to get back with her oncologist and I personally wouldn't use that surgeon.
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #3
    sweetvickid said:

    I wouldn't listen to the surgeon
    She needs to get back with her oncologist and I personally wouldn't use that surgeon.

    Thank you
    I was thinking the same thing but wanted some more input before I said anything. It just did not sound right to me. Thanks God Bless
    (((Hugs))) Janice
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #4
    Boppy_of_6 said:

    Thank you
    I was thinking the same thing but wanted some more input before I said anything. It just did not sound right to me. Thanks God Bless
    (((Hugs))) Janice

    You're right Janice, this
    You're right Janice, this doesn't sound right. Did her surgeon tell her that a lumpectomy would disfigure her? Does she understand fully what a mastectomy is? There are lots of small breasted women that choose a lumpectomy with rads and are happy that they did. And, no follow-up visits with her oncologist is really not right.

    Sue :)
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #5
    I don't think I'd feel
    I don't think I'd feel comfortable with that either. But, until she has the mast and the final pathology is back, how can treatment even be discussed?
  • Alexis F
    Alexis F Member Posts: 3,598
    #6
    MyTurnNow said:

    I don't think I'd feel
    I don't think I'd feel comfortable with that either. But, until she has the mast and the final pathology is back, how can treatment even be discussed?

    No, I wouldn't be
    No, I wouldn't be comfortable with either doctor, the surgeon or oncologist. MyTurnNow is right, you can't know anything for sure until you get that final pathology report. Can she get 2nd opinions?


    Lex
  • Rague
    Rague Member Posts: 3,653 Member
    #7
    I'd be looking for a different Doctor
    That doesn't make sense to me at all.

    I had a single mod. rad. mast. and am IBC so there are different protocol but to do bilateral mast. and there be no follow up at all doesn't make sense to at all. Definately need at least a second opinion. I know I'll be seeing my Chemo Dr at least annually forever (still on 6 month schedule).

    Did she ask about doing/starting reconstruction at the time of surgery? It can often be done then.
  • Rague
    Rague Member Posts: 3,653 Member
    #8
    MyTurnNow said:

    I don't think I'd feel
    I don't think I'd feel comfortable with that either. But, until she has the mast and the final pathology is back, how can treatment even be discussed?

    Treatment can be discussed -
    Treatment can be discussed - just not finalized. I had A/C before surgery but knew that there would be more Chemo after - just had to wait til after surgery to know the exact treatment. Same with Rads - I knew there would be rads just didn't have a firm decision form the Dr on the number.

    Susan
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #9
    Rague said:

    I'd be looking for a different Doctor
    That doesn't make sense to me at all.

    I had a single mod. rad. mast. and am IBC so there are different protocol but to do bilateral mast. and there be no follow up at all doesn't make sense to at all. Definately need at least a second opinion. I know I'll be seeing my Chemo Dr at least annually forever (still on 6 month schedule).

    Did she ask about doing/starting reconstruction at the time of surgery? It can often be done then.

    Frustrated
    I am frustrated with her Dr. My friend is under the impression that she will have no breast tissue left so no chance of the cancer returning.She thinks they gave her papers with her ER PR status on them but is not sure, my surgeon and Onc. both went over this with me personally not just papers with info on it.She has not heard of HER2. I am praying that the Onc. will do more follow up on this and get my friends attention. Her thing right now is she just wants surgery to be over and done. She is really stubborn and not listening to me. I understand wanting to get surgery over but still you have to have a surgeon that knows what they are doing. As for reconstruction they have told her she does not have enough excess skin to pull for them to do this. I know nothing about the recon process but she is very little and skinny. I offered skin and fat but to bad for me it doesn't work like that lol. Thank you all for the input. God Bless
    (((Hugs))) Janice
    I will keep you posted
  • linpsu
    linpsu Member Posts: 747
    #10
    Mastectomy with recurrence
    I had a left mastectomy 2 years ago (Stage 0 DCIS) with no chemo or radiation afterwards. Dr. figured once breast was gone, there was no chance of it coming back so no need for chemo or radiation. I did have reconstruction. But then the cancer reoccured last Feb. at Stage 3C (in same breast that was removed). She said that it is very rare, but some cancer cells can remain in skin that is left from surgery and that is what started to grow again. So I hate to say this, but it is possible that mastectomy alone will not get rid of the cancer. I am triple negative - don't know if that made a difference or not.
  • SamuraiMom
    SamuraiMom Member Posts: 295
    #11
    follow up
    Hi Boppy,

    I was the same as your friend and opted for a double mastectomy. My sentinel node was clear so now it is just a reconstruction game.

    My understanding is it all depends on the sentinel node status as to what each person's gameplan is.

    Good luck to your friend.

    xxoo,
    SamuraiMom
  • PinkPearl
    PinkPearl Member Posts: 280
    #12
    just random thoughts
    I did not meet with an onc. until after my surgery but I think it was due to the size of the mass. I don't know how they know her node involvement until after surgery. It is my understanding that is not known until the pathology report comes back after surgery. Also be sure she knows what is involved in a double mastectomy and reconstruction. She might think is is like a breast enhancement and it is much more than that with the chest wall muscles holding the tissue expanders in place and so on. I was in a similar place with people saying no chemo but thank God, my onc. ordered a Oncotype DX and my reoccurance score was too high to skip chemo. Breast cancer can be very sneaky. It is an expensive test and I don't know how her insurance will look at it. I chose a double mx because of family history and losing my sister to this horrible disease.
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #13
    get another BS/PS
    Like everyone else has said, they cannot be sure on the final treatment until they get in there and look at the breast tissue and the sentinel node. I would run, not walk to find another breast surgeon. It doesn't sound right.

    I'm thin, 5'5" 109# and there were able to do reconstruction on me. It is possible. I had a skin-sparing MX. My understanding in MY CASE was that if I hadn't had a skin-sparing MX, reconstruction would have been very difficult to do later because I would not have had the extra skin. The fact they haven't even mentioned this to her is fishy at best.
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #14
    Dawne.Hope said:

    get another BS/PS
    Like everyone else has said, they cannot be sure on the final treatment until they get in there and look at the breast tissue and the sentinel node. I would run, not walk to find another breast surgeon. It doesn't sound right.

    I'm thin, 5'5" 109# and there were able to do reconstruction on me. It is possible. I had a skin-sparing MX. My understanding in MY CASE was that if I hadn't had a skin-sparing MX, reconstruction would have been very difficult to do later because I would not have had the extra skin. The fact they haven't even mentioned this to her is fishy at best.

    I just don't feel good about
    I just don't feel good about it. They did a node biopsy last week and took 3 nodes and all were clear. The surgeon wanted this done before final decision on what type of surgery. I am not sure of any of the reconstruction stuff I just know they told her she was not a good candidate because there was no excess skin on her and her breast are really small. I just feel like there is to much stuff they are not telling her. God Bless
    (((Hugs))) Janice
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #15
    Boppy_of_6 said:

    I just don't feel good about
    I just don't feel good about it. They did a node biopsy last week and took 3 nodes and all were clear. The surgeon wanted this done before final decision on what type of surgery. I am not sure of any of the reconstruction stuff I just know they told her she was not a good candidate because there was no excess skin on her and her breast are really small. I just feel like there is to much stuff they are not telling her. God Bless
    (((Hugs))) Janice

    Janice, if your friend
    Janice, if your friend really wants reconstruction, I would say get another set of docs. I know that I was told after my bilateral that the one thing I needed to continue to do is my monthly breast check. Even though my breasts were removed there is still approximately 10% of the breast tissue left. I mainly check around the implants and up to the clavical. I would encourage her to talk with ladies that have been there. If not this particular site, there are others. I wish her well and you are a good friend to help her navigate her way.
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #16
    MyTurnNow said:

    Janice, if your friend
    Janice, if your friend really wants reconstruction, I would say get another set of docs. I know that I was told after my bilateral that the one thing I needed to continue to do is my monthly breast check. Even though my breasts were removed there is still approximately 10% of the breast tissue left. I mainly check around the implants and up to the clavical. I would encourage her to talk with ladies that have been there. If not this particular site, there are others. I wish her well and you are a good friend to help her navigate her way.

    lipsu .. I am so sorry ..
    This just sound so off the wall. If I had insurance, I would start from scratch, find a new doctor .. -- Breast Cancer Specialist if available === make an appointment -- with this new doctor, before moving forward ..

    Sounds odd .. and maybe what is done with Stage 0 'victim', Yes, I said victims, as we are all victims of this dreaded disease. Please have her read ..Lipsu post ..


    Strength and Courage,

    Vicki Sam
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #17
    Boppy_of_6 said:

    Frustrated
    I am frustrated with her Dr. My friend is under the impression that she will have no breast tissue left so no chance of the cancer returning.She thinks they gave her papers with her ER PR status on them but is not sure, my surgeon and Onc. both went over this with me personally not just papers with info on it.She has not heard of HER2. I am praying that the Onc. will do more follow up on this and get my friends attention. Her thing right now is she just wants surgery to be over and done. She is really stubborn and not listening to me. I understand wanting to get surgery over but still you have to have a surgeon that knows what they are doing. As for reconstruction they have told her she does not have enough excess skin to pull for them to do this. I know nothing about the recon process but she is very little and skinny. I offered skin and fat but to bad for me it doesn't work like that lol. Thank you all for the input. God Bless
    (((Hugs))) Janice
    I will keep you posted

    Even with a mastectomy, you
    Even with a mastectomy, you have breast tissue left. They can never get all of it. A lumpectomy with rads is equal to a mastectomy in recurrence and survival rate.

    Good luck to your friend.


    Jan

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