Recurrance in reconstructed breast

Barb A
Barb A Member Posts: 123
edited March 2014 in Breast Cancer #1
This post is in reply to a request from New Flower to relate my experience with a recurrance in my reconstructed breast.

I was diagnosed in January 2001 with DCIS, stage 0-1 in my right breast, age 37. I felt a lump and went to my doctor. My doctor said I was too young for BC and should wait until I was 40 for a mammo. After a couple of months, I went back and insisted on the mammo. The lump was nothing, but I had widespread calcifications. I chose to have a mastectomy as the calcifications were wide spread on the upper half of my breast. A lumpectomy would have left the breast disfigured to the point I wouldn't have been able to wear a prostices properly. I had a tram-flap reconstruction at the same time as the mastectomy. I took tamoxifen for 5 years even though I had a complete hysterectomy in 2002.

In October 2007, I had a stab of pain on the side of the reconstructed breast. I put my hand there and felt a lump. I had had a breast exam by my doctor in April and she hadn't felt it. I wasn't doing my own exams every month, but I know it was at least July or August and I hadn't felt it. It was definately obvious by this time.

I had a biopsy two days later and was diagnosed with IDC, stage 3 (very aggressive). I had a lumpectomy, chemo and radiation in 2008. I do a BSE at least once a month on both breasts and I insist on a mammogram on the reconstructed side now.

My surgen and oncologist disagree if it was a recurrance or new cancer. It could have been a missed or dropped cell during surgery or a new cancer. I'll never know, but I caught it early and am doing well today.

So, my advice even if you have had a mastectomy - with or without reconstruction, do your monthly BSEs, live a healthy lifestyle and insist on the care you feel you need from your doctor(s). Also know that this is a rare occurance.

Barb A
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Comments

  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #2
    Good post!
    Good post Barb and good advice! I do have a question. Did you have radiation with your first diagnosis? I didn't see that you did.

    Thanks for sharing this.


    Sue :)
  • Boppy_of_6
    Boppy_of_6 Member Posts: 1,138
    #3
    Ritzy said:

    Good post!
    Good post Barb and good advice! I do have a question. Did you have radiation with your first diagnosis? I didn't see that you did.

    Thanks for sharing this.


    Sue :)

    Thank you
    I have a friend in a little different situation but she is under the impression that if the breast is gone so is the chance of breast cancer. She will not listen to anyone and I am afraid her Dr. is who basically told her this :( Thanks for sharing. God Bless
    (((Hugs))) Janice
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    #4
    Thanks, Barb, good
    Thanks, Barb, good information. I was instructed by my onc to do the BSE monthly because not all breast tissue is removed. I believe she used the percentage that I still could have as much as 10% left. Anyway, I found both of my tumors doing my monthly exam, so I will faithfully do this. I also highly recommend that everyone do their monthly exam!
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #5
    MyTurnNow said:

    Thanks, Barb, good
    Thanks, Barb, good information. I was instructed by my onc to do the BSE monthly because not all breast tissue is removed. I believe she used the percentage that I still could have as much as 10% left. Anyway, I found both of my tumors doing my monthly exam, so I will faithfully do this. I also highly recommend that everyone do their monthly exam!

    Excellent post. Barb, I am so very sorry
    to read about your situation ---. I would of never imagined, sounds like a 'science fiction' script. Did any of your doctors mention this may occur? The reason I ask is that while doing some reading, researching I noticed that I, myself have a 8% chance of recurrence .. even after my bilateral mastectomy. Yes, no specialist, doctor or plastic surgeon -- stated anything of the sort. Did I mentioned that I spent 15 months with all 3 doctors, fighting my breast cancer - chemo - surgeries. I just don't get it ..

    I hate breast cancer, and cancer of any type.


    Vicki Sam
  • Boki
    Boki Member Posts: 16
    #6
    VickiSam said:

    Excellent post. Barb, I am so very sorry
    to read about your situation ---. I would of never imagined, sounds like a 'science fiction' script. Did any of your doctors mention this may occur? The reason I ask is that while doing some reading, researching I noticed that I, myself have a 8% chance of recurrence .. even after my bilateral mastectomy. Yes, no specialist, doctor or plastic surgeon -- stated anything of the sort. Did I mentioned that I spent 15 months with all 3 doctors, fighting my breast cancer - chemo - surgeries. I just don't get it ..

    I hate breast cancer, and cancer of any type.


    Vicki Sam

    Thanks for sharing
    Hi Barb,

    sorry to hear that you have to go through it again.

    I am new to this board and about 7 months ago they found sprinkle of calcification all over my right breast and two groupings in the outer area of the same breast. Also, they found a lump in my left side, but saying it is fluid and no need to worry about it.

    Last week I had a second mammogram and they said the same thing.

    I have scheduled to see a high risk specialist on March 1st, and my physician and other radiologist insist how everything is fine and it is benign....but, I am soo worried.

    Thanks for sharing your story, it makes me feel stronger in my insisting on being checked closely.

    Take care,

    B.
  • missrenee
    missrenee Member Posts: 2,136 Member
    #7
    Boki said:

    Thanks for sharing
    Hi Barb,

    sorry to hear that you have to go through it again.

    I am new to this board and about 7 months ago they found sprinkle of calcification all over my right breast and two groupings in the outer area of the same breast. Also, they found a lump in my left side, but saying it is fluid and no need to worry about it.

    Last week I had a second mammogram and they said the same thing.

    I have scheduled to see a high risk specialist on March 1st, and my physician and other radiologist insist how everything is fine and it is benign....but, I am soo worried.

    Thanks for sharing your story, it makes me feel stronger in my insisting on being checked closely.

    Take care,

    B.

    Thanks, Barb. Your post is an eye-opener.
    This disease is so sneaky and crafty--just when you think you understand it, it changes its form and direction. My best wishes for your perfect health.

    Hugs, Renee
  • carkris
    carkris Member Posts: 4,553 Member
    #8
    missrenee said:

    Thanks, Barb. Your post is an eye-opener.
    This disease is so sneaky and crafty--just when you think you understand it, it changes its form and direction. My best wishes for your perfect health.

    Hugs, Renee

    yes it is a persistent
    yes it is a persistent bugger like a flippin parasite that just wont leave sometimes! I had a local recurrence on my reconstructed breast. It was considered a left over from the mastectomy, the reason I had a mastectomy was DCIS (I had a very small tumor otherwise) then I had rads and was ok. I have found every one of my darned tumors despite vigilant checkups. so yes keep checking ladies and thanks for posting Barb!
  • New Flower
    New Flower Member Posts: 4,294
    #9
    carkris said:

    yes it is a persistent
    yes it is a persistent bugger like a flippin parasite that just wont leave sometimes! I had a local recurrence on my reconstructed breast. It was considered a left over from the mastectomy, the reason I had a mastectomy was DCIS (I had a very small tumor otherwise) then I had rads and was ok. I have found every one of my darned tumors despite vigilant checkups. so yes keep checking ladies and thanks for posting Barb!

    Thank you for sharing your story
    Barb,
    Thank you for sharing your story. It is a reminder to all of us to be vigilant and persistent.
    I am glad that many people found your post very helpful.
    Thanks again,
    New Flower
  • Dawne.Hope
    Dawne.Hope Member Posts: 823
    #10
    VickiSam said:

    Excellent post. Barb, I am so very sorry
    to read about your situation ---. I would of never imagined, sounds like a 'science fiction' script. Did any of your doctors mention this may occur? The reason I ask is that while doing some reading, researching I noticed that I, myself have a 8% chance of recurrence .. even after my bilateral mastectomy. Yes, no specialist, doctor or plastic surgeon -- stated anything of the sort. Did I mentioned that I spent 15 months with all 3 doctors, fighting my breast cancer - chemo - surgeries. I just don't get it ..

    I hate breast cancer, and cancer of any type.


    Vicki Sam

    mine did
    Dear VickiSam -

    My BS did tell me that it wasn't a done deal to get the DMX and then no more cancer. She instructed me to do the monthly breast exams and feel for lumps under the arms.

    Sadly, as we see, it can happen. :(
  • Angie2U
    Angie2U Member Posts: 2,991
    #11
    Boki said:

    Thanks for sharing
    Hi Barb,

    sorry to hear that you have to go through it again.

    I am new to this board and about 7 months ago they found sprinkle of calcification all over my right breast and two groupings in the outer area of the same breast. Also, they found a lump in my left side, but saying it is fluid and no need to worry about it.

    Last week I had a second mammogram and they said the same thing.

    I have scheduled to see a high risk specialist on March 1st, and my physician and other radiologist insist how everything is fine and it is benign....but, I am soo worried.

    Thanks for sharing your story, it makes me feel stronger in my insisting on being checked closely.

    Take care,

    B.

    I am sorry Barb that this
    I am sorry Barb that this happened to you. Sending prayers and hugs to you.

    Thanks for sharing this. Good post!


    Hugs, Angie
  • CandaceMM
    CandaceMM Member Posts: 68
    #12
    Dawne.Hope said:

    mine did
    Dear VickiSam -

    My BS did tell me that it wasn't a done deal to get the DMX and then no more cancer. She instructed me to do the monthly breast exams and feel for lumps under the arms.

    Sadly, as we see, it can happen. :(

    Definitely sounds like science fiction
    I'm at the tail end of reconstruction, next phase is nipples. My implants are so strange feeling, I can't imagine detecting a lump. Jeez, they feel like 2 big lumps. My implant surgery was just 12/29/2010. But...WHAT!??? No one has discussed this with me.

    Thanks so much for posting this. I learn something new every day.
  • Barb A
    Barb A Member Posts: 123
    #13
    CandaceMM said:

    Definitely sounds like science fiction
    I'm at the tail end of reconstruction, next phase is nipples. My implants are so strange feeling, I can't imagine detecting a lump. Jeez, they feel like 2 big lumps. My implant surgery was just 12/29/2010. But...WHAT!??? No one has discussed this with me.

    Thanks so much for posting this. I learn something new every day.

    No radiation
    Ritzy, no, I didn't have chemo or radiation the first time around. My oncologist said that it probably wasn't necessary as I had clean margins and had the mastectomy. I hadn't been told that I recall, that I could get it again in the same breast. I did do BSEs around it though as I knew not all the tissue was removed.

    Thanks everyone for your nice comments and feedback. It's great that we can share stories, information and support with each other. God's blessings to you all.

    Barb A
  • Tiki Dickerson
    Tiki Dickerson Member Posts: 2
    #14
    Boki said:

    Thanks for sharing
    Hi Barb,

    sorry to hear that you have to go through it again.

    I am new to this board and about 7 months ago they found sprinkle of calcification all over my right breast and two groupings in the outer area of the same breast. Also, they found a lump in my left side, but saying it is fluid and no need to worry about it.

    Last week I had a second mammogram and they said the same thing.

    I have scheduled to see a high risk specialist on March 1st, and my physician and other radiologist insist how everything is fine and it is benign....but, I am soo worried.

    Thanks for sharing your story, it makes me feel stronger in my insisting on being checked closely.

    Take care,

    B.

    Thinking of you
    Hi Boki,
    I read what you are going thru and just want you to know to keep asking your Doctor's until you are satisfied and don't STOP. These days we can't stop asking questions. We can only do one day at a time and on March 1st I pray you will be fine and your worries will be OVER! Can they get you in any sooner? Do they have a cancelation list?
    I know I've been there and yes it's very scary.
    I will be here if you need someone to type to.
    I am new today Jan 27th 2011. I was Diagnosed Jan. 2010 stage 2 ER & PR positive. It's been quite a journey for me almost finished. I wish you the best!
    Keep looking up girl!
    Tiki
  • Tiki Dickerson
    Tiki Dickerson Member Posts: 2
    #15
    Barb A said:

    No radiation
    Ritzy, no, I didn't have chemo or radiation the first time around. My oncologist said that it probably wasn't necessary as I had clean margins and had the mastectomy. I hadn't been told that I recall, that I could get it again in the same breast. I did do BSEs around it though as I knew not all the tissue was removed.

    Thanks everyone for your nice comments and feedback. It's great that we can share stories, information and support with each other. God's blessings to you all.

    Barb A

    Wow!
    Hi Barb,
    Boy you have been put thru the mill and by God's grace you are still here. Sounds like you are a fighter and a Sweet Lady too. Just wanted to say Thanks for the tips.
    Take Care of You!
    Tiki
  • linpsu
    linpsu Member Posts: 747
    #16
    Me too
    I too had a recurrence in my breast after mastectomy and reconstruction (implant). It occured under my mastectomy scar. Janelle (Different Ballgame) also had this happen. It is very rare, but it does happen, so please be diligent and don't ever assume you can't have a recurrence after a mastectomy.
    Linda
  • susie09
    susie09 Member Posts: 2,930
    #17
    linpsu said:

    Me too
    I too had a recurrence in my breast after mastectomy and reconstruction (implant). It occured under my mastectomy scar. Janelle (Different Ballgame) also had this happen. It is very rare, but it does happen, so please be diligent and don't ever assume you can't have a recurrence after a mastectomy.
    Linda

    Great post Barb! I am so
    Great post Barb! I am so sorry for those of you that have had a recurrence. We all need to always be on our toes, don't we.


    God bless everyone!
  • parris
    parris Member Posts: 23
    #18
    Great posting!
    Thanks for the great advice!
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #19
    Barb A said:

    No radiation
    Ritzy, no, I didn't have chemo or radiation the first time around. My oncologist said that it probably wasn't necessary as I had clean margins and had the mastectomy. I hadn't been told that I recall, that I could get it again in the same breast. I did do BSEs around it though as I knew not all the tissue was removed.

    Thanks everyone for your nice comments and feedback. It's great that we can share stories, information and support with each other. God's blessings to you all.

    Barb A

    Thanks Barb for replying to
    Thanks Barb for replying to my question! And once again, thanks for a really great post to inform everyone.


    Sue :)
  • Boki
    Boki Member Posts: 16
    #20
    Tiki Dickerson said:

    Thinking of you
    Hi Boki,
    I read what you are going thru and just want you to know to keep asking your Doctor's until you are satisfied and don't STOP. These days we can't stop asking questions. We can only do one day at a time and on March 1st I pray you will be fine and your worries will be OVER! Can they get you in any sooner? Do they have a cancelation list?
    I know I've been there and yes it's very scary.
    I will be here if you need someone to type to.
    I am new today Jan 27th 2011. I was Diagnosed Jan. 2010 stage 2 ER & PR positive. It's been quite a journey for me almost finished. I wish you the best!
    Keep looking up girl!
    Tiki

    Thank you Tiki:)
    I am glad that I have so much support here:)

    I will keep you updated.

    Boki
  • jnl
    jnl Member Posts: 3,869 Member
    #21
    parris said:

    Great posting!
    Thanks for the great advice!

    Thank you for sharing
    Thank you for sharing this.


    Leeza

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