breast cancer in situ after mastectomy?

In June of 2011 I had bilateral mastectomy. I had stage 2 in left breast. My surgeon told me that she had got all of the cancer and the next treatment would be chemo.She said no radiation would be needed since she had removed the cancer and all breast tissue.
I did 11 Taxol, and 4 F/A/C Had my last F/A/C on December 13th. I then started my year of Herceptin and 5 years of Tamoxifin.
Monday I had my Breast implant exchange surgery. It was such a wonderful day,I felt like this was all going to be behind me and it was a new beginning. Today shortly after 5pm My plastic surgeon called. I thought he was calling to see how I was doing after the surgery. He explained that he had removed scar tissue and that the pathology report had come in today. It showed the scar tissue was positive for cancerous cells. He said it was in situ and non invasive and that I would need radiation and possibly another surgery.He said that not all of the cancer had in fact been removed during my mastectomy. This is all of the info I have so far since it was after 5 when he called I couldn't call to set up any appointments and will do so in the morning.
I have so many questions that I do not even know where to begin.
Has this happened to any of you? What kind of questions should I ask when I speak to my doctors?
«1

Comments

  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    So sorry
    So sorry you should have to face this again. No this has not happened to me so in that case I cannot be of the type of help you are looking for. I can however pray that you have a clear head to understand the implications of this for you.
  • serenity92
    serenity92 Member Posts: 84
    Oh my goodness. I can only
    Oh my goodness. I can only imagine how upset you are. My exchange surgery is scheduled for Feb. 21st. I have spent the last six months looking forward to that week. To have your excitement changed to something negetive is really rough. I can only offer you my support and prayers. Please keep us posted as soon as you hear more. Know that you are never alone. Jayne
  • Noel
    Noel Member Posts: 3,095 Member

    Oh my goodness. I can only
    Oh my goodness. I can only imagine how upset you are. My exchange surgery is scheduled for Feb. 21st. I have spent the last six months looking forward to that week. To have your excitement changed to something negetive is really rough. I can only offer you my support and prayers. Please keep us posted as soon as you hear more. Know that you are never alone. Jayne

    I am so sorry that this
    I am so sorry that this happened. I am sending lots of cyber hugs and prayers to you. Keep us updated please.


    Hugs, Noel
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    I had a bilateral in Jan
    I had a bilateral in Jan 2011, and local recurrence in Aug 2011...mine showed up as a small lump virtually on my mastectomy scar. Once the biopsy confirmed the presence of cancer, my oncologist scheduled a CT scan. That was followed by a PET scan because some of the results on CT scan needed more information. I has a re-excision surgery in Sept to remove the local recurrence. Then additional testing confirmed mets to the lymph nodes between my lungs, and I am back on chemo to contain that. I have not had any reconstruction.

    My advice is to ask for those additional tests, I wanted to know exactly where the cancer was and how much we were dealing with. I can't speak to the reconstruction, but I would want to know how or if reconstruction plans change now.

    For me, it helps to write the questions down as they come to mind. When I don't they circle through my mind over and over again...driving me nuts. Once I write them down, it frees my mind to move on to other things.

    I don't know how much help this is, but with all the pink sisters you are never alone.

    Hugs,

    Linda
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    I am so so sorry to hear of
    I am so so sorry to hear of your cancer coming back. But I question the diagnoses. In situ cancer or non-invasive means that it DCIS, Stage 0(there is LCIS but I don't know much about that other than it is a precancer, and there is some debate about that). That can ONLY occur in the milk ducts. Once the DCIS leaves the milk ducts it is no longer non-invasive. I don't understand how it could be called non-invasive if it is not in a milk duct. Talk to your oncologist about this and make sure it is the right stage.

    I would also ask why it was the breast surgeon determining whether or not you needed radiation and not the radiation oncologist. I know with DCIS and mastectomy, if the margins are clean, there is no need for radiation, but I don't know about higher stages.

    I know that for those of us that get mastectomies, we think we have a better chance of not getting it back. But I was warned by my surgeon that there is no guarantee that there weren't a cancer cell or two left behind that they just don't know about.So I would ask your breast surgeon what your margins were after the mastectomy. If your margins weren't clean, perhaps you should have had radiation. Also, I would ask the breast surgeon how she knew she got all the cancer.

    Also, when we get mastectomies, not all the breast tissue is taken out. There is more tissue considered breast tissue than just the breast. Breast tissue is more extensive than most people think, going across the chest and upwards, etc.

    I agree that you should ask your breast surgeon, plastic surgeon and oncologists how this will effect your reconstruction.

    I know there is another lady on here that had cancer in her scar tissue. I am not sure if she had a mastectomy or not though. I hope she sees this and can help you.

    I am sure some of the other ladies that had a reoccurrence will help you out.
  • Ritzy
    Ritzy Member Posts: 4,381 Member

    So sorry
    So sorry you should have to face this again. No this has not happened to me so in that case I cannot be of the type of help you are looking for. I can however pray that you have a clear head to understand the implications of this for you.

    I am very sorry that your bc
    I am very sorry that your bc came back. I wish you the best and will be praying for you ofcourse.


    Sue :(
  • Different Ballgame
    Different Ballgame Member Posts: 868
    Had 0 Stage DCIS - Mastectomies - Recurrence on scar
    Extremely important that you write down all your questions when you see the doctors. Give the doctor one copy and you keep a copy, so you can check it off when question has been answered. If you don't have it, buy Dr. Susan Love's Breast Book, 5th Edition. If I had read the whole book, I would have then known that it is possible to have a recurrence on the scar. Make sure you know the growth rate of your cancer. That will tell you how fast you need to act. Most important, don't look backward about your cancer. Concentrate now on the course of action and what your options are.

    First time around, I had two surgical biopsies in right breast where margins were not clear. I started with one speck of cancer - 0 Stage DCIS. I then decided to be extremely aggressive and opted to have both breasts removed. Lymph nodes were clear and breast showed no more cancer present when examined by pathologist. Great. No chemo. No radiation. No Arimidex.

    Had immediate breast reconstruction which ended up taking 2 years to complete due to infection in both tissue expanders.

    One year with implants and three years after mastectomies, cancer appeared on my surgical scar. I thought it was an irritation to the stitches. Diagnosed now with invasive carcinoma. General feeling by breast oncology surgeon was that it was still the same cancer, which biopsy proved. All tests...MRI, Bone Scan, Cat Scan...showed no cancer present anywhere else in my body. However, these tests cannot detect microscopic cancer, only a microscope can detect it.

    Treatment plan now was a total of 33 days of radiation followed by Arimidex. I fired my first hematologist as she did not respond to me regarding the side effects to Arimidex. She told me flatly that my side effects were not side effects to Arimidex. The new doctor is fantastic, smart, and open minded.

    I am fairly certain that you will now have radiation. Please read about radiation. I did not want my lymph nodes radiated and made sure that the doctor honored my request.

    So you understand a mastectomy. A tiny portion of breast tissue is left directly behind your skin...it supports your skin.

    My recurrence is extremely, extremely rare. One in a few million will have this happen to them. Lucky me!! I always look at the positive. The recurrence brought me to this site. I searched for more knowledge, which I share with everyone who has a need for it. I am a volunteer at Lynn Sage Breast Center and calm the women who come there for diagnostic testing. I helped develop sources of information for breast cancer women for my plastic surgeon's website. He asked me to help them. AND, I believe that I am going to live to my 90's.

    My best wishes to you. Second time around is not easy, mentally. Please continue to post for support and knowledge. We are here for you.

    Lots of Hugs,
    Janelle
  • Alexis F
    Alexis F Member Posts: 3,598

    I had a bilateral in Jan
    I had a bilateral in Jan 2011, and local recurrence in Aug 2011...mine showed up as a small lump virtually on my mastectomy scar. Once the biopsy confirmed the presence of cancer, my oncologist scheduled a CT scan. That was followed by a PET scan because some of the results on CT scan needed more information. I has a re-excision surgery in Sept to remove the local recurrence. Then additional testing confirmed mets to the lymph nodes between my lungs, and I am back on chemo to contain that. I have not had any reconstruction.

    My advice is to ask for those additional tests, I wanted to know exactly where the cancer was and how much we were dealing with. I can't speak to the reconstruction, but I would want to know how or if reconstruction plans change now.

    For me, it helps to write the questions down as they come to mind. When I don't they circle through my mind over and over again...driving me nuts. Once I write them down, it frees my mind to move on to other things.

    I don't know how much help this is, but with all the pink sisters you are never alone.

    Hugs,

    Linda

    Very sorry to read that your
    Very sorry to read that your bc has appeared again. That is news we never want to get. I think your post is important for lots of reasons, one being the fact that I think some pink sisters think that by having a mastectomy that it can never come back. Your post will make them be more vigil I believe, so thank you for that.


    Next, I will be praying for you and please keep posting to update us.


    Hugs, Lex
  • carkris
    carkris Member Posts: 4,553 Member

    Had 0 Stage DCIS - Mastectomies - Recurrence on scar
    Extremely important that you write down all your questions when you see the doctors. Give the doctor one copy and you keep a copy, so you can check it off when question has been answered. If you don't have it, buy Dr. Susan Love's Breast Book, 5th Edition. If I had read the whole book, I would have then known that it is possible to have a recurrence on the scar. Make sure you know the growth rate of your cancer. That will tell you how fast you need to act. Most important, don't look backward about your cancer. Concentrate now on the course of action and what your options are.

    First time around, I had two surgical biopsies in right breast where margins were not clear. I started with one speck of cancer - 0 Stage DCIS. I then decided to be extremely aggressive and opted to have both breasts removed. Lymph nodes were clear and breast showed no more cancer present when examined by pathologist. Great. No chemo. No radiation. No Arimidex.

    Had immediate breast reconstruction which ended up taking 2 years to complete due to infection in both tissue expanders.

    One year with implants and three years after mastectomies, cancer appeared on my surgical scar. I thought it was an irritation to the stitches. Diagnosed now with invasive carcinoma. General feeling by breast oncology surgeon was that it was still the same cancer, which biopsy proved. All tests...MRI, Bone Scan, Cat Scan...showed no cancer present anywhere else in my body. However, these tests cannot detect microscopic cancer, only a microscope can detect it.

    Treatment plan now was a total of 33 days of radiation followed by Arimidex. I fired my first hematologist as she did not respond to me regarding the side effects to Arimidex. She told me flatly that my side effects were not side effects to Arimidex. The new doctor is fantastic, smart, and open minded.

    I am fairly certain that you will now have radiation. Please read about radiation. I did not want my lymph nodes radiated and made sure that the doctor honored my request.

    So you understand a mastectomy. A tiny portion of breast tissue is left directly behind your skin...it supports your skin.

    My recurrence is extremely, extremely rare. One in a few million will have this happen to them. Lucky me!! I always look at the positive. The recurrence brought me to this site. I searched for more knowledge, which I share with everyone who has a need for it. I am a volunteer at Lynn Sage Breast Center and calm the women who come there for diagnostic testing. I helped develop sources of information for breast cancer women for my plastic surgeon's website. He asked me to help them. AND, I believe that I am going to live to my 90's.

    My best wishes to you. Second time around is not easy, mentally. Please continue to post for support and knowledge. We are here for you.

    Lots of Hugs,
    Janelle

    I have heard of recurrence
    I have heard of recurrence after reconstruction some cells show up on the tissue. The doctor gets margins and then feels the cancer is all removed. I had a local recurrence after reconstruction in 1995. I had the implant removed, had radiation, and never reconstructed after that. I also had a repeat CT and bone scan. at that time. I did not have any further issues in that breast after that.
  • Kristin N
    Kristin N Member Posts: 1,968 Member

    I am so so sorry to hear of
    I am so so sorry to hear of your cancer coming back. But I question the diagnoses. In situ cancer or non-invasive means that it DCIS, Stage 0(there is LCIS but I don't know much about that other than it is a precancer, and there is some debate about that). That can ONLY occur in the milk ducts. Once the DCIS leaves the milk ducts it is no longer non-invasive. I don't understand how it could be called non-invasive if it is not in a milk duct. Talk to your oncologist about this and make sure it is the right stage.

    I would also ask why it was the breast surgeon determining whether or not you needed radiation and not the radiation oncologist. I know with DCIS and mastectomy, if the margins are clean, there is no need for radiation, but I don't know about higher stages.

    I know that for those of us that get mastectomies, we think we have a better chance of not getting it back. But I was warned by my surgeon that there is no guarantee that there weren't a cancer cell or two left behind that they just don't know about.So I would ask your breast surgeon what your margins were after the mastectomy. If your margins weren't clean, perhaps you should have had radiation. Also, I would ask the breast surgeon how she knew she got all the cancer.

    Also, when we get mastectomies, not all the breast tissue is taken out. There is more tissue considered breast tissue than just the breast. Breast tissue is more extensive than most people think, going across the chest and upwards, etc.

    I agree that you should ask your breast surgeon, plastic surgeon and oncologists how this will effect your reconstruction.

    I know there is another lady on here that had cancer in her scar tissue. I am not sure if she had a mastectomy or not though. I hope she sees this and can help you.

    I am sure some of the other ladies that had a reoccurrence will help you out.

    I am so sorry that you've
    I am so sorry that you've had a recurrence. I will be praying for you.

    ♥ Kristin ♥
  • mom62
    mom62 Member Posts: 604 Member
    Cells
    Hi,

    There is no guarantee that chemo will ever kill all cancer cells. That's all it takes is one left behind to start growing again. I never did radiation either and had a recurrance in my bones five years later after five years of tamoxafin. Your doctor may have felt like she got it all and it may not have been visible if it was just a couple of cells left behind. The fact is cancer loves scar tissue. My second was wrapped around my scar tissue and had grown onto and attached itself to my bones. I'm sorry this is happening to you so soon after your first go round. Please remember, they found it early again and that is good. Have faith and you will get through this as well. I'll say a prayer for you. (((((hugs))))

    Terry
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    mom62 said:

    Cells
    Hi,

    There is no guarantee that chemo will ever kill all cancer cells. That's all it takes is one left behind to start growing again. I never did radiation either and had a recurrance in my bones five years later after five years of tamoxafin. Your doctor may have felt like she got it all and it may not have been visible if it was just a couple of cells left behind. The fact is cancer loves scar tissue. My second was wrapped around my scar tissue and had grown onto and attached itself to my bones. I'm sorry this is happening to you so soon after your first go round. Please remember, they found it early again and that is good. Have faith and you will get through this as well. I'll say a prayer for you. (((((hugs))))

    Terry

    I don't understand
    I don't understand because I was dx with DCIS non invasive with a very small tumor.It won't spread since it is in the mile duct but I can get other cancers. It can spread in later stages though.Then it does go out of the milk duct area.With them doing a mascectomy on you makes me wonder if yours wasn't invasive.You were Stage 2 but I was DCIS Stage 0 like someone else mentioned in their post.IMO Stage 2 isn't confined. Mh friend was Stage 3.She had bc and cancer was was also found in 3 nodes.

    With my dx DCIS Stage 0, non invasive I didn't have chemo or radiation.Just take Tamoxifin for 5 years.That is what my treatment is.

    Wishing the best for you.

    Lynn Smith
  • Alexis F
    Alexis F Member Posts: 3,598
    mom62 said:

    Cells
    Hi,

    There is no guarantee that chemo will ever kill all cancer cells. That's all it takes is one left behind to start growing again. I never did radiation either and had a recurrance in my bones five years later after five years of tamoxafin. Your doctor may have felt like she got it all and it may not have been visible if it was just a couple of cells left behind. The fact is cancer loves scar tissue. My second was wrapped around my scar tissue and had grown onto and attached itself to my bones. I'm sorry this is happening to you so soon after your first go round. Please remember, they found it early again and that is good. Have faith and you will get through this as well. I'll say a prayer for you. (((((hugs))))

    Terry

    Did you get in to see your
    Did you get in to see your doctor yet? Sending prayers for you!


    Hugs, Lex
  • sweetvickid
    sweetvickid Member Posts: 459 Member

    I don't understand
    I don't understand because I was dx with DCIS non invasive with a very small tumor.It won't spread since it is in the mile duct but I can get other cancers. It can spread in later stages though.Then it does go out of the milk duct area.With them doing a mascectomy on you makes me wonder if yours wasn't invasive.You were Stage 2 but I was DCIS Stage 0 like someone else mentioned in their post.IMO Stage 2 isn't confined. Mh friend was Stage 3.She had bc and cancer was was also found in 3 nodes.

    With my dx DCIS Stage 0, non invasive I didn't have chemo or radiation.Just take Tamoxifin for 5 years.That is what my treatment is.

    Wishing the best for you.

    Lynn Smith

    it can spread
    You have to realize that one little ole cell breaks away and can travel thru your body. Sometimes it stays in the breast area or just moves to the a lymph node. Ot it may travel to the bone, lung, brain or liver before it latches on and stays put. Once it stays put it then starts growing sometimes slowly and sometimes very quickly. Dr.'s can not say they got it all in a blanket statement because they can't detect one stray cell hidding somewhere in your body. All they can say is at this time there is no evidence of disease.
  • Angie2U
    Angie2U Member Posts: 2,991

    Had 0 Stage DCIS - Mastectomies - Recurrence on scar
    Extremely important that you write down all your questions when you see the doctors. Give the doctor one copy and you keep a copy, so you can check it off when question has been answered. If you don't have it, buy Dr. Susan Love's Breast Book, 5th Edition. If I had read the whole book, I would have then known that it is possible to have a recurrence on the scar. Make sure you know the growth rate of your cancer. That will tell you how fast you need to act. Most important, don't look backward about your cancer. Concentrate now on the course of action and what your options are.

    First time around, I had two surgical biopsies in right breast where margins were not clear. I started with one speck of cancer - 0 Stage DCIS. I then decided to be extremely aggressive and opted to have both breasts removed. Lymph nodes were clear and breast showed no more cancer present when examined by pathologist. Great. No chemo. No radiation. No Arimidex.

    Had immediate breast reconstruction which ended up taking 2 years to complete due to infection in both tissue expanders.

    One year with implants and three years after mastectomies, cancer appeared on my surgical scar. I thought it was an irritation to the stitches. Diagnosed now with invasive carcinoma. General feeling by breast oncology surgeon was that it was still the same cancer, which biopsy proved. All tests...MRI, Bone Scan, Cat Scan...showed no cancer present anywhere else in my body. However, these tests cannot detect microscopic cancer, only a microscope can detect it.

    Treatment plan now was a total of 33 days of radiation followed by Arimidex. I fired my first hematologist as she did not respond to me regarding the side effects to Arimidex. She told me flatly that my side effects were not side effects to Arimidex. The new doctor is fantastic, smart, and open minded.

    I am fairly certain that you will now have radiation. Please read about radiation. I did not want my lymph nodes radiated and made sure that the doctor honored my request.

    So you understand a mastectomy. A tiny portion of breast tissue is left directly behind your skin...it supports your skin.

    My recurrence is extremely, extremely rare. One in a few million will have this happen to them. Lucky me!! I always look at the positive. The recurrence brought me to this site. I searched for more knowledge, which I share with everyone who has a need for it. I am a volunteer at Lynn Sage Breast Center and calm the women who come there for diagnostic testing. I helped develop sources of information for breast cancer women for my plastic surgeon's website. He asked me to help them. AND, I believe that I am going to live to my 90's.

    My best wishes to you. Second time around is not easy, mentally. Please continue to post for support and knowledge. We are here for you.

    Lots of Hugs,
    Janelle

    Just to let you know that I
    Just to let you know that I and the other pink sisters are always here for you.


    Hugs, Angie
  • fighting4five
    fighting4five Member Posts: 71
    Alexis F said:

    Did you get in to see your
    Did you get in to see your doctor yet? Sending prayers for you!


    Hugs, Lex

    Update
    Thank you all for your thoughts and prayers... My pathology report shows Ductal Carcinoma in situ. My Doctors are all baffled by this.They sat it is not a recurrence but where it was left behind somehow.I was told that this is extremely rare. As I said in previous post I had a Bilateral mastectomy in June for IDC stage 2. My margins were clear and no lymph nodes involved.
    It seems that somehow a duct was left during the mastectomy. Thank God that I did have reconstructive surgery to find this. I felt something after my mastectomy and my surgeon dismissed it as being a stitch then a few months ago I felt something larger and went back to her and she again dismissed it as being calcium deposits that come from abdomen and said it was nothing to be concerned over. I can not even explain how angry I am with her and my oncologist who told me that I did not need radiation because I had no breast tissue left and the surgeon agreed. I now have a new medical team and start radiation next week.
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member

    Update
    Thank you all for your thoughts and prayers... My pathology report shows Ductal Carcinoma in situ. My Doctors are all baffled by this.They sat it is not a recurrence but where it was left behind somehow.I was told that this is extremely rare. As I said in previous post I had a Bilateral mastectomy in June for IDC stage 2. My margins were clear and no lymph nodes involved.
    It seems that somehow a duct was left during the mastectomy. Thank God that I did have reconstructive surgery to find this. I felt something after my mastectomy and my surgeon dismissed it as being a stitch then a few months ago I felt something larger and went back to her and she again dismissed it as being calcium deposits that come from abdomen and said it was nothing to be concerned over. I can not even explain how angry I am with her and my oncologist who told me that I did not need radiation because I had no breast tissue left and the surgeon agreed. I now have a new medical team and start radiation next week.

    WOW. Did you have a skin
    WOW. Did you have a skin sparing mastectomy or nipple sparing? I am truly truly sorry for this. If I were you, I would be contacting the head of the surgical department, the oncology department AND the head of the clinic that you went to. To tell you that you had no breast tissue left is also wrong unless you had the breast tissue taken out almost to your clavicle. I was told breast tissue goes up that far!I do hope the idiot knows that you had cancer! I am baffled as to how a milk duct got left behind? Thank goodness it was DCIS and not a later stage cancer!!
  • carkris
    carkris Member Posts: 4,553 Member

    WOW. Did you have a skin
    WOW. Did you have a skin sparing mastectomy or nipple sparing? I am truly truly sorry for this. If I were you, I would be contacting the head of the surgical department, the oncology department AND the head of the clinic that you went to. To tell you that you had no breast tissue left is also wrong unless you had the breast tissue taken out almost to your clavicle. I was told breast tissue goes up that far!I do hope the idiot knows that you had cancer! I am baffled as to how a milk duct got left behind? Thank goodness it was DCIS and not a later stage cancer!!

    After mastectomy there is
    After mastectomy there is always a small amount of breast tissue left behind. they do not get it all. they do certain flaps during surgery to remove and put it back together. rarely does something get left behind but it does happen, It happened to me, initially they thought it was a stitch also, but a biopsy showed it to be recurrence. or left over depends on who you talk to. I had chest radiation. repeat scans and was monitored and I was ok. It stinks to be be that low percentage point that it happens to, but some of us are just that. My docs however did not dismiss it even though they thought it wa snot cancer and did biopsy it right away.
  • jnl
    jnl Member Posts: 3,869 Member

    Update
    Thank you all for your thoughts and prayers... My pathology report shows Ductal Carcinoma in situ. My Doctors are all baffled by this.They sat it is not a recurrence but where it was left behind somehow.I was told that this is extremely rare. As I said in previous post I had a Bilateral mastectomy in June for IDC stage 2. My margins were clear and no lymph nodes involved.
    It seems that somehow a duct was left during the mastectomy. Thank God that I did have reconstructive surgery to find this. I felt something after my mastectomy and my surgeon dismissed it as being a stitch then a few months ago I felt something larger and went back to her and she again dismissed it as being calcium deposits that come from abdomen and said it was nothing to be concerned over. I can not even explain how angry I am with her and my oncologist who told me that I did not need radiation because I had no breast tissue left and the surgeon agreed. I now have a new medical team and start radiation next week.

    I am so sorry about this.
    I am so sorry about this. Did you have rads the first time? I know some sisters do after a mastectomy as a precaution and some don't.


    I will be praying for you and thanks for letting us know that this can happen.


    Take care,

    Leeza
  • Noel
    Noel Member Posts: 3,095 Member
    jnl said:

    I am so sorry about this.
    I am so sorry about this. Did you have rads the first time? I know some sisters do after a mastectomy as a precaution and some don't.


    I will be praying for you and thanks for letting us know that this can happen.


    Take care,

    Leeza

    Wishing you good luck with
    Wishing you good luck with rads! Keep posting so we know how you're doing.


    Hugs, Noel