Had mastectomy 2 weeks ago; more cancer found; wondering if I'll need chemo now

SherryAF
SherryAF Member Posts: 31
edited March 2014 in Breast Cancer #1
I had bilateral mastectomies 2 weeks ago, along with immediate free TRAM reconstruction; doc called the next week and said there was no cancer found in the other breast. HOWEVER, there WAS more cancer found in the original breast (Paget's disease of the nipple, DCIS of the nipple). Original diagnosis was invasive lobular carcinoma, invasive ductal carcinoma, stage 1A.

I still have 2 more surgeries to go to complete the reconstruction.

I had lumpectomy in November, but didn't get clear margins, so that is why mastectomy was done. And now I'm so glad, because the other cancer wouldn't have been found without that mastectomy!

I'm meeting again with oncologist next week, and now I'm wondering if she will recommend chemo since cancer was found in another part of my breast. Originally she had said she wouldn't recommend chemo for me.

Has anybody had the same thing happen? I'm just really wondering about chemo. Thanks!

Comments

  • Megan M
    Megan M Member Posts: 3,000
    #2
    I can't answer your question
    I can't answer your question Sherry as I don't know. But, just want to wish you good luck.

    Megan
  • New Flower
    New Flower Member Posts: 4,294
    #3
    Megan M said:

    I can't answer your question
    I can't answer your question Sherry as I don't know. But, just want to wish you good luck.

    Megan

    Sorry for you pathology report
    Chemo will depends on lymph nodes involvement type and size of your cancer.If you have positive nodes usually Chemo is recommended.
    I had similar situation in 2008.Could not get clear margins first time and decided to underwent mastectomy. It was much worst after mastectomy. I am still pleased with my choice.
    Hugs,
    New Flower
  • cindycflynn
    cindycflynn Member Posts: 1,132 Member
    #4
    Sherry
    My situation was different than yours, but I'm thinking you might still be able to skip chemo.

    You didn't say whether they found anything in your lymph nodes, but I'm thinking that they were probably negative from your lumpectomy which is why your doctor told you that you probably wouldn't need the chemo.

    Do you know whether they've run an Oncotype DX test? Especially based on these new findings, you may want to request the results of that test, which will give you a score indicating the chances of rucurrence. This test is only valuable for those with Stage I, node-negative tumors, who would otherwise not have chemo. Some in this situation have come back with surprisingly high scores which made them opt for the chemo after all. This is what happened to me - I had IDC, 1.3cm with negative lymph nodes. My Oncotype score was in the intermediate range, which made chemo basically an option that would increase my chances by about 4%, but that was enough to make it worthwhile for my peace of mind.

    Discuss with your doctor, but try not to be too afraid of the chemo if you and your doctor do end up deciding that is best for you. I've had 2 of my 4 treatments of Cytoxan and Taxotere with very few side effects. Chemo is much more doable than it used to be.

    Best wishes,
    Cindy
  • Megan M
    Megan M Member Posts: 3,000
    #5
    New Flower said:

    Sorry for you pathology report
    Chemo will depends on lymph nodes involvement type and size of your cancer.If you have positive nodes usually Chemo is recommended.
    I had similar situation in 2008.Could not get clear margins first time and decided to underwent mastectomy. It was much worst after mastectomy. I am still pleased with my choice.
    Hugs,
    New Flower

    Is chemo always recommended
    Is chemo always recommended if your nodes aren't clean? Or, does the oncotype test change that? I haven't figured that test out yet.
  • tommaseena
    tommaseena Member Posts: 1,769
    #6
    cindycflynn said:

    Sherry
    My situation was different than yours, but I'm thinking you might still be able to skip chemo.

    You didn't say whether they found anything in your lymph nodes, but I'm thinking that they were probably negative from your lumpectomy which is why your doctor told you that you probably wouldn't need the chemo.

    Do you know whether they've run an Oncotype DX test? Especially based on these new findings, you may want to request the results of that test, which will give you a score indicating the chances of rucurrence. This test is only valuable for those with Stage I, node-negative tumors, who would otherwise not have chemo. Some in this situation have come back with surprisingly high scores which made them opt for the chemo after all. This is what happened to me - I had IDC, 1.3cm with negative lymph nodes. My Oncotype score was in the intermediate range, which made chemo basically an option that would increase my chances by about 4%, but that was enough to make it worthwhile for my peace of mind.

    Discuss with your doctor, but try not to be too afraid of the chemo if you and your doctor do end up deciding that is best for you. I've had 2 of my 4 treatments of Cytoxan and Taxotere with very few side effects. Chemo is much more doable than it used to be.

    Best wishes,
    Cindy

    Lymph nodes
    My lymph nodes were clear and still needed chemo due to being HER2+.
    Have they done any special tests on your tissue to see if you are Estrogen+, Progesterone+ or HER2+?

    Margo
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #7
    tommaseena said:

    Lymph nodes
    My lymph nodes were clear and still needed chemo due to being HER2+.
    Have they done any special tests on your tissue to see if you are Estrogen+, Progesterone+ or HER2+?

    Margo

    Sometimes the nodes are
    Sometimes the nodes are clear and they still want you to take chemo Sherry. What did your path report say about being ER or PR +?

    I hope you don't have to have it. Good luck!
  • Kiantae
    Kiantae Member Posts: 29
    #8
    Megan M said:

    Is chemo always recommended
    Is chemo always recommended if your nodes aren't clean? Or, does the oncotype test change that? I haven't figured that test out yet.

    My Oncologist believes so
    I had 2 sentinel nodes that had cancer cells but other 12 removed in subsequent procedure were clean. My oncologist is of the opinion that the Oncotype DX would still determine if chemo is necessary because it is based on the biology of the tumor and its likelihood of recurrence. The thought is that if the score is low, hormone therapy+chemo has the same results as hormone therapy alone. There does not seem to be a lot of information for the node-positive scenario but there is some out there. I have not received my score yet, so I have not gotten to the point of a decision. Most people I talk to say to do chemo no matter what so I won't have any regrets. My oncologist is highly respected, very intelligent, immerses himself in research, likes to tailor treatment to the individual, but he is also a human being that could be wrong. There are no definites in this world of cancer.
  • Balentine
    Balentine Member Posts: 393
    #9
    When surgeons tell you that you won't need chemo
    Yes...originally my surgeon told me before the surgery that if there was no cancer in the lymph nodes then I would not need chemo if I did the mastectomy. I had already had a biopsy and was diagnosed with stage 1 invasive ductal carcinoma with a 2.2cm lump. However, a week after my surgery the nurse informed me that she was scheduling me for treatment. I asked her for what treatment. She said they were probably going to recommend chemo and tomoxifen. They took 3 lymph nodes and there was no cancer in my lymph nodes. My social worker told me that surgeons should not be telling you a definite on chemo until after the surgery is performed and they have had time to further examine the lump and breast if you had a mastectomy. I had my mastectomy 1/19 and am scheduled for 4 rounds of taxotere and cytozan starting 3/15. Then 5 years of tamoxifen. From what I was told, it does depend on the size of the lump but also if the cancer cell is invasive and not just ductal. Invasive means the cancer has broken outide of the duct and is invading the breast tissue so I am glad I did not have a lumpectomy and had the mastectomy instead to make sure they got it all. However, because it was invasive, there are probably cancer cells floating around in my body as we speak. Sometimes your immune system will be able to kill these cells on its own but that is taking a big gamble not knowing your immune system. They told me by doing the chemo and tamoxifen that I would go from a 26% of recurrence down to only an 8% chance. Hope this helps and God bless and heal all of us!

    Lorrie Balentine
  • AmandaMarie29
    AmandaMarie29 Member Posts: 55
    #10
    I had a bi-lateral
    I had a bi-lateral mastectomy with a 1.5cm tumor....Stage 1 invasive lobular carcinoma ER+ PR+ and her2- ....no lymph node involvment.....chemo was recommended to me. My Oncologist said without it my chances of it coming back in the next 10 years is %15...she said if I do it it lowers my chance to %2....as much as i hate the idea of having to do it....it seems worth it to me...I actually will be starting it on Monday....Good luck with your decision!

    Mandi

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