Recurrence in mastectomy... have questions

Nanorama
Nanorama Member Posts: 50
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

Hi All,

I'm writing about my sister, now age 62, because sh won't seek information - she prefers to block out thinking about her situation as much as possible. So I do the research end for her. Here, in brief, is her trajectory:

11-08: Dx left breast multi-focal DCIS w/ some micro-invasion. ER/PR+, HER-2 -.  

02-09: Left breast Mx and ALND w/recon. (Why no SLN, you ask? Don't ask. I'd like to kill her surgeon.) Nodes clean. No radiation or chemo proposed; she declines AI therapy as she already has osteoporosis from having had Cushing's Disease a few years earlier.

04-12: Recurrence found on routine surveillance MRI (ordered to follow her remaining native breast).  She says she can also feel it. about 1 cm. Biopsy again reveals DCIS, but this time it's ER-, HER2+.  

Has anyone else on this board dealt with a similar situation? She's having a lumpectomy on May 7 and I guess we'll be smarter after the path report on the whole tumor comes back, but the oncologist is already talking both chemo and Herceptin.

What questions should she be asking? I'm worried, for example, about the HER2+ finding. Doesn't she need to know what method they used to determine her status, and maybe ask for a retest using a different method to confirm the finding?  Does anyone know where I might find stats on how much chemo helps in this situation? Her cardiovascular system was already damaged by the Cushing's Disease (which went undiagnosed for 5 years), so I worry about the impact of chemo. And I can't help wondering why they don't radiate, since it appears to be a local recurrence.

Any insight anyone has into this would be greatly appreciated. Thanks in advance.

Worried Sister Nan

(2-time BC survivor myself) 

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Comments

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited April 2012

    Hello, sorry I have to be quick here....about to go out the door. What are her cardiovascular issues?  Because Herceptin (which they give for Her2+ IDC) can cause heart issues and if her ejection fraction is low to start with, this may be a problem.  Also, are you sure it is DCIS and not IDC?  Perhaps it is because of the cancer being located at the mastectomy site, but I thought that DCIS was non-invasive.  They recommend chemo and herceptin for IDC with tumors in your sisters range. Hope you get more information soon! 

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  • GraciousGal
    GraciousGal Member Posts: 83
    edited April 2012

    If the cancer was found in the other breast, I don't think it should be called a "recurrence" since that implies a return of cancer after treatment. The surgeon probably didn't do a sentinel node biopsy because (as noted by Kathleen1966) DCIS is not invasive. That means it has not broken through the duct wall. So there would be no reason to think that it would have traveled anywhere else in the breast or lymph nodes. 

    It sounds to me like the doctors are side-stepping some responsibility by claiming the cancer has "recurred" in the other breast. There is also a test for efficacy of chemo for breast cancer. It is called Oncotype DX. The chemistry of the breast cancer is analyzed in a lab to determine if it will respond to chemotherapy. If the score is low and there is no lymph node involvement, then chemotherapy would probably not be worthwhile.

    You are smart to do the research and question what the doctors are telling you and your sister. It is a frightening time, so emotions can often overwhelm a patient. I was fortunate to have my husband come with me to appointments so that we could confirm what the doctor had told us as we discussed the options available. We did have difficulties with one surgeon (who did my lumpectomies) so we switched and are very glad that we did. I think the first one would have put me through a number of lumpectomies before finally recommending mastectomies. The second one suggested an additional MRI and subsequent needle biopsy to make more informed decisions. Keep looking for answers and do not rush into something your sister is not ready to do (esp. chemo). This is a good site for a wide range of topics.

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  • Nanorama
    Nanorama Member Posts: 50
    edited May 2012

    Hi - Sorry, thought it was understood that a recurrence means in the same breast, or ex-breast. She's got a recurrence in the mastectomy side.  (I've had two bc's, one in each breast, so I do understand the distinction.) what perturbs me is that she had one surgical margin which was positive for ER-, HER2+ DCIS at the time of her mastectomy - yet there was no followup radiation.  Does anyone know what the state of the art is for treating a mastectomy where there's  no nodal involvement but the inferior margin is positive for an aggressive (Gr 3, ER-, HER2++) form of DCIS? I'm concerned because she's going back to the same docs as last time. I want her to go to Dana Farber but it's a bit of a drive (she's in Providence). Thanks for your input.

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  • Nanorama
    Nanorama Member Posts: 50
    edited May 2012

    Hi - Sorry it's taken a while to reply! A closer reading of my sister's path report reveals they found IDC on all four slices taken in the recent biopsy.  (My family really don't understand these reports and misreported to me that it was DCIS.)

    Original path report from her 2009 mastectomy showed 95% of tumor volume was DCIS, which was Grade 3, ER--, HER2++, with comedo-type necrosis - pretty aggressive. One surgical margin of the mastectomy (inferior) was positive for this DCIS. Yet no followup radiation or other treatment for the presumably remaining cells of DCIS under the breast skin was offered.

    She WAS offered arimidex to address the small part (5%) of the tumor that was invasive - this part was ER/PR+ HER2-, the opposite of the major DCIS segment -- but she declined arimidex due to osteoporosis (she's already had some hairline fractures). Apparently it would have been useless to prevent this recurrence, since the recurrence is estrogen-receptor negative.

    The cardiovascular issues stem from having gone 5 years with undiagnosed Cushing's Disease.  The massive amounts of circulating stress hormone (cortisol) take a big toll on the arteries over time, and she was told that her biggest risk was dropping dead from heart failure. In addition, she's never recovered her appetite for/interest in food since the surgery for Cushing's - once they removed the growth on her pituitary that was generating all the excess cortisol, her levels never really recovered.  So she now weighs 102 lbs and has even lost interest in chocolate.  She used to be a dedicated runner; she hasn't got the energy for it any more. I'm worried what a chemo regimen would do to an already less than robust person.

     Thanks for listening! I'm so anxious about her. 

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  • KorynH
    KorynH Member Posts: 301
    edited May 2012

    If your sister's original diagnosis was her2+, then it doesn't surprise me that she could have  recurrence esspecially without having had rads or Herceptin. The question about no SNB and ALND (axilary lymph node disection) is of one of a surgeon being completely untrained in SNB and unaware of the long term implicaitons of the aggressive unecessary nature of ALND.  I find that this occurs a lot in rural parts of the country and with older doctors. Hence the reason we survivors need to get the word out to other's who are newly diagnosed and researching their surgical options! There is a new test which was released this February that tests DCIS for a score similar to oncotype and lets a doctor know whether or not a patient would benefit from radiation. This was not available at your sister's original diagnosis so it wasn't standard practice at the time. Studies have since shown that some cases do benefit from radiation. At any rate, a MUGA scan should help her decide if she is healhty enough to tolerate Herceptin now, given her already weakened heart. Best of luck! She is very lucky to have you!!

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