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What to do? Synchronous bilateral breast cancer, multiple types

diamante67 Member Posts: 4

I have been diagnosed with synchronous bilateral breast cancer, multifocal on the left site.

Right breast IDC, 4mm, pT1aNxM0, ER 30% weak-strong, PR 90% weak-strong, HER2 1+, Ki-67<5%. DCIS present. Atypical lobular hyperplasia found.

Left breast multifocal, Stage IA pT1cN0M0. a) IDC, 1.1 cm, ER+PR+HER2-;Ki-67 5-10%. b) ILC,6 mm,ER+PR+HER2-,Ki-67<10-20%, margin focally positive for the IDC (although surgeon claims that in reality margins are negative, as per pathologist's note "tumor abuts the false 3 o'clock anterior margin, however, re-excision of margin of this 3 o'clock site is negative for tumor). DCIS present. Atypical ductal hyperplasia found.

Sentinel nodes on the left side were clear.

The right side cancer was found thanks to surgery. A preliminary ultrasound guided biopsy must have missed the cancer cells and was determined to be benign tissue, but the surgeon decided to remove it. Since the cancer was found after surgery, the sentinel nodes on the right side were not removed.

I consulted both with my surgeon and with a second surgeon at UCSF and I am not getting a clear indication on what to do next. I have three options. 1) no other surgery; only radiation+tamoxifen, 2) removal of possible cells left on left side+sentinel nodes on right side, followed by radiation and tamoxifen, 3) DMX + sentinel nodes on right side, followed by tamoxifen.

I really don't know what to do next. My surgeon claims that mastectomy and radiation have the same recurrence rate so she is steering me towards options 1 or 2. Surgeon from UCSF says that this is true for recurrences from the same tumors, but mastectomy is more effective in preventing new tumors (and yet, he is leaving completely up to me the decision). Should I ask for a third opinion? If so, where should I go? I really hoped UCSF would help me figure out what the next best step would be.


  • moth
    moth Member Posts: 3,293

    Have you had Oncotyping done? The left breast tumor a) would qualify for oncotyping.

    It is true that there are studies showing that lumpectomy + rads have same or *better* outcomes than mastectomy. Remember local recurrence is once again treatable. Mastectomy doesn't lower the risk of metastatic recurrence & that's the one that's deadly.

    I think often when the oncologists leave it to the pt the reality is that there isn't any evidence to strongly suggest one route over another. Sorry you're in this position - it sucks

  • lillyishere
    lillyishere Member Posts: 769

    How do you feel about radiation vs. removing the breast tissue?

    I opted for BMX and same as you, a new cancer was found on the other breast thanks to surgery. Scanning doesn't catch much especially ILC. If you are worried about future local recurrence that is not caught on time and spreads to other parts of the body, I would go with surgery on removing all breast tissue and SLN before that happens.

  • diamante67
    diamante67 Member Posts: 4

    thank you for your recommendation. I am scared about mastectomy +reconstruction, but I think I am more concerned about another tumor coming up. The tumors I had were all detected by MRIs, but the biopsies did not pick up the correct tissue (not to mention one biopsy clip “fell off” which led to the doctor almost missing one of the cancers on the left during surgery). As I think about it, and how messy that story was, it kind of makes me think that there could be similar situations down the road. Radiation does not scare me too much, my friend had it and her skin did not react too badly, but in my case it would be bilateral which I understand can b harder as well.

  • WC3
    WC3 Member Posts: 658


    Have you seen an oncologist yet? Also, have you had genetic testing to look for gene variants associated with increased risk of breast cancer?

  • diamante67
    diamante67 Member Posts: 4

    I did, but we have not clarified treatment as of yet. Just looked at options around hormone therapy and discussed oncotype dx testing, which I am told won’t affect the decision about further surgery. In terms of genetic testing, I have a variant of unknown significance

  • diamante67
    diamante67 Member Posts: 4

    @moth (not sure how to reply to specific posts here, yet): tell me about the issue with metastasis because that's the part I am having a hard time wrapping my head around, and I see that unfortunately that's been your situation. So, it is possible that they remove the primary tumor, the lymphnodes are clear, and yet years later this darn thing can spread to other parts of the body? I thought that if one was able to "catch it early", that would prevent it from spreading :( (You can tell I am very new to all of this).

    Two surgeons told me that a followup mastectomy would reduce the chances of a new primary tumor in the breast, vs radiation - one surgeon is at Memorial Sloan Kettering and one at UCSF; this does not seem to line up with what you said and what I read in general (that mastectomy or lumpectomy +radiation are equivalent); I wonder if they are saying that because I have multiple tumors and they are/were in both breasts? Even then, the dr at UCSF said the choice on what to do is mine :(

  • moth
    moth Member Posts: 3,293

    Hi diamante,

    so yeah, you can remove it all, have clear lymph nodes (like I did), do chemo & rads and it can come back. We do not understand it fully but there are some theories that some tumors are metastatic at presentation (& might or might not get wiped out by chemo). The other thing we know is that tumor cells can spread throught the blood stream - they do not need lymph to travel, they can travel through the blood. And all it takes is one cell to go travel somewhere, lie dormant for a while and then wake up. Again, we do not understand what triggers the dormancy, what allows them to hide from the immune system, or what triggers re-awakening and growth.

    We cannot see individual cells so we can really never say we're free of cancer. That's why after treatment for early stage, most oncologists use the phrase "no evidence of disease" Doesn't mean it's not there, means there's none that we can see.

    Catching it early is absolutely no guarantee it won't come back to kill you; yup, I went from Stage 1A to Stage 4 terminal because breast cancer is still unpredictable & while the majority of patients experience excellent 5 - 10 yr survival, it's not *everyone* & there are still plenty of people on the wrong side of the stats curves.

    We've known for many years that a mastectomy did not affect rates of metastatic recurrence (but it did lower rates of regional - ie in breast - recurrence). What some of the new research is suggesting is that for some people mastectomy leads to worse outcomes

    Here's the BCO write up of the very large study comparing breast conserving surgery & rads vs mastectomy & overall survival. They tried to match stage, grade & any other confounding factors they could.

    I know it's a lot to take in & process. Keep asking whatever questions you have!

  • ALE777
    ALE777 Member Posts: 6

    Wow, that is really weird how similar your situation is to what I am going through. I had multi centric cancer on the right side with 2 small tumors. When I went in for a breast MRI on both, they saw something that my surgeon said did not look like anything but they did a biopsy anyhow. They said biopsy was benign but since they planned on doing a lift reduction on left side to match right mastectomy reconstruction, they cut that part out. Turns out the biopsy missed the cancer on the left. I then had to do a 2nd surgery on left SLN. That came back negative. The surgeon said since he basically already did a lumpectomy that I should just do radiation and be done.

    After the 2nd surgery I developed an infection and lost the right side expander reconstruction so now I am talking to a different plastic surgeon. She said she was concerned about the left side because after they cut out the part that ended up having cancer the plastic surgeon moved all my tissue around so was questioning what the radiation targeted.

    Now I am trying to figure out next steps. Do I see a new breast surgeon for follow up care and to get a second opinion?

    Did they do a 2nd surgery on the right side SLN? What did you end up deciding to do for followup care?

    I hope all went well and you are well on the road to recovery.