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Recurrence after mastectomy

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nipab
nipab Member Posts: 46

I am scheduled for a mastectomy in March. It is nipple and skin sparing mastectomy on left side with reconstruction. I just went for second opinion and that surgeon said that if I go for lumpectomy- chemo-radiation than my chance of recurring is 5-7% and if I go for this type of mastectomy followed by chemo then my chances of recurrence are 4-5%. The difference is not much compared to issues that may come up with mastectomy and all the plastic surgeon visits.

can someone please give me an insight of what is the data of recurrence. I have left a message to my oncologist but asking here for broader reach.

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  • moth
    moth Member Posts: 3,293
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    I think the data your surgeon gave you sounds right.

    The only thing I'd want to ensure you're clear on is that the mastectomy recurrence rate reduction is specifically local recurrence in that breast area. The mastectomy has no impact on metastatic recurrence.

    There was a study that came out last summer comparing outcomes of lumpectomy & rads v mastectomy. BCO wrote about it here https://www.breastcancer.org/research-news/lumpect...

    In this study (& another one which came out a few months later) lumpectomy was associated with better OS after controlling for stage and other factors.

    I'm sorry you're having to deal with this again

  • sun-shine
    sun-shine Member Posts: 30
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    I had a mastectomy in October. My surgeon told me that mastectomy would reduce about 1.5% recurrence rate compare to lumpectomy-radiation option in my case.

  • beesie.is.out-of-office
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    nipab,

    Your risk of a localized recurrence depends on the pathology of your cancer and your surgical margins. So it's impossible to say what your risk will be after a lumpectomy without more information, some of which won't be available until after surgery. Even with a mastectomy, the local recurrence risk often is as low as 1%-2%, but it depends on the pathology (tumor size, aggressiveness, nodal involvement) and surgical margins. It sounds as though your surgeon gave you some average figures but your actual risk level after each of these surgeries unfortunately can't really be known until after surgery. At this point, it all just estimates and averages.

    Additionally, as moth point out, the choice between a mastectomy and lumpectomy + radiation only affects your local (in the breast area) recurrence risk. Your distant/metastatic recurrence risk is totally separate, and isn't affected by the type of surgery.

    Lastly, since diagnosis has a big impact on these risk figures, could you clarify your diagnosis? You mention chemo but you list your diagnosis as being DCIS. DCIS is Stage 0 and is sometimes considered a pre-cancer (that's controversial). Because DCIS cells are confined to the milk ducts of the breast, DCIS is a local disease and chemo is never given for pure Stage 0 DCIS. If chemo is on the table as a possible treatment, this would mean that your diagnosis also includes some invasive cancer (DCIS and invasive cancer are often found together). Could you clarify?

  • nipab
    nipab Member Posts: 46
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    Beesie, you are right. I do have DCIS and Invasive both. I don't know how is that possible as one means inside ducts, and another means it spreads outside the ducts!

    I have triple negative cancer. here what it says on report,

    ULTRASOUND-GUIDED CORE BIOPSY, LEFT BREAST AT 6 O'CLOCK N+3.5 CM:

    -INVASIVE DUCTAL CARCINOMA WITH APOCRINE FEATURES, GRADE 3.

    -THE INVASIVE CARCINOMA MEASURES 5 MM.

    -DUCTAL CARCINOMA IN SITU, NUCLEAR GRADE 3.

    -IMMUNOPEROXIDASE STAINS ARE PERFORMED AND REVEAL THAT THE INVASIVE DUCTAL CARCINOMA STAINS AS FOLLOWS:

    -ER (VENTANA, SP1): NEGATIVE (0% NUCLEAR STAINING).

    -PR (VENTANA, 1E2): NEGATIVE (0% NUCLEAR STAINING).

    -Ki67 (VENTANA, 30-9): POSITIVE (UP TO 20%).

    -HER2/neu (VENTANA, 4B5): EQUIVOCAL (SCORE = 2+).

    -P63 (VENTANA, 4A4): NEGATIVE (POSITIVE IN DCIS).

    -CALPONIN (CELL MARQUE, EP798Y): NEGATIVE (POSITIVE IN DCIS).

    My HER-2- FISH report came back negative.

  • beesie.is.out-of-office
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    It's very common to have IDC (invasive ductal carcinoma) and DCIS together. Most often, breast cancer starts as DCIS. But the cells in the duct can continue to evolve and at some point, they undergo a biological change that gives the cells the capability to break through the wall of the duct. Once the cell breaks through the duct, what used to be a DCIS cell is now considered to be an IDC cell. Because breast cancer develops this way, about 80% - 90% of patients with IDC also have some DCIS.

    When IDC and DCIS are found together, the DCIS needs to be surgically removed but otherwise can be ignored. The diagnosis, staging and treatment plan are all based on the IDC, because it is the more serious condition. Anything done to address the IDC will be more than sufficient to address the DCIS.

    So it appears that your diagnosis from your biopsy is 5mm of triple negative IDC. What I don't know is whether the 5mm is what was removed during the biopsy and whether the area of IDC may be larger, or whether the 5mm is the estimate for the total size of the area of invasive cancer. Your imaging reports might indicate an estimated sized but until it's removed during surgery, it's impossible to know how much will be IDC and how much will be DCIS. That said, with a triple negative invasive cancer, usually at about 5mm in size, chemo comes into play. So that explains what your surgeon said.

    This graphic from the BCO site helps show how DCIS develops to become IDC, and you can see how it is possible to have both:

    image



  • nipab
    nipab Member Posts: 46
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    Beesie, I think 5mm was removed at the time of biopsy. Size of total tumor is somewhere close to 2 cm. My question is if I have mastectomy, my body go through such a turmoil and if the recurrence chances are very close to lumpectomy, then why should I go for mastectomy.

    I was going for mastectomy because I thought that will lower my chances to 1-2%, is it not true?

    Thank you for explaning IDC and DCIS, now I got it!

  • beesie.is.out-of-office
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    nipad, the following study is pretty extensive. It appears that the risk of local recurrence after a MX is significantly tied to the pathology and biology of the cancer. In some cases the risk is in the range of 2% (ER+, HER2-, t1 or t2 tumor, node negative, grade 1 or 2) but in other cases the risk is higher.

    Locoregional recurrence patterns in women with breast cancer who have not undergone post-mastectomy radiotherapy https://ro-journal.biomedcentral.com/articles/10.1...


    Specifically, take a look at Table 1: https://ro-journal.biomedcentral.com/articles/10.1...

  • ava55
    ava55 Member Posts: 42
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    hi there,

    I was told the recurrence for Lumpectomy v Mastectomy was upto 15% for Lumpectomy versus I think it was3% for MX. I assume it depends on what you have been diagnosed with as Bessie highlighted. For me I felt that the mx was a better option but everyone has different views and my DCIS was more widespread covering 20% of the breast so I was happy to get rid of it and didn’t find the operation too difficult or painful at all.


  • nipab
    nipab Member Posts: 46
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    Thank you for the replies, Bessie, Ava55, Sun-Shine and Moth. Truly appreciate your help and experience in the matter.

  • LivinLife
    LivinLife Member Posts: 301
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    I think Beesie's info on type, grade, size, etc. is important. I had an initial 3 cm Grade 3 DCIS with comedo necrosis; smaller after biopsy. My surgeon told me 10% chance of recurrence with the MX. She didn't mention what it would've been otherwise bc lumpectomy was not an option for me b/c I couldn't have rads..... These are tough decisions and very individual as well. Really important you are comfortable with your decision... as comfortable as one can be anyways....

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
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    Thanks for the info Beesie. After neoadjuvant chemo I ended up being pT0N1 4mm, which was still a great response. I was unsure of radiation because both my breast surgeon and RO said that prior to a recent change in recommendation, they used to only refer patients who were N4. The study makes mention of that. I am thinking that this study may have been one of the more recent ones to influence the change in recommendation. It's good to know the reasons for why they felt it was important.

  • salamandra
    salamandra Member Posts: 736
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    if the recurrence chances are very close to lumpectomy, then why should I go for mastectomy.

    This is my understanding of some of the reasons women who do have a choice (many women do not) might choose a mastectomy:

    • They have a high lifetime risk for breast cancer and want to reduce the chances of a new cancer (i.e., not just concerned about recurrence)
    • They feel strongly that they do not want radiation. Without radiation, lumpectomy is not equivalent to mastectomy for risk reduction. This may be because of health concerns, logistical concerns, or something else.
    • They have don't want to deal with the logistical and emotional roller coaster of mammograms and other screening (this would require a double mastectomy). OR, they are not confident that that they will have ongoing affordable healthcare to access screening and biopsies.
    • They've had lot of issues with their breasts that require biopsies or surgeries even if they don't turn out to be cancerous, and they don't want to deal with that any more.
    I'd also say that different women have different relationships with our breasts, so the emotional element of a mastectomy can vary a lot.

    I personally have a high lifetime risk for breast cancer, but none of the other categories applied to me. When my surgeon told me I could keep my breast without a higher risk of recurrence, I released a breath I hadn't even known I was holding and it was very obvious to me that lumpectomy+radiation was my preference. That said, I've already had to have one follow up biopsy and also already feel somewhat fed up of the screening. So I would say I have a bit more emotional understanding now that I used to of why a woman would opt for mastectomy and prophylactic mastectomy.

    As others have said, it is a very personal decision.

  • nipab
    nipab Member Posts: 46
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    Absolutely true, Salamndra. I do not know if I am at a high risk of getting cancer. But I got one in 2015 and back again in 2022, not to mention 3 biopsies in 6 years, so I decided to go for mastectomy. I can only go for implant on left side as right side got radiation last time and my plastic surgeon is alone in this hospital so cannot do DIEP. I have to go to Boston for that and MGH/Dana Farber all hospitals are backed up due to covid. I thought I will get mastectomy on left now and then once everything is back to normal, I can get the right side done with DIEP in Boston.

    Little did I know that there is still a risk of cancer even after mastectomy. So here I am asking for advice, I guess I just need to bite the bullet and go for it. I have appointment with surgeon before my surgery to ask this specific question, so fingers crossed!

    Thank you Livinlife, something to look forward to!

  • ava55
    ava55 Member Posts: 42
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    One thing that might be worth considering nipab if you are deciding on what route.

    I researched so many options re DIEP and implant and found very little info on implants. So I was very sure I wanted a DIEP until my ps said it wouldn’t work on me as didn’t have enough fat. Initially I was disappointed but am so happy now I wasn’t able to go this route.

    The implant procedure includes a mesh sling ACD (bilateral mx) over the muscle and this created the natural look so they are symmetrical. I couldn’t believe how fast the recovery time was and am really pleased with how they feel and the minimal scarring. I was back in work in three weeks and feeling very much myself. I was surprised that all my old bras fitted perfectly and you couldn’t tell.

    Maybe it was because I read so many stories that gave me the impression that the implant would feel alien and not me but it was a very different and positive experience (although was very happy to get rid of the drains after surgery.

    Waking up from the surgery and having no bruising and minimal pain I felt like not enough info is out there on the positive stories. So hope this helps.

    Good luck with it!

  • nipab
    nipab Member Posts: 46
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    Thank you ava55. I went with left mastectomy. it has been about 4 weeks, I have expander and feels heavy and tight. I guess it will go away once implant is in. Going for chemo next week so implant has to wait for few months.

    My right side is radiated so implant is not a good idea. I may have to go DIEP route but will not think about it until I forget the pain of the left side. Just like I did not think about second pregnancy until I forgot the nausea and postpartum pain of the first one ☺

  • serendipity09
    serendipity09 Member Posts: 769
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    nipab - like you I experienced the TE's to be so heavy. I had the exchange to implants done and they are even heavier than the TE's. For me, they definitely feel foreign. Many women are very happy with them. I wanted to go with the less invasive surgery. I had to have radiation after the implants were placed due to a recurrence so now one is bigger than the other. I'm scheduled for a DIEP toward the end of summer to remove the implants.

    Good idea not to think about things until you have to, I wish I would've done that instead of stressing out so much.

    All of it was doable for me, but I didn't know that when it all began. I don't think any of us do.

    I hope everything goes well for you!

  • katg
    katg Member Posts: 209
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    nipab, Salamander and all.

    I was told from the gate with my breast surgeon, that because my tumor was 5cm and my breast is not large, a lumpectomy is not a choice if margins are needed. Even after 13 rounds of chemo, my tumor shrunk 1/2. After a decision to remove the breast as chemo became a no option, i was given the best choice they said for me, which was a skin saving expander. Not bigger, just 600 CC of saline are in it. I am at the Cit of Hope and genetics are often offered for their research. I have BRCA-2. I was ES-+/PR-/HER2-, then my tumor gave me a HER2+. I cannot wait for the other breast to get cancer. I will say they are both even in size, the real and fake. But the real sags. Small size or not. For me, I am not going to worry about reoccurrence. I am now on Herceptin and projera? forgot its name, for the next year every 3 weeks. I asked my MO if there is any way to know if it works. She looked right at me and said no. In my case, i would likely be tested regularly. They always rate you based on the tumor size at first. 5 cm...5.2 before chemo started. That and my HER2 positive have altered my journey.

  • katg
    katg Member Posts: 209
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    nipab

    I forgot to say i loved your example. My expander feels heavy too. I touch it and am reminded it is fake. i am still numb with spasms or pings here and there. For nearly 7 weeks. I am just grateful the tubes are out. 3 plus weeks of those was the worst part. Plus, the left side is clear and will not have the 3 lymph nodes out. Less pain. I had chemo first to shrink the tiumor.