Breast cancer er/pr+, her-, recurrence and bilateral

[2ndtimeve]

Hello,

I had ER/pr+, her- breast cancer 5 yrs ago in one breast. I had lumpectomy and radiation with axillary node clearance on that side, with 1/19 involvement.

Roll forwards to now, I have recurrence in the same side as above in soft tissue, I also have another Er/pr+ her-, in the other breast, I haven’t had any treatment yet, but they suspect no node involvement. Tamoxifen for 5 yrs (only stopped taking because advised to, ahead of surgery).

I have a nodule in my lung on the same side as the new cancer, lung biopsy has been done and we wait to know if it is lung primary, or breast secondary.

I’ve done quite a bit of research to understand my type of cancer. I’ve spoken to plastics who seem to agree with my, current, position of wishing to have a bilateral mastectomy. I understand that this won’t completely irradiate my potential of future recurrence, but will aid to a reduction in chance of recurrence.

I also understand that, in theory, hormone therapy such as tamoxifen provides a good prognosis, however it hasn’t been truly successful for me. I also know that there are alternative hormone therapy to move To.

I am due to have my consultation with my surgeon next week and am concerned that he may try to convince me to have just a lumpectomy.

Can you advise, as I have had radiotherapy to one side, I understand that I can’t have this a second time, and in which case my original side of b/c would be mastectomy, what I want to try to move forwards to is therefore having the second breast (which now has cancer) also removed in its entirety…hence a bilateral mastectomy.

Sorry for ramblings, I hope that I’m making sense?

Many thanks

X

[arty1]

@2ndtimeve Im so sorry youve had the news of a recurrence and a new primary in your other breast also , it must be a shock to the system, especially with being told you have a lung module too I hope the biopsy results come back quickly and you can get some answers on that x

I was diagnosed with IDC (ER/PR- and her2 + ) with multi focal DciS in July last year , my surgeon advised me that she would still happily attempt lumpectomy and advised that the outcomes are usually the same in terms of choosing Lumpectomy or mastectomy .

However I was concerned they wouldn’t get clear margins and asked for a MX , my surgeon was happy to carry it out and I did actually have such extensive DCiS and IDC she said that actually mastectomy was the right choice . I then went on to have chemo and Herceptin therapy .

As I’m hormone neg I haven’t had the experience or AIs however I think you need to have a good conversation with your team with regards remaining on Tamoxifen or changing to another . It’s frustrating to have a recurrence when you’ve done everything possible to prevent it

With regards requesting bi lateral mastectomy ,you’ve ever right to request this and be heard and listened to , in your shoes I’d want the same , you have a new primary and a recurrence so I’m not surprised you like a bilateral surgery .

I requested my right breast be removed as well but my surgeon said “we won’t take a healthy breast “ so in your case you have your argument for mastectomy .

I found it helped to have my husband with me in appointments so he could advocate for me, and also wrote things down , it helps when there are specific things you want to discuss .

I found my breast nurses were always really great for chatting through things and hopefully in your case too you can chat to your breast nurse .

You can also contact the Breast Nurses here for advice x

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Arty1

[mrsjelly]

Good morning @2ndtimeve

I am sorry to read your reason for being on the forum. Whilst I haven’t had a recurrence I did have have bilateral breast cancer. IDC and DCIS in the left one. MRI showed it was widespread and scattered throughout so mastectomy was the only option. The MRI also revealed two anomalies in the right one. Those were biopsied and 50 days after initial diagnosis, DCIS was confirmed in the right one. Whilst breast conserving surgery/lumpectomy was an option as the areas were small, my gut told me I wanted a mastectomy. Like @arty1 was told, the risk of recurrence the same. My head told me the less breast tissue I had, the better, plus I didn’t want to potentially return to theatre if the margins were not clear.

The surgeon was supportive of my decision. I had the options of going flat, implants or autologous surgery (DIEP). I had a double mastectomy with immediate reconstruction with implants. I have made a good recovery and am happy with the outcome.

Mine was/is triple positive so I had neoadjuvant chemo and targeted therapy. I’ve 4 trastuzumab to go. Also on Letrozole and Zolendronic acid. I didn’t need radiotherapy. As I had no node involvement and opted for the mastectomies this meant it wasn’t indicated.

I would hope that given your circumstances, your decision for wanting a double mastectomy is entirely reasonable and will be respected.

[Nurse_BCN]

Hi 2ndtimeve,

Thanks for your post.

Thank you for sharing so much detail about your situation. It sounds like you’ve been through a lot, and it’s understandable to have concerns about the next steps.

When breast cancer comes back in the same breast after breast-conserving surgery and radiotherapy, a mastectomy is usually recommended, as you say, because radiotherapy to the same area can’t normally be given again.

For the new cancer in your other breast, surgery options often include another lumpectomy or mastectomy, and this is something to discuss with your surgeon next week. As @mrsjelly says, it sounds as though you have given this lots of thought and have carried out lots of research. It’s understandable to feel worried about being persuaded toward a lumpectomy. It’s important you feel heard in the appointment, and as @arty1 says, you might find it helpful to bring someone with you and write down the rational for your decision, and any outstanding questions you have. You could also contact your breast care nurse in advance of the appointment to talk things through with them.

You’re right that hormone therapy, such as tamoxifen, is an important part of the treatment for ER/PR-positive breast cancer, and there are other options if tamoxifen hasn’t worked as well as hoped. Your oncology team can talk through alternatives, such as aromatase inhibitors or other targeted treatments, depending on your menopausal status and cancer staging once you have had the surgery.

The lung nodule biopsy will help clarify whether the nodule seen on your scan is anything to be concerned about, and that result will guide your overall treatment plan.

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