Breast Cancer and MS: SO I have lurked... - My MSAA Community

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Breast Cancer and MS

mintlatte profile image
7 Replies

SO I have lurked here on occasion, but I have very recently been diagnosed with Breast Cancer. It has been caught really early, so I feel good about that, but I do have concerns about making the correct treatment decisions and managing risks.

I have been on Ocrevus since 2020, and am aware of the potential increased risk, knowing that risk, I am struggling to find data on risk of recurrence, which is something I would be very interested in.

Also wondering if there is anyone else is the same situation -

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mintlatte profile image
mintlatte
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7 Replies
Angler_Eric profile image
Angler_Eric

Hi mintlatte !

Sorry to about your diagnosis. I'm in a similar situation, though I was diagnosed with prostate cancer.

I too have been on Ocrevus for awhile and I've been aware of the link to breast cancer and I'm searching for more data. Finding even less information than you.

While I'm still struggling with the diagnosis and treatment choice, prostatectomy, I hope you can find peace and health with yours.

If in my research I come across anything I'd be happy to share it with you if you'd like?

All the best,

Eric

mintlatte profile image
mintlatte in reply toAngler_Eric

That would be awesome!! My husband has Metastatic Prostate Cancer, so I am always sorry to hear about men going through prostate cancer journeys - on the plus side - he has been living with it for 5 years now and there have been a lot of developments and advancement of treatment even in that short time frame.

Nothing like a double whammy though - I would be grateful if you shared anything you come across .

I have found one recent paper (although not specific to Ocrevus) that is in regard to breast cancer and MS, and while it may seem odd, I think that some of the concerns addressed here ARE more generally applicable (hormone therapies and MS outcomes, concerns re: treatment leading to higher incidence on metastases) journals.sagepub.com/doi/10...

Sadly, I think we both had the misfortune of joining a bit of a minority population. That said - I am keeping my hopes high, and planning on focusing on the body part that is trying harder to actually take me out, which seems to be the general advice - oncology is priority over our neurology concerns.

ahrogers profile image
ahrogers

I work in radiation oncology so see a lot of people with breast cancer. I have had 2 patients with MS and breast cancer. Neither were on Ocrevus. One on Gilenya and the other may have been on Gilenya as well. I had a male patient years ago with cancer who was on Copaxone. I have worked radiation oncology for about 15 years and haven't seen many people with MS. I have seen many people with other autoimmune diseases though. I can ask the doctor I work with to search her journals for any info regarding Ocrevus and cancer recurrence.

I was skeptical about the initial findings in the Ocrevus trial showing the increase in breast cancer rates because the comparator group had zero cases. Considering one in 8 women will be diagnosed with it I think the trial stats were odd. I know the numbers started to even out as they followed people longer. However, not sure how many people they followed long term or how cancer cases outside of trials are being reported. I know I was on a clinical trial for Ocrevus 2016-2018 but am no longer followed. I have had several basal cell skin cancers. If I hadn't had my first one 2 years before going on Ocrevus I may have correlated the two. It is possible neurologists are more likely to report about patients on Ocrevus who are diagnosed with cancer than they are to report patients on other DMTs which would skew the data.

I hope your cancer journey goes smoothly.

mintlatte profile image
mintlatte in reply toahrogers

Thank you! I appreciate the info. I don’t actually blame Ocrevus, being real here, I have enough other risk factors that it is hard to point any fingers at all, but I do want to make the most informed decisions I can going forward. I also question whether it should be listed as a side effect of Ocrevus. I am coming to the consensus to just treat the cancer as normally appropriate, and just keep communication lines open with my care team in regard to all the other junk in my trunk.

ahrogers profile image
ahrogers in reply tomintlatte

Yes, I don't think treatment recommendations would be different and your doctors would also be able to research any caveats of treating someone on Ocrevus. They may have you hold off on treatment until you have completed breast cancer treatment, especially if chemo is needed.

Tazmanian profile image
Tazmanian

Good luck

mrsmike9 profile image
mrsmike9

Hugs...

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