Desmoid fibromatoses found in breast of 19yr old female

Posted by beckyolson33 @beckyolson33, Jun 10 8:13am

My daughter has gone through her GYN to a dermo, had an ultrasound, biopsy of the tumor, followed by months of testing on that biopsy for inconclusive results. She was then sent to our breast cancer specialists here in Idaho. They agreed it needed to be removed in full, but referred her to leave Idaho and have the surgery done elsewhere. We are now traveling down to the Huntsman cancer center in SLC Utah. Just finished an MRI after the initial meeting with the breast surgeon and the breast reconstructive surgeon. My questions: has anyone else heard of this type of tumor? Do you know if alternatives to surgery have been successful? Chemo? Radiation?

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I had to read about this kind of tumor https://www.mayoclinic.org/diseases-conditions/desmoid-tumors/diagnosis-treatment/drc-20446388

So it is non-cancerous in the sense that it does not spread to other parts of the body, but can grown where it is located and affect organs. Surgery, radiation and chemo may be used. It says that if it has grown to involve organs, some tissue may be left during surgery and those other treatments might help.

I don't know if anyone can chime in with actual experience. You might also try breastcancer.org, to get more opinions.

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Thank you for the speedy response. As of right now, the Huntsman center wants to do a full mastectomy on the affected breast. I was hoping for some non-surgical procedures and was hoping someone would have some firsthand experience.

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@beckyolson33

Thank you for the speedy response. As of right now, the Huntsman center wants to do a full mastectomy on the affected breast. I was hoping for some non-surgical procedures and was hoping someone would have some firsthand experience.

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I am sending you a private message.

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I don't like to say this publicly but I think breastcancer.org might be more helpful. This kind of tumor is rare and not sure how many can come back with personal experience on the Mayo site. Maybe. But more chance on breastcancer.org.

A mastectomy is hard for a young person. I have had two and am "flat: but was 63 and could care less.

If doctors want to do a mastectomy there must be a reason. Is the tumor threatening to grow near or around internal organs? If so it seems much harder to deal with. As a parent I would probably support the idea of mastectomy if the doctors can explain why it is needed.

There may still be radiation or chemo according to that site. With breast cancer they sometimes shrink tumors before surgery using chemo, so you could ask about that.

I preferred having both taken off. We have a right to symmetry. For a person with potential for partners or breastfeeding, I would think keeping one is a good idea.

Is this a matter of survival? Can you ask that? It that context, loss of a breast is just something to accept even if acceptance is a hard process.

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breatcancer.org is all about breast cancer. If nothing else, there are moderators that could point you in the right direction. I had a dbl mastectomy the end of2022. It was right for me. I agree to ask questions of the medical team on why this is being recommended.
Keep us posted.

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A friend had chemotherapy in the arteries that feed the tumor. A procedure that was successful and left her without scarring.
You might send results to a medical oncologist and a radiation oncologist. Surgeons often recommend surgery. And surgery might be the best chance at preventing recurrence.
Radiation has been used successfully with desmoid fibromatosis, proton radiation and cryotherapy.
It is easiest to send copies of all reports and then to schedule video conferences. Memorial Sloan Kettering has the reputation but, more importantly, experience with this type of tumor. They will do genetic testing to determine the risk of recurrence.
Bless your efforts with success.

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Appreciate this advice so much, thank you! Just got results from the MRI looks and like the left breast has some “extremely dense fibroglandular tissue.” We are hoping that doesn’t lead to a double mastectomy.

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@beckyolson33

Appreciate this advice so much, thank you! Just got results from the MRI looks and like the left breast has some “extremely dense fibroglandular tissue.” We are hoping that doesn’t lead to a double mastectomy.

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How large is the tumor?
My understanding is that desmoid fibromatosis doesn't spread from one breast to another.

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