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Real members of MyBCTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has anyone been diagnosed with soft tissue breast cancer.

A MyBCTeam Member asked a question 💭
Indianapolis, IN

I was diagnosed with high grade malignant neoplasm with spindle cells and epithelioid cells. The doctor said it's rare and aggressive because it's in the soft tissue instead of the ducts. I was wondering if anyone else has experienced this before

June 1
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Reactions
A MyBCTeam Member

JessaRay, Hoping that you can get results and approvals soon.Good wishes to you. Virtual hug.

June 1
A MyBCTeam Member

@A MyBCTeam Member Adding in more prayers for answers and quick responses to the referrals so you can get started with the best protocols for your diagnosis! Please keep us posted! Hugs!

June 1
A MyBCTeam Member

My referral was submitted today. So now it's the waiting game. My PCP is also doing a referral for a PET scan. We are still waiting for more test results from the biopsy that was sent for more extensive testing

June 1
MyBCTeam

What you're describing sounds like it could be a phyllodes tumor or a similar rare soft tissue breast cancer — these start in the connective tissue of the breast rather than the milk ducts, which is what makes them less common than typical breast cancers.

Most breast cancers begin in the ducts or lobules, so a soft tissue Show Full Answer

What you're describing sounds like it could be a phyllodes tumor or a similar rare soft tissue breast cancer — these start in the connective tissue of the breast rather than the milk ducts, which is what makes them less common than typical breast cancers.

Most breast cancers begin in the ducts or lobules, so a soft tissue diagnosis like yours is genuinely rare. That said, you're definitely not alone in facing an uncommon or aggressive breast cancer diagnosis. Some MyBCTeam members have shared experiences with rare and aggressive breast cancer types, including those that don't fit the "typical" mold. It can feel isolating when your diagnosis doesn't match what most people talk about, but connecting with others who've faced aggressive or unusual diagnoses can be really helpful.

A few things worth knowing about rare, aggressive breast cancers:

- High-grade means the cells look very different from normal cells and tend to grow faster
- Aggressive types may require more intensive treatment approaches
- Your care team may refer you to a specialist with experience in rare breast tumors

It's really important to ask your doctor about getting a second opinion or a referral to a major cancer center that specializes in rare breast cancers — this can make a big difference in your treatment plan. You deserve the most expert eyes on your case! 💛

June 1

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