I'm new to the site but not new to the disease.
I had my first partial mastectomy in June of 1996 at the age of 26. After finding the lump and it being passed off by the first Dr as a cyst, then a fibroadenoma by the second Dr, I finally got a third opinion. Although reluctant this third Dr agreed to take the lump out. Turned out it was a benign Phyllodes tumor and by the time it was taken out it had tripled in size and was making it way through my chest wall. What was supposed to be a simple lumpectomy turned into a partial mastectomy.
On my follow up visit I was told by this Dr not to worry, they got clean margins and it will NOT grow back, just a fluke. Back then there was NO literature on this type of tumor, I mean none so I had to believe what the Dr had told me. Two years later I found another lump, in the same place. I went back to the Dr who did the original surgery. Once again a core biopsy showed a fibroadenoma and I was told to watch and wait. Seeing as this Dr was a professional in the field of breast cancer and breast issues and worked for a clinic that only dealt with breast issues I waited. Six months later it was still there. They once again did a reluctant surgery and removed yet another Beging Phyllodes tumor. Long story short I just had my Fifth surgery to remove a Phyllodes tumor in the right breast, even though it is in the exact same spot the first one was found not one Dr I have seen will call it a recurrence. This time the Tumor is malignant.
I've been told absolute different opinions now from many, many Dr's in regards to this disease. I have been told that this type of tumor is NOT cancer although it has been proven to spread to lymph nodes and also to metastisize to the lungs and spine. It is NOT cancer although a benign tumor can turn malignant. I have been told that it is NOT cancer because the tumors do not respond to Chemo or radiation, Show me the studies that have been done to prove that, there have not been any. I have been told not to worry, it's not cancer although the life expectancy of someone with metastasis is three years.
Why is this disease being ignored? Because it doesnt effect enough people. So to all of us out there who suffer from this, Don't worry, It probably wont happen to your kids or the Dr you're seeing, you could die from it but who really cares, you're one in a million.
Sorry folks, first time I have vented my frustration for the simple not caring attitude of every Dr I have had. I want a mastectomy, I want radiation but I probably wont get it due to the lack of concern from Dr's and insurance company seeing it as too invasive for such a rare disease.
My thoughts and prayers for all of you dealing BC of any type and if anyone knows of a Dr that would show interest in my case, please free to email me personally.
Thanks for listening,Sue :)