Cancer or not cancer, that is the question?

Osullybird
Osullybird Member Posts: 3
edited March 2014 in Breast Cancer #1
Hi all,
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
osullybird@hotmail.com

Comments

  • MAJW
    MAJW Member Posts: 2,510 Member
    #2
    confusion.......
    Sue, I can't imagine how confusing this must be......is it or isn't it? I think someone else has posted about having your exact kind of "cancer or not cancer" and had some of the same questions......Go back to some of the older posts and check it out.......

    Do you live near a large city, where they could possibly have a large training/teaching hospital? Such as Johns Hopkins, Mayo CLinic, Duke University or the likes? If so try one of those places.....AND contact the American Cancer Society.......I feel certain they maybe able to steer you in the right direction.......

    I wish you the best......
  • emilyjane91
    emilyjane91 Member Posts: 3
    #3
    Hi sue,
    I have recently been
    Hi sue,

    I have recently been diagnosed with a malignant phyllodes tumour at only 19 years old, I was told a year ago after having a biopsy on a lump in my right breast that it was a fibrodenoma too and that it would disperse by itself, but it didn't and grew bigger quite fast. I returned to the hospital and had the lump removed only to be told a fortnight later that it was a malignant phyllodes tumour. Very confusing as a year previous to this they were telling me it was something different and benign but now malignant. It is so confusing as I have been told chemotherapy and radiotherapy do not work for this type of tumour and doctors I have seen haven't been sure on what the best treatment for this tumour is as it is so rare. I have had more surgery to remove the surrounding tissue leaving clear margins. I am now awaiting results to find out the outcome of surgery and what happens next. I have been told radiation works in some cases, so may be given it when I go back to see results. I know how frustrated you must feel about the situation because I am in the same boat. I have been given all sorts of information from all sorts of specialists. But I have always been told it is cancer, borderline and malignant means cancer but it is so different to any other form.

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