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Topic: Phyllodes - Aggressive - Stage IV - I need answers, please

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Mar 22, 2018 12:34PM - edited Mar 22, 2018 12:41PM by Roxanna

Roxanna wrote:

I discovered a lump in my left breast in 2013.  Long story short - It was a Phyllodes Tumor.  I wanted a mastectomy, but my doctors insisted that I was over-reacting.  They told me it was too much surgery.  They did  a lumpectomy, which didn't really work, and frankly was a waste of precious time.  Even though some doctors advised radiation was not likely to work, others recommended it, because they said that they had nothing else to offer.  I went through the radiation, plus what they call the boost -  and the first doctors were right - it didn't work. A mastectomy was not done until 2015.  The pathology report showed that they did not get clear margins, so I had wide margin excision surgery to remove skin and muscle tissue.  The area to close-up was so large that I needed a 4" x 12" skin graft taken from my leg to cover it.   
However, even so, I was left with a huge indent in my chest.  I had planned to go for  'scar revision' surgery, when I discovered that my cancer was back.  It took me awhile to convince my doctors, so I insisted on a CT. 

The CT confirmed that the cancer had met. to my left lung.  A Thoracic surgeon removed 5 tumors and at first, he was hopeful.  The optimism was short-lived - within 4 months, new tumors were growing, now in both lungs.  

The odd thing is, other than having a nagging little cough,  I feel fairly healthy.  

So...   Where do I go from here?  The doctors have now suggested Doxorubicin, (Chemo) which they are fairly certain will do nothing other than make feel sick.  They say that the odds are only 20% or less that Chemo will be of benefit, and even then will only add about two months of life - and those 2 months will be at the wrong end of the wellness scale.  I get the feeling that they really don't want me to take the Chemo treatments - and I have no one that's been through this to guide me. 

Some doctors have suggested I try to get into a clinical trial.  However, none of them have any idea who would be conducting one anywhere in North America.  They've wished me luck. There sure doesn't appear to be anywhere near where I live.  I know of no centre that specializes in advanced Phyllodes.  Most trials I have learned about are what to do in the early stages.  They are of no benefit to me.  

My doctors apparently know less than me. Very few of them have worked with a Phyllodes patient before, and none with one as aggressive as mine.

I have now learned that there are lymph nodes between the lungs that show signs of involvement.  

I'm feeling a little lost.  I have been the one to find my cancer, chase down treatments and surgeries, and I am completely alone in looking for a needle in a haystack.  Has anyone had success with Phyllodes with alternate drug therapies, or with Doxirubicin in combination with other drugs that have had some success?  Phyllodes is a SARCOMA - so it behaves differently than most other breast cancers, which are carcinomas.  If you are dealing with Phyllodes, or a body trunk sarcoma and know something that might help - I really want to hear from you.  

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