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Information seeking in the Pacific Northwest


#1

My husband was diagnosed with Synovial Sarcoma within the past three weeks (this is from initial uncovering of masses, to needle biopsy to pathology to diagnosis). We had our first meeting with an oncologist this past Monday, and are going to be seen by specialists at the University of Washington on Tuesday morning. What I have heard is the UW is one of the best in the country, and have read that many of the specialists in the Sarcoma clinic are so dedicated to fighting this vile disease and have been awarded several research grants. All good signs I think? The reason for my post is that I am just not even certain what to be looking for or asking right now, and any advice that anyone can provide to me as it relates to 1) Knowledge and experience in treatment at UW and the Seattle Cancer Care Alliance and 2) information on participation in clinical trials vs. standard treatments etc. We want to be sure we are making the right decisions about treatment, and have to rely on the information the specialists are providing, knowlege and information, and instinct.

Just for some context, my husband is 47 years old and in excellent health. The only reason this was uncovered was we went to Urgent Care for something completely unrelated, had a chest x-ray and uncovered a mass on his lung. He has two masses on his lungs, one 13 cm and one 5 cm as well as smaller nodules as uncovered during the CT scan. Additionally, after a PET scan, another tumor was uncovered near his pelvis, not as large as the others.

Any information is appreciated. While I am researching as much as I can, I'm trying to feel "armed" when meeting with these doctors. Knowlege is power and ignorance is never bliss :-)

Thank you in advance for your replies. I am so thankful this forum exists!

Traceyb


#2

Hi Tracey, synovial sarcoma is a nasty demon. You are fortunate to be in a treatment center that is framiliar with this monster. ALWAYS stay positive. There are new treatments on the horizon. My son has been being treated for 2 years; he is 24 years old. There are many good people on this site who can offer support. Synovial sarcoma is treated and not cured. Some people has lived with this for many many years. Sometimes you are up and sometimes you are down. Sometimes good news and sometimes bad news. This disease makes you appreciate life and it’s little things at such a higher level. Love and hope to you and your husband. Be strong and trust the specialists.


#3

Thank you so much for your kind words and thoughts Ellen. I’m sorry your son has been hit with this at such a young age. My thoughts, prayers and hopes go out to you and your family.

Ellen said:

Hi Tracey, synovial sarcoma is a nasty demon. You are fortunate to be in a treatment center that is framiliar with this monster. ALWAYS stay positive. There are new treatments on the horizon. My son has been being treated for 2 years; he is 24 years old. There are many good people on this site who can offer support. Synovial sarcoma is treated and not cured. Some people has lived with this for many many years. Sometimes you are up and sometimes you are down. Sometimes good news and sometimes bad news. This disease makes you appreciate life and it's little things at such a higher level. Love and hope to you and your husband. Be strong and trust the specialists.

#4

It sounds like the pelvis tumor is the primary and the lung tumors metastases. Are they considering surgery at all?

If not, does the treatment offered have the potential to make surgery possible at some point?

Regarding clinical trials, here is an article that explains the different phases:

http://sarcomahelp.org/sarcoma_clinical_trials.html

Here is a site to search for trials:

http://clinicaltrials.gov/

It has an advanced search so you can limit the search for a specific state for example. Usually, you would search for either synovial sarcoma, soft tissue sarcoma or solid tumor.

If it was me, I'd rather try the standard treatment first unless the clinical trial is similar to the standard treatment. (For example, palifosfamide may be an improved version of ifosfamide...)

In a difficult case like your husband's case, I would also consider second opinions, even if it means going out of state for them. The Sarcoma Alliance can provide financial assistance for second opinions:

http://sarcomaalliance.org/assistance.shtml

#5

Hi Tracey, its such a shock when you get the news and start trying to get your mind about this horrid desease. I’m the same age as your husband and was being treated for a sporting injury when diagnosed. I found it useful to be informed before seeing my specialist and have found the sessions with them to be far more valuable. Be careful with the information you find it can be scary, guide your heart. Even the most brave person is scared with this and he needs your support. Men like to provide and protect their women and he may also be dealing with this type of stuff. Let him know, even though you maybe concerned also, that’d you’ll be OK and get him totally focused on fighting the sarcoma plus dealing with the tough procedures ahead. Remember to try and find some joy amougst all this, during our treatment we took off and had a wonderful family holiday on a tropical island. At the time I was worried about money and my wife said not to worry and just go and in hindsight it was the best tonic. Good luck and I hope and pray that you get a good outcome. Gary


#6

Here is a good article I found which helped me dealing with prognosis survival %'s, which generally aren’t great for most of us with this disease. This guy had a great attitude with impossible odds and I admire his fighting spirit:

http://cancerguide.org/stats_home.html