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Looking for advice


#1

My dearest 45 yr old best friend has been diagnosed with synovial sarcoma (as of today…can you believe it took so long?) (don’t vote for Trump, but he has a point with the Canadian heath care system) My biggest concern is that his doctor is starting with Chemo and not Radiation. Every reputable cancer hospital in our big city of Toronto apparently starts with radiation before surgery. He lives in a town with some great specialty clinics outside of Toronto, and their front line of treatment is Chemo before radiation…then radiation and then surgery.

Are we doing the right thing in putting all our faith in this doctor who says that this our first line of defence. we certainly cannot start from the beginning again…

Any feedback would be greatly appreciated,

Dawg


#2

Corr, you said it took so long … how long?

Is there a second opinion that you could get by going to the big city? I don’t have SS, but I have an unusual form of inflammatory arthritis. I had my doubts about the treatment plan I got from my rheumatologist in Ottawa, so I found a research clinic at UHN (University Health Network) that gave me a second opinion. That changed the course of my disease, and my life!

Seenie from Mod Support


#3

The decision whether to start with chemo, radiation or surgery really depends on the individual patient’s situation. Usually the bigger the tumor, the more likely chemo will be recommended. One thing is sure, your friend needs to see a sarcoma specialist, may be even more than one. The good news is that Ontario has many specialists to choose from. Here is a list:
https://www.cancercare.on.ca/cms/one.aspx?pageId=10355


#4

Hi There, I am sorry that sentence was from another post I made that I copied and pasted from, and was hoping to be able to edit, but cannot seem to figure it out???
Anyway, He has waited a couple of months to get this diagnosis and his lump has grown substantially. Thanks, to amazing responses it seems Chemo is a common choice sat the from line treatment. And I was happy to see that he is being treated by a sarcoma specialist (which was verified by someone so kindly sending me a a list of the ons in Ontario.


#5

Corr, I’m glad that the good people here have given you some reassurance. The kind person who gave you the list of doctors is Elodie: she is our top moderator here and she is truly amazing! A survivor herself, she is incredibly knowledgeable, and very generous with her support.

We’re glad that you found us, Corr, and we hope you’ll stay with us and share peer support with others.

Wishing all the best to you and your friend.

Seenie from Moderator Support

PS Editting is very easy once you know how. Just below your post you will see a Reply arrow. To the left of that are three dots. Click there. You will see a pencil (for Edit). Click on the pencil and the rest is obvious.


#6

Thank you so much!! My friend’s doctors are on that list which is very reassuring. He has had a ton of information thrown at him, so right now asking questions on a forum or doing the “never should be done” internet search is too much for him. He had an all clear on his chest X ray, waiting for results from a CT he had 2 days ago. Monday he goes in for an info session on his chemo regime. I am so happy I found this support group/forum, he means the world to me and without sounding sexist he is a stubborn man who doesn’t like to ask for help, or ask questions!!.lol.


#7

We’re glad that you found us too, corr. You’re right about over-searching the internet: coming here usually gives a more balanced view.
Take good care of yourself as well as your friend.
Seenie


#8

Do you know what kind of chemo they are going to put him on? Do you know if surgery is an option?

I have synovial and the main effective treatment is Surgery. I am very very leary of Canada’s treatment of Synovial Sarcoma, I know of someone who went through 4 different cycles of chemo and was never once given Ifosfamide which is shown to be most effective chemo against Synovial

and sorry…I voted for Trump, tried my hardest to find a way to vote for Hillary …just couldnt do it!!


#9

I am coming up close to a year being disease free. My doctor had me go through chemo, (Doxorubicini, Ifosfamide) and than radiation (with chemo - Cisplatin) ending with surgery. I had stage II in my chest. My SS had no metastatic growth. Surgery got clear margins and all margins were negative. I found out after surgery from pathology, the SS was only 5% viable, so 95% dead. So my body really responded to chemo. At least that’s what my doctor said, I think it was my positive attitude;)

Anyways, every one is different but tell you friend to stay positive, WIN every appointment. You guys got this! Fuck Cancer


#10

Thank you so much! He started Chemo yesterday, an aggressive regime but he is willing to bring it on. His biggest fear was the CT on his lungs, kept him up all weekend, and as he sat waiting in the office for the doctor, the nurse asked flippantly “have you gotten your CT results?” My friend was kind of shocked that it was asked so flippantly. My friend said “this is the biggest thing for us today, no we haven’t gotten any results?” This apparently lovely and efficient nurse after running out of the room to do various things, ran past my friend’s room, popped her head in and said "oh ya, chest Ct is clear! He (my friend started crying. Probably the first time he could release. So, today is the second day of chemotherapy and so far so good. He will be doing this aggressive regime until January. After that, as you know will be Radiation and then surgery.


#11

My brothey has Ss. He is 15. The tumor was in foot. First drs cut the tumor with margins, then brother got the chemo. No radiation…today was the first day of chemo…