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Just joined

Just joined

Posted by AC on Feb 15, 2017 10:10 pm

Hello all still figuring the site out but I already feel inclusive...having a rare incurable sarcoma is lonely...anyone out there have undifferentiated pleomorphic sarcoma?

Re: Just joined

Posted by mama_cita64 on Feb 16, 2017 2:50 am

Hi 

I was diagnosed with a rare soft tissue sarcoma CIC-DUX4 in Feb 2016 and had surgery to remove the tumour on my right glute.  I then 25 rounds of radiation and another surgery July 2016 to remove surrounding tissue and muscle.  I have CT scans every 3 months and was encouraged to on a quality of life basis as it is so rare.  I am doing pretty good so far still lots of pain but manageable not able to do much as it is hard to sit for any length of time.  I am able to spend quality time with my family and my grandchildren keep me positive.  My scans so far show a small spot on my lung which they are monitoring. I am from Vancouver and have an excellent team of doctors.
Bottom line you are not alone if you would like to share feel free to reach out to me.

Beth

Re: Just joined

Posted by Survived99 on Feb 16, 2017 7:31 am

Hi AC
I don't have what you have but although there is some uncertainty as to my diagnosis, Most pathologists say that I have a radiation induced sarcoma (peripheral neural sheath?). Mine is rare too. 
So far all my treatments have been only surgery and I was told that it was 100% removed. Where do you go for treatment? I am reading that we should go to a hospital that specializes in sarcomas. There is Princess Margaret in Toronto and I think that's it. 
Best of luck with the journey.

Re: Just joined

Posted by Shauna5 on Feb 16, 2017 8:32 am

Hi AC / Survived99

I don't have the same cancer as you, but thought I would reach out anyway.  I was diagnosed with leiomyosarcoma in August 2016.  I was sent to Princess Margaret in Toronto  right away.  So very thankful I was.  I have had the best care.  The sarcoma clinic and Dr's there are awesome.  I've had surgery to remove tumour end surrounding tissue.  Now followups every 3 months.  Sarcomas are rare and not a lot of people to talk to from what I've found.  I wish you well on your journey.  

Re: Just joined

Posted by Kolombe on Feb 16, 2017 2:21 pm

Hi AC, welcome to the community. I have a very common cancer so I consider myself lucky. I hope you find some close connections here :)

Cheers
Cathy

Re: Just joined

Posted by Survived99 on Feb 16, 2017 8:35 pm

It's weird, but I got 'discharged' from Mount Sinai / PMH because they say it isn't a sarcoma. But pathologists at Memorial Sloan Kettering (New York - they also have a specialty in sarcomas) and Sunnybrook say it is. The PMH pathologist says although it doesn't look/act/respond/etc, etc. like metastatic Breast Cancer that is the most likely diagnosis "until proven otherwise" (exact words!). I see a breast oncologist (cancer in '99 was triple negative breast cancer) and she says I'm cured of the original cancer and it can't be a metastase. frown

I'm waiting for a referral to Memorial but my doc is sure taking her time! She said she would in October, then I reminded her in Dec, Jan and now Feb. Still nothing! My only saving grace is that the PMH docs, before the pathologist changed the diagnosis, said that they would recommend 3 month CT scans for follow up and nothing else. And that's what I get from the surgeons so I shouldn't complain.

Re: Just joined

Posted by Dragonfly1970 on Feb 25, 2017 9:09 pm

Hi Ac, I don't have the same type but I was just recently diagnosed with liposarcoma of the left thigh for the second time. I am waiting now for surgery. This is a very scary time and I wish you all the best in your journey. I think it's great to have a save haven here to vent and to share. Good luck 

Re: Just joined

Posted by Gaylene on Apr 28, 2017 10:47 am

Help AC: I don't have your type of cancer but I do have colon cancer. This has been a helpful web site for me and I hope you find it the same. It is just nice to connect to people who do truly understand what you are going through and how often your emotions just get the best of you. Good luck through your journey and keep in touch with your new support family here,
Gaylene LeBlanc