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Posted by TorUkie on Mar 17, 2020 3:31 pm


I have recently been diagnosed with PEComa (a very rare sub-type of sarcoma) and wanted to leave a message here, in case anyone who also has it wants to connect. (Not much activity on this forum, it seems).   Currently, I am post-surgery and on a quarterly follow plan. No chemo, no radiation at this point.



Re: PEComa

Posted by Lianne_Moderato on Mar 17, 2020 3:42 pm

Hello TorUkie‍ 
Nice to hear from you. Yes I did search on this site not only for PEComa but also Perivascular epithelioid cell tumours and did not come up with anything as yet.
My understanding of it is the majority are non-cancerous but can also be cancerous in rare cases. Where do you fall?

Thinking of you

Re: PEComa

Posted by TorUkie on Mar 17, 2020 4:26 pm

Lianne_adminCCS‍ - it falls under sarcoma.  It luckily lacks many of the aggressive features (I.e. high mitosis and necrosis), but is very large.  The sarcoma specialist was very clear with me that it's cancer but of a very rare type, so there is no clarity on prognosis. 

Re: PEComa

Posted by Lianne_Moderato on Mar 17, 2020 4:44 pm

Thanks for the clarification. I assumed so because of where you posted but wanted to clarify for myself and others. 
Hopefully you will be able to not focus on it too much between your followups and find some peace.
Thank you for posting it here so it will be brought up in a search going forward.


Re: PEComa

Posted by Boby1511 on Jul 31, 2020 1:13 am

I too have sarcoma... ur post is a little old are you still on site?
i had surgery in May 2020 and currently doing doxorubicin chemo. Losing my hair. They found a new tumour last week so I am dying. It’s inoperable and doc said the chemo will only slow it down but since it’s only been 2 months since surgery I likely have little time left. I hope you are fairing better. 

Re: PEComa

Posted by TorUkie on Sep 9, 2020 10:15 pm

Hi Boby1511‍ 

I am spending lest time on the site, so apologies for late reply. I am so sorry to hear about what you are going through. A few questions, if I may:
- Are you currently treated at a high-volume Sarcoma Center? It is critically important (there is a lot of evidence on this), that being under the care of very experienced doctors makes major difference.  There are a few places in Canada (PHM in Toronto, one in Ottawa, etc.), which are designated Sarcoma centers. If you are there - great. If not, it would be critical to get a referral, as very few "regular" oncologists see enough of this type of cancer to be on top of the most current research, etc.
- Have you sought the second opinion?  Again, I would HIGHLY, highly recommend that you do.  It is a no regrets move, and may result in a different perspective and a different set of treatment options
- Have you joined a Sarcoma facebook group (it's called Sunflower Brigade), which is run out of Dana Farber Cancer Center in Boston.  It's a large group with super-helpful insight. Also, has a lot of 'thrivers' - sarcoma patients which have been successfully surviving for a really long time. It's a hugely inspiring group of people and I have learned A TON from them. 
- Have you watched things off the onclivetv on YouTube? I found it hugely helpful as it is first hand high quality doctor-focused info. (You might have guessed that my tendency is to get quite deep into research).  Lots of info on treatment optins, drug choices, etc.  One of the helpful things is a very clinical look at the effectiveness of chemo, as it is not black-and-white and there might be options. 

Please feel free to message me, if helpful to chat.  This is such a rare thing, that it is hard to get proper care.

On my end, I am currently waiting for my recent quarterly scan results.  It's never easy... 

Re: PEComa

Posted by Boby1511 on Sep 9, 2020 11:57 pm


hi there. Did they get all your tumor out?
i have sarcomatous overgrowth with makes mine very aggressive. I was referred to a sarcoma team in Hamilton. Mine originated in the uterus which is very rare in this rare adenosarcoma group. Lucky me. I already have a recurrence so there is not much they can do for me now. Doing doxorubicin max dose before my second tumor was known. Just hoping to slow it down. Hoping this finds you in peace.

Re: PEComa

Posted by Cre8ive on Oct 2, 2020 6:47 am

I also had surgery for an Adeno Sarcoma with an overgrowth - surgery was end of April - did radiation and now doing Chemo.  I would love to touch base with you as it is such a rare cancer.


Re: PEComa

Posted by TorUkie on Nov 9, 2020 9:26 pm

Hi Cre8ive‍, sorry I didn't respond sooner. These days I am spending less time on the site (mostly when my anxiety starts spiking before the next set of scans).

Yeah, not easy if the disease is rare with so little known about it.    am glad you found this site, as everyone has been so helpful and kind and thoughtful. 
Regarding the people who know as much as one does, I am currently on a Facebook page which is specific to Pecoma, and on one hand it is invaluable, as I have learnt so much.  But it is also quite heartbreaking.  I am sure there is likely a similar community which is focused on adenosarcoma. 

On my end, things are well - my last scans were NED, the next ones are coming up in early December, and I am quietly (and anxiously) hopeful. 

To All

Posted by Taz on Nov 10, 2020 2:10 am

Hi everyone !
second paclitaxel treatment today. stopped the previous treatment of viorelbine. it didn't work unfortunately. my mets had a field day in that timeline. frustratedkeeping my head up. having a better day today.a dear girlfriend from high school came to visit. we had 2 sleep overs together... lol she left this morning. really lifted my spirits ! I'm 59. live alone now and just since sept. my 19 yr old went to college. ....soo glad !
warm and healing thoughts to y'all

Re: PEComa

Posted by Cre8ive on Nov 10, 2020 7:25 am

Hi PEComa.  No worries.  I also spend lvery, very minimal time on this site or any cancer stuff.  It's too heartbreaking and I need to focus on being positive.  I've a good support system.  I am wondering however if you have considered going for a second opinion to Princess Margaret or Sloan Kettering.  You can email me at:  hasmigu@gmail.com  rather than go through this forum.  Cheers.


Re: PEComa

Posted by TorUkie on Nov 10, 2020 12:05 pm

HI Cre8ive‍, I am currently at Princess Margaret and had a second opinion at Dana Farber Cancer Center in Boston (the key doctor who researches pecoma works there).