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Anyone know of a UPSC specialist in Australia?

trinoz
Posts: 6
Joined: Oct 2012

Hi there girls,
I'm in my second week of chemo after having surgery. I ended up with stage 3a UPSC. My diagnosis is a bit open-ended as I had a serous spot on an ovary and they're not sure if I have 2 primaries or a spread from the uterus.

What I'd like to do however is to get a second opinion on the extent of the surgery I had as he removed 18 pelvic nodes, no aortic and only part of the omentum. The surgery was done laparoscopically. The surgeon agreed to be more aggressive if it turned out to be a higher stage but because he thought it was contained to the uterus during the op, and didn't believe it was UPSC despite histology from the D&C he didn't go further. Staging came back high grade serous with positive washings, ovary and possible lymphovascular infiltration.

I'm trying to find out the gold standard for surgery for late stage UPSC and to find out whether it would be of benefit to my survival rates to go back in and get more nodes, particularly the aortic nodes and the rest of the omentum.

The gyn/onc swears he's done enough and emailed me a study from 2005 on lymph removal numbers in early stage endometrial carcinoma. This worried me even more as I am not early stage, nor is this normal endometrial cancer and 2005 is a long time ago I would think.

I've search high and low to find a specialist in Australia who knows about UPSC.
If anyone knows one I'd love to know who they are.
Also, I'd love to know about numbers of lymph nodes removed and if someone knows a current study with gold standards for surgery.

Thanks in advance :)

Ro10's picture
Ro10
Posts: 1358
Joined: Jan 2009

Sorry you have had to join our group, But welcome.  I am sorry I can't help you with a doctor in Australia, as I am in the US.

Have you looked up the NCCN guidelines.  It states the recommendation for different types so cancers.   Most doctors go by these recommendations.

I too have UPSC stage 3-C diagnosed in 1/09. I had 5 of 25 lymph nodes positive as well as abdominal washings positive.  My report also said possible lymphovascular invasion.  Our pathology reports sound similar.  I had DaVinci Robotic surgery.

My treatment was Taxol/Carboplatin three treatments, then 28 external radiation treatments and a 28 hour internal radiation followed by 3 more taxol/ Carbo treatments.  I had a reaction to taxol with the first treatment, so my taxol infusions were over 5  hours.  But at least I can get the medication.  I got the chemo treatments every three weeks.

Good luck in your journey.  Feel free to ask any questions or express any concerns or fears.  Some of probably have had the same fears or concerns.  There are no dumb questions So ask away.    In peace and caring.

NorahS
Posts: 93
Joined: Dec 2012

Many thanks Ro. Smile

 

In my many times of lurking and (so far) few times of posting, I missed any link to this valuable resource. 

I have just now taken my first look at the NCCN guidelines and will need to go back and re-read parts for full absorption.  

ConnieSW's picture
ConnieSW
Posts: 539
Joined: Jun 2012

Sorry you haven't gotten any more responses but Ro's is a good one.   Do we not have any other Aussies on the site?  I wonder if it would be worth checking on the ovarian board.  Good luck.

trinoz
Posts: 6
Joined: Oct 2012

Hi there lovely ladies. Thanks for your replies. Maybe it was on the Ovarian board that I'd noted other Aussies. I'll look there. 

Thanks for that website. I found the exact information I was looking for. According to them they recommend removal of aortic lymph nodes as well as pelvic. They also recommend complete omentum sampling/ removal.

No point chasing this further. Don't really have the energy. What I will do however is find someone with experience in treating UPSC for a second opinion. Hopefully they could become my new gyn/onc. 

Keeping the Faith-Trinoz

ConnieSW's picture
ConnieSW
Posts: 539
Joined: Jun 2012

Let us know how things go.  Will be rooting for you.

willbesurvivor's picture
willbesurvivor
Posts: 50
Joined: Jan 2011

My mum went to this man - http://www.obermair.info/about/professor-obermair/ in Brisbane. He has done studies on UPSC.

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