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Looking For New Gyn/Onc For UPSC - Need Suggestions

Candlewood
Posts: 13
Joined: Jun 2018

Hello all - I have been checking this board since I was first diagnosed with stage III UPSC in March 2017.  I have found this board to be such a help in every sense of the word - thank you everyone!  This will be my first post as I am looking for a new gyn/onc.  Had Robotic total hysterectomy + BSO, 6 rounds carbo/taxol and 30 rounds of EBRT.  Finished end of 2017.  Found a lump in Feb. 2018, thought it was scar tissue since it was under one of the port sites, waited and felt it was enlarging so had it checked out this past May.  Turned out to be metastatic serous carcinoma, same morphology as original cancer. Had it removed and the doctor said that he hopes it was a port site metastasis (site contaminated with cancer from trocar) but he was not sure.  Tested for ER was weakly positive, PR was negative and that was the end of his suggestions.  I asked if I need pap smears and he said not with this type of cancer.  I asked if he could test my tumor for Her2/Neu, he said he would do that.  I am waiting for the results. Once I get the results, I want to try a new doctor as I don't think this one has any other treatments if it comes back again.  He said we were very limited in what we can do.

 

I live in Illinois and we have Northwesern Memorial, University of Chicago close by and Mayo Clinic 5 hours away.  My first choice is MD Anderson but if that is too much logistically, I would consider the other alternatives.  I am looking for suggestions for doctors who are familiar with how to treat UPSC, some are better than others.  Any suggestion would be greatly appreciated!

 

 

 

 

Jacjac2's picture
Jacjac2
Posts: 44
Joined: Feb 2016

I have used a doctor at MD Anderson, Houston area.  Dr. Bevers is good.  I live in Florida and while I have a doctor there, the hospital is associated with MD Anderson.   I occassionally go back to Bevers for second opinion of how things are going.  I just dont like the one doctor only routine.

Candlewood
Posts: 13
Joined: Jun 2018

Thanks for the info.  I read his bio and he sounds very good as do all the doctors at MD Anderson. Trying to figure out who is best for dealing with a UPSC patient.   How is his bedside manner?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2542
Joined: Mar 2013

Candlewood, I am glad you found us and have been reading the pages through all of it, but sad that your first post had to be because of this news.  While I think Rush is that way, and I don't know any doctors up that way, you can search for gyn onc's here:

http://www.foundationforwomenscancer.org/find-a-gynecologic-oncologist/

I think you have to love your doctor since you are putting your life in their hands, and if you don't it is time to look for someone/somewhere else.  

Candlewood
Posts: 13
Joined: Jun 2018

Thank you for the link!  My deliema now is in determning how to discern who knows best how to deal with UPSC.  I have been researching and it is hard to find that type of specific information.

CheeseQueen57's picture
CheeseQueen57
Posts: 781
Joined: Feb 2016

I saw Dr Westin at MD Anderson. I only saw her once but while I was watching a seminar last week sponsored by the FDA regarding immunological treatment in gynecological cancers 2 studies that she was conducting were quoted. Not sure if she does a lot of work UPSC.  Good luck!

Candlewood
Posts: 13
Joined: Jun 2018

I will look into her studies.  Thank you for the suggestion!

Red Corvette
Posts: 105
Joined: Jan 2016

Hello Candlewood,

After much research and consultations with both doctors, imho the 2 best upsc doctors in the Chicagoland area are Dr. Jean Hurteau at Northshore Evanston and Dr. S. Diane Yamada at University Of Chicago. Both are wonderful and extremely knowlegable in upsc cancer cases. Mrs. Red treats with Dr. Hurteau who has a terrific bed side manner and is a skilled oncology surgeon who also has a wonderful staff. We consulted with Dr. Yamada when we needed a second opinion and she is also terrific and highly skilled in this area. Both are excellent doctors. We looked at MD Anderson too but felt no need to go out of state with these 2 terrific doctors and medical facilities here in Chicago. Good luck to you in this crazy journey, stay strong, you will get through this.

Red

Candlewood
Posts: 13
Joined: Jun 2018

Thank you Red!  I was just looking into Dr. Yamada and then got your message.  I see that she practices at Silver Cross Hospital in New Lennox as well as Chicago which is a plus as I am in the suburbs.  She seems to be on the ball!

jodil
Posts: 42
Joined: Nov 2017

i live in milwaukee and go to the Aurora Cancer Center in grafton. My oncologist is john scott maul and he is fantastice. I was referred by my gyn onc, Scott Kamille, Aurora St. Lukes, milwaukee. I trust them completely to manage my USPC and colon cancer. Dr. K doesn't have the greatest bedside manner but he is trying AND he is an excellent surgeon. He has an excellent team, I never feel rushed. Dr. Maul manages my chemo and he always suggesting alternative adjunct tx such as accupuncture, reiki. 

Candlewood
Posts: 13
Joined: Jun 2018

I am looking for an NCI facility and I dont think the one you suggested is NCI but thank you for the suggestion!

Armywife's picture
Armywife
Posts: 265
Joined: Feb 2018

I have done my second opinions with MD Anderson, and continue to go every six months.  Their genetic counseling team is amazing and awesome and kind!  Their  gyn-onc department head is Karen Lu - very busy but supposedly the best in the US.  I have never met her but heard great things about her.  They have a large gyn-onc team.

Candlewood
Posts: 13
Joined: Jun 2018

Which doctor do you see at MD Anderson? 

 

Soup52's picture
Soup52
Posts: 894
Joined: Jan 2016

Candlewood, I have a friend with reoccurance of Fallopian tube cancer and she has worked with drs at university of Chicago . They have done a couple trials with I,munotherapy for her. I don’t remember the drs name but Gynecholigical oncologist here in Peoria recommended her. She was pleased with the docs there also

Candlewood
Posts: 13
Joined: Jun 2018

Good to know - thank you for your input!

It happened to Me's picture
It happened to Me
Posts: 204
Joined: Apr 2014

I was diagnosed in Davenport, IA and they sent me to the U of I, OB/GYN Oncology.  I had UPSC as well.  There is a team of doctors who work together and meet every Tuesday and go over each case.  I had my surgery and my chemotherapy there.  I know it's probably a 4 hour drive from Chicago.  Some of the best ob/gyn oncologists work there.  My Dr. was Dr. Bender, he goes all over and does presentations and is a gem of a doctor.  I hope you find an OB/GYN oncologist that you trust.  I know I did.

Candlewood
Posts: 13
Joined: Jun 2018

Thank you for the information.  I will keep it in mind!

 

BluebirdOne's picture
BluebirdOne
Posts: 191
Joined: Jul 2018

I live near the Chicago area, retired to Michigan. I am going to Mayo in Rochester next Tuesday and surgery for hysterectomy Thursday. I have been so impressed with my interactions so far. I had an apppointment at NW, but their schedulers made a mistake and gave me a non-surgical oncologist. I did not want to wait for another appointment so I called Mayo who got me in within days, surgery scheduled one week. In the end I think that the top hospitals and doctors have access to the latest treatments and protocols but opinions may differ about how to treat. I went with Mayo because of their extensive clinical trials, also offered at the other top cancer hosptials in the country. Goodluck to you. 

CheeseQueen57's picture
CheeseQueen57
Posts: 781
Joined: Feb 2016

Can‘t go wrong with Mayo!

derMaus's picture
derMaus
Posts: 552
Joined: Nov 2016

Let me add something: My (great, new) oncologist is in private practice but also on faculty at UCLA's tumor research facility. When I was interviewing him as a potential replacement for my previous doctor, I asked if he worked with a gynecological cancers specialist. His response was pragmatic: "We medical people love to categorize things but the reality now is that it's coming down to tumor profiling and genetics. I'd encourage you to focus on that part of your treatment: your tumor profile." That made PERFECT SENSE to me, don't know if it's applicable in your case but might broaden your provider choices if you already have a Foundation One report. If it's definitely worth pushing to get one.

Candlewood
Posts: 13
Joined: Jun 2018

Thank you for the tip!  I don't have a Foundation One report.  Didn't know what it was until you metioned it.  I googled it and I am going to look further into doing this.  Thanks derMaus!

 

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