Looking For New Gyn/Onc For UPSC - Need Suggestions

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Candlewood
Candlewood Member Posts: 27 Member

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!

 

 

 

 

Comments

  • Jacjac2
    Jacjac2 Member Posts: 44
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    MD Anderson

    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.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,388 Member
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    Candlewood, I am glad you

    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.  

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
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    MD Anderson

    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!

  • Red Corvette
    Red Corvette Member Posts: 114 Member
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    Two Best Gyne/Oncs In Chicago Are

    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

  • jodil
    jodil Member Posts: 42
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    need new gyn onc

    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. 

  • Armywife
    Armywife Member Posts: 451 Member
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    MD Anderson

    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.

  • Soup52
    Soup52 Member Posts: 908 Member
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    Candlewood, I have a friend

    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
    Candlewood Member Posts: 27 Member
    edited June 2018 #9
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    Armywife said:

    MD Anderson

    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.

    Which doctor do you see at MD

    Which doctor do you see at MD Anderson? 

     

  • Candlewood
    Candlewood Member Posts: 27 Member
    edited June 2018 #10
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    Jacjac2 said:

    MD Anderson

    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.

    Thanks for the info.  I read

    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?

  • Candlewood
    Candlewood Member Posts: 27 Member
    edited June 2018 #11
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    Candlewood, I am glad you

    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.  

    Thank you for the link!  My

    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.

  • Candlewood
    Candlewood Member Posts: 27 Member
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    MD Anderson

    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!

    I will look into her studies.

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

  • Candlewood
    Candlewood Member Posts: 27 Member
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    Two Best Gyne/Oncs In Chicago Are

    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

    Thank you Red!  I was just

    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!

  • Candlewood
    Candlewood Member Posts: 27 Member
    edited June 2018 #14
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    jodil said:

    need new gyn onc

    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. 

    I am looking for an NCI

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

  • Candlewood
    Candlewood Member Posts: 27 Member
    edited June 2018 #15
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    Soup52 said:

    Candlewood, I have a friend

    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

    Good to know - thank you for

    Good to know - thank you for your input!

  • It happened to Me
    It happened to Me Member Posts: 206 Member
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    University of Iowa in Iowa City

    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
    Candlewood Member Posts: 27 Member
    edited July 2018 #17
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    University of Iowa in Iowa City

    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.

    Thank you for the information

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

     

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
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    Mayo

    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
    CheeseQueen57 Member Posts: 933 Member
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    Mayo

    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. 

    Mayo

    Can‘t go wrong with Mayo!

  • derMaus
    derMaus Member Posts: 558 Member
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    Cancer Types

    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
    Candlewood Member Posts: 27 Member
    edited July 2018 #21
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    derMaus said:

    Cancer Types

    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.

    Thank you for the tip!  I don

    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!