Need a hospital recommendation for recurrent endometrial cancer

Posted by dj12 @dj12, Jun 16 12:44pm

I am currently receiving treatment for recurrent endometrial cancer. I am in Lancaster PA and want a second opinion from a large Cancer institute.
My CA-125 was dropping from 900 to 60 but has jumped back to near 80.
I am on Jemperli and can't take platins anymore because I have had severe reactions.
Thanks for any help.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

MD Anderson is THE top cancer hospital in the US. They treat nothing but cancer.

Sloan Kettering is the second.

You can self refer online to both. Visits can start online. I have had friends lives and treatments change when they have sought more info at MD Anderson.

Despite what your current oncology team is telling you, there are other ways to evaluate and treat. Sometimes it can change everything. Sometimes I just protects function of other organs. Sometimes it can give you more time with family and loved ones.

More information helps-always.

I tell everyone I know to get second opinions at major cancer hospitals as early as possible while they still have energy.

Gofundme can help raise money for travel if needed.

Also, there are cutting edge cancer hospitals in other countries.

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@bcarter7587

MD Anderson is THE top cancer hospital in the US. They treat nothing but cancer.

Sloan Kettering is the second.

You can self refer online to both. Visits can start online. I have had friends lives and treatments change when they have sought more info at MD Anderson.

Despite what your current oncology team is telling you, there are other ways to evaluate and treat. Sometimes it can change everything. Sometimes I just protects function of other organs. Sometimes it can give you more time with family and loved ones.

More information helps-always.

I tell everyone I know to get second opinions at major cancer hospitals as early as possible while they still have energy.

Gofundme can help raise money for travel if needed.

Also, there are cutting edge cancer hospitals in other countries.

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MD Anderson is the best for new and innovative approaches to treatment.

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@dj12

No, I just want to make sure I am getting the best treatment. The first time I had cancer I was told I had a 5 percent chance of it coming back. I was horrified when it came back 8 years later.
There are so many new treatments and my oncologist said I should see a liver doctor for my metastatic cancer to the liver.

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@dj12. I'm circling back to inquire what you've decided to do. Have you investigated where you'd like to go to get another medical opinion? Have you made any appointments?

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I have nothing but great things to say about memorial sloan Kettering. Cutting edge and they’ll never give up on you.
Don’t assume big cancer centers are more expensive. The surgery and care I got at MSK was two thirds the cost here in Alaska.

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@blanchette

Hi again - I think it's pretty standard to get a 2d opinion on cancer treatment, and I'm guessing your oncologist wouldn't object to a request for a referral to an expert s//he has a good relationship with.
I have stage IVB endometrial cancer with mets to the lungs. My onc asks all of his gyn cancer patients to get a 2d opinion from Dr Armstrong (she's only 1 hour away at a top comprehensive cancer center). He has an excellent working relationship with her and trusts her to recommend patient-specific treatment for the present and future.

I was able to get an appt within 2 weeks. She spent plenty of time with me reviewing everything. She and her team produced a multi-page report confirming that my current treatment is gold standard, and outlining approaches to take in the future should my condition change. The facility was top notch (I think they all are) and parking in the building was surprisingly cheap! (Cheaper than my suburban onc's office park. For some reason, expensive parking irks me.)

Of course, you have excellent cancer centers a bit closer to you in Philadelphia. But I just thought I would add my personal experience in a location not that much farther from you.

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@blanchette I have the same diagnosis. Would love to chat.

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@lkslaughter

@blanchette I have the same diagnosis. Would love to chat.

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Welcome, @lkslaughter. You have stage IVB endometrial cancer, is that right? Is this a new diagnosis for you? I look forward to learning more about you.

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I just got back from MD Anderson for a second opinion there were wonderful every step of the way its typically a short visit day one meet the doctor, day 2 get any testing done in my case as all my scans were up to date, I stayed 2 days. MDA has a travel department they can setup hotel reservations at deeply discounted rates all hotels have shuttles to the medical center. They will give you their proposed treatment plan and communicate with your local oncologist.

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@tbkomparda

I just got back from MD Anderson for a second opinion there were wonderful every step of the way its typically a short visit day one meet the doctor, day 2 get any testing done in my case as all my scans were up to date, I stayed 2 days. MDA has a travel department they can setup hotel reservations at deeply discounted rates all hotels have shuttles to the medical center. They will give you their proposed treatment plan and communicate with your local oncologist.

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@tbkomparda Thank you sharing this.

Did you have to travel a distance to be seen at MD Anderson? Has your treatment or follow-up plan changed as a result of your consult with MD Anderson?

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@naturegirl5

@tbkomparda Thank you sharing this.

Did you have to travel a distance to be seen at MD Anderson? Has your treatment or follow-up plan changed as a result of your consult with MD Anderson?

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I traveled from Chicago to Houston. MDA gave me several treatment options I am currently at an NCI cancer center I see my oncologist tomorrow the Doctor at MDA was an expert in my type which is a bit rare he didn't agree with my current regime told me to stop my estrogen inhibitor recommended another one, switch from carboplatin to Avastin he assured me that I have not exhausted all my options which gave me peace of mind.

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@tbkomparda

I traveled from Chicago to Houston. MDA gave me several treatment options I am currently at an NCI cancer center I see my oncologist tomorrow the Doctor at MDA was an expert in my type which is a bit rare he didn't agree with my current regime told me to stop my estrogen inhibitor recommended another one, switch from carboplatin to Avastin he assured me that I have not exhausted all my options which gave me peace of mind.

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I am very happy for you. The process there is exactly as you have described. Based on our own experience with this clinic, you can have full confidence in the information you were given. Best of luck.

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