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.

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@dj12 - Deborah K Armstrong at Johns Hopkins in Baltimore is not far from you. She is a nationally recognized expert in gynecologic cancers. Fairly easy to make a prompt 2d opinion appointment. Johns Hopkins is a top-rated hospital for cancers. Good luck

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@dj12 I've been where you are with recurrent endometrial cancer. Mine was recurrent endometroid adenocarcinoma about two years following initial diagnosis and surgery. I was shocked and very frightened. For me, chemotherapy was not recommended however I did follow the recommendations for radiation therapy all at Mayo Clinic. I'm two years out from the recurrence and radiation and so far my follow-up appointments have show no evidence of disease.

I don't have a specific suggestion. I do recommend that if you would like to get an appointment ar a larger cancer institute that you locate one on the following website:

National Cancer Institute-Find an NCI Designated Cancer Center:

-- https://www.cancer.gov/research/infrastructure/cancer-centers/find

You can make contact yourself or ask your current oncologist (or your primary care provider) to make a referral for you.

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@blanchette

@dj12 - Deborah K Armstrong at Johns Hopkins in Baltimore is not far from you. She is a nationally recognized expert in gynecologic cancers. Fairly easy to make a prompt 2d opinion appointment. Johns Hopkins is a top-rated hospital for cancers. Good luck

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Thank you @blanchette, I actually have a male friend that goes to Johns Hopkins and he is involved in a clinical trial there. Always has good things to say about JH.
Thanks will keep this in mind. I was thinking of Dana Farber but heard about some kind of scandal.
Mayo would be considered but I am so far away from the 3 locations.
Will wait to hear about any other suggestions.
I am 4 years into recurrence and my last CT scan was not good.
Thanks DJ

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@naturegirl5

@dj12 I've been where you are with recurrent endometrial cancer. Mine was recurrent endometroid adenocarcinoma about two years following initial diagnosis and surgery. I was shocked and very frightened. For me, chemotherapy was not recommended however I did follow the recommendations for radiation therapy all at Mayo Clinic. I'm two years out from the recurrence and radiation and so far my follow-up appointments have show no evidence of disease.

I don't have a specific suggestion. I do recommend that if you would like to get an appointment ar a larger cancer institute that you locate one on the following website:

National Cancer Institute-Find an NCI Designated Cancer Center:

-- https://www.cancer.gov/research/infrastructure/cancer-centers/find

You can make contact yourself or ask your current oncologist (or your primary care provider) to make a referral for you.

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Thank you Helen, I will definitely check out the list you sent.
I had radiation the first time around so can't do that.
I hope my oncologist will not be upset if I ask for a referral?

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Is your goal to get into a clinical trial?

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@val64

Is your goal to get into a clinical trial?

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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

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 Since your oncologist said you should see a liver doctor then asking for a referral to a cancer center should not be a surprise. I know what you mean in saying will my oncologist be upset? I ask myself that question when I'm talking with a physician but then I tell myself that my "job" is not to protect the feelings of my doctor. This appointment is about me and my needs as I'm the patient. You are asking for a physician with more expertise in treating you since your needs have become more complex.

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@dj12

Thank you Helen, I will definitely check out the list you sent.
I had radiation the first time around so can't do that.
I hope my oncologist will not be upset if I ask for a referral?

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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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I don't have a recommendation, but I have tried out doctors at all three major cancer centers in Philadelphia and have not been impressed. In all cases the doctor I saw was selected because they were the first available when I called the hospital and asked for an appointment. So it's certainly possible that there would be doctors in Philly that you would like, but you're right to look for a specific recommendation. I don't think your oncologist would be offended if you asked for a recommendation. They should be in a position to know who's good.

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I would recommend MD Anderson in Houston. You can get a diagnosis with treatment or diagnosis only. It’s up to you.

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