1. < Gynecologic Cancers
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Anyone ever request a new oncologist mid-treatment?

Posted by korinja @korinja, May 17 2:59pm

My oncologist was awesome and without a doubt saved my life by getting me into treatment very early after my diagnosis. In the months following, there has been a breakdown in communication, to the point that I feel completely uncomfortable asking any questions related to my illness or treatment. I have also only seen this person one time (all other communication is through the portal, a few phone calls early on, and now just theough the nurse), at my initial consultation. I have no question as to the quality of medical decision-making and treatment I am receiving. I just dread the idea of interacting with this individual to the point that the mere idea makes me need an anxiety med and I need a proxy to communicate on my behalf. I’m at a pause in my chemo pending surgery and wouldn’t have chemo again for 2-3 months, so it seems like this might be a good point in my treatment to request a change. Everyone I’ve asked (non-cancer patients) thinks I’m crazy to even consider it. Thoughts?

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

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pigglywiggly9 | @pigglywiggly9 | Jun 2 12:42pm
In reply to @cookercooker "You might want your oncologist to elaborate on your diagnosis and survival time. I am attaching..." + (show)
Profile picture for cookercooker @cookercooker

You might want your oncologist to elaborate on your diagnosis and survival time. I am attaching a link to clear cell endometrial cancer that provides a technical description of the disease. It may give you information to form questions for your doctor. Failing that, you could seek out an oncologist who is willing to clarify your prognosis and treatment alternatives.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6152831/
All the best

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NIH articles, while excellent, stand cautious and astute and note date of publication. 2018 is 7 years ago! This equates to sample size and results dating back very far from data collation. Put credence in recent publications.

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2 replies
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carol1024 | @carol1024 | Jun 2 2:29pm
In reply to @naturegirl5 "@carol1024 This is good news on your CA125 numbers. I hope your lab work continues to..." + (show)
Profile picture for Helen, Volunteer Mentor @naturegirl5

@carol1024 This is good news on your CA125 numbers. I hope your lab work continues to show improvement.

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CT scan results today showed several lymph nodes have been resolved with the treatments. Praise the Lord.

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korinja | @korinja | Jun 2 6:31pm
In reply to @hort37b460 "Hi Korinja, thank you for your response. No, it’s not the Mayo Clinic. I always think..." + (show)
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Hi Korinja, thank you for your response.
No, it’s not the Mayo Clinic. I always think of the Mayo Clinic with the highest regard and appreciation and I’m grateful for all of the good they do.
It was Kaiser. The doctors at the cancer center were wonderful, helpful and kind. The bad treatment I got was at another one of their facilities.

I always have trouble when I don’t listen to my own instincts.

By the way, my diagnosis is Clear Cell Carcinoma, stage two.
They thought it was polyps but it was an “extremely large tumor”. Also they have not come up with a cure for clear cell carcinoma … they told me I have four years to live and that it is rare, aggressive, and will return multiple times.
The bad side effects were too much for me to bear. I am 75 years old.
Pain management is another unlucky subject.

All the best, Daisy

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Hi Daisy,

I’m so glad that you got out of that hospital’s care and into Mayo. I am sending you positive thoughts and healing energy as you fight this awful disease. < 3

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Daisy | @hort37b460 | Jun 2 7:49pm
In reply to @korinja "Hi Daisy, I’m so glad that you got out of that hospital’s care and into Mayo...." + (show)
Profile picture for korinja @korinja

Hi Daisy,

I’m so glad that you got out of that hospital’s care and into Mayo. I am sending you positive thoughts and healing energy as you fight this awful disease. < 3

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Thank you for your kind words.

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Jun 2 10:01pm
In reply to @hort37b460 "Hi Korinja, thank you for your response. No, it’s not the Mayo Clinic. I always think..." + (show)
Profile picture for Daisy @hort37b460

Hi Korinja, thank you for your response.
No, it’s not the Mayo Clinic. I always think of the Mayo Clinic with the highest regard and appreciation and I’m grateful for all of the good they do.
It was Kaiser. The doctors at the cancer center were wonderful, helpful and kind. The bad treatment I got was at another one of their facilities.

I always have trouble when I don’t listen to my own instincts.

By the way, my diagnosis is Clear Cell Carcinoma, stage two.
They thought it was polyps but it was an “extremely large tumor”. Also they have not come up with a cure for clear cell carcinoma … they told me I have four years to live and that it is rare, aggressive, and will return multiple times.
The bad side effects were too much for me to bear. I am 75 years old.
Pain management is another unlucky subject.

All the best, Daisy

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@hort37b460 I’m glad you are going to Mayo. I think you will find the providers and everyone you come into contact with to be helpful and compassionate.

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Denise | @denisestlouie | Jun 3 7:11am
In reply to @pigglywiggly9 "NIH articles, while excellent, stand cautious and astute and note date of publication. 2018 is 7..." + (show)
Profile picture for pigglywiggly9 @pigglywiggly9

NIH articles, while excellent, stand cautious and astute and note date of publication. 2018 is 7 years ago! This equates to sample size and results dating back very far from data collation. Put credence in recent publications.

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just in the past 5 years there have been target treatments approved for clear cell. Your right that this article is old.

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cookercooker | @cookercooker | Jun 3 10:00am
In reply to @hort37b460 "Wow! The information you connected me with was more thoroughand helpful than all the other info..." + (show)
Profile picture for Daisy @hort37b460

Wow! The information you connected me with was more thoroughand helpful than all the other info I have collected from researching online articles. (I’ve spent too many hours to count searching for answers.
I cannot thank you enough for your help! 🙂

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Great!

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cookercooker | @cookercooker | Jun 3 10:02am
In reply to @pigglywiggly9 "NIH articles, while excellent, stand cautious and astute and note date of publication. 2018 is 7..." + (show)
Profile picture for pigglywiggly9 @pigglywiggly9

NIH articles, while excellent, stand cautious and astute and note date of publication. 2018 is 7 years ago! This equates to sample size and results dating back very far from data collation. Put credence in recent publications.

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Agreed. Have you found recent studies that elaborate on or refute the previous paper?

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mtstack | @mtstack | Oct 15 4:51am
In reply to @carol1024 "I'm so sorry for you. Can't they do chemo and radiation? I have an aggressive fast..." + (show)
Profile picture for carol1024 @carol1024

I'm so sorry for you. Can't they do chemo and radiation? I have an aggressive fast spreading cancer too...carcinosarcoma but it's endometrial cancer, stage 3C. I've had 4 treatments of chemo and immunotherapy. My CA125 numbers started at 1641 in Feb and went to 744 after 2nd treatment. After 3rd treatment they fell to 179. I'm having labwork today so I'll see how much more they've come down. I think I'd demand treatment. What could it possibly hurt?

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@carol1024
Thank you for posting your CA125 numbers.
I had heard they could be in the thousands but didn't realize how much they can move after each cycle.
I only wish lab work had been done on me prior to surgery as I have no baseline except the CA125 I received last week before my first cycle.

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carol1024 | @carol1024 | Oct 15 5:34am
In reply to @mtstack "@carol1024 Thank you for posting your CA125 numbers. I had heard they could be in the..." + (show)
Profile picture for mtstack @mtstack

@carol1024
Thank you for posting your CA125 numbers.
I had heard they could be in the thousands but didn't realize how much they can move after each cycle.
I only wish lab work had been done on me prior to surgery as I have no baseline except the CA125 I received last week before my first cycle.

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@mtstack you can still have them. I had the baseline before treatments. I did not have surgery until after I finished the first 6 treatments. That was June 30th. My surgery was Aug 20th and by then my numbers had jumped to 228 so my oncologist wanted me get started asap on this other session of chemo because it turns out I'm HER2+ so I qualify for more targeted chemo. You can still get CA125. They may have done one and just not mentioned it. They did mine and I had to ask what they were. Ask your doctor. It's such a great feeling to watch them drop. Everytime I went for labs before a treatment I'd ask if she was doing a CA125. Lol

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