1. < Gynecologic Cancers

Has your doctor been straightforward about your survival?

Posted by lathomasmd @lathomasmd, Jun 2 10:05am

Hi all. I’m so glad this forum is here. I was diagnosed with papillary serous ovarian cancer, stage IIIc, three-and-a-half years ago. I just finished my third course of chemo. My doctors will not be very frank when I ask “What are my chances of long-term survival?” They say things like, “Every patient is different” “I don’t like to put a number on it” and, believe it or not, “You could be hit by a bus tomorrow!”
I’d very much like to know what other patients’ doctors have told them regarding their chances. Have they been straightforward with you? Or are they vague and uncomfortable discussing odds of survival?
Thank you.

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Mentor
Helen, Volunteer Mentor | @naturegirl5 | 2 days ago
In reply to @ffr "I don’t have a science brain but if you google it you will get a good..." + (show)
@ffr

I don’t have a science brain but if you google it you will get a good background. These markers might be the cause of some cancers and more significantly, they are now guiding treatments such as immunotherapy. I had both genetic and biomarker testing done when I was diagnosed (at my own expense because Medicare would not pay for it.)
When I listen to online patient webinars about gyn cancer trial results it is always about the biomarkers.
You can go online to SHARE Cancer Support and OCRA (Ovarian Cancer Research Alliance) for information. These are my main two informational organizations for gyn cancers and webinars, though they offer support services as well. Previous webinars are recorded, so you can watch them at your convenience. It’s definitely worth perusing the websites if you are not familiar with them.
I hope this helps a little.

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@patientgirl If you choose to Google biomarkers please consider Google Scholar. Google Scholar will provide you with the opportunity to review valid and reliable research. Just about anyone can put anything on the internet and that can be what you get when you google. Google Scholar will bring up research that has legitimacy in the research scholars' world.

About Google Scholar:

- https://scholar.google.com/intl/en/scholar/about.html

REPLY
carol1024 | @carol1024 | 1 day ago
In reply to @lathomasmd "Thank you all for your input. I didn’t mean to sound like I expect my doctor..." + (show)
@lathomasmd

Thank you all for your input. I didn’t mean to sound like I expect my doctor to promise an exact lifespan. I’m 64 years old. If I didn’t have cancer, I would expect to live 15-25 more years. Of course I could be hit by a bus tomorrow. But, since I have cancer, I think I am much less likely to live even 5 years. But I’m basing that estimate on statistics about ovarian cancer in general: all ovarian cancers lumped together have a five year survival of 40-50%. This statistic does not parse kinds or stages of ovarian cancer. I’m sure that some kinds and stages of ovarian cancer have better average survival than others.
I’m also sure that some treatments improve survival better than others.
(i.e. surgery and chemotherapy improve survival better than surgery alone; drug A improves survival better than drug B, the whole point of clinical trials.)

All these statistics exist. Doctors wouldn’t use the medicines they use without knowing all these statistics. But will they share that with patients? From all the comments above, sounds like most don’t.

It’s nice to have at least a rough idea of how much you have. It might make the difference between whether or not you want to retire, or move to a new city. Do you need to focus more on loved one’s? Do you need to start working on that bucket list? Do you need to draw up a will? Is this the best time to buy that house? The reasons knowing a rough idea of longev

Did more research: found a helpful site. Doesn’t answer all of my questions, but I guess it’s a start:
https://seer.cancer.gov/statistics-network/explorer/application.html?site=61&data_type=4&graph_type=2&compareBy=stage&chk_stage_105=105&chk_stage_106=106&relative_survival_interval=5&hdn_sex=3&race=1&age_range=1&advopt_precision=1&advopt_show_ci=on&hdn_view=0&advopt_show_apc=on&advopt_display=1
Thanks again for all your contributions. I hope all who still have questions find the answers they seek.

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I was diagnosed with stage 3C endometrial cancer in Feb. I'm having my 5th chemo treatment Monday June 9th. I googled the life expectancy also but there are people in cancer group on Facebook that have been cancer free for 10 years. One with breast cancer, stage 4, just celebrated her 25th anniversary being cancer free. Every person IS different so you can't compare yourself and your treatments with every one else. I'm doing chemo and immunotherapy only. No radiation. My CA125 numbers have gone from 1641 in Feb to 105 right now. That means the chemo is working. I figure as long as the numbers are falling I have a greater chance of that hysterectomy. Don't wait for the prediction of your lifespan to start doing all those things you mentioned. Live each day as if you don't have much time left.

REPLY
carol1024 | @carol1024 | 1 day ago
In reply to @ffr "I don’t have a science brain but if you google it you will get a good..." + (show)
@ffr

I don’t have a science brain but if you google it you will get a good background. These markers might be the cause of some cancers and more significantly, they are now guiding treatments such as immunotherapy. I had both genetic and biomarker testing done when I was diagnosed (at my own expense because Medicare would not pay for it.)
When I listen to online patient webinars about gyn cancer trial results it is always about the biomarkers.
You can go online to SHARE Cancer Support and OCRA (Ovarian Cancer Research Alliance) for information. These are my main two informational organizations for gyn cancers and webinars, though they offer support services as well. Previous webinars are recorded, so you can watch them at your convenience. It’s definitely worth perusing the websites if you are not familiar with them.
I hope this helps a little.

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My CA125 numbers have gone from 1641 at diagnosis in Feb to 105 after my 4th treatment. I'm having my 5th treatment on Monday June 9th. Hoping for lower numbers after that one too. My oncologist wants the numbers less than 30 before she does a hysterectomy. The numbers are important because they tell me the chemo is working. CT scan couple weeks ago showed several lymph nodes and a mass had been resolved. I'll take the bone pain that comes with the WBC booster shots because it's working. 😊

REPLY
1 reply
ffr | @ffr | 22 hours ago
In reply to @denisestlouie "When you say biomarkers what do you refer to? Is it the metibolic panel or lipids?..." + (show)
@denisestlouie

When you say biomarkers what do you refer to?
Is it the metibolic panel or lipids? CA125? What the the markets that give you concern?
Denise

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Denise,
My CA-125 was never high and I don’t have BRCA or Lynch.
I am most concerned about mismatch repair status proficient and micro satellite instability stable. There have been OS successes with immunotherapy for MMR deficient biomarkers and mine are the opposite. Even my doctors call my markers “bad” as there is really no treatment out there for me at this time.
Thank you for your interest.

REPLY
ffr | @ffr | 22 hours ago
In reply to @carol1024 "My CA125 numbers have gone from 1641 at diagnosis in Feb to 105 after my 4th..." + (show)
@carol1024

My CA125 numbers have gone from 1641 at diagnosis in Feb to 105 after my 4th treatment. I'm having my 5th treatment on Monday June 9th. Hoping for lower numbers after that one too. My oncologist wants the numbers less than 30 before she does a hysterectomy. The numbers are important because they tell me the chemo is working. CT scan couple weeks ago showed several lymph nodes and a mass had been resolved. I'll take the bone pain that comes with the WBC booster shots because it's working. 😊

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I agree that it is irrelevant to compare our cancers as they are all different. And looking up life expectancy is just as meaningless because of our unique presentations. (But I imagine that most of us have done this!)
Best wishes as you complete your treatment.

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