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.

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

@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

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@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.

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@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. 😊

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@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.

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@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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@ffr

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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I guess if you're one of the lucky ones to see progress you can't help but feel fortunate. I felt that way too when I had legionella in 1989 and was in ICU for 10 days. I felt that way in 2011 when I had a sub-arachnoid hemorrhage, brain bleed, and was in neurological ICU at Shands in Gainesville FL for 8 days. I never felt like I was going to die with the first 2 and for some reason I had that feeling with this cancer diagnosis. Call me nieve or too confident or something else but I do believe that state of mind plays a big role in any medical diagnosis. Those numbers coming down are a positive for me and it keeps me hopeful. You will find your hopeful. Doctors don't know all the answers to a medical issue. If they did, they could cure everyone of everything. It doesn't hurt to do research either. Should you put 100% faith in everything you read? Of course not. Out of a 2 page article there may be only 3 or 4 things that pertains to me. I take THOSE 3 or 4 things and store them and when I find other symptoms in other places I begin to put a puzzle together for me. I don't try to make myself fit a diagnosis. I pick out only the things I'm dealing with then things begin to look a little more optimistic. If I had believed what it said about my cancer having only a 15-30% 5 year survival rate, I'd STILL be depressed. But I found people with a more advanced stage than I am, 3C, and they are even going through different treatments than I'm going through but yet there's one been in remission for 25 years. Another for over 10. Hearing their success stories gives me hope. I don't care if my doctor were to tell me otherwise, I believe in and trust other people's testimonials. I would never settle for there is no treatment out there. No way. The numbers give me hope. Other people's testimonials give me hope. The fact that I haven't been deathly sick, not ONE time in 4 chemo treatments while other people with the same diagnosis as me have puked for days after EVERY treatment, gives me a sense that I'm very fortunate. I wish the best for you. I would be researching everything I could possibly find on my illness. What is it going to hurt? It might be what you need to be optimistic and not settle for a doctors prognosis of it's so bad there is no hope. Not in this day and age with all the medical advances there are out there. Please try. It has to be important to at least one other person, right? ❤️

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I have researched my particular cancer and have seen the scary statistics. I watch webinars and subscribe to newsletters to keep myself current with the latest treatments. As a result, I believe that my outlook could be called realistic vs positive or negative.
On a human level, a good friend once reminded me that there are people who win the lottery. And a kind therapist told me that when my head goes to bad places I should tell myself, “I’ll deal with it if & when it happens.” We all handle things differently, that’s for sure. Positivity is not a switch that one can turn on or off. For me, it’s a roller coaster ride and a life lesson in resilience, priorities, values, and the gift of knowing who uplifts me (& who disappoints.) I am grateful for the love of friends & family as well as for the kind & caring support of professionals and cancer sisters.
Thank you.
May we all continue to thrive.

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@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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When I found out I had cancer, I'm 66 by the way, I drew up my will, went to the bank and had my daughter put on my account, and did a living will. That was on March 18. I got my diagnosis on Feb 28th. I actually retired from salon business at 63 due to back issues. You can also retire on disability if you're diagnosed with cancer. It's the what ifs that weigh so heavy on a person with cancer. The 3 weeks between waiting for results after PET scan and actually seeing my doctor were excruciating. I was in pain also but I already take hydrocodone for back problems but it didn't hardly touch the pain. At least at hospital I got morphine and was pain free for a bit. Like I've said before, I had my pity party for about a week or 2 where I cried daily and was comfortated by my daughter and sister who were here 2 weeks before and 2 weeks after diagnosis. My daughter, along with others in a cervical cancer support group I belong to on Facebook, said stay off Google. That information is outdated. I'll admit some of it is helpful but most of it is just statistics and I refuse to be a statistic. If you are serious about retiring then check into disability. I will tell you this little story though.

My cousin owns a school where they teach Youngs girls to be nurse techs, phlebotomy, etc. She got breast cancer over 5 years ago. Triple negative....I had to look that up....her chemo was so strong she lost her hair the very same night. She never missed any work. Her doctors have told her that she's the longest living person with the type cancer she has...longer than 5 years. I found out couple months ago her cancer is back but it's in her brain. I ask her what they were going to do and her answer was...we don't know. She's about 65 now. She posted on her Facebook page she was going to beach and taking some vacation time, long overdue she said. I really need to catch up with her and see what's going on but I feel guilty when I say how well I'm doing compared to how she's doing. Its a tough row to hoe but all we can do is pray that it's God's will. My life will be different if I'm fortunate enough to get through this.

Can't remember if you've said what type cancer you have, I've read so many I get them mixed up, I had what they thought was just cervical cancer but the end diagnosis based on scans is endometrial stage 3C. I had 5th chemo yesterday I feel great today. Just waiting for the thing to go off at about 5:30 today to give the WBC booster shots. I'll save my morphine pills for when the bone pain begins about 2-3 days after shots. Thank God I only got 1 more treatment and things are small enough for hysterectomy. If not and I need another treatment then so be it. It's out of my hands but I'm still positive the outcome will be better than what statistics say. ❤️

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@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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The cancer antigens that give me concern are CA 19-9 and 15-3. CA 125 has dropped to the normal range, but the other two have barely budged. Can anyone explain the relevance of these markers?

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@ffr

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.

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I do understand.

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