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.

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

val64 | @val64 | 5 days ago
In reply to @juliejane "signatera is just another tool I am using for my own piece of mind. I have..." + (show)
@juliejane

signatera is just another tool I am using for my own piece of mind. I have no evidence of disease but that can change at anytime. I still have my chemo port in and it won’t be remove until November, if there’s no reoccurrence. I was told I have a 50% chance of reoccurrence at this point.

Jump to this post

Was Signatera covered by insurance? Would you be willing to tell us how much it's set you back?

REPLY
juliejane | @juliejane | 5 days ago

I am 71 years old. I have not paid anything for this test. I know when I look at my claim’s insurance pays over a thousand a blood test. I was lucky in that my oncologist was willing to order this when I asked for it. Some won’t!

REPLY
cookercooker | @cookercooker | 4 days ago
In reply to @naturegirl5 "I'm going to jump back in to this excellent discussion and share how I look at..." + (show)
@naturegirl5

I'm going to jump back in to this excellent discussion and share how I look at my chances of survival.

I was diagnosed with endometroid carcinoma, FIGO Grade 1, Stage 1a, in 2019. My surgeon (gyn-oncologist at Mayo Clinic) told me that the 5-year survival rate of my women with my diagnosis is over 90%. Good news. And yet I had a recurrence in 2021. That recurrence lowered my 5 year survival rate. Here I am 4 years later returning for my periodic cancer surveillance appointments and the worry about another recurrence or a new primary cancer never completely leaves my mind.

I have learned that I am not a statistic. That's too rational for my emotional mind. I have had a fear of flying in an airplane for many years. I do it anyway and while the fear has lessened over the years it is still there. Telling me that more people die in auto accidents than plane crashes doesn't help me. That's just too rational and does not speak to how I feel as in my emotions.

I'm doing all I can to live a healthy life. I follow my medical providers recommendations. I make a point to keep family and friends as my first priority. I got on a plane to spend 10 days with my brother. And I have reconnected with friends from high school and university.

I do want my doctors to share all the information including survival rates with me. As anxious as I am in these medical encounters I watch and listen to my doctor. Do you look at your doctor's face and body language when you ask questions? Do you ask someone to go with you to your appointments to track and understand what is so difficult to understand at the time?

Jump to this post

My oncologist didn't answer my question: "How long do I have?" He mumbled something which I asked him to repeat. He got agitated at that and said something like:"I'm going to tell you straight." And I said: "Give it to me." He mumbled something else which I didn't get and then he ran out of the room.

REPLY
View MoreView Less
Please sign in or register to post a reply.