My oncologist actually said today "Well, if our goal is to still acheive a CURE for you"....(CURE???
lindaprocopio
Member Posts: 1,980 Member
It's wierd. From the very beginning right after my surgery, as my chemo-oncologist was encouraging me to push on with aggressive chemo and radiation, he always said "We've got one shot at curing you of this, because if it comes back we will only talk about managing your cancer as a chronic condition." This opinion that after recurrance this cancer is not curable is backed up by everything I've read about UPSC, which is so like ovarian cancer in treatment and prognosis. So when my cancer recurred after a 5-month remission, I tearfully put away all hopes of a cure and went into a regime of weekly taxol to 'hold' my cancer in check.
After 10 round of this weekly taxol, my CA-125 climbed 2 points following a month of very tiny drops of 1 to 5 points, and it looked like the weak-dose taxol was no longer doing the job. So my onc scheduled a CT/PET to see where we are before changing chemos. SURPRISE! My CT/PET was clear! NOTHING lit up; 2 of the 3 lymph nodes that were enlarged in my November scan were invisible now; and the other one had shrunk to 11 mm and did not light up!! No one expected THAT, with my CA-125 on the rise.
So I had an appointment today to discuss what we should do next. In the course of the conversation, my chemo-oncologise said "Well, if our goal for you is still to achieve a CURE, let's consider going balls-to-the-wall with another aggressive 4 to 6 rounds of carbo-taxol at full strength." WHAT??? I've already grieved over the loss of the hope of a cure and moved on as best I could, and now you re-awaken that hope??? HECK! I would do the carbo/taxol rounds all again to even achieve a year or 2 year remission! In a HEARTBEAT! I thought our goal now was just to keep me ALIVE as long as possible, factoring in quality-of-life issues when choosing chemo options. I didn't even think he was optimistic for a remission for me. (Statistical life expectancy following UPSC recurrence is 15 months.) So I asked him if he REALLY thought I had a shot at a cure or prolonged remission, and he said "I wouldn't suggest you go through this again if I didn't". (This is a man who told me right after I recurred that I could expect LONG periods of treatment followed by SHORT breaks for the rest of my life.) Do you think he is just bouyed-up by my surprise clean CT/PET scan? Dare I allow those kinds of hopes to flicker alive again?
I already have an appointment Monday for a 2nd opinion. I will have the results of the CA-125 they took today by then, to factor into the discussion. But what do you think? I never expected to hear the word 'cure' from him again. I am afraid to allow myself to start hoping for that.
After 10 round of this weekly taxol, my CA-125 climbed 2 points following a month of very tiny drops of 1 to 5 points, and it looked like the weak-dose taxol was no longer doing the job. So my onc scheduled a CT/PET to see where we are before changing chemos. SURPRISE! My CT/PET was clear! NOTHING lit up; 2 of the 3 lymph nodes that were enlarged in my November scan were invisible now; and the other one had shrunk to 11 mm and did not light up!! No one expected THAT, with my CA-125 on the rise.
So I had an appointment today to discuss what we should do next. In the course of the conversation, my chemo-oncologise said "Well, if our goal for you is still to achieve a CURE, let's consider going balls-to-the-wall with another aggressive 4 to 6 rounds of carbo-taxol at full strength." WHAT??? I've already grieved over the loss of the hope of a cure and moved on as best I could, and now you re-awaken that hope??? HECK! I would do the carbo/taxol rounds all again to even achieve a year or 2 year remission! In a HEARTBEAT! I thought our goal now was just to keep me ALIVE as long as possible, factoring in quality-of-life issues when choosing chemo options. I didn't even think he was optimistic for a remission for me. (Statistical life expectancy following UPSC recurrence is 15 months.) So I asked him if he REALLY thought I had a shot at a cure or prolonged remission, and he said "I wouldn't suggest you go through this again if I didn't". (This is a man who told me right after I recurred that I could expect LONG periods of treatment followed by SHORT breaks for the rest of my life.) Do you think he is just bouyed-up by my surprise clean CT/PET scan? Dare I allow those kinds of hopes to flicker alive again?
I already have an appointment Monday for a 2nd opinion. I will have the results of the CA-125 they took today by then, to factor into the discussion. But what do you think? I never expected to hear the word 'cure' from him again. I am afraid to allow myself to start hoping for that.
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Comments
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Hi Linda
Linda I am so heartened by your message it brought tears to my eyes. You have been given HOPE again and it is HOPE that keeps us all battling along. I am so so pleased for you and I really wish everything is good at your next meeting.
Much love Tina xxxxx0 -
Hope
Linda,
Dare you NOT allow hope to spring up again? I say, grab the ball and run with it, girl! People have repeatedly told me that doctors weigh what they say to patients very carefully and NEVER offer false hope, so grab it with both hands and hold it close!
HUGS!
Leesa0 -
Dare to Hope
Linda,
Please don't ever give up hope. Here are a few quotes that might bring a smile.
"There are three kinds of lies: lies, damn lies, and statistics." Benjamin Disraeli
"We should always presume the disease to be curable, until its own nature prove it otherwise."
Peter Mere Latham
(((HUGS))) Joan0 -
Go for it!
Linda, I like your doctor! And at the same time, you are so wise to get a second opinion. I have 4 docs including my regular one that I consult with before I more forward with every step.
Is Avastin also an option for UPSC? Why not include that into the mix too? Just a random thought.
I would go for it, and statistics are only stats. Someone has to beat them!!! Why not you?
Hugs,
kathleen:)0 -
I have hope for you.....
Hello Linda.. It’s been awhile since I’ve been on but, please don’t ever lose your hope!! You were one of the people who (besides Mopar, BonnieR and Sandra) helped me through my journey. We were going through the same things at the same time. I loved the picture I first seen of you and that was the bald picture you took for your husband. That picture shows how strong you are and you have encouraged so many here. Thank God he gave you hope again!! Don’t ever give up!!
I just read a post that BonnieR listed and I think you need to read that.. Linda go back and read some of the post she listed. You need to keep your faith and please don't give up!0 -
That sounds so wonderful
That sounds so wonderful Linda,
My oncologist very bluntly tells me without blinking an eye, "well sweetie, there is no cure for stage 4 ovarian cancer. Three years is the max and at best five years."
Now all of us ladies know many who survived this cancer well beyond five years so I don't get it. Of course now that I'm at the critical 3 year mark, I'm beginning to get that old familiar fearful panic attack and afraid it will have a hold on my spirit up to the five year mark and after that then what?
I was also told that all we're doing now is treating this as a chronic condition and extending your life as long as we can stay on top of the cancer.
Yet; I believe that's a great sign and feel that hope has a healing effect in itself. So that's what I do each and every day.
Rejoice in that positive news Linda.
Sharon0 -
2nd opinion
Linda,
We seem to be having about the same schedule. I too am now going for a second opinion at the request of my oncologist. Going to get an appointment at the James Cancer Research at Ohio State University in Columbus Ohio.
Hope - to desire something with CONFIDENT expectation of its FULFILLMENT! I like that!!
Living for Eternity,
Libby0 -
Go for it....
Linda, my last CT was better too. It has been suggested that I continue the carbo with pre meds because it works so well on me. I am waiting to see what the colon surgeon says and then see the head of gyn/onc on Mar. 10th to see what we will do next. If I have colon surgery I suppose we will not do chemo for awhile. It's my oncologist that wants to be agressive. Difficult to iron out all the different opinions.
Let's pray we make the right choice. Saundra0 -
Hope
We must always keep the faith and always have hope. I personally chose not to hear anything about survival or prognosis. My husband knows what my doctor said. I firmly believe I will beat this and after almost 6 rounds including IV and IP with initial CA125 at 9000, I am down to 55 after 5 treatments. Never give up.0
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