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Need some reassurance - HELP

ptharp
Posts: 190
Joined: Oct 2012

I have two more treatments left and a CT scan in mid March. I am already worried about my 3 month check-up and would like to hear from Stage 3C long term remissions over 10 years. Are they really possible? How often does it happen? My doctor said for a person that was diagnosed at 3C I have good chances. He said I was MORE than optimally debulked. He said he did not see any cancer left behind per his eye. He said usually optimally debulked means you can still see under 1CM behind. He also said I am getting the chemo regeim that gives the best results, I am only 54 and in good health. Does all that really help your survival of of this diesease?  I am feeling a little discouragement today and need a pick me up.

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

You and I are in the same boat, I am a few months ahead of you. Diagnosed with stage 3C, at 44 years old, absolutely healthy otherwise. My debulking was optimal, actually the doctor found no trace of cancer when she opened me up. 4 rounds of chemo prior to surgery destroyed all tumors, mets and ascites. CA125 went from 1083 to 6. NED for now.

The prognosis my ONC gave me (she wrote it down) was 5-6 years overall median survival. Which means that 50% of women with my stats will be dead before the 5 year mark and 50% will be alive. Where we fall on that bell curve is up to God and dumb luck. The longer the PFS is (progression-free survival - length of time before the first recurrence) the better your overall chances are. Some people try to improve PFS with special diet, Metformin, vitamins, low-dose chemo, estrogen blockers, trials, etc. I always hear stories about someone who survived late stage ovarian cancer for 20+ years because she (fill in the blank) refused chemo or drank flaxseed oil or stopped eating carbs or had B17 or DCA injections or coffee enemas or prayed her heart out. It's not that I don't believe those stories, I think of them as more of a heart-warming motivational tool than a scientific fact. If you think that something is helping - the placebo effect or power of suggestion is quite powerful.

I prefer not to get my hopes up, because I don't want to be crushed when my CA125 goes back up. My first 3-months' check is in April and I don't think about it at all. Whatever happens - I will deal with it then.

I was delaying visiting my mom (she lives in Israel) for many years. Then cancer happened. On Thursday I decided that I am the one running my life, not my husband, not the CA125, not the fear of the impending doom. 10 minutes later I ordered plane ticket from expedia, hopped on the plane on Friday, rented a car, and 14 hours later surprised my mom by showing up at her door. My mom was super happy to see me. He is 67, legally blind and a breast cancer survivor. Now I am typing this at the hotel overlooking the Mediterranean sea. It's awesome and beats Canadian snow hands down. I went running on the boardwalk this morning and a tanned local guy tried to pick me up despite my wig and taped up tummy tuck scars. Made my day.

I am sorry if that is not the "pick-me-up" you need. Don't worry about things you can't control. Live your life one day at a time, look fabulous and feel better! Cool

 

MJensen
Posts: 93
Joined: Oct 2012

This is so awesome.  I am thrilled you made the trip.  I think that is a great way to live when you are feeling well!   Have a fabulous time!.  I love the Mediterranean and it sounds like it is great medicine for you right now!   Enjoy your time with family and friends! 

ptharp
Posts: 190
Joined: Oct 2012

Wow you are running already? That is great. Why can't we be the the Stgage 3c that lasts for 20 plus years? It happens.

 

ptharp
Posts: 190
Joined: Oct 2012

My Oncologist will not give me a prognosis in years. He said he doesn not have a crystal ball. He told me there is a 70 percent chance I can reoccur. I could be in that 30 percent. I will do everything I can to remain health and take care of myself and hope I will go for a while without reoccurance or none. If I do I will have to deal witih it then.

kikz's picture
kikz
Posts: 1266
Joined: Jun 2010

is only natural.  How much time we have is the big question in all of our minds.  Unfortunately no one and I mean no one can answer that.  I don't know how many times I asked my surgeon if he thought the cancer would come back.  Of course the odds are not good.

I recurred after 18 months and have been been living with a tumor while the doctors try different drugs.  It has been 10 months and I have not had any symptoms just the increasing CA 125.  I feel great physically but mentally and emotionally it has taken a toll. 

I remind myself everyday that I feel good and I don't want to taint this time with worry about the future.  That is not always easy to do.  I feel like I am in limbo right now.  I feel good but know I have cancer growing inside me.

I will have a petscan on Tuesday after the latest drug failed to bring down my numbers.  Then we will decide the next course of action.   

I also do not want to be a downer but the best thing you can do is live in the moment.  I myself can't always do this but most of the time I can put the cancer on the back burner and enjoy myself.  I refuse to let cancer conquer my spirit.

Even if I hadn't recurred, I am sure I would still be worrying about the prospect of recurrence.  It's kind of a no win situation but we have to take our lives into our own hands and make the best of it.  I love to hear stories of long-term survivors but that really does not change my situation.  We have to deal with the reality and move forward. 

Please try to jump back into your life.  This is precious time when you feel well. 

 

Karen  

MJensen
Posts: 93
Joined: Oct 2012

Hi,

I agree with others on the board.  None of us have that crystal ball.  We all know the stats for our particular type of cancer.  We can all hope, pray, change our diet, try homeopathic maintenance and you will have to decide what is best for you.   My DR as always said attitude has a lot to do with it.....so hopefully you can think positive and decide how you want to proceed once you finish treatment.  I know people who have survived with little change to the way they were living....ad I know another person that tried everything and she had the drive and will....she was having her first grand baby.  She was able to meet her grand daughter but the disease won in a couple of months.  So you never know.  We all hope that you will be a long term survivor ad your DR is telling you your chances are great!   I think that is what you hang on too and move forward in survivor mode. If you get a recurrence then you will deal with it. A lot of women live along time with cancer and they just keep knocking it down to keep it at bay so they can keep enjoying life. 

It is scary for all of us.....but we keep up the fight while we still have quality of life.  Sounds like you are a fighter and want to win the battle.  So fight, stay positive and look forward to all the things you want to do when you are through with treatment.  I think I remember you wanting to book a cruise.   Planning a vacation is always good medicine!     Sending you love, light and positive energy!   Cyber Hugs!   Michee

Glad to be done's picture
Glad to be done
Posts: 558
Joined: Jul 2012

I have been done with chemo since the end of June and there still is not a day that goes by that I don't think about the cancer, how long I have or when it will come back.  Every ache or pain I get I worry it is back but the next day it is gone.  I drove myself crazy in the beginning and as time has worn on It is easier to enjoy the days and not have cancer in the forefront of my thoughts.  It took me a few months though.  Every morning when I look in the mirror while brushing my teeth I tell myself - I have cancer ~ cancer does NOT have me.

BTW I sent you an email the other day and it got saying undeliverable.  I copy and pasted it so I wanted to make sure it is typed right.  Let me know.

 

Keep your chin up.

 

Eileen

 

ptharp
Posts: 190
Joined: Oct 2012

Eileen: I will give you my email again. Maybe I typed it wrong. It is pamalaraye@hotmail.com.

I know the odds are against us, but I have to hope I am one of the once that beats it. There is a lady on Facebook "Sisterhood of Ovarian Cancer Survivors" that was diagnosed with 3c 27 years ago with no reoccurance. I know another one that had once reocurrance form 3c after 5 years and had been cancer free for 24 years. My Oncologist said that the stats are not in stone because it all depends on how your surgery went, your age, your health, type of treatments, and were you able to finish all them. I know there are no guareentees but I am going to continue to hold on to the hope that I will be one that is around for a while.

Try the e-mail again. Did you put pamala and not pamela?

kimberly sue 63's picture
kimberly sue 63
Posts: 389
Joined: Apr 2012

Hang in there... i too was nervous about my three month check...more so than what i wanted to admit. Fortunately, my CA125 was a 6 just as it was when I finished chemo!!! So believe you too will be in remission and stable. Kim

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