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I Looking for Early Stage "Survivors"/Patients

hrg63
0 Recommendations

I just finished a round of chemo for Stage 1B ovarian cancer and got a clean CAT scan report! My doctor expects that this is most likely the last I will hear of the disease and I know the survival rate is 90+% but still feel strongly that I have been changed forever. I am still recovering from the chemo and its side effects and would grateful to chat with women who are either survivors or current patients with early stage illness. Thanks, this forum has been hugely helpful during my treatment!

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39 replies

Leah2

I was diagnosed with stage IA OVCA in October 2005, followed by surgery and chemo. Certainly it changes you forever as does any serious illness but reading these posts it also makes you realize how incredibly lucky you are to have early stage cancer! Because of this, I have moved on my life, other than getting checked every six months. I do, however, work with ovarian cancer groups to help other women so that they can be as lucky as I am.

hrg63

So since your first diagnosis and teatment you've had no recurrence or "scares", or for that matter any other cancers? I know the 90% number in theory, I'm just looking for women in the flesh to back it up! I guess every day,week, then month that goes by healthy you become more confident that you've really beaten it. I am so happy to be healthy but at the same time I feel that I would crumble if I I had a recurrence! Thanks for responding. ;-)

3bears

I was diagnosed with 1C in January and am very happy it was caught at an early stage. But I too worry about recurrence. My CA-125 has never gone below 18 and the last time it was 25...so that's not comforting even though I had a clear CT - scan.

I know how you feel. I hope some day to be able to say I am a long term survivor.

Leah2

My original CA125 was a 5 and then jumped to a 12 and my doctor got nervous and ordered a CT scan, etc. and of course I was worried but it turned out that the lab had changed it's numbering system and hadn't told my doctor! Of course I worry about recurrence but I figure the odds are on my side and I've decided to live my life without the threat of cancer hanging over it. I have two wonderful daughters and a fantastic husband and they keep me going. I have too much else to live for!

rrmiller17

I was dx with stage 1c ovarian cancer in Nov. 2007. My ca 125 at time of surgery was 55. After 6 rounds of carbo/taxol my ca 125 only went down to 22. Now 2 years later the numbers have been between 22 and 31. This it the way it has been for 2 years. One month up, the next down. Has this happened to anyone else? This is the pattern....... 22/26/22/22/27/22/28/24/31/28. My cat scan was clean last month.

hrg63

Thanks everyone!

Leah2

My CA125 never really went up, even when I had the tumor. I'm one of those women whose levels don't seem to be affected by anything. I want to add something to my earlier post to hrg63. Maybe I have this attitude because I'm older and I've been through some other medical problems, but I think you need to recognize the strength in yourself. You've survived cancer and chemo, your doctor is optimistic, so give yourself the credit you deserve. We women are strong beings and we can survive a lot and keep going... Anyway, that's my feeling on the whole business....I hope it helps some!

craftslady

I am 4 months out from my last round of chemo (of 6) for stage 1c, diagnosed in December of last year. Next month is my next CAT scan. I too, worry about whether it will come back. But my gyn/onc surgeon told me "it's more likely that it will not come back than it will. Go live your life". So I try to keep that in the forefront of my mind. I guess it will be easier to do after the hair grows back! But I don't suppose I will ever feel really free.
But here's to all of us being part of that 90%!
Irene

hrg63

I definately agree with craftslady that once my hair and eybrows grow back and I no longer see a cancer patient in the mirror, it will be easier to think of myself as healthy. Also, losing some of the 20+ pounds I put on during the course wouldn't hurt either. I really hope most of it is steroids and will resolve itself but I have a feeling some of it is from the weird food cravings I indulged in. Did anyone else pack on the pounds?

kmeha

I was diagnosed in June of this year and is in stage 1c. I am about to start my second dose of chemo next week. I guess i dont realize how lucky i was that it was caught so early. Seeing the early stage ladies gives me hope that i will to be a clean scan. thanks

hrg63

kmeha-

Do what I did, keep thinking Stage 1= very high survival....... It kept me going thru the worst! Good Luck!!!!!!!!!!

Aquamay

I had an ovarian cyst (since my 20s) that would ebb and tide over the years and it grew during my pregnancy to 6cm. After emergency C Section (and removal of the cyst and uterus due to bleeding) I was told by my OBGYN that the biopsy came back + for Stage 1A CCC OVCA. I just finished 6 rounds of chemo and now am waiting for my CT scan, then I need to have surgery to remove the other ovary, omentum, cervix and finish the staging. My CA 125 at the time of the cyst/tumor removal was 35 and went down to 9-15 throughout. It is now at 11. I have 2 wonderful babies that are 5 1/2 months old and great husband and mom! We are all survivors and friends - no matter what stage of OVCA or where we are in life. Remind all your friends and family members to watch those cysts! And, - Live Well!!

felter

In Feb this year I had ca125 levels of 180 and a ultrasound showed a cyst on right ovary. I had full abdom hysterectomy & omentum removed & the biopsy showed stage 1a OVC clear cell type. My gyno said he believed all cancer removed with surgery but because of clear cell recommended chemo - also confirmed by onc. I have just had 4th of 6 chemos & my onc believes that I will have no more problems - my ca125 is now 7.5.
I have to believe that cancer has gone but obviously will always think in the back of my mind it could sneak back. We are the lucky ones with stage 1 as it is so rare for it to be diagnosed at this early stage. I believe in positive thinking - as I am sure we all do - and was encouraged by my onc who said to me on the 1st treatment - I am treating a well person this is only precautionary.

We have all been changed by cancer but it is up to us to use this in a positive way to do something we have always wanted to do in our lives - or maybe give something back to help other survivors/newly diagnosed/educate friends on symptoms or whatever.

I have found this site to be so helpful and it has been great to share experiences with all my special friends here - long may we all survive.

sckada

Rrmiller,
I have crazy number just like you. I think the important thing is that they go down. My numbers after chemo have been 12, 20, 13, 13, 17, 18, 15. I'm unstaged and did not have the complete surgery until after I finished all my chemo ( long story). Everything came back clear after sugery including washings.

The only reason that I still think I may have been a higher stage is because my CA125 was 64 after they removed my ovary with the cancer. Of course my blood was taken about 2 1/2 weeks after the surgery to remove my ovary so I hope this is why it was so high.

musicalmom

I had a complete hysterectomy and large tumor removed in March 2009. It took doctors 2 weeks to diagnose the cancer - stage IIB. They said it is a very, very rare form of carcinoma with sarcomatoid features. I have no idea what that means. I just finished my 6 round of chemo and will get a CT scan on Sept. 2. I feel no pain and the doctors said they got it all during surgery, so I'm expecting good results. But my doctor wants me to go on Tamoxifin or Hexalen pills for 6 months for greater assurance that it will never come back. I don't know what to expect in the future but I'll sure be glad when my hair starts coming back in!

melf

I was diagnosed as stage 1a and had surgery halloween 2007. I am coming up on 2 years now and it is hard sometimes and yes, I do always have "that fear" in the back of my mind. I keep busy and try not to think about it. I was very lucky and while Im still lucky, Im working to put the word out about ovca because I feel well enough to tackle it.
I have had scares and this past 2 years has been rocky but my doc is optomistic so I will follow his lead on that. CA125 does not work for my type of ovca and it has remained in the normal range. The test I do remains in the normal range as well. I have battled seromas, subsequent surgery for that, hernias, kidney stones and yet another hernia due to the "heaving" with the stone. But Im still verticle and so far so good!
the seroma about made me crazy with fear. It was as large as the original tumor (15cm) and it filled the same cavity. I was sure IT was back and was scared to death (no pun intended). I finally had that surgically removed after months of conservative measures not working. The thing that I struggle with the most is being so fortunate right now an watching others suffer with this disease. Sometimes im very guilty over that. It's like being the sole survivor after a car crash...wierd and I never understood the concept until now.

You take care of yourself and keep moving!
Blessings,
Mel

hrg63

Melf-
That exactly how I feel, scared but guilty that others are so much worse off. That's one of the reasons I specifically looked for satge 1 patients/survivors. Everyone has their own worries and I guess people like us are also blessed with high hopes as well!

I just returned from the follow up with my oncologist after my CAT scan Monday. I am a "negative" as possible and hwhile he refused to use the word "cured" for legal reasons, he did assure me in the most definitive of ways that I am in remission and should go about life as normal. Don't need to see him for 2 months. Now to try and remember what normal is!!!!!

rrmiller17

I too feel very blessed that mine was staged 1C. I had chemo because of "spillage". The 14cm cyst on my ovary spilled as they were taking it out at surgery. The omentum was removed and checked and the washings were negative. Both ovaries were fine too, it was just the cyst that was attached to the ovary was cancer. 6 rounds of chemo only brought my ca-125 down to 22. I too am worried that it might return one day.

melf

"Normal" has forever changed and will never be the same again. Funny how that happens. I go back to the dr again in December- after yet another ct in November. I swear I glow now. Hows that for "normalcy"? What a hoot!! Anyway, Im hoping that after this upcoming visit I wont need to see him until the next summer again. I am determined not to worry until they tell me to.
Good luck with your "normal"

Melf

Connie4

Since there is still no test for ovca, it was nice that you were accidentally diagnosed with early stage ovca. 80% of our ovca sisters are diagnosed like me, late stage. It is no small miracle that I am a seven-year survivor and consider myself blessed every single day.

Wishing you all the best. Don't forget to "listen" for the whispers, early stage or otherwise.

God bless,

Connie

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