25 years survival!

[Silver-J]

I'm writing this 25 years to the day after they told me I had ovarian cancer. I dont know how many other Silvers are out there, I guess not many, given the age profile and survival rate of this disease. To those of you out there battling it now I can only say that I am living proof that this illness need not be a death sentence and I hope that many more of you can celebrate this landmark in years to come.

[BusyLizzie]

Hi Silver-J,

In the immortal words of Grease...

Tell me more, tell me more...

What stage were you at? Which chemos have you had and how often?

Thanks for giving us some hope.

Love Lizzie

X

[Hidden]

Wonderful to hear of your anniversary! I'm coming up to 3yrs and hoping to make 25 and more!

Wishing you another 25 healthy and happy years at least.

Thanks for inspiring!

Isadora.

[Lindy4]

Silver

Thank you for leaving this inspirational post for us all. Everyone who contributes and reads this site whether regular or a one off visitor will feel uplifted by your words!

Congratulations and heres to 25 more for you and some!

Lindy

[psc031155]

Hello,

Yes, great news. I am not quite there yet but in July of this year I did some fund raising on behalf of Ovacome (tea and cakes - that sort of thing) to celebrate 20 years free of ovarian cancer.

I was diagnosed in February 1991 after being told that a rather large cyst was unlikely to be cancerous. Unfortunately it was and within a few weeks I was having chemo. I had four treatments of cisplatin (carboplatin was new and expensive) but by the fifth treatment my white cell level was so low that the oncologists felt that the risks outweighed the benefits.

The follow ups were excellent - scans every few months during the first year moving to two a year for the next two years followed by yearly scans for, I believe up to and including my tenth year. I saw my oncologist for ten years at the Bristol Oncology Hospital and would like to thank him and his team for the excellent support that I was given.

Yes, there are a few of us who are living proof that there is still life out there after cancer. I like to think that there is life out there after surviving many illnesses as from June 1994 I went on to spend 17 weeks in hospital with a very rare form of meningitis (cryptococcal) which included 3 brain operations and more chemo! So in the summer of 2014 I will be going on to do some more fund raising!

There was no Ovacome when I was diagnosed so I am so glad that I had great support, some do not, did not. Today it is wonderful to have the opportunity to sit at the computer and read the stories of women from all over the country, the world.

Many thanks Ovacome.

Best wishes to everyone

Pamela xx

[SaraL]

Gosh, Pamela, you've had quite a time of it. What was the chemo for in 1994?

You brilliant women. I take some hope from your years of survival post-cancer. (I am seven months free of chemo and am NED.)

Sara x

[psc031155 in reply to SaraL]

Hello Sara,

They used what they described as a low level chemo to destroy the fungus that was attacking the brain - initially it was by drip through the arm, wrist, ankle (any place where a vein hadn't collapsed). This was for 6 weeks but after 5 days off the treatment the fungus returned so the next dose went directly into the brain. And this time, with the help of a shunt at the stomach connected to the brain, it worked!

But going back to cancer I was stage 1B, so again early, so I think in many ways I was lucky. Lucky that the cancer was caught early and with the meningitis just very lucky.

I got information from BACUP and joined a group of women who had mostly breast cancer. There was a woman who had a skin cancer and one had cervical cancer. I found this very useful along with reading as much as I could. Living in Bristol I was also very close to the Cancer Help Centre.

And to Janbeegee, yes I worried like mad every time I had a scan, almost to the point of pinning the poor radiographers down for an answer for the first three years, but it did and does get easier and other things happen in life to distract your thoughts. I found an art class that was great at this and boy was I hopeless (and still am) at art.

I hope this helps.

Pamelaxx

[Silver-J]

Thank you for all your comments and I'm glad I'm not the only out there with many years' survival under her belt so congratulations Pamela on your 20 years!

In response to Lizzie, like Pamela I had a large cyst that I was initially told was unlikely to be cancerous as I was only 20 at the time. However it turned out to be Stage 1A so I was lucky that it was caught early. They put me through a hysterectomy and 4 months of carboplatin - interesting that for you Pamela this was considered too new and expensive 5 years later, so I now feel lucky that I was given this drug, which was very new at the time.

Obviously this whole event was pretty distressing at that age, but every cloud has a silver lining so they say, and 25 years on I am the sometimes proud mother of two great boys - they are teenagers now. Adoption is not an easy road to travel but I do feel lucky to have been able to walk along it and I would not have missed a moment of it.

I would also acknowledge, like Pamela, how great I think it is to have an organisation like Ovacome, as being an ovarian cancer patient back then was a lonely experience. I did have close friends with breast cancer, but that is a different disease. I would also add that for me as well the Teenage Cancer Trust is a huge leap forward - being 20 years old on an adult cancer ward was a very traumatic experience.

Good luck to you all

Janet x

[Joelle in reply to Silver-J]

Janet,

What a lovely post it is so good to read a really uplifting story. I have just hit my 5 years (Diagnosed at 32, stage 1C mucinous, hysterectomy, 6 x taxol/carbo-platin) and I was rather pleased with myself for that but 25 years is amazing. As you say the support/ treatment sounds like it has come on a lot since you were diagnosed, this adds to just how brilliantly you have done.

All the best to you and the next 25 years,

Joelle. x

[wendydee]

How wonderful to read such inspiring stories! I agree that this site is so helpful too, allowing us to share is good news stories as well as worries and companionship. I am just coming up to my 9th anniversary, so have a long way to go yet, hopefully! Long may all you ladies continue to enjoy fulfilling and rewarding lives. Thanks, Janet ...and many congrats!

Wendy xx

[janbeegee]

Thank you, thank you, thank you all you survivors for sharing your stories!! I am at just the first anniversary of my first chemo, I got a brilliant result (an all clear in May) but can't help worrying over every twinge so this is just what I need to read on this bright Saturday morning.

love & hugs to you all

Janbeegee

[Hidden]

Dear All, Thank you all so much for your entries. I've just finished 6 courses of carbo-platin only and having had a scan this week look forward to meeting with my oncologist for her opinion.

It's a hard road to travel and I'm so very grateful for all the positive news. Good luck to you all. You're all such brave ladies.

Annie

[Hidden]

Yay! Lovely to read on a Monday morning. Like Janbeegee I am right at the anniversary of my first chemo, so am only just beginning to recover from the physical and emotional boxing match that the last year has been. I was 38 when it happened. So good to see some positive stories. I read on a forum once something along the lines of 'the long-term survivors are out there, but you won't hear from them often as they're busy getting on with their lives' (i.e.not posting things on the internet like us newbies!). So it's nice to hear from some of them.

[AngelaAbell]

Hi everyone. Great stories. I went 13 years before a reoccurance and am definitey a Silver. In those 13 years I cerainly got on with life and felt I was a bit a fraud retaining my membership of Ovacom which had just started when I was first diagnosed. Recently the cancer returned (or it could have been a new cancer - the oncologist still isn't sure), but my experience of those 13 free years has helped me - I know that with a little bit of luck it can be controled - and you can get cancer free years.

Good luck with those long remissions ladies

Angela

[Silver-J]

Hi Angela, sorry to hear that you got a recurrence after 13 cancer-free years, that must have been a blow!

Interesting that you use the word remission, because I never think of myself as being in remission. I guess after 15 years of not seeing an oncologist I consider myself "cured". Yet I hear people say that once you have had cancer you can never consider yourself cured, there is always the potential for it to return. Am I therefore being too optimistic in using that word? I don't expect a recurrence of ovarian cancer - I've nothing down there now but I will admit to checking my breasts regularly and keeping a watch on how my body is behaving, even after all these years.

Janet x

[Sarah23]

Silver-J

Your survival of 25 years is truly amazing was your O.C caught early? ie stage 1? and did you have surgey then chemotherapy? I understand any stage 1-4 can do well, the most important is having the succesful surgery, and a whole lot of luck after that which you have truely have been blessed with!!

Sarah P.

[Silver-J]

Hi Sarah, yes I was caught early as I said before, yes I had a complete hysterectomy and then I had carboplatin chemo.

I'm musing on what I said before about not being in remission - I've now come to the conclusion that I may not feel physically in remission but emotionally I think I will be in remission for the rest of my life because the fear of something happening again to me healthwise never really goes away - it is always there in the background and I wonder if other long-term survivors feel the same. Having said that I don't want you to think I spend every day worrying about it, far from it, I live a full and active life, but every once in a while the fears come back to haunt me.