My question is this. Do people recover from recurrences and live many years afterwards? Or is it the case that after their first treatment if it comes back, it is just confirmation that sooner or later the oc will be terminal?
Sorry to be grim at this time of year.
Christine
Hi Christine,
People do live many years after a recurrence, we have read about many people on this site that has had multiple recurrences.... I have had a recurrence and I am currently in remission for a second time and have been for twelve months now.... I am however deemed to have incurable ovarian cancer, my cancer is now called a "progressive cancer" i.e. It won't go away but there is no way of telling how long my remission will be or when the cancer will return, my oncologist said he will only use the word "terminal" if my life expectancy was about three weeks, when I had second line chemo it was written on the form as being "palliative" chemo not "curative" like the first chemo that I had. best wishes love x G x
Hi Gwyn, and everyone.
You might want to look at my blog,
ovacome.healthunlocked.com/...
especially the story of Sandy who had stage 4 Ovarian cancer in April 1999. Have a good look. Aspirin and/or anti-inflammatory drugs like ibuprofen or celecoxib can help to prevent spread of cancer, after it has gone into remission, and so help long term survival. There is much medical evidence to prove this, as per my references.
I am a retired GP, and so have some idea of what I am talking about. As you will see from my blog I have been taking ibuprofen myself since after my second course of chemo which finished 22 months ago. I had stage 3 PPC (primary peritoneal cancer) which is in the ovarian cancer spectrum.
Please do all take a look at my blog. I have been told that the Ovacome medical advisory board are looking into the comments on it.
Best wishes and love to all.
Eileen xxx
Dear Eileen,
I can't believe I missed your blog on this, but having read it now I realise it was when I had a problem with my eyes so was trying to limit my time on line.
Your blog and other comments on it are so interesting thank you so much, I have read before about Sandy's long cancer free remission (or cure) as I don't think she had a recurrence (it could be a cure) but it is also clouded by the fact that she is on the budwig diet and having looked into that myself I am not at all convinced that it is the right way to go (allthough her cancer free time is impressive) so I did miss the fact that she has been taking aspirin every day for all those years, am I right in thinking that you would favour ibruprofen over aspirin? I have an appointment with my oncologist next week, I hope I will get the opportunity to bring this up with him. I have only just read your blog and haven't yet managed to read the ref links you have provided but I will.... Thank you once again for this information best wishes x G x 
Hi Gwyn.
No, I know nothing about the Budwig diet. As a medical person, I tend to go first for what is proven in medical journals and is mainstream, though I am open-minded enough to rule nothing out instantly. To me, it looks that it is the aspirin and/or the celecoxib (celebrex is trade name) that has done the trick with Sandy. Either would have a good effect.
Just from my own experience, I would recommend ibuprofen, along with omeprazole to protect the stomach, but aspirin, maybe in a higher dose than 75mg, eg 150mg, daily, or celecoxib at at least 100mg twice daily (Sandy used 200mg twice daily) would probably be as good. But I haven't really looked into the dose of celecoxib, and there is some doubt about the best dose of aspirin for the best effect. So I would go with what I know, ie ibuprofen, just from my personal experience. Yes, the references are well worth reading and digesting. The cancer research uk ones are clearer to read first, as they are designed for the general public.
Good luck with speaking to your oncologist. As I say, it was my GP, not my oncologist, who agreed with letting me try ibuprofen, with omeprazole cover, as she agreed with me what did I have to lose. My oncologist said she could not recommend it as there were no trials proving it yet. So I started it without telling her at first, having discussed it with my GP, but my oncologist is now quite happy that I am on it, and that I stay on it. Your oncologist may have a similar view.
All the best.
E xx
Hi Eileen,
My oncologist would not be at all interested, I realise that they have certain perimeters to adher to, so perhaps my GP would be the right person to discuss this with.
Thank you love x G x
Dear Eileen
I am very interested in this, thank you for posting. Going to look at blog now, just in middle of 1st recurrance after pretty long remission. Hate it but love posts like yours which are SO helpful. Thank you. Will update you too.
Nicola xx
I wish things were more clear it and known about ovarian cancer... Just the "unknown" can be enough to keep one up at night! I too would feel relieved to meet a woman who has been cured of OC and been cured for many years! It would bring me so much hope and relief. Of course I'm so happy for women who are able to beat OC again during a recurrence! I'm sure I'll live with some amount of fear when I finish chemotherapy and need to live day to day.... Month to month.... And pray for the best!
Hugs to all my sisters going through this out there! Xoxo
Erika
That's opened my eyes a bit. With everyone saying my treatment is curative I had with possibly a little reserve, assumed that once the chemo is done, that's it. If it's curative, then at what point does it come back? Where would it come back? Why would it come back? Does that make sense?
Hi Lily-Anne,
When you are first diagnosed it is considered to be curative, particularly if it is found at an early stage (like yours) they can't be certain whether or not it will come back (if found early there is a good chance of it not returning) if on the other hand it is found at a later stage and the operation has been successful i.e. every visible sign of cancer has been removed then they give chemo to mop up any cancer that might be left that is not visible to the naked eye or visible even under a microscope then it is written at the top of your chemo form "curative" (this is the reason and hope for having chemo) the second time if it recurs it is now considered incurable so palliative chemo is given to attempt to shrink the tumour and hopefully put the patient into remission, so the first time it might be a cure and it might never come back, the second time as it is a recurrence, then is not considered a cure (I hope this makes sense) so at some point it will recur....this is why it was important for you to have the chemo after surgery to give you the very best chance of your early cancer not returning... and we are all pleased you are doing this...I have no wish to alarm you but you have a very good chance of it never coming back...lots of love x G x
Hello.
Staging is an important factor here. I don't know the specifics about the early stages, but know that the overall prognosis is significantly better than for 'advanced' vCa (stages 3 + 4).
The stats for folk diagnosed with 'advanced' OvCa (of which I am one - high-grade 3b) indicate that even with a good response to first-line surgery + treatment and a NED status afterwards, many (approx 70-80% the last time I looked) will relapse at some point. Of course this might be years and years later. Nearly 4 years in my case - I know of others who have relapsed after 10 years. Roughly 20% won't relapse - but there's no way of knowing who those 20% will be at the diagnosis stage. So we might as well live as if we will be in that 20% - until proved otherwise. There is no doubt that there are women who have been cured, even when diagnosed with advanced OvCa - there is quite a famous one HelenStandsForHope who contributes to the Inspire forum. There are a number of threads on that forum about cure and very long-term remissions.
At the outset, my consultant would not say I could be cured, but talked about shrinkage. From the outset my eyes were wide open. When I relapsed, I was sad+ disappointed that I had not 'made it' but not surprised. I asked my consultant what he thought was in store for me next and he said he thinks it will return at some point but expects a decent remission (18 months so far). As the months go by, every clinic visit has a distinct edge to it. I am trying to live as normally as I can but there is that sinking feeling that it could all change at any moment. This is just something I have to live with. Living with the unknown has become part of my everyday life.
The 'good' news is that with new treatments and techniques, many many women are living for much much longer than they did in the old days. For many, OvCa has become a chronic illness which is managed through medical intervention.
For those of you who are recently diagnosed, this is a hard pill to swallow. I know, I swallowed it myself. For some, relapse is worse than the actual diagnosis because it means the dream of being cured is over. However, until that happens, you are 'cured' in the sense that no one can know what will happen to you.
I sincerely hope this helps - but this is tapping into one of the toughest things about having ovarian cancer.
In my wifes case it has come back 3 times since her first chemo in 2011. But though i say 'come back' - the reality is it never went away, just that the chemo either held it at bay and/or reduced the tumours a bit. But once the chemo stopped, for her it recurred again each time. Now she is on her 4th line chemo.
However, we are trying to view this as a long term illness like say diabetes, and the chemo is her medicine, like insulin would be for a diabetic.
If i am totally honest (and blunt) i think eventually my wife will succumb to it......but hope that is a long long way away. Basically she tolerates the chemo quite well, she just cant get a long enough break from it.
My wife is hight grade serous (3c) so i guess the odds are against her....but equally there are others who have had/have similar and are still alive and kicking quite a few years later....i guess bottom line that is what each of us hope for ourselves and loved ones.
So good luck and hopefully you will be one of the lucky ones.....
I have come to the conclusion that it is true no one person is the same. It seems to apply in OC which can be a bit frustrating, when we are always looking for hope.So you have to try to be positive and live each day as best as you can.I know it is easier said than done. But once thing about this disease if you dwell to long you will go Nutssssssssssss!!
Regards Barbara
Thanks Gwyn, was having a bit of a panic. Then once the thought process started, why did I have a hysterectomy after the cyst was removed, as if it comes back it'll attach to something more major and then what is next, so imagination working overtime. I guess today, I'm thinking everyone on here has had a totally different experience, so it's hard to tell how it will go. I suppose I had been led to believe by my consultant that the chemo was it then get on with life, feeling better.
Yep, going nuts is a good description :/
LA x
Hi Lily-Anne,
It is natural to panic, no one blames you... it must be a very worrying time for you,but the more they take out with the operation the better the outcome and then the chemo is a bit like an insurance policy (just in case) so you are getting all the right treatment better that, than to worry later about what you should have done or not ...you really are giving it your best shot and good on you and your oncologist is probably correct that once your chemo is over with, you can then got on with living...and have a good life for all of us that maybe haven't got such a good prognosis...we all want you to do that please...lots of love x G x
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