recurrence

Can women go onto live long lives with O.C? is it best not to get O.C back the first time for as long as possible? because then when it does come back it becomes much harder to treat for everytime it comes back, is it always just about shrinking the tumor or can it be succesfully treated and you can have long spells of remisson i.e years in between each treatment?, is their plenty on offer for treatments to work succesfully?, or does the treatments just come to a complete stop, when your body can no long tolarate it, do different stages have better out looks? sorry its such a loaded question!!

sarah.

11 Replies

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  • Hi Sarah

    Having read many people's stories on the online support forums it is difficult to answer as everyone of us is unique and therefore we are not a statistic and if we just went with the statistics we would all be very depressed and give up. Later stages mean the cancer has spread which mine had but I have been in remission since January 2010.

    There seems to be quite a few treatments available from what I have gathered and even if you are allergic to the gold standard treatment of carboplatin and taxol then alternatives are available. I think a positive mindset and also some of the dietary advice that has been given on previous questions goes a long way to preventing a reoccurence. I think even if the cancer does reoccur it does not necessarily mean it is then going to come back again and again. Last year I met someone who had ovarian cancer and then it reocurred about 11 years later but she was fine now.

    Personally I have a strong faith and know absolutely that God was with me when I was in hospital so whatever happens I trust Him.

    Best Wishes.

  • My advice is similar to the above. If you are not already at a major cancer centre with a gnae oncology dept with at least 2 - 4 consultants, I'd suggest moving to the closest one to you - ask the Ovacome Help Line for their suggestions, because that's who solved my questions about my initial treatment within literally two calls to them.

    As for outlook, yes and no is the answer. That's a yes, different stages and grades doo affect the overall statistical survival propects, but as one famous surgeon said, you are an individual and not a statistic, and there are no statistics that I know off that apply to individuals.

    As for treatment, it depends on a lot of factors, the main one being the knwoledge and excellence of your gynae oncologist. I am fortunate that one of the most famous ones both in the UK and indeed worldwide has taken me on as his patient.

    I had a brief recurrence scare last Friday, after my initial blood test four weeks ago involved a tripling of my CA125 - still well below normal limits, and a C reactive protein test, which is a measure of essentially inflammation had literally skyrocketed from its normal 1 - 2 to 197!

    So my oncologist said to me, you go downstairs, my dear, have your blood samble taken, I will call the lab and tell them to do it immediately for me, you go away for about 40 minutes to an hour - check with my sectretary as you are leaving, and she will give you a better idea of when I will be able to see you.

    I did as he suggested, his secretary gave me a slot between 45 mints and an hour later, I walked out of the clinic wing, walked around for a bit, sat down and had a very small cappuccino and a large bottle of still water blended with tropical fruits (mango and papaya) which was delicious. I then lapsed inot my worst habit of all time - smoking, which I gave up 20 years ago, apart from usually a fag at a Christmas party once every 3/4 years, picked up ten of the lowest tar nictotine and carbon monoxide available, smoked one, walked back, was told my oncologist was ready to see me.

    My oncologist told me, right, my dear, the panic is over for the time being, your CA125, whilst still double it's last level, has fallen six points. But the one that really worried me, the C reactive protein, is back to your normal level, it's zoomed down from 197 to 2!!!!

    I was very relieved to hear that news, as you can imagine. I did confess to having had a fag after the blood test, and I did get a brief row about that, during which my oncologist who is about I guess ten years older than me, told me that he and his first wife had both smo0ked their way thru' medical school, as many of them did during these days. He told me that, to this day, he treated himself to the odd cigar, usually 1 at Christmas, I on holiday, but he makes sure he doesn't actually inhale.

    I will update you all on my next blood test which he says should be repeated in a month, to check CA125 has normalised also.

    All this was achieved at a major gynae cancer centre in London, where I am lucky enough to be able to go to because my husband works there. He has a rented flat, and I live alone during the week in Yorkshire.

    So, literally anything at all can happen to anyone at all. My oncologist put the wonky results down to a slight heatstroke and it's consequences, which were a bout of vomitting, dehyrdration, medical instuctions to take rehydration salts, sleep, yet more vomitting when I woke up, phoned the GP, given appt & prescription etc.. And hence, up to London for the onc. appt.

    Hope anyone who's read so far isn't bored. But that is what treatment at a major gynae oncology centre can do. Believe me that, on the NHS, anything is possible, with the right team treating you.

    Sorry for any literals, down to me typing too fast, Please forgive me.

  • I am one of the support line nurses at Ovacome. I will try and answer your questions as fully as I am able but please do feel free to give us a ring if you would like to discuss things further 08453710554 Mon - Fri 10-5. It is important to realise that everyone is diferent and so this answer will generalise what may happen.

    Usually the longer someone goes without recurrence the better as this suggests that the original treatrment has worked better than if it returns more quickly. It is usually the case that if it is does return it is likely to become more like a chronic illness where people will have good periods of health in between needing further treatment. We have ladies who have have 3,4,5 or more lots of treatment and they are still keeping well 9 or years after being diagnosed. It will of course depend on the response that someone has to treatment but there are several types of chemotherapy that can be used and there are trials that are taking place to try out newer treatments.

    In general the prognosis does seem to be better if someone is diagnosed at an early stage but do remember, that although it is not always the case, there are women who have been diagnosed at more advanced stages who do very well. We even know of a lady who was diagnosed with stage 4 and they were unable to operate but she had some chemotherapy and she was alive and well 17 years after diagnosis

    Best Wishes

    Ruth

  • Hello Sarah,

    All questions are welcome here and I think creates a great wealth knowledge and experience from the responses - so don't worry on that score.

    As with all answers which I give it is obviously a very personal experience and view point which I express and give it in the spirit of open and honest conversation.

    Personally I was diagnoised with Ovarian Cancer in 1998 surgery, chemo, surgery and here I am 13 years later (which is my lucky number :) ). I intent to live a long life and if having Ovarian Cancer taught me nothing else it taught me to enjoy it.

    I have the same worries and insecurities as everyone else touched by Ovarian Cancer and dread my check ups and CT scans but have them anyway, hate when something causes concern with the Doctors and sometimes I end up a quivering wreck in private but then I come back to my normality and carry on regardless enjoying myself and making the most of my life and living it.

    In short I am no different to anyone else I have learnt to deal with it in a way that suits me and I know that it wouldn't suit everyone but thats the part of being human I love - our differences.

    Best wishes

    Heather

  • Hi everyone, that answered my question, a big thank you, I just wanted to ask Ruth Payne a question, when you say diagonsed early do you mean stage 1 or that the OC is operable? ie nothing left behind where they have to do chemo first and then surgery and then chemo? or if it has spread which can be stage 4 its what they call complete debulking succesful surgery first time around.

    thanks Sarah.

  • Hi Sarah

    Just to add to what everyone else as said - i think that a lot depends on individual cases but .. . I was diagnosed with with stage 3C OC in 1998 and had surgery followed by carboplatin. I then went 13 years before recurrence - in fact there is still some debate as to whether it is a recurrence or a new cancer. I then had 6 cycles of taxol last year and am currently on cyclex ??? and am feeling fine. My oncologist says that she is hopeful of a more substantial remission this time and then there are other drugs to move on to. I was initially horrified at the idea of moving from drug to drug but i have been so well this year, despite the treatment, that I am beginning to see her point about giving me much more quality life to enjoy. So I would say that while treatments are working, and provided that you take some control of life style, it is perfectly possible to look forward to good years.

    Good luck

  • fantastic, i'm feeling much brighter thanks

  • Hi AngleaAbell,

    You mentioned that you are on a drug called Cycelx, is this a permernant drug you are taking? to prevent a recurrence in the future? or was it a drug you took while you were having your Chemo? I often ask my oncologist if their are new drugs that I can try and he say's not at the moment may be in the future if and when the cancer returns.

    all the best Angela.

  • Hi Sarah, Whilst everyone with O.C. circumstances are different, I thought you would like to know that some of us are still here many years after first being diagnosed despite having recurrences. In my case I was originally diagnosed in 1996 at the age of 46 and had the standard surgery and chemotherapy available at that time. In 2000 I had a relapse and had further successful chemotherapy. In 2003 another recurrence. I did not respond quite so well to chemotherapy this time and so also had to have further surgery to remove a tumour. My fourth recurrence was in 2007 when a tumour was discovered nestled between my kidney and liver. It was decided that this should be removed surgically followed by chemotherapy. Since then I have been in remission yet again! I have been told that, due to my history, it is most likely that I will need further treatment in the future. I am now 61 and have seen my children grow into adulthood. I know that not everyone is as fortunate as I have been to respond so well to treatment. There have been some very difficult times each time my cancer returned, but I have been blessed with long remissions. In a way you could say I am "living" with cancer. My very best wishes to you, Sue.

  • Hi too everyone who answered my blogg very much appreciated, especially, Sueart that was just the sort of answer I was intrested in, it shows me that life does go on and you do just get on and live with O.C even thought it is not a pleasant illness to have, and the future is always a bit of a worry, its my loved ones that I think about, and how much they make me got on with my life and dont treat your life different just get on as normal, and be kind to yourself because we are so special! and not to be doom and gloom!! which I'm very good at being, I never new I could cry so much.

    thanks again

    sarah.

  • Hi Sarah. The drug I am on currently is Caelyx which is a chemo drug. I will have my final treatment in this cycle in August. It is to shrink/inhibit the tumours. I had carboplatin in 1998 then Taxol last year - and this one has been the easiest to deal with. Apart from a very tired week after treatment I have been absolutely fine and able to continue to cram a lot into life. I agree with the answers above. In 1998 the surgeon and oncologist weren't all that hopeful and I was grateful that I had seen my children grow up. But I had 13 years of remission when I enjoyed seeing grandchildren become young adults, traveled, worked and had a great time. I also had a very good break between last year's chemo and this and my oncologist says she is hoping to get me another good remission. Meanwhile I able to work (very part time), enjoy family and friends, and many activities. BUT - it does take time to get your head round what has happened to you and to adjust to living with uncertainity. It doesn't happen over night. So - as others have said - be kind to yourself, cry if you want to, and let your mind take its time to catch up. I have found it extremely helpful to talk to specialists on the team - including the hospice nurse - who helped me talk through worries about family and other other niggles in a 'normal' way.

    Good Luck Sarah - I will be thinking of you.

    Angela

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