Good morning all. After a very short period of remission (5 months) following more than 9 months of chemo prior to that, the cancer is back and spreading. My oncologist had said that I may have had several years in remission but now - this is my third bout- I'm looking at only several months survival (worst case) and a couple of years (best case). I've always been so positive but I'm finding it hard to muster the strength to go on. How can we find hope without being in denial?
Best wishes to everyone out there,
Joan xx
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Bimmo
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Hi Joan - I read your post and have a lot of sympathy for your situation (I'm about to have a scan for suspected recurrence too). Personally I've always made a point of not asking about timescales, as from what I read and hear from everyone, the experts simply don't know enough to advise us properly. We know that we are all different, so I'd take that on board. Some people on here appear to have gone through years of treatment and are still going strong. Let's join them!
All the very best - enjoy every day as it comes. I live in Scotland so a rare day of sunshine here again has helped me. Don't think ahead too much, just live for the now if you can. I know it's difficult to be positive all the time (and indeed sometimes it's annoying being advised to "think positive"!)
Joan it is hellishly difficult to remain positive at times. I feel for you. Will the chemo be different this time? I know there have been women told they have only months then go on for years and then ladies diagnosed 'early' but unresponsive to treatment. It's a lottery disease and loathsome in every way. I echo what Caroline has just said; that the experts simply do not know enough to advise us properly.
I find the most valuable information here or on our FB page. You could maybe have a little chat with Ruth who might help you make sense of things..
I hope you feel a little brighter as the day goes on.
Hi Debs and thank you. Yes, it's a different treatment this time so I'm hoping that I may respond well. Hope you're feeling okay and enjoying the beautiful weather in Southport xx
Hi Joan . I read your post with sadness but please don't give up hope, I was originally told I had a couple of years over 8 years ago (9 in October), still here despite two recurrences, each day is a bonus to be enjoyed, a positive. I found it hard to muster the strength but new treatments come along all the time and I know people who were given days but went on for years. I hope you can find some positives and carry on fighting. I wish you nothing but the very best . Kathy xx
Hi Kathy, it's reading accounts like that, that have helped me so much over the past couple of years. This website has been a Godsend! I'll try and muster my strength again, thank you xx
Trust me Julie Im far from amazing lol but sometimes I wish I could just reach out and give everyone a big hug, I cant but hopefully if I can just give one person hope then thats what keeps me posting, sometimes I hesitate to reply to posts but we all need support, Ive been lucky so far, just wish everyone was xx
Hi Julie, thats not doom and gloom at all. My mum was in ICU and was told she probably had a few hours to live. Well after a week she was moved to a side room then a week later asked to go home. I arranged for an ambulance to take her home and was told by a Macmillan nurse she wouldnt survive the journey to which I replied well at least she will believe she'll be home. Well we made the journey, and I nursed her at home for a further 3 weeks during which time, we laughed, cried, made memories and its a time I'll cherish. I Think thats why I never try to give up hope. As for Prof J I'm under his care though Ive never met him lol. xx
That was precious time and a lovely thing to be able to do for your mum.
Do you see Dr Clamp ? Next time you are in for your check up give me a shout as I'm over every 2 weeks we could get a cuppa. I met Jan50 a few weeks ago xo
Hi Julie. Yes I see Dr Clamp lol or more usually now I tend to see Marisa. I only go now every 12 weeks for a check up, not due now until end of July. My appointments are always on a Wednesday. Are yours always as structured? xx
Hi Bimmo. I understand your feelings of hopelessness. I posted that I would do wholistic approaches and was met with doubts. This is serious and I am taking Internal oxygen because cancer cannot live in an oxygenated body. I am working towards an alkaline body. No sugar. It feeds cancer. I had magnet treatment last week that left me very sick for 24 hrs. Pulling out dead cells, fungus, parasites and bacteria. Have to cleanses your body first. Exercise 1/2 hr. Sunshine. Support group of people who have
Overcome and encouragement in the steps we take, positive attitude in God and His
Lessons He teaches to share as I am doing today. God bless and let Him guide you
Thanks Macar and good luck with your treatment. I've read the same advice but it seems to take a while to filter through to conventional treatment. I read about avoiding sugar but my meal replacements are packed full of it! I'm experimenting with herbal pills right now xx
Hi Joan. I too read your post with sadness because I am in the same boat as you. I am in my 2nd recurrence and 3rd regime but it's not working. For the past 2 cycles my CA125 has gone up. I too had short remissions ( 7 months and 5 months) I have been in treatment since September last year. I worry I won't ever get well or that I have to go on long term chemo. I worry that I may have other illness like kidney or liver failure due to chemo. I worry that my Onco will say no more options for me. So much to worry. Even though I feel disappointed after each tumour maker test, I still hope. Maybe I am a fool to keep hoping. I pray every night the same prayer. That God is good. HE will heal me.
Hi Joan, that is also my name so have to use it! I am sorry you are down and sad at the moment and see no way out. I agree with the other ladies on here, doctors are only learning from us and they dont really know. I too was given a very poor prognosis in 2010/2011. I am still here stable at the moment so how long is a bit of string? It can be any length. So hopefully you have a treatment plan and will settle in to that once it commences. You could get longer the next time, there is always hope you will. So enjoy the weekend and then start into your treatment with renewed strenght, We do get it from somewhere to continue on.
Hi Joan and thank you everyone, for taking the time to respond. Once again, I'm blown away by the strength and courage of the wonderful women on this site. I suppose the answer to my own question is that no, we never give up hope. Love and best wishes to all xx
Everyone is different. Your oncologist can't predict what will happen to you, s/he can only give an answer based on personal experience and statistics. I'd say now is the time for you to consider second opinions, and third and fourth until you find a team with a different mindset. There's several women on this forum who have been where you are now and confounded expectations, and you'll find many more if you search the American site Inspire/OCNA. You have to become your own advocate, explore the possibility of trials and even surgery - to do this you need to go to a major centre. The Ovacome helpline can advise. Beyond that, there's a new private clinic called Care Oncology that offers certain drugs that have shown anti-cancer activity. Consultations are not wildly expensive.
My first oncologist gave me a bleak prognosis. I found another one. I read a piece by an American surgeon who said prognoses are dangerous, because a prognosis can create a false expectation in both the physician and the patient, a self fulfilling prophesy if you like.
It is extremely difficult. I'd suggest meditation, listening to Bernie Seagal's CDs, relaxation and visualisation. Think not of the distant future, but of something pleasurable you can do in the next few days or weeks. People are confounding statistics and bucking the odds all the time. I hope you'll be one of them. Vx
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