Any experience of these symptoms is it recurrence?

hi all, I have been meaning to post some experiences for a while to encourage those newly diagnosed as I have had plenty to be grateful for. I was diagnosed eventually in july 2009 on emergency admission in truly terrible pain as 3c well advanced, too extensive to operate initially so was shrunk with 4 carbo taxol treatments followed by big surgery and two more chemos. All went as well as possible ca125 dropping from 1800 to 16 by end of treatment in feb10 and me recovering sufficiently to vist scilly isles, Maldives costa rica, Canada, Italy, new York , and ride horses daily , White water rafting , cliff jumping, buying and training a new wolfhound puppy, getting a new young horse, walk 13 miles for the local hospice, as well as working long hours running my development company take up pilates and start a new anti cancer diet/lifestyle. So all going remarkably well until last week when back pain increased always bad due to breaking 3 vertebra about 4 years ago so not unduly worried then I've started to feel really sick, bloated etc with nasty sharp cancer /chemo type pains, organised blood test which happily still says ca125 is 16. still feeling really grim and waiting for a scan date, then thought this feels like someone has given me a large dose of chemo also noticed neuropathy in feet had got worse which is odd, so does anyone have any clues or similar experiences. It would be great to hear from anyone who might be able to shed light, don't worry about telling it as it is as I 've read all the statistics and according to consultant am on borrowed time which makes each day a huge bonus , but if you are newly diagnosed and I do remember the feeling that it was all over, I'm proof that you can still achieve masses of things after a really terrible prognosis, I was 49 when diagnosed and recently separated after an 18 year marriage so masses to comes to terms with but on the whole obviously not great but there have been loads of good things come of it , my hair grew back thicker! My friends were brilliant , I really appreciate each day and get on with things that I want to do while I can, my attitude to people's silly issues has changed and I tell them to get a grip,I can be a bit rude at times but heyho, have enjoyed fundraising for hospice, ova come etc and I am determined to keep going I certainly know a lot more about cancer , nhs and hospitals than I used to but probably need to know more so any help gratefully received and I'm very happy to share whatever I've learnt

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  • Dear Jane,

    Has it ever occurred to you to slow down and breathe? I'm not being rude, but you said 'tell it like it is'! Can you find a full-stop now and then, and breathe deeply!

    There are lots of other possibilities for the cause of your symptoms; muscle strains, menopause, injury, virus etc. Your ca125 is steady, you say, so I would suspect one of the others. I found pelvic muscle strain was a big symptom especially about a year after surgery when the muscles are trying to act normally again, despite having been cut in half. Also, there is the possibility of other surgical spin-off; adhesions, etc. You might have done too much too soon after surgery, and caused other problems.

    Get your gynae-oncologist to assess what is going on, and the scan should help with that.

    I hope you get an explanation and solution very soon.

    Best wishes,

    Isadora.

  • I'd get another oncologist. The fact that you've responded so well to initial treatment and that you've been disease free for more than 18 months after chemo are both positive indicators. Even if you are in the early stages of a recurrence, you have a good chance of responding well to treatment and getting back into remission.

    I think that oncologists sometimes hand out these grim prognoses for selfish reasons - they then don't have to cope with a shocked and tearful patient. Some women do survive stage 3c and even stage 4 - there's no reason why you shouldn't be one of them. No oncologist knows when or if you're going to recur.

    Have you had a pelvic exam? That can reveal a lot. Also, are you having a PET scan? That's much better than any other scan for detecting a recurrence.

    I was diagnosed at the same stage as you, at around the same time. I don't know the specifics of your cancer - everyone is different - but I decided after the initial shock and anxiety had worn off to continue my life as normal. I read as much as I could and found the best oncologist I could.

    I understand your worry - sequentially this summer I've had heat stroke, a UTI and major orthopaedic problems, which give rise to all sorts of worrying aches and pains. Thankfully though my CA125 did rise it returned to normal and I'm still disease free. Your pains may not be a recurrence at all.

    I haven't got a crystal ball, so I don't know what is causing your pains. I realise this won't help much, but my thoughts are with you. I hope you get an answer soon.

  • Hi Jane,

    Wow you have packed a lot in and I am rather inclined to agree with Isadora, whilst you want to live life to the full, you have to realise that your body has gone through a lot of battering. Yes the external scars may have healed but internally it does take so much longer.

    I was a regular going to the gym, actually doing weights to keep my weight up as our family genes are very skinny. Also I was doing it to prevent the onset of osteoporosis, as I have been on steroids since my early 20's for asthma, plus a hysterectomy at the age of 42, so I needed to strengthen the bones.

    I sought the advice of my Oncologist about what I could and couldn't do after surgery and I did go back to the gym ,but never ever got back to the level of fitness I was prior to surgery. Even now almost 5 years after surgery I get a strange pain in the abdomen when sitting in certain positions, can't eat large meals as my stomach can't cope like it used to.

    I can understand that after all that has happened and the breakup of your marriage you needed to prove a lot to people. But surgery, cancer and chemotherapy does knock the stuffing out of you and whilst I agree exercise is great for you, you should let your body tell you when the batteries need recharging.

    Yes poo to statistics, they didn't think I would get out of hospital after my surgery in Oct 2006 and in Jan 2008 I was given months to live. But i am still here fighting the fight and am going to prove that although I do have cancer, cancer does not have me !!

    Good luck with your scan, it is refreshing to hear that your cancer marker is still very low.

    Anna x

  • Thank you all for replies, lots of common sense and experience there, am feeling loads better , still awaiting scan, but off anti nausea medication and back on my horse, suspect her wild behaviour may be a contributory factor , leaping and pulling me about. \\also happy to discover 2 people who work in my office were sick with similar symptons, so they took time off and thought they were ill whilst i carried on and thought i was in serious trouble, they are a bit sick off me quizzing them on the finer details of their symptons as i'm desperately trying to make mine into the same virus.

    Meanwhile i do agree with the general consensus to ignore doomy prognosis, Jane Kelly who writes for the telegraph and has Oc had exactly the same experience from a consultant and was really upset by their total denial of any hope and i have to say that both my surgeon and my oncologist have been pessimistic in line with their personalities, surgeon bombastic ( usually quite good fun) and oncologist always looks sad but sweet, and told me there was nothing i could do but carry on as normal. Doing nothing is something i am not good at so i have tried to research people who have survived and how they did it, hence anti cancer diets etc. Frankly even if its all a load of bull at least i will go down knowing I did everything i could which will be better than thinking what if i had done something and i think if you are trying it helps the sense of hopelesness and gives back a i[ttle bit of control. It is also logical to assume that whatever ive done in the past didnt work so it might be a good idea to make some changes. I have stopped eating cow pie and cream for every meal, lost a bit of weight and eaten my first greens! with tumeric of course.

    It is hard to strike a balance between cracking on with it and overdoing it, but am generally finding the more i do the more normal i feel.

    Thank you everyone for your support and help, and good luck with your continuing battles, lets hope that we will all be making the satstistics of the future a whole lot brighter

    jane

  • Hi Jane,

    One of the symptoms of a prolapsed lumbar disc is pain in your legs/feet, so you may have a central disc prolapse if you're having pain in both feet, caused by irritation of the sciatic nerve(s). The nausea/bloating may not be connected at all.

    Good luck and I'll keep my fingers crossed for you.

    Sally XX

  • Yes, fingers crossed. I have now survived 10 years since 3c! After a while you will stop thinking about it with every pain and niggle! I echo the voice of one of the above, for goodness sake slow down. Life can be just as enjoyable, if not more so, when you take it slowly and enjoy the detail. You are lucky to have become as fit again as you did, so hang onto that. I have been fatigued and often in pain ever since surgery and chemo all those years ago.

    But I'm still h ere an I enjoy every single day that I am!

    Good luck.

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