Cancer returned

Hi everyone, this is my first post. I was diagnosed with ovarian cancer 1c 2008. I have been in remission since July 2009 after chemo and avastin clinical trial. The cancer has returned and is in my lymph nodes. Ca125 had been increasing so oncologist sent me for a ct scan. I know I have been very lucky to have had over 5 years in remission but at the moment I can't seem to get my head round things. I see oncologist again in May because I seem ok and I didn't complain of any pain. But since my new diagnosis I seem to be getting aches all over. Maybe it's all in my head!! Has anyone out there been in similar position to me, I know my cancer is not curable but wondered how long I may have left? I have so many things I want to do but have been looking after elderly relatives and have put things on hold for the past couple of years. My mother in law has terminal cancer too, so my husband has relied on me a lot but he in shock now.

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  • Hi Susan, after reading your post felt sad for you but at the same time happy that you have had quite a long period of remission.

    Whilst I am not in the same position as you , but fully understanding your support and care for other members of your family, I am reminded of the advice given to me by an eminent Cancer specialist at The Royal Marsden hospital, who when I admitted that I felt guilty about my Cancer, for my family, said, this is your time!! You owe it to yourself, you must now make time and stop worrying about everyone else!!

    Whilst I felt his words were somewhat harsh, I believe he is right.Those of us who are wives,mothers and daughters are always there for everyone else. Maybe now is our time.

    Much love JackieO

  • HI Susan, so sorry to hear you have this thing back. You got a long remission and did very well on the Avastin so. Just think of it this way, since your first time around there are new drugs and you can probably have carbo taxol after such a long remission. It is a blow to get but you can fight this and you will fight this. In another four or five months think treatment will be finished and plan a little break, all the better if you can do it before you start treatment. When I was first diagnosed in 2006 my Mum had the beginnings of dementia and during my treatment had to be put in care. I do regret that, but we cant look after everyone either. She was probably safer there and she was extremely happy and settled there. You are probably stressed out at the moment thinking of what lies ahead treatment wise and also thinking of your mother in law. But the doctor is right you have to look after you. My advice is to try and get as much support as you can to help with your mother in law and have that in place in the next month or so. As to your question about how many years, I would think you will go back into remission when treatment is over. Maybe you could get in touch with the Macmillan nurses and get some advice for yourself. In the meantime, rest eat well and try and get out for short walks or take time for coffee with friends. You have to be kind to yourself. My OC is managed and stable at the moment, my last treatment was Gemzar and Avastin, I am still on Avastin and the 125 is staying in place. I have a scan due in April and hope for the best that is a reprieve for the summer anyhow.

  • Dear Susan - I had a very long first remission, over 4 years, so was absolutely devastated when it recurred and thought that was the end BUT I now understand that there are many many treatments out there and more being developed all the time so hold in there. You can see the story in my profile. I have no pain either but I did have a lump I could feel so knew it was back. I'm now on letrozole and my tumours are being checked for mutations (BRAF and others) before starting treatment No.3. Stay strong - Nicola x

  • I too was 1c and had recurrence in lymph nodes after 2.5 years. Had another round of surgery and chemo and so far so good.......

    As others have said, cancer does force you to put yourself a bit more first than you've tended too.....

    My mother found a residential home for her mother (who'd been living with them) when she (mum) was diagnosed with breast cancer.

    She still worries about this, though it was definitely the right thing to do.

    Not an easy decision to make, but your main focus has got to be you, so other ways of managing your care-giving will need to be worked on - by everyone!

    Best wishes with it all.

  • Dear Susan. I am sorry you have a recurrence to deal with now on top of everything else. 5 years was a long remission and you have been so lucky in that regard. i got 8 months before mine returned but like you I was put on wait and watch and have been on it for 7 months so far so feel blessed.

    With regard to your mother in law, this is tough on all of you but you now need to start putting yourself first. You need to ensure that you are looking after you. By all means go visiting but remember, you are not her nurse. Your father in law and husband need to get help sorted out for her. Let the powers that be know that you have cancer and it has recurred and are no longer able to do what you used to for her. This should go in her favour for a care package to be put in place. Act now, don't leave it.

    My father in law was in hospital for 2 weeks there with pneumonia. He was 90 on Tuesday, but whilst he was in I asked to speak to the Occupational Therapist and explained to her that my mother in law would not be able to care for his personal needs (toileting) nor could she get him upstairs, up from a seat etc as she has fibrosis of the lungs and has had cervical cancer. My mother in law piped up at that point that I could not do it either as I have ovarian cancer which has recurred. A package was put in place whereby carers come in the morning to get him up, toilet and then wash and dress him, they come back in the evening and get him to bed etc. We had to get a single bed downstairs for him so he now sleepos in the Dining room. My husband and brother in llaw put the dining table upstairs.

    As the other ladies have said there is always a Nursing Home nor Hospice to consider. Perhaps your nlocal Hospice could help to sort something for her.

    Remember, you need to concentrate on you and hopefully you will have a long time on wait and watch before starting treatment.

    Ann xo

  • It is terrifying, isn't it. I, too, was in remission for 5 years and then bang...came back and metastisised to my lung. That was in 2010. Here it is 2015, and I have been on many different chemos and programs and am now on nothing. I was on weekly taxol and an estrogen prohibitor drug used for breast cancer, then off the taxol, stayed on the drug for another 12 months and now CA125 normal, and am on nothing. I no longer have my lung drained and am doing just great. So now in my 11th year and know there will be many more years to come. Oh, I was originally very late stage...so the one thing to know about Ovarian Cancer is yes..it does come back, but no, it does not mean you have to die...you can live with it for a very long...normal lifetime....as a chronic disease. So, go on....enjoy your life..keep kickin it.

  • Hi, just jumping in here to say thank you to you, to hear that you were late stage diagnosis and still offering advice 11 years later helps me facing my second line after only 6 months chemo free ( but have been on Avastin) .

    Dawn

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