Help please with my mum

I'm new to this site but hope someone can help me .my mum is 66 ,ovarian cancer ,diagnosed march 12 .biopsy showed serous adenocarcinoma .had 6 mths of carboplatin .went into remission for 6 mths .then at end of June 13 had to start 18 weeks of taxol .managed to complete 12 weeks of taxol .she got 8 full doses ,4 reduced doses as taxol treatment was becoming very difficult for her .then ca125 started to rise slowly.2 weeks ago it was 82 .last Monday we got the news we all don't want to hear .mum asked how long have I got ,the answer was months !!! Chemo was stopped .mum was sent home on femara 2.5 mg ( used in breast cancer but good got ovarian ) .to come back in 6-8 weeks and maybe they will do carboplatin chemo then .meant to say surgery has never been an option as she is stage 3c from offset .

Now the question is do we accept this or what ?? Has anyone been down this road? Am I missing anything ? What should I be doing apart from obvious ? Should we go for a 2nd opinion ? And where ? I don't want any regrets .i have no one to talk this over with.i want my mum for as long as I can but somehow I feel the dr is given up on her. Please please point me in the right direction.i need to be proactive.ive requested her 2 most recent ct scans ,still haven't received them .many thanks for reading this and if you have anything please get In

18 Replies

  • Hi, sorry to hear about your mum, obviously without knowing exactly why i dont understand why surgery wasnt an option, my wife was 3c and she had surgery and i think you will find many more on this site the same. I assume therefore that the docs have told you why they cand operate.....

    As for 2nd opinions, well in my opinion - absolutely, and 3rd if necessary. As for where then i suggest you speak to the Ovacome helpline, or depending where you are perhaps the Royal Marsden......main thing is not to give up, and you sound as if you wont.

    I guess you will get many others responding with good advice - you take care and good luck.

  • Hi daughter123,

    I just wanted to say I'm sorry that your mum has been so poorly, it sounds like she ( and you,actually!) have been through a lot in the last few weeks - although I can't really give much help, I know the ladies on this forum are brilliant and will give much better advice than i can..and no doubt will be along soon! Thinking of you. Siobhan x

  • Hi there .. I don't know your Mum's individual circumstances but I was saddened to hear she's not feeling well at the moment. There are people here who were staged at 3c and have had surgery. It might be that carboplatin wasn't used after recurrence because it was only 6 months after the original treatment was given. To the right of this screen is a link on the pinned posts section about getting a second opinion. It was put on by Susan of Ovacome and shows the pros and cons of the process and how you can go about it. If you feel you need to talk to someone, Ovacome have a helpline 0845 371 0554. I've used this number myself, and it's been of great help. Love Tina x x

  • I think all of the above are giving you excellent advice. So please call Ovacome and listen to them. It sounds like your mother hasn't even had surgery - is that right? If it is, then perhaps you should be thinking in that direction, but again Ovacome will be able to give you better advice that any of us fellow travellers here. There are I know various bizarre cut offs in the NHS guidelines at the moment, because as NHS clinicians & funds for clinical treatment are reduced, limitations have to be applied to us, the patients. It could be that if your mother was a few years younger, then surgery would have been a necessary part of her treatment.

    You ask if any of us here have been down this road. The unfortunate fact is that, apart from the lucky few who either attend a very good quality cancer treatment centre in the first place or who have health insurance in place to fund treatment by themselves, we all have.

    For example, I was initially given a 25% chance of surviving 5 years. That was 49 months ago. But I am still here, still thank God clear of recurrence after initially poor treatment at the local cancer centre. There always exceptions to any rule and a prognosis is, at best, just an educated guess.

    Best to you both. Vxxx

  • Just to add that whilst we might feel that treatment is being impacted by cost, we are not aware of this being the case. NICE do take cost into account as part of its deliberations, however I would be greatly surprised if cost was ever factored into any individual clinical cases by the Multi Disciplinary team.

  • Hi , I can't really add to the advice. I'm sure Ovacome helpline could advise and otherwise maybe devise a list of questions from the posts and your worries and discuss that with her team.Best wishes to your mum and you sound a fab daughter to have , dy xx

  • Sorry to hear your news, my Sandra now 67 was diagnosed 3c back in 2009. She did have debulking surgery but continued to have recurrences. She also only managed 12/18. weekly taxol las year and other chemos since but was taken off chemo 2 months ago and placed on Tamoxifen with a similar prognosis. Tomorrow she will attend clinic feeling well, looking great. We will be anxious as we wait fir the CA125 results on Friday. I think you should get access to the scan reports and seek a 2nd opinion. Sandra is being treated at the Christie. Love Paul xx

  • All the best for Sandra at christie today .will be thinking of her getting her ca125 test .your case sounds very similar to ours .thanks so much for replying to me and I will keep in touch .d xx

  • Hi Paul ,how did Sandra get on at the Christie on Friday?was her ca125 raised?

    Sandra and my mum sound quite similar although my mum didnt get surgery.

    Hope you got on ok.

    Lv Donna xo

  • The good news was that it reduced quite a bit from 81 to 48 after stoppimg the chemo 3 mths ago and going onto tamoxifen xxx

  • That's good news!i am pleased .whats the plan now though? Review 6-8 weeks and keep on tamoxifen??

    I am thinking of you both and wishing you well.kindest d xo

  • Plan is scan 4 weeks, clinic in 6 weeks for results and carry on with tamoxifen in the meantime xxxx

  • I am sorry to hear about your mum - she is so very fortunate to have such a loving and supportive daughter. I do hope you will call the ovacome help line for some advice. They are very good and will give you up-to-date and accurate information.

    Best wishes to both you and your Mum

    Becky x

  • Hello

    You are no doubt a wonderful daughter, and your mother is truly blessed.

    I know how devastating this has all been for you and your family. 2nd opinion I think is a must, as you can then balance everything in your own mind before proceeding with everything.

    I cannot give any advice I am afraid, but want you to know that you are in my thoughts.

    Sending love xx

  • I'm really sorry to read your post. Every case of ovararian cancer is different but I have heard of other women who had a recurrence after first line treatment and then went on to other treatments.

    What is really worrying is that the hospital seem to have left you confused and worrying that more could be done. This is unacceptable given they are saying your mum cannot take more treatment. Assuming you go along with your mum to appointments you should be told exactly why they have come to this conclusion and be given enough time to ask question after question until you're entirely satisfied.

    At the centre of this is your mum's wishes. I think if she would like a second opinion it is definitely the route to go to ensure that you have explored all the avenues. It is your Mum's right under the NHS Charter to seek a second opinion and you should choose wisely as there are more options at some hospitals than others so you might like to think of asking for a second opinion at a hospital which has a lot of clinical trials that patients can join. You'll get loads of advice here on that if your Mum wants to go down this route.

    As others have said, it's also worth discussing this with the nurse-led line at Ovacome. They have a huge amount of knowledge.

    Please keep posting to let us know how you are getting on and how your mum is feeling. You'll get lots of support and friendship here. xx

    with love xx Annie

  • Thank you all so very much for replying to me .you are all lovely people on this site and I'm delighted to find you all.i am definitely phoning ovacome on Friday for advice ( am working for past few days ).i have phoned hospital again for ct scan copies .i don't believe they were ever sent but they should come by Friday .

    Thank you again for all helpful replies .i thinking of you all and wish you all the very best of luck if in treatment or in remission .will let you all know how I get on .d xx

  • Dear d

    I'm not sure copies of scans are going to help you though some patients do like to see them to give them reassurance. My experience of the NHS over the last 2 1/2 years is that staff are incredibly well qualified and experienced and they will have analysed the tumours on the scan. If so they should be able to explain to you in terms that you can understand why they have arrived at a certain conclusion.

    Being new to the site you might not be aware that I have moved especially to access better health care. It was not the staff in my former NHS trust that I distrusted. They were excellent and if anything better qualified and more experienced than the more junior staff whom I meet on a day-to-day basis at an internationally renowned cancer centre. It's just my former NHS Trust didn't have the drugs or clinical trials available that might make a difference to the quality or length of my life. This might be the case for you but if you live in England you should be able to get a referral to join a clinical trial in another NHS Trust and your Mum's oncologist should be able to give you some advice on this.

    I'm aware there are clinical trials available for women who are resistant to platinum and I was told these small-scale trials are often appealing to women who have few standard treatment choices. Someone who can advise you is the Research Manager at Target Ovarian Cancer as he is a research scientist and collects trials data and inputs it on to their database. You can search for suitable trials on the Target Trials database at clinicaltrials.targetovaria... or email Simon Newman at Target Ovarian Cancer at Cancer Research UK also have a comprehensive database but as it covers all cancers I've found it difficult to access.

    I do wish you luck with this. What does your mum make of it all? How is she bearing up? We all seem to deal with the diagnosis in different ways.

    with love xx Annie

  • What a negative approach your Mother's doctors have! I was diagnosed 3c 4 years ago at 69. I have had two lots of surgery, am on my 3rd round of chemo, and have had a breast lump. The longest remission I have had is 12 months and I have not given up yet.

    You do not say where you live but get a second opinion ASAP and try for the Royal Marsden, St James in Leeds or the Christie in Manchester whichever is best for you. Others may have other recommendations but 3c is not the end of the world. I for one am determined to see my daughter get her doctorate in 8 years time and my oldest grandson should graduate about the same time.

    Such a negative prognosis is not going to help your mum to live with this! ( I am 73 and, if I live another 8 years I will have beaten my mum and dad and neither of them had cancer). My ca125 was 11,000 at diagnosis it is now in the teens despite the cancer being back!

    Good luck and good fighting to you all!


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