I have been reading about lots of people who have had OC at a more advanced level than I was, who had a hysterectomy but did not have chemo after, most were not offered it. They are still okay with no reoccurence, so why was I offered it, I know they are using the term a precaution, but it's been horrible I feel rubbish, and now I'm wondering if they are coveringtheir backs offering it to me rather than just going for the monitoring?
Hubby wants me to keep going but I don't think I can stand the thought of another 16 weeks feeling gross. Especially as there is no guarantee with or without it.
LA
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Lily-Anne
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I don't know why as you say there are others who have not been offered chemo when they have a more advanced chemo, it might be that they are not well enough to take it as they might have other medical problems, it might be that their particular type of ovarian cancer doesn't respond well to chemo, one thing I am sure of is they would not offer you chemo if they didn't think it was necessary, chemo is very expensive so they definitely wouldn't give it instead of monitoring, and they are there to save lives, you are very fortunate that they want to do this, if I was brutally honest (and I will be) I had a friend who kept refusing treatment and they tirelessly tried to encourage her (and hers wasn't advanced) but now she is no longer with us, I feel she didn't give it her best shot...we all have a choice...please choose the right one... we've got to like you too much... and you are part of our group now...there is no going back as far as I'm concerned...I probably speak for others as well...complain as much as you like but we are here for you...sorry not so gentle...lots of love x G x
• in reply to
Sorry I meant " more advanced cancer" ( second line down) xx
Mine was over ten years ago now, Lilly-Anne. I think that's why I wasn't offered chemo after they had done the analysis on all the bits they took out and deemed they were all showing evidence of borderline tumours. I think that with a Borderline diagnosis, that was what they did then. Treatment has progressed since then, so if you can stick with it, I would. I don't think it's a matter of covering their backs, more an analysis after an examination of your op bits (I'm hopeless with medical/techno terms, but I think it's called histology) Theybwouldntbbe recommending this course of treatment if they didn't think you'd stand a better chance with it. Chemo drugs are very expensive and they are watching costs more than ever these days. Please see if you can stay with it! They never recommend these things without thinking of the best possible outcomes for you, I am sure. I'm sure it's horrible, but it is giving you the best chance for your future health. Is there anyone you can talk to? Ruth is great at Ovacome on 0845 371 0554, or Macmillan have people who will listen and they are both very non-judgemental. Maybe by talking it all through, you will see a clearer path. I know it's not easy and there are so many new realities to take in.
I know at the start it all seems very daunting and I can sympathise how you are feeling about the road ahead. My theory has been all along is they (the gyne team and oncologists) suggest things for a reason and not just for the sake of it. When I was first offered chemo and signed the consent form I said to my oncologist "I dont have a choice". His relpy was "you do you could refuse treatment". When I really thought about it to refuse was not an option. I have a grandson and 2 daughters and a husband. If I have cancer I want to do everytrhing I possibly can to get rid of it. When I was first diagnosed in June my first thought was I wouldnt be here for Christmas. Here we are in January only one more chemo left and planning to go back to work in feb or march.
I know I have been lucky as I have been well throughout. Chemo hasnt been too bad. One bad week One better week and 3rd week I am back to normal. i am amazed now how quickly time has flown by since June (2 major ops and 5 chemo cycles 6 th one tomorrow). I know the journey ahead seems a long and hard one, just take things as they come dont look too far ahead and go with the flow. Please dont give up. keep coming on here (I have found it so helpful and supportive), ring you specialist nurse for a chat and dont be afraid to ask for help or accept help if someone offers it. On your good weeks plan to do some fun things.
Angie says forget about housework I agree totally, my iron and board have not seen the light of day since June,Hubby did the hoovering after my first op. Since my second op I have paid someone to hoover for me. Rest when you feel bad listen to what your body tells you and have lunch or a coffee with friends on your good days.
I too will be brutally frank. Whilst I didn't know anyone with oc before diagnosis, my Aunt had breast cancer when I was 14. She was not offered any after treatment, whereas another lady operated on at he same time was. My Aunt passed away when she was 46, the other lady survived. I knew a lady that was given 6 months to live with cervical cancer. With treatment she lived over 30 years! While everyone is different and there are no guarantees, I would go with the treatment every time. I found once I'd got through the first chemo the effects were not as bad, and I did start to feel better in myself. Stick with it, the worry you would give yourself and your family if you didn't would be much worse than the feelings you have now. I'm sorry to be blunt, but we all want you to make the best choice.
Well you could refuse further treatment if you're feeling gross. That is an option and it is entirely your choice. Generally I'd say that the NHS don't offer treatment that costs in the region of £10k if it's not needed.
I'm really sorry you're feeling so poorly on Carbo-Platin alone. It has less devastating side effects than Taxol and other treatments. Few of us are in the fortunate situation of having an early diagnosis so for us chemotherapy is a life-line giving us extra months or years and the side-effects are worth it.
There is indeed no guarantee with or without it - but with it you have a better chance. How I wish I had the option of 16 weeks treatment that might offer me a complete remission.
I wish you well with your decision-making.
Annie
Hi Lily-Anne
I had early breast cancer a couple of years ago. The survival odds were something like 98%. My oncologist said he wasn't sure whether to give chemo or not and offered me the option. I said I would like to go ahead. His comment was "well at least then you will have nothing to reproach yourself with in the unlikely event that it does come back". I thought that was a good way of thinking about it.
Please stick with it Lily-Anne. I know how you feel, it is horrible but once its all finished you can start to look ahead. My husband used to try and cheer me up when I was on chemo with the phrase "If its hurting it must be working." And it did.
Love Mary xx
Some tough love, Lily-Anne
If you stop the treatment and , heaven forbid, the cancer returns, how will you feel? And how will your family feel? I had a choice too and I knew I wanted to be able to say I gave myself the best chance possible.
I am the support line nurse at Ovacome and am sorry to hear about the problems you are having with chemo. I feel sure the docotrs would only offer you chemo if they felt it would be advantageous to you but when you are feeling rotten it is not always easy to be positive about it.
Do feel free to give me a ring on 08453710554 if you would like to talk things through
I think you will find that there are as many that are offered it as there are that didnt have it. If that makes sense.
I had a full hysterectomy and then had chemo. It is tough but you will get through it. But please stop thinking there is something sinister in them offering you the chemo. There isnt.
Hope you feel better very very soon
Lots of love suzanne. xxxxxx
Its always about the what if, isnt it? what if its fine without it? what if i go through this all pointlessly? but... think about what if you refuse and regret it later. Could you bear that, and what it would do to your family? Please bear with it... You can, you know, even if it doesn't always feel like it... Big hug x
hi lilly-anne, i too was offered the choice of chemo, and thought well i have to go for it. that was 13 years ago and i have been in complete remmision ever since. remember what makes you bad, makes you better. good luck. big huggs.
My understanding is that there are guidelines on when to offer chemo and when not. It would seem that virtually all ladies with invasive ovarian cancer are offered chemo to mop up any cells that might be remaining. I had a borderline tumour which is slow growing and , we think , never invades other organs, so chemo is usually not give.
The general decision would have been done on the basis of clinical studies of various types which would have shown that the probability of the disease returning is lower in people with your type and stage of disease having chemo than in people who did not. Many other factors are taken not account such as how you might cope with the treatment , your age and if you have other diseases.
Decisions like this are taken by a team , all of the members including the junior doctors in the team , the nurses who administer the chemo and the pharmacists who make it up could in theory be professionally and legally accountable if this treatment was offered to you
not required orvwas inappropriate. Chemo is not without its problems as we all know, it is extremely expensive in terms of the drug costs and also the staff time in preparation, manufacture and administration. So no hospital would offer such a treatment without good justification and not to cover their own backs.
I hope you feel better soon
Love
Charlie xxx
Hi Lily-Anne,
I think Charlie as hit the nail on the head there, even though they have caught yours early, great though this might be, I noticed it is high grade (unlike Charlie's which is low grade (ie slow growing) so there's your answer go for it. Thinking of you lots of love x G x
Lily- Anne there is little more that I can add to the already very important advice that you had been given in response to your post other than to say that I was diagnosed last Jan the 9th with Stage 1c Carcinoscarcoma Ovarian cancer .... because the tumour had ruptured during the op they team told me that they wanted me to have chemo .... there was just no hesitation over it and would do so again if needed .
I had Carbo/Taxol from the Feb till the end of May and yes there was some rough times but I did try to look after myself through out .. I drank lots of water daily ..2lts plus at times and thats so very important to do this ..I sat next to a lady for a couple of my treatments she also had Ovarian cancer and was having the same as me but feeling so bad and rough ..Her hubby bless him kept telling her to drink water ..she didn't listen to him ... or the nurses ..till she asked what I had in my bottle which was water and pomegranette juice and a protein powder to keep the neuropathy at bay .
Walking too helps lots only if you feel like it ..even just a small walk will help your joints and then rest too .... It might not be so good if you have the 'white stuff' though but even we got out last year with grippers on my boots ....
It might feel as though its going to last for ever but it does not ..16 weeks is not that long .... not when you think about it ...Try to aim to do little things and not the hoovering ....
At the end of the day you have to make the choice your self and its yours alone to make but Just think a little more before you say no .
Thank you everyone, I know it sounds as if I'm putting obstacles in the way, a friend who works for the NHS mentioned to me that the best way to avoid being sued was to offer comprehensive treatment, which set the cogs turning. I haven't been too bad yesterday and today, I have been to my GP who of course said grit your teeth and do it, that she wouldn't wish chemo on anyone, but she also hasn't treated anyone who has survived more than two years after discovering their OC, sobering words!
Hubby has a stinking cold and I have been walking around the house with a hanky over my mouth, hoping not to catch it, as already have an antibiotic cream for a boil. Scar is stinging, the snow is deep and my daughter won't be here this weekend, as planned, the weather is too bad for the journey.
I really appreciate your kind words. Shame my Mum isn't around for advice...
Come on Lily-Anne PMA!!!!! Positive mental attitude !!! You really must be positive, I feel rotten some days after chemo but I say to myself "okay I'm down today, however tomorrow is another day and I'll be fine". It does help honestly.
Lots of love and welsh cwtches. ( hugs)
Jean. Xxx
Dear Lily -Anne,
I think I get how you feel.I was diagnosed in March 2012 with 3c high grade ovca.The diagnosis is totally overwhelming and you go into shock,denial,depression and every other emotion.It is very difficult to think clearly and make a rational decision when you are already feeling so low.
I went for diagnosis consultation on a Monday and was told I would be having chemotherapy on the Wednesday and found it all too much to cope with!I put it off for a week and came to terms with the reality of it all a bit better.
There is no denying it is an awful diagnosis as everyone who posts on here is aware.I have no doubt that nearly everyone has moments of extreme fear,sadness etc but life goes on for all of us and our families.
Time is now very precious and I try not to waste it being negative about things that are out of my control.I want my children( youngest is 14)to have had the best start in life I can give them and I try to keep everyday life as normal as possible.It can be very difficult but I try to live in three month blocks and always have something to look forward to.
We go on as many holidays and breaks as we can afford and I booked my summer 2013 flights last September-I WILL be going!
Looking forward to last years holiday got me through chemotherapy!
We all struggle at times but find our way through this.
I find the advice ,support and reading about other people's experiences on this forum very helpful- everyone seems so lovely but I also spend a lot of my time with friends who don't have cancer and that helps too.
On an almost humerous side I have terrible needle phobia and still have but discovered emla cream and manage ok even if I feel a bit silly!If I can do it anyone can!
Hope you feel more able to make a decision soon-sometimes you just need time to try to come to terms with it.
hi lily anne - can well understand how your feeling. had my 1st chemo 2nd jan and had a horrendous time afterwards lasting 2 weeks - at one point wished i could just fade away in my sleep as this was only at the 1st hurdle. Due for next chemo tomorrow and of course absolutely dreading it - all made worse by the loss of my lovely long hair which regularly brings me to tears and anger. i am a person who unless its absolutely necessary hates taking any drugs and never even take a paracetamol so have found it difficult to accept the potent stuff we are given. however its the only lifeline we have and we have to place some faith in the medical world so im grabbing it with both hands and i am determined to keep going and give it my best shot as I do with everything else in my life. i am also making sure i help myself where i can and eat well and have found a lot of useful information of the 'canceractive' website and chris woollans book - 'how to beat cancer' - is very informative. So lets grab it together lilly anne and we'll see each other through this despite the bad days and negative feelings that we all have. sending you lots of hugs, best of luck and spk soon. chrissy xxxxxxxx
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Got a date for surgery :) But confused over further issues with breast :(
Pre cancer cyst 
A poem about people who stick with you - true friends 
Ready to go here I come OCTOPUS Trial
Girls, can you help me to feel more positive about living with ovarian cancer?
