Anyone not going down chemo route??

[ricky23]

I know this is a bit odd but has anyone decided against Chemo. Ive had a TAH after being diagnosed late February this year, stage 1c Grade 3. I have declined chemo, i know its proberly unheard of but surely im not the only one??

[Jo1967]

Good morning

This is my first time writing on Ovacome although I have been following very closely everyones story since my diagnosis in December 11. I was diagnosed with stage 1a grade 1 endometroid adenocarcinoma. It was a massive 20cm cyst witht he malignancy in the centre. My gynae/onc was keen for me to have chemo, following a radical TAH , mostly due to the size of the cyst , but after researching lots ( I am a nurse practitioner) I decided that the cons outweighed the pros. This was endorsed by the Onc I saw at Guildford. I just keep a very close eye on my CA125 which initially at diagnosis was 57 and is now 15 . They thought it was probably quite a good marker. Hope this helps.

[lyndhurst]

hi

I am also one of the few who has not had Chemo. i was diagnosed with a Ia grade 3tumor in September 2009 the grade 3 was because there was a bit of spillage from what the consultant was sure was an endometrial cyst which was part of the very large mass (about 20 coms as Jo 1987) after discussions between myself, my husband, the surgeon, oncologist and review at the combined st georges/ marsden MDT team it was agreen no chemo( but that i should have a laparoscopy with biopsies and pelvic washings after 2 months which was clear and i was then monitored 3 monthly for 2 tears and amy now on 6 monthly review and doing fine ( Ca 125 fluctuates between 8 and 12 )

havng the 2nd op was tough as set me back quite a bit, but preferable to chemo and so reassuring to know no evidence of any residiual disease

so no you are not odd, but because sadly so often the disease is not found till so much more advanced, there are only a few of us in the same position

jo

[Hidden]

I am very interested in this topic as I was very ambivalent about chemo when I was treated for 3c grade 3 in Jan - July 2009. I gave in to having carboplatin in the end, but felt strongly that the surgery had left me free from disease. The chemo was certainly the thing that caused me most 'illness'.

I have been in complete remission since, and maintain this through diet and lifestyle.

I wish you both the very best, and admire you for being strong enough to go with your convictions and intuition.

Very best wishes,

Isadora.

[FlorenceW in reply to Hidden]

Hi Isadorra,

I spoke to ou a while back...have been doing the Budwig Diet/alkaline water etc and Transfer Point Beta Glucan. I am 6 months since finishing my second line treatment...and my CA125 has dropped from 30 at the end of treatment to 28...I am sooo happy about this.....thank you for your advice ...was wondering do you get your Transfer Point from America...I had to pay £27 on Customs recently when I bought 2 packets!!

Hope you are well!!! Let me know!!xx

[Hidden in reply to FlorenceW]

Hiya,

I replied to your private message - did you get it?

Isadora

[ricky23]

I am so pleased im not the only one that opted out of chemo!! So huge thank you for replying to me, i cannot tell how i feel hearing from you, thank you so much, i thought i was on my own!! I had a huge mass on my left ovary, i was so terrified of hospitals i had to have counselling to even get me in for a walk round, let alone the op. The hospital was so good they let my husband stay with me, allowing him to sleep next to me for the whole timei was there. The reasons i didnt have chemo..... sadly i just couldnt cope it was very embarassing but i was having massive panic attacks and just became a nightmare, sadly i couldnt even do it to save my life, its that bad but true, suffered 26 years with hospital phobias. Long story!! My surgeon and oncologist had to reluctantly agree as they knew it was going to be a total disaster, i did try i really did, but dying was a better option in the end... how mad is that??. Now the second reason i didnt have chemo.... this reason has only just become a reason, a lot of people who have it, but not all become so ill and cancer still comes back and that made us feel we made the right choice for us, not everyone else, chemo saves millions i salute that. My ca125 before op was 2800 , 3 months after surgery it was 7!! Was so excited with that result!! Just had 2nd ca125 and that was also 7, so happy. Saw the hospital yesterday, and all good so far. Living month to month is very hard and i have awful black days and thoughts, but i am one of the lucky ones and very grateful for my life. Not enjoying the menopause but if thats all ive got to deal with im not complaining!!!

[Hidden in reply to ricky23]

Hi Ricky,

Don't forget you caught it early... and your ca125 results are brilliant..I send you my very best wishes..it all sounds good for you..love x G x

[ricky23 in reply to Hidden]

Thank you so much x

[kitjules]

I am really pleased your levels are staying down.. Long may they stay that way.

It's all about informed choice, but it's a difficult choice to make at times. You have to do what feels right for you and your body. There are days I feel enough is enough...it's just one thing after another, and somehow that brings me a peaceful feeling inside yet it also feels almost embarrassing to say that, like i am giving up. When reality is wanting a better quality of life... Other days I just want to keep on fighting and have what ever they can throw at me and never give up, but chemo has made me feel so ill, unlike others who seem to sail through it. You will never know how good it was to read your post.. As its something that has been on my mind recently, and not something I felt I was able to talk about until now.

I wish you well, and dont feel bad about any thoughts you have, it's your life your body and your decision.

Jules xx

[ricky23 in reply to kitjules]

Hi Jules, im sorry you are going through such a bad time, emotions go mad dont they? I was so pleased to hear from people who like me chose a different path for various reasons. If i had been stronger in my mind i definatly would have had the chemo, but as i explained it was out of my control, a decision i will possibly live to regret, as i know grade 3 cells are not the best to have. I feel sad that some of my family are unsupportive and angry, quite rightly so, but i didnt really have much choice in the end. I hope you continue to get through your treatment, i really do take my hat off to anyone having or had chemo, very brave and strong people!! Good luck. X

[dee61]

Hi Ricky,

I was diagnosed in 2011 Grade 3 clear cell after the op and my onc kept saying after you have had time to heal(total hyst+washing) we want to start with chemo coboplatin. Due to complications I had to have another op and a longer stay in hospital.Started hemouraging so

chemo was cancelled. Now a year on after many scans etc my CA125 is 15 so I am being monitered as I still have complications. My onc has not ruled out chemo but while I show CA125 normal we are waiting.

Many of the ladies having,had chemo are so positive and I feel so unworthy of there support

knowing they are dealing with much more than I am.

Wx

[Hidden]

Hi Ricky, I only joined the site last night, you have to do what feels right for you, others can advise or have an opinion but the choice has to be yours.

I have OC although don't have the full extent yet, couldn't do biopsy earllier as I was carrying a huge amount of fluid (13 litres). I had TAH 5 weeks ago and awaiting the results of the biopsy that was done then. I had 3 cycles of chemo before surgery and I must admit that I felt so much better than I had done in months. I had my 4th cycle of chemo 3 wks post op and have to say it creased me but feeling better now if somewhat tired. I am one of the lucky ones and haven't had many side effects from carbo/taxol. Not having chemo didn't occur to me tho' I don't know if I would have been brave enough to refuse. My CA125 was over 3000 at time of diagnosis and just before surgery had come down to 675 so chemo had had some effect as it's going in the right direction even with a long way to go.

We have to believe we are doing what is best for us.

I hope all stays well with you,

C x

[BJ_UK]

I was diagnosed stage 1a mucinous adenocarcinoma of the right ovary this time last year. I have not had any chemo.

Barbara

[ricky23 in reply to BJ_UK]

How are you doing?? Did you get offered chemo?? Thanks for replying!!

[BJ_UK in reply to ricky23]

No, I wasn't offered chemo. Mucinous tumours tend not to respond well to chemo, and my tumour was stage 1a.

I'm doing okay, thanks - just had my latest follow up appointment. I've been having bowel issues (and who amongst us doesn't!), so I was worried, but my CA125 was 12 (up from 9 in May) and my gynae oncologist was pretty confident that my problems were caused by adhesions, not recurrence.

Unfortunately I do have permanent damage to the nerve controlling the abducens muscle serving my right eye thanks to a breached dura during a pre-op epidural for post-op pain relief. (In layman's terms, I've been left with a squint causing double vision.) I've got to see a surgeon later this month to see if surgery would be likely to help. I suspect that it will not be worth the risk, in which case I will have to continue to use prisms in order to stop seeing double.

I have had some difficulties coping this past year, not only because of the cancer diagnosis, but also because of the eye problem, which was initially severe enough that I couldn't go out on my own. It has improved enough that it can be corrected with prisms now.

How are you doing yourself?

Barbara

[dawnieg]

Hi all

I don't want to have the chemotherapy either but am scared of what my family and employers will say!

Just trying to pluck up the courage to say no.

Thanks all xxx

[Hidden in reply to dawnieg]

Hi Dawn,

I wonder why you think it takes more courage to say no? there have been a lot of people on here... that have travelled up and down the country to get treatment that might have been refused locally...(often without success) this takes courage...and a lot of determination.

Chemo is not offered unnecessarily...best wishes love x G x