Ovarian cancer

A support group for anyone affected by ovarian cancer to come together, share experiences, and ask questions.

To chemo or not to chemo?

Bambi62
Posted by

Hi.  I'm new to this community. 56 years old.  What a story mine has been.  It all started in February this year when I fell down some stairs at a friends house in the night and I was rushed to hospital where they took a CT scan. Luckily no damage to spine or brain BUT what they did discover on the scan was an ovarian cyst on my left ovary.  Long story short, ultrasound and MRI scan later I was admitted for a total abdominal hysterectomy to remove said nasties.  My CA125 count was 12 and I had had absolutely no symptoms with gynae problems.  My  consultant surgeon thought it would be benign due to these factors but what a shock when I came round from the operation on 16 April to be told it was cancerous.  I am very very lucky I fell down those stairs really as the cancer was low grade 1 - Stage 1C2 and he managed to get it all out with no spread.  What a lucky lady I am!  BUT I now have a huge dilemma.  They have offered me the OPTION of carboplatin chemo - 18 week course.  As everything was removed and I'm clear of any spread they have said this a precautionary option just in case there are any tiny micro cells around.  The chemo only has a 2-3% benefit for someone who in effect has HAD cancer.  I am in a complete dilemma as to whether to undergo the hell of chemo when all along I may not even need it.  I am erring towards not going through with the chemo as it frightens me what the lasting side effects could have and who knows if I even need it.  Anyone else had to make this decision?  The anxiety this decision is causing me is almost worse than the two week wait for the biopsy result.  

tt2
Posted by

Hi Bambi61

I've had chemo for breast cancer and also chemo for ovarian cancer.

To be fair I sailed through both.

Its difficult because they are giving you a choice and asking you make what is a medical decision. As I see it they are offering you a chance to try to ensure that there are "no nasties" left. I was told the same thing when I had breast cancer.

OC coming back is, in my opinion, much worse that having chemo. Chemo is an expensive process and its being offered. A 2-3% benefit could make all the difference.

It might be worth considering it the other way around. If they said we're not going to offer you chemo because only 30 women in every 1000 women see a benefit, would you be battling to get it in case you were one of those 30 women?

I haven't seen any long lasting side effects of chemo.

Best wishes and a virtual hug

Txx

Miss Melody
Posted by

Hi

From what i know in the chemo world of ovarian cancer, Carboplatin on its own is nowhere near as harsh as when they combine it with taxol (taxol is what I refer to as the paint stripper of chemo’s, the one that makes your hair fall out etc). 


If I were you I’d ask your oncologist for more information on Carboplatin, or indeed look on the Macmillan or cancer research uk sites to find out more about it, then at least you are making more of an informed choice. All chemos are different, and all have different side effects.


I wish you well whatever you decide xx

BevH
Posted by

Hi,

Yes, you are very lucky and I hope that you realise quite how lucky you are. Many ladies just like me would give their right arm to be in your position even with Carboplatin included.

I really don't see what the dilemma is here. You have had an early diagnosis, surgery and the offer of a more gentle kind of Chemotherapy to mop up cells just in case. To my mind, that is the way to go unless you want to run the risk of the disease returning which it might. How would you feel then?

I have had Carboplatin on it's own and it didn`t affect my life too much.

Up to you but I wouldn't risk not having Chemotherapy but whatever you choose then I hope things work out for you long term.

Bev 

Amaryr
Posted by

Hello Bambi. 

I have been watching this thread with interest because I was in a similar situation to you four years ago and I am interested in others points of view to your question. 


First I must say how sorry I am to hear that you’ve joined the club of ovarian cancer patients. No matter at what stage you are diagnosed it is a dreadful shock and one is immediately plunged into an unfamiliar world and asked to make important decisions often with scant prior knowledge. 


Secondly giving advice is very difficult because everyone is so different and respond to both the disease and treatment differently. 


So unless you take advice from medical personal and do as much research on reliable trustworthy sites as possible, most answers will be mainly relating to the informers own experience. This will be interesting and often helpful but may not relate totally to your own position. 


Carboplatin is regarded as a better tolerated form of chemo than many others. It does seem to be the ‘gold standard’ treatment. I was offered and accepted carboplatin four years ago. My cancer - ovarian endometriod - was/is(?) an early diagnosis but due to extensive endometrial adhesions it was considered wise, as you say, to ‘mop up the nasties.’ I will write down my experience but remember it is MY experience and may not relate to anything you have!


I reacted strongly to the drug and was not helped by comments such as “but you’ve only had carboplatin.”  I did loose most of my hair, was completely wiped out over the treatment course and developed peripheral neuropathy in my hands. The extreme fatigue was, and remains, a life altering thing. I had excellent care and support drugs for nausea, then for the side effects like peripheral neuropathy. Sadly I reacted to these too and I’m left wondering now if I should go ahead with more treatment if a suspicious lesion in my lung turns out to be a secondary cancer. 


The actual treatment was very easy and the nursing care excellent. Really no worse than giving blood!


So the answer to your question remains a personal choice, but while most people seem to do well on carboplatin, some people do react badly. I’ve met a couple of others at a support group I attend occasionally. This has actually helped me a lot because I was beginning to think it was ‘just me’!


I sincerely hope you make a decision you can cope with and, as they say, live long and prosper!

shirley532
Posted by

hi in 2012 I found i had  an ovarian cyst on my ovary and my CA125 was raised so I had  full hysterectomy and as they said they took the cyst out complete I shouldn't worry to much about spread so I had carboplatin to mop up it was not as bad as I thought I didn't loose my hair and after the treatment I went 5 years and got my all clear...that was in June 2017 now we are in may and I have multiple spreads in my liver peranium basically every where ...I have just started my first cycle of carbo/paclataxol and am struggling badly with it.. my advise to you would be to have the treatment you just never know my cancer is now treatable but not curable ....make the right decision

Arla
Posted by

Hi Bambi,

I'm sorry that you have to make this decision, it's a tough one and I can't shed any light as I've not had to make it but you might like to give the Eve appeal a call, they have a gynaecology nurse specialist who can help chat you through the pros and cons and help you to prepare the right questions to ask your team when you meet them. It usually takes a couple of days to get back to you, but they will return your call. The Macmillan helpline also has nurses you can talk to, you just need to request the service when you phone.

Whatever option you choose it'll be the right one for your individual circumstances, we can only ever do what we think is best at the time and hope it pans out.

Lots of love 

Xxx