Decided not to go ahead with the chemo after all.

[dawnieg]

My gut instinct is telling me it's not the right thing to do. Can't explain it, it just doesn't feel right.

[Hidden]

Hi Dawn,

I am sorry you have decided not to go ahead with chemo....If I am honest the route you have decided to take I can't understand... as for me I felt I should always go with the oncologists advice....the good news is they have caught it early...so perhaps this decision has been made easier for you...and it is afterall your body and your life...I wish you well in your decision we each have to do what we feel is right....we are still here to support you and I send you my love and best wishes x G x

[Hidden]

You don't need to explain it! Intuition is a very important facet of a journey through disease, and you can hear yours.

I was very anti chemo, but was talked into having carboplatin(only- I refused taxol and avastin) by the medics and my family. I was sure I didn't need it, but my disease was 3c and aggressive, so I caved in. I still think it did more harm than good in my case.

I wish you the very best, and know you will have made other decisions to support your further, full recovery.

Isadora.

[nandi]

I wish you all the very best, but do agree with Gwyn. You have been lucky to be diagnosed early, but I would have gone ahead with the chemo advice just in case something got away during surgery etc., It is possible to do the healthy options to a certain extend during chemo and certainly after. I have been on chemo now for nearly a year, a clinical trial first that did not work. Now weekly taxol. This is my 3rd recurrence. I walk every day3 times for about half an hour with our dog and often hike with my husband up to about 5 miles. Sometimes tiredness does overwhelm me. I eat as healthily as poss.

I respect your decision and really hope you are free from disease for ever. xx

[jennybutler]

Carboplatin on its own is not to bad you keep your hair and I only had a few days of feeling tired and taste buds change.I understand exactly how you feel I am on my second line now paxi/taxol and carboplatin, lost my hair and food taste nasty but not too bad, I left it 8 months before I had to resist and have chemo.But sure I would not be here now if not gone ahead with it. responding well ca125 down to 52 after 3 sessions now had 4 waiting for tc scan results.And as I agree with Nani it might pick up any rogue cells. Best of luck what ever you decide to do love Jenny

[francescahannah]

Its important that you do what's right for you. My disease was a later stage when I was diagnosed and I just did what the doctor said at first and had chemo. Later I tried other things like the gerson diet and mistletoe plus herbs and supplements but I've now had 4 lots of chemo in 9 years and wish I'd not started down that road but immediately gone to alternative and complementary therapies. But maybe I am only still here because of chemo.who knows! Good luck with your journey

Francesca x

[Jan76]

Dear Dawn ,

We are all different in the way we aproach the thought of having chemo and of course its all about personal decision whether or not to go ahead with it .

I was diagnosed in 2012 with 1c Carcinosarcoma a rare Ovarian cancer . The c meant that the Ovarian mass had ruptured during the op and mine also was wrapped round my bowel .

It was in its early stages and I viewed having the chemo as giving me a better chance of survival as we all know this beast OC has a habit of rearing its ulgy head .

I had both Carbo and Taxol and yes I lost my hair due to the Taxol but saw it as a small price to pay as I wanted to give my self the best chance possible of fighting this .

I kept fairly well through out the treatment as I looked after my self .I did have Shingles which can happened while having chemo but not everybody does .

At the end of the day its you that has to go through with the treatment and no body else can make that decision for you . Just from a personal view I do not regret having the chemo one bit .

Wishing you well .

Love Jan xxx

[TinaWright]

Wow, Dawn this is such a brave decision sweetheart and I respect you for it, I always say go with your own gut instincts.

I do know that many ladies refuse chemo just because they don`t want to lose their hair, but the taxol only offers an extra 3% chance of survival. I was like, I don`t care if I lose my hair forever, give me it!!!

Chemo is not nice but looking back I am so happy that I did put myself through all that and I will do it again and again if I needed too. Maybe another time I would not worry so much about it. I actually found the surgery much worse and I think having chemo so close to having a major surgery is bound to take it out of us.

Remember though, if you do decide to go for it, you can always stop if the going gets too tough, you may not need to have the taxol which is the nasty one and if so your hair loss will be minimum. They give you anti-sickness drugs and if they don`t work then they will find drugs that do. I never once even felt sick and I had 5 hours of chemo each time.

Courage is taking constructive action though you may feel afraid, understand, have courage and be strong. Strength comes in a variety of ways and rejecting treatment may be your strength.

Love from Tina xxxx

[Lily-Anne]

I had one session of chemo out of a prescribed six and decided not to go ahead with it after that, I didn't want to at the start but felt pressured into it. I read an article about the cancer services review which said that they are less likely to offer chemo for adjuvant treatment, and in fact they would now not automatically advise a full hysterectomy. I had Carbo only as Taxol is the harsher drug and only tackles 5% where carbo tackles 70% of cell renewal.

So I was feeling a bit down that I'd had the full hysterectomy, but when I spoke to my cousin who lost her Mum to OC, she said if her Mum had been given a full hysterectomy instead of a partial one she would be here now, as on removal they didn't take all of the cancer. It was in the 1970's, so they didn't scan, that was the findings of a post-mortem.

You can always change your mind at a later date, but I am a great believer of going with your instinct. Good luck

LA xx

[charlie12]

Hi Dawn

Very well done on following your instinct. All drugs have side effects , tolerable usually if you really need them , but where there is a doubt , who knows. I am not sure what I would have done , probably would not have had it.

Try to devote the time you would have spent having chemo to yourself , relax and eat as well as you can...II found meditating amazingly therapeutic.

With very best wishes for a long and happy and healthy life

Charlie xxx

[Hidden]

Hi Dawn,

Just to add a little more to my comment above, I don't think praise should be given for turning chemo down, neither do I think that it warrants criticism either, as each person needs to choose for themselves as we are all individuals, I do feel however that chemo wouldn't have been offered if the oncologist didn't feel it was of some benefit, chemo is very expensive so is not offered lightly...it worries me a little that if a newcomer comes on with the same dilemma...that they might be influenced by our comments and so I feel that I should point out that the oncology team are the experts and any decision for or against should be discussed thoroughly with them.

Best wishes love x G x

[Erixka in reply to Hidden]

I don't know the background to your story, Dawn, but I think if you're posting here you must care what the group members think and the only reason you'd post here is to receive a response.

Gwyn, as always, your words are chosen with such care and respect and thought.

This is such a challenging journey... for all of us who have been diagnosed with OC!

Each woman comes from a different place and with this diagnosis, there's no prejudice. OC is a life threatening disease. We can only do our best to be healthy and survive.

Whatever your choice... I pray you have happiness and fulfillment in your life and may you be blessed with the strength and courage needed to move forward.

XOXO,

Erika

[Jane]

I agree, everyone takes their own journey and I wish I had not had chemo even with stage 3c knowing what I know now about it's lack of success and what it does to the body in the long term. Gwyn is right it's easy to offer an opinion on the choice but to say no to chemo does take a certain amount of bravery given the oncology culture of encouraging it and the belief by many that you are being almost negligent if you don't have it. I hope you continue to trust your gut Dawn, that is one of the parts of you that will be most effected by treatment :). It's always there as a choice later if you need it. Wishing you strength, Jane

[Hidden in reply to Jane]

Hi Jane,

I am sorry that you regret having chemo, I honestly feel that I would not be here now had I not had chemo, when I had a recurrence I was given a very bad prognosis (only perhaps six months) I have now been in remission for seventeen months and it will be five years next month that I was first diagnosed... for this I am very grateful to my medical team...each day is a bonus...despite the chemo side effects I am still here and this is worthy of celebrating...love x G x

[doreenharwood in reply to Hidden]

Gwyn I am so glad your still here, can't say how much I enjoyed meeting you at members weekend, and I love the poems you write. Your one lady that will go on for a long time to come, I want to book a poem for my 60 th birthday next year. love Babs x

[Hidden in reply to doreenharwood]

Wow Babs this gives me something to live for... now let's see if I've got this right you are 59 in November this year ...and you will be 60 in November next year (2014) so (scratching my head hummm) you haven't had your 59th yet ?? LOL by the way your last birthday's poem is in the book Jackie published ...along with your photo...

I enjoyed meeting you as well love x G x

[doreenharwood in reply to Hidden]

That is correct Gwyn 59 this November and the big 60 in 2014. I saw my poem in your book and my picture on the back cover fame at last. I keep trying to make up poems but they are never any good. When I go on holidays I am going to try and write a poem like yours x x love Babs

[citrine in reply to Hidden]

I feel exactly the same Gwyn. I was diagnosed 3c in 2011 with secondaries in the omentum, lymph nodes and spleen. I had 3 cycles before surgery and when the surgeon operated, all the tumours had disappeared except for those on the spleen. It made the surgeon's job so much easier. I had 3 more cycles after the op to mop up and have been in remission for 16 months. At the time of diagnosis, I would not have believed it if someone told me that in June 2013 I would be alive and well and enjoying life. I certainly wasn't enjoying it at the time of diagnosis. If I have a recurrance I would hope to be offered chemo again even though I didn't have an easy time of it.

Yes, we are all different and it is a personal decision and we all respect that as long as the pros and cons have been considered.

Love Mary xx

[joyw2]

Hi Dawn, I am fairly new to this site and I only find out on Monday what chemo treatment I will be given and I am not sure why you decided not to have the chemo, I am not familiar with all the terminology and grades, not yet anyway but I am sure your gut instinct is the right decision for you. I was advised to have radiotherapy after my radical hysterectomy, I hoped I didn't need it as it meant a round trip of 40 miles every week day for 5 weeks, but I took the advice of the professionals and apart from getting diarrhea which was one of the side effects and which I have coped with I felt it was worth it for me. I wish you well, keep blogging to let us know how you are coping.

Joy

xx

[Hidden]

Have just messaged you. Ring me,for a chat as soon as you want. As you say we live very near as does Osborne( who is lovely) We are all herefor one another.

Love and big hugs

Suex

[postmistress]

I do not like chemo but if I have to go through it again I will. THats my opinion. I have a klot of allergies. When your like me they lower the dose or change it to something else . BEst of luck without the chemo , I will pray for you!Diana

[Tars247]

Hello OvaCsea. I'm in my early 20s and also have Ovarian cancer, have been on my second combination of chemo. I'm not sure if this one will work... I sadly do not know anyone personally who has been through it. And I'm curious about your combination of chemotherapy? Mine is a light dose as I'm trying hard to hold down my job still.

Thank you for your time.

Tars

[TealSista in reply to Tars247]

Dear Tars247, I note that you are in your early 20s. Just wanted to let you know that Ovacome runs a special support group in the London area for women diagnosed with ovarian cancer who are under the age of 45. For more information, do contact Ovacome. Their contact details are available via their website which is ovacome.org.uk

[Whippit]

Dear Dawn

I think it's quite a big thing to refuse treatment but if you've discussed this with your oncologist, family and friends, and you understand the pros and cons you are, of course, entitled to make that decision. At the end of the day it is your body and the decision is yours. Everyone that loves you will support you.

It might well be it's not right now. That doesn't mean to say you can't change your mind if you feel differently at another point in time.

with love Annie xx

[wendydee]

I didn't have chemo and so far have been OK, but I only had Borderline tumours in both ovaries and omen gum. They were all removed during my op. to be honest, for the first few years, I wish I'd had chemo, just to make sure it was all gone, but it's been ten years now and so far, so good. As the others say, there are pros and cons but it's your choice in the final analysis.

All the best

Love Wendy xx

[Hidden]

Chemo was not as bad as I expected, I felt very tired, food tasted very different, had some trouble with blood counts that needed extra injections but entirely doable.

I would have gone through a lot worse to know I was doing everything possible to be here for as long as possible for my family.

But that was my experience of chemo -in the end everyone has to make their own decisions and do what seems best for them.

Lynn x