My Ovacome
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Is there anyone on here who refused chemo after surgery?

Just wondering whether anyone else didn't want, and did not have, chemotherapy, or whether anyone knows of anyone who did refuse it. I had a 'good' debulking surgery a month ago for neuroendrine cancer (aggressive) that began as epithelial serous ovarian. From what the oncologist told me yesterday, they don't know whether or when my cancer will return if I have no chemo, and they don't know when (note the absence of 'whether') it will return if I do... I might as well toss a coin by the sounds of it.

But if I accept the chemo, I have to have 5 teeth removed first, two of which form a bridge and which are welded to the bone in my mouth, which means waiting 6 months for the hospital to do it, even though they've only caused a problem twice in five years.

Given I'm nearly 68 and my kids are approaching 40, I don't feel the pressure that many of you do to survive at all costs, however many damaging courses of drugs they want to use to try to stave it off. Do you know of anyone else who decided to refuse chemo? I'm just wondering if I'm the only one who may decide against...

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I was given the option had one dose and decided against any more. Have learned so much since then. Your cancer type has a better response to chemo so you could always take that option if it returns. To be fair there is no pattern to recurrence. You could be stage 4 and have 10 years Clear or stage 1 and get 6 months

Tough call. I’m anti chemo but did have chemo last year and it was a waste of time. The side effects hid growth leaving me on a time limit

Good luck with your choice

LA xx

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Thank you - I am Stage 4, but its the neuroendocrine it differentiated into that will probably kill me, rather than the original epithelial serous - there's no guarantee that even the chemo will have much effect either. On balance, I'm thinking I'll refuse and take whatever comes.. can I ask why you had chemo last year? Were you in pain?

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I recurred in the pelvis area so the idea was to try and knock out the mets. Didn’t work though

Xx

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I read all your posts - you're a brave woman,I wish you all the best

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Hi, difficult one. You could ask for a second opinion or hear yourself chat it all through with the Ovacome support manager, Anna. I did have chemo after both operations but my GP advised me a couple of years after the last one has finished that he'd be very, very wary about more chemo if/when it returns. And his reason is quality of life after yet more chemo...but I know from this site, many others have gone through loads of doses, so it really is a very personal choice, I think. If I'm listening correctly to all you'd have to put yourself through, the quality of life you have ahead sounds, to me, pretty important to you. Hope you find the kindest decision for you. Warm wishes, Lesley

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I am fairly sure that I am going to refuse further treatment if the beast comes back. Like you, I am old so don't have the imperative to stay alive at any cost that younger people with children do. Whether I will be brave enough to go through with it I don't know. I don't mind being dead, it's the dying I object to.

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Precisely - its the manner of it that counts. But the truth is, if it comes back, and you have more treatment, that will still have to be faced down the road anyway, because it will likely come back again after that... I wish you good luck and hope it doesn't return at all.

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I’d just like to say that there are women on here who have lived a long time. There are lots of other things to live for. Children, whether they’re grown up or not, are a consideration, but there are a lot of other forms of obligations, considerations and also loves.

Everyone is different.

Xx

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Of course everyone is different - my life circumstances and the kind of person I am will be quite different from many others.. How I feel is not how I expect everyone else to feel. And it appears hardly anyone has surgery and no further treatment... I have a rare cancer, which already makes me in a very, very small club.

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I can very much understand that ... but it might be good to seek another opinion medically ... xxx

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Agree so strongly, Tina!

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It is always down to personal choice and we would all respect that.

Personally, I would do whatever I had to do to fight for life. I have too many people who need me,to give in and too much of a love for life to roll over.

I don’t think it is simply down to age, but a choice as to wether you want to go on, or have the strength for the fight ahead.

Whatever you want to do, it is your life, your choice and I wish you well with it,

Regards,

Carole

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I wanted to refuse chemo. In the end I went ahead, but then I cut it short. My digital neuropathy was growing worse and worse and I was fearful it would be permanent. It was affecting my beloved bass playing and that was simply unacceptable. I got the fourth dose of taxol lowered as a result, and then, in the same chemo session, I started to have an allergic reaction to the carboplatin. That was a sign from the Goddess to kick it in. In total, I did 4 out of 6 sessions, the oncologist stubbornly calls it 3.

And I agree with others, it's a personal choice, you must weight it up for yourself. However, it's not just about children - I rather love my OWN life and wish it to continue - the thing I feared the most was not being around to play any more bass. I'm still here, my band is still playing. We all have different things that matter to us.

However, we all have to ultimately decide what quality of life is acceptable to us when a choice has to be made. Chemo is a cruel beast.

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68???? That's nothing and I don't think it's time to peg out just yet. I'm 69 and I'm determined to get to 70 in December no matter what. 68 - or 69 - is no age to shuffle off. But, it's your choice and you sound as if you haven't made up your mind yet otherwise you wouldn't be asking our opinions. At the end of the day when you have gone, you have gone for good and can't get another chance to do things differently. Whether you want to go on giving yourself the best chance of living longer is entirely up to you and I would respect your wishes.

Have you spoken to your children and family about this? They have a say too. I have four sons, two in their 40s and two in their 30s and there's no way I'm leaving them yet. In my eyes they are still my babies and will be until every breath in me expires. When I speak to them or get the chance to see them, their love and determination for me to stay here overwhelms any bad thoughts I have. And, I've had one or two lately. So all power to you for making the right decision for you but there's others in the equation too and I think you should include them in your thoughts. With all my love and best wishes, whatever you decide to do, but I still think that 68 is just a number and has nothing to do with what's going on with you right now. Sorry about the lecture. Kryssy xxxx

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I have spoken to my remaining son who of course would like me to at least try the chemo. Have not yet spoken at length about it with him, merely expressed my confusion and concern; he does understand that, ultimately, its my decision, and is aware of how narrow my life has become because of other, longstanding health problems I have. He is going to work abroad in July anyway

It does very much depend on what's in your life - in the last year, my partner killed himself (serious mental health troubles)and my oldest son decided he didn't want anything to do with me or his brother any more after deciding to marry his (rather strange) partner. No grandchildren, two sisters, one of whom is suffering serious heart and other health problems herself and feels she's on her way out too.

Hence my difficulty - but oh dear, I will so miss my gardening - been a professional horticulturalist for years and still had/have three gardens I work in, though you have to be well to do that.

Thanks for responding... you are right, I still haven't made my final decision. Take care and all the best

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Have you heard of Penny Brohn in Bristol? They have short residential courses which integrate medicine with a much more holistic approach.... It's a beautiful place with wonderful gardens (hence why I thought of you!!). The focus is on 'living well' with cancer... and of course for each of us, this may mean different things! I went a few years ago and found a great deal there which was profoundly helpful. I thoroughly recommend it.... Best wishes, Sx

link here, pennybrohn.org.uk

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why not say you will accept medical treatment for ...say a year....and then think again? You certainly have enough reasons to feel depressed....have you considered treatment for that? No need to rush...remember, we all care for you on this forum. Lots of love Chris xxx

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I didn't refuse chemo but I asked whether I really needed 3 cycles? The answer was that no-one actually knows the answer to that, as it hasn't been researched (in terms of different numbers of cycles.) However I was told that chemo over no chemo after surgery gives better outcomes.

With this information I opted to have 2 cycles instead of 3 as I wanted to get back to a healthy normal life as soon as possible. It doesn't sound a very momentous decision now, but it felt like it at the time! Everyone outside my immediate family advised me to have everything I was offered, but I reasoned that the chemo can only treat what is there at the moment, it can't prevent a recurrence, unfortunately.

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I'm also 68. I have my 5th recurrence &I am currently on hormone therapy. I have been told chemo may be advised next time I go to clinic. I don't particularly want it, but I don't want to give up on life & treatment either. I have a husband, a grown up family, & grandchildren, & want to stay here with & for them. Naturally, quality of life is something to consider, &I suppose my hope is to be as well as possible for as long as possible. We all have decisions to make that can sometimes can be difficult, & in the end need to do what is right for us. Di

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My chemo was a waste of time and damaged my kidneys. However, had I refused it I would be ineligible for the clinical trial I am on as you have to have failed conventional treatment to get on the trial. As it is known that chemo often doesn't work for my type of cancer, clear cell, I feel quite annoyed that this wasn't discussed with me first.

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Unfortunately, they don't tell you loads of stuff... lots of research and penetrating questions gets a different result though - which is why I've ended up doubting whether to have it or not. But you are right - no trial drugs available without trying at least once, and sometimes they require 2nd and 3rd line chemo to have failed. In ten years, there may well be much more effective and much less brutal treatments available, but of course, that's no use to most of us on here. Thanks for responding, I wish you well ongoing.

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There are alternatives to chemo. I had Avastin after surgery and I am now taking Letrozole.

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Hello, I am late in reading your post,but would like to add that we are all given a choice of treatment. Originally prior to the hysterectomy etc. the surgeon said he thought that I would not need chemo as the thinking was that I would be stage 1b grade2. Unfortunately that was not meant to be as cancer was found in one fallopian tube & to add to this I was stage2 grade 3 serous,which was a shock at the time, & to be honest I thought I might not see Christmas that year. I really did not want chemo,but was frightened that I might not see my grandson at graduation,plus also our son got married the same year although that was some months later , so decided to go for the chemo in the end. Anyway I was determined to go to both events which I did of course & that is 2 years ago now.

It is a very hard decision & really quite personal,but your age really should not come into it, as you are really quite young in comparison to some ladies. I am now 73 & on 6 monthly appointments & I have to say that the only problem I have after chemo is a bit of neuropathy in my toes. I am an avid gardener & always have been so love the spring & all the flowers etc. that come with that. It was decided that I would only have four doses of chemo & so after I finished that I tried hard to walk everyday & keep to a good diet,which I was doing anyway.

We have our grand-daughter's wedding in September & I am looking forward to that, & our son's wife has a milestone birthday (as she calls it) & her husband has arranged a surprise meal with lots of friend's & family in May.

I look at life differently now since I was diagnosed & think that every day is a bonus even if the weather is bad. Of course we all have bad days & wonder when this dreaded cancer will return,but in the meantime I intend to stay strong for as long as I can.

You will I am sure turn your life around eventually even after the sad event,which I was sorry to read.

Take care, Caleda xx

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No sure if this will help or not, but I too have neuroendocrine tumours as well as having had stage 1c clear cell. My neuroendocrine tumours were originally diagnosed in the year 2000 and I have had them removed from my breast, neck, bowel, ovaries & Lymph Nodes and they are still inoperable within my liver. I have been taking Sandostatin 30mgs every 4 weeks for the neuroendocrine tumours and it has been holding everything stable for quite a few years and I am currently at 5 years NED for the Clear Cell. I did have a course of chemo (Carboplatin) for the Ovarian Cancer.

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I opted for chemo when I had low grade serous cancer two years ago. This type of cancer is chemo resistant, but I was offered it because you never know (my words, not the oncologist's). The reason why I took it is because advances in treatment can change situations for us. At my last appointment, the oncologist said we can try Letrozole (based on the promising study in Texas). I don't regret the chemo, even though I have neuropathy which may or may not get better.

You've got a tough decision to make. When I look back on my 6 sessions of chemo, I wish someone would have told me that it seems like you're in chemo treatment forever, but in fact, the time goes quickly. It was 6 months out of 63 years of living. I'd do it again.

Anyway, I just wanted to wish you all the very best in making this decision. Your comment about gardening makes me think that there's still a lot of life in you :)

Getting a second opinion is important, especially with respect to your teeth.

Best wishes.

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Thanks to all who responded. I have finally found some information and prognoses regarding non small cell neuroendocrine cancer differentiation - because I'm Stage 4c already, its a very poor prognosis indeed, which is what no one at the hospital was telling me, and I wanted to know.. I will be seeing the oncologist again next week, prior to making the decision re chemo, and presenting him with this information to see if there's any newer knowledge he has regarding my situation, and whether any chemo will give me any extra time other than maybe a couple of months.

In light of the new information I found, my decision might have been made for me...

I wish you all the absolute best, with the ability to enjoy life as much as possible and for as long as possible.

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After my second recurrence and surgery I was persuaded to have chemo despite hating it the first time.They tried to give me taxol again and I had an anaphylactic shock so then tried cisplatin.I had one dose which involved an overnight stay in a freezing ward so they could keep an eye on me.At 5am they took the drip down and I was so fed up I phoned for a taxi and went home and haven’t had chemo since.I have had further surgery for recurrences but no more drugs.I am now 66 so extending my life doesn’t matter now.Vivx

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You sound like me - I can't bear the thought of all the being mucked about with as much as anything else; this is a common feeling in many older people, well, over 60 anyway...

Thanks for your response - I think you're pretty brave for having ongoing surgeries... good luck!

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Hi, I can understand how you feel with all the heart break you have been through, maybe this is clouding your judgement also about having chemo or not, I won't lie to you it can be hard I've had 5 different chemos in 3 years without I would not be here.

Not all chemo gives bad side effect and most of the time I still managed my part time job,I'm 73 and my children are all married and I have grandchildren to live for but in saying that I sometimes feel it's time to stop.

I'm now on a new trail drug and finding this harder then any chemo, I have 2 more to go and will see if the results were worth it.

I know your original question was who refused chemo this is something you can only decide ovarian cancer is not curable we have to learn to live with it and fight or let it take it's course I hope the decision to take is the right one for you. Please keep in touch take care Lorraine xx💙💙

Ps I hope you and your son can reconcile.

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Thank you for your empathic and understanding response - I'm sure you're right in that what's happened in the last year or so pre cancer has left me feeling wrung out, depressed and that its all futile, especially with other health problems added in. Certainly I don't seem to have the heart or energy for this particular fight - it was hard enough just keeping going every day before I knew I had anything life threatening wrong with me. It's almost a relief to think I don't have to keep going much longer, but perhaps its time to try to some anti depressants to see if they help. I am currently seeing the psychologist at the hospital for counselling support, but of course, none of these things is a quick solution.

As for my oldest son, not much I can do about that all the time he's with his partner - but I am appreciative and grateful for my younger son, and wish I wasn't adding to his burden of worry and grief. But I didn't choose this deliberately, and it was discovered way, way too late, as it so often is, this disease is a devil... I wish there were kinder and more effective treatments for all of us suffering from its various forms.

I'll be interested to see how you are getting on when treatment is complete; I admire your persistence and courage in carrying on with difficult treatments, good luck with it all, Miriam

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HI Miriam, I'm sure all your heart ache is a contributing factor in your feeling this way,

Sorry to hear you don't feel you can have a relationship with your oldest son. you know most of the time it's the parent who has to make the first move, a friend had a falling out with his son for years in the end he sent a Christmas card to him and family,

and slowly things have improved, it easy for me to say not knowing the circumstances.

It's a great idea for you to talk to a counselor for support , when we are depressed it's that much hard to make choices especially like this.

As for your youngest son I don't think he would call you a burden ,the last 3 years I've had to rely on my family for trips to treatment, I try to make it easy by taking myself as much as I can but my youngest always wont's to take me.

I hope you have the head space to give it a go and fight but if not as I said before I wish you all the best in your decision.

Lots of hugs Lorraine xx ... PS. I took a break of chemo to have dental work lost 5 teeth and now have a plate in place😀

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Sadly, I don't think my oldest son is 'allowed' to be in touch - he's quite a weak character and is apparently in thrall to his wife, who I believe may have a personality disorder. I did contact him when his father died; he did not call or make contact for three weeks after that happened, so I did. He would talk about his father's affairs, but nothing else,and when he came to the funeral, he and his wife completely ignored myself and his brother and left without saying goodbye, though they interacted with my husband's relatives. I did approach him after the funeral service; his wife scuttled off before I got to him. I spoke to him and hugged him - he gave me a kiss on the cheek. And that was that....and he does know what's happening to me, was informed weeks ago, but has made no contact. I don't think how he's behaving is good for him in the long term, I am sure he will regret it later, but cannot see what else I can do, so I just accepted the situation some months ago. You can't make someone want to be in touch or express care for you, nor suddenly gain much needed maturity, after all, and he has difficulty in that area anyway - he's dyspraxic and cannot cope with his own emotions, never mind someone else's. I do wish he and his brother were friends, at least; perhaps that will happen later, as the years go on, but that's not in my hands.

Re teeth, it did occur to me that, had I had a full set of dentures already , it would have removed the additional problem with my teeth!

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Hi Miriam please keep in touch at any time ..take care of your self ..Lorraine xx

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Hello, I’m new here.

I have stage 3a lung cancer was diagnosed with vasculitis first.

Regarding your question a friend of my sisters had breast cancer she refused chemotherapy and just had radiotherapy.

That was 7 years ago and she is still here.

I had both but after treatment I found out it only gave me an extra 5% chance of it not returning within 2 years

Hope this helps.

It’s not very nice but my children wanted me to take all treatment that was offered.

Sarina x

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Ah yes, the pressure from one's offspring - and one does feel obliged to take all treatments offered because of family and close friends. I know you had the chemo, and it must be disappointing to find out it gives such a low chance of it not returning, but if you don't know this, it's worth hearing; its clear from what the oncologists have said to me that there's a lot they don't know about cancer - there are people with a very poor prognosis after treatment still walking around after 10 years, and people who had a very good prognosis who don't make more than a few months - and they freely confess they have absolutely no clue why, what it is that makes the difference. There's a book called Radical Remission on this subject which is very interesting indeed...

Thanks for responding - I still haven't quite made up my mind, almost, but not quite... I wish you all good things for the future.

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