Stopping chemotherapy altogether due to ongoing Peripheral Neuropathy

Hi OlivaGA, I'm sorry to hear a bit of what you're going through. I hope a little bit of my story might help. 

I had a lumpectomy last January and two lymph nodes removed, one of which was cancerous. My medical team weren't sure whether to offer me chemotherapy, so they organised an Oncotype DX test. That was also borderline ! 27. 

I was bothered by the possible long-term, significant side effects of chemotherapy, particularly lymphodema and peripheral neuropathy, which are often untreatable. 

I rang a Macmillan nurse, who understandably said she couldn't advise me whether or not to accept chemo. But she did refer me to a BBC documentary by Hannah Fry. Perhaps you know about her ? She's a statistician who was diagnosed with cervical cancer in her 30s. She decided to use her mathematical skills to do a risk / benefit analysis of cancer treatment. I found it interesting. 

Hannah Fry concludes that some of us are being overtreated. 

I'll try to paste a link here ... 

www.bbc.co.uk/.../m0017wzq

I was lucky. My oncologist said since I was menopausal, chemotherapy would be of little benefit. So I chose not to have it. 

If your oncologist is advising you to stop taking chemo, I'd be inclined to follow his advice. 

But it's not easy to know what to do. Thinking of you and wishing you all the best with whatever decision you make xxx

Hi thanks so much for your thoughtful reply and for the link, that’s really helpful.. Yes, I did watch the programme but had forgotten about it. It sounds as if your team were thorough in their consideration of your care. I remember when I first did the NHS Predict test how shocked I was at the low percentage chemotherapy added to the overall outcome. EC was really tough , I have since been told by nurses that lots of people can’t manage all 4. I have considerable damage to my digestive system from chemotherapy so as you say you do have to balance the benefits with the potential damage. I am a grade 3 HER2+ ER+ so treatment with Herceptin Bisphosphonate and Letrazole plus radiotherapy will continue. 
Unfortunately I had very poor care from a previous oncologist who refused the nurses request for a dose reduction when I developed grade 2 PN after my second EC . I can’t changed what has happened previously but I do wonder if I would be where I am now if the dose reductions were given. This new oncologist ( I requested a change) is completely different and I felt had my best interests at heart. For me, I now  need to get my head around the psychological shift of stopping chemotherapy even if it’s the right thing to do, at the moment there’s still a what if it comes back and I haven’t done all I can. Thank you again for your reply , I hope everything is going as well as possible for you, sending you my best wishes xx

Hi OlivaGA, I'm well, thank you. I have the odd blip - which is when I come back to this forum for support and to support others. But mostly I am feeling much, much better than I did a year ago. I am very lucky. 

I'm glad some of what I said was helpful. I don't know about you, but I find it so comforting to hear from other people who have faced similar dilemmas and difficulties. It doesn't matter if they came to a different decision: all our circumstances and characters are different. It's the knowing you're not alone which helps me. 

Well done, you, for asking for a new oncologist when you weren't satisfied with the first one. That takes courage and energy, at a time when you probably felt low on both. 

Yes, the NHS Predict tool is a curious thing. I was surprised when my oncologist said a 4% risk of recurrence was significant. I thought it would be much higher. The world of cancer is very strange and complicated - partly, of course, because all these technical advances means we now have far more options. 

I spoke to a Macmillan buddy - someone who'd had a similar diagnosis and treatment about five years before me. She pointed out that we will never know if our decisions are the right ones. If I accept chemotherapy and the cancer returns, was chemo a waste of time or did it delay / reduce the return ? If I accept chemo and cancer never returns, is that because I had chemo, or would it not have returned anyway ? 

If I don't have chemo and cancer returns, would chemo have prevented it or not ? If I don't have chemo and it doesn't return, shall I just thank my lucky stars ? 

My buddy said whatever decision I make must be right for me - no one else. And once made, I must not waste time regretting it or wondering if I did the right thing. I accept it and move on with my life. 

I hope that's helpful. Thinking of you xxx 

Hi Bear and Tilly,

I am very pleased to hear you are doing well. Are you still receiving treatment ? I am due another treatment this Wednesday which could be at a much reduced dose if I choose to have it. Like you I look at the percentages for recurrence and longevity and they are small but I tell myself every bit helps and do I want to reduce my chances. I think if I was further on in my chemotherapy t would be easier. I am halfway, I still have 8 treatments to go. I watched the Hannah Fry programme you kindly suggested. It was helpful to get a different perspective on it.
The PN continues to be a problem with constant symptoms. I think I’m used to having difficulties with my other health problems and you have to accommodate them and get on with it and I have done that with PN which wasn’t necessarily the right thing to do. I have pretty much  decided that I will stop, I am being seen in the pre chemo clinic on Monday and will make my final decision for then. I agree with all your buddy said about making decisions. I’m a calm person and ok with difficult decisions once I’ve had the chance to think it all through. This does feel huge though. I dreaded telling my family but they were great and will support whichever decision I make. My daughter has significant chronic health problems herself and has 2 young autistic children who have quite challenging problems. I am their support and the need to be around for as long as possible has been a driving force going through treatment. Life is complicated isn’t it . 

Your replies to my posts have really helped me, thank you so much I really appreciate your thoughtful words. Keep well xxx

Hi OlivaGA 

Good to hear how you are getting on. Glad I've been helpful, and so pleased you have a wonderful supportive family. That makes a big difference. 

I finished treatment a year ago. Had my first annual mammogram which was clear, thank goodness. 

I was on Letrozole for 7 months to help prevent recurrence, but it made my joints so stiff and painful I came off it. After an Aromatase Inhibitor holiday, I started taking Exemestane. Fingers crossed, I seem to be okay on it. 

It is good you are a calm person who can take difficult decisions but, as you say, this is a very difficult decision. It is culturally counter-intuitive to stop taking chemo. Please give yourself time to think things through. Do you have to decide now ? Can you have a bit more time ? I don't know much about chemo timings. 

For what it's worth, two things you've said make me feel stopping chemo could be the right decision for you. The first is that your oncologist recommends it !  How often do you hear that ?  It means (as you very well know, but sometimes it helps if a stranger reminds you of the obvious) that an expert has looked at all your circumstances, including your reactions to your particular treatment, and has concluded that, for you, the risks of continuing taking poisons (!) outweigh the benefits. 

Secondly / specifically, your oncologist is worried that more chemo could leave you with permanent reduced mobility. That is massive - for you, and for your family. They depend on you and, naturally, you want to be there for them for as long as possible. To be blunt, if you are permanently disabled, how much support will you be able to give them ?  

Please forgive me if I've overstepped the mark. I really don't want to make things worse for you. 

Please let me know how you get on. Thinking of you and wishing you all the best, whatever decision you come to xxx 

Hi OlivaGA. How are you ?  I hope you are okay xxx

Hi Bear and Tilly, it’s so kind of you to check on me, thank you. Please be assured that you didn’t in any way overstep the mark with your previous email. All your comments were spot on. I made the decision on Monday to stop chemotherapy , it would be foolish of me to ignore medical advice. My oncologist phoned me on Tuesday to see how I was which was kind of him. He told me I mustn’t drive which was a blow but not entirely unexpected. He wants me to start Letrazole in 3 weeks and if it exacerbates my auto immune arthritis I can change to Exemestane. It’s good to hear that so far Exemestane is proving ok for you. I understand that Letrazole can be quite tough.

 I went to the chemo unit for Herceptin on Wednesday . Lots of hanging around surrounded by people having their treatments . Suddenly hit me and I had a few quiet tears which probably did me good. I didn’t cry when I was diagnosed I felt I had to hold it together to take in what was being said . My daughter says I’m fearless, I’m not , it just that I’m good at being afraid but getting on with it anyway. I’m sure that’s true for lots of people. You don’t always know how you will cope until you are in a situation . Strangely, given I haven’t had chemo for 3 weeks, I’ve  had lots of post chemo side effects this week, crushing fatigue , nausea etc, might just be a physical response to an emotional decision of course.

I am having MOHS surgery with skin graft on Wednesday for 3 BCC on my nose. 2 of those grew in 3 weeks which apparently can happen with BC. On a lighter note my hospital letter has told me to bring my own paracetamol and a packed lunch on the day of my surgery !! Honestly I’d laugh if it wasn’t so depressing. 

Thank you again for your kind and wise words of support. Sending you my very best wishes xxx

Dear OlivaGA, I am so relieved I didn't make matters worse for you. I was worried I had. Thank you so much for reassuring me I didn't. 

Well done for making your latest brave decision. That was kind of your oncologist, to ring you the next day to see how you are. There are some very kind people out there who realise how traumatic this whole process can be, and do their best to make us feel we are real people, not just numbers in the system. 

Also pleased he's already mentioned a possible switch to Exemestane. I'd never heard of it till I started taking it. Some people get on fine with Letrozole, but I didn't. I think Exemestane is twice as expensive as Letrozole - which could be why they offer you that first. 

After all, they must be strapped for cash if they want you to bring your own Paracetamol and a packed lunch ... ! 

Actually, I'm glad they gave you that advice. Otherwise, you could have been stuck. 

Tears are very healing. Perhaps that's why I'm doing well at the moment - I've cried buckets. 

Wishing you all the best for your skin grafts, your other cancer treatment and all your health issues. I'm so pleased you are part of a close, loving family. Take care xxx 

Hello Bear and Tilly,

thank you for your kind email. How are you ? How long will you be on Examestane for ? I have to say the stats for the number of women who stop taking their BC medication before their allotted time is concerning. I feel at the moment however grim, i  must keep going as I didn’t have the full course of chemotherapy to protect me. We shall see ! 

I’ve been having all my treatments at Kent and Canterbury hospital but I am now being seen at a brilliant mobile unit closer to home for the Herceptin and Bisphosphonate infusions. Much easier and super staff. I hadn’t expected to feel a bit adrift after finishing at K&C although it was my choice to go nearer to home. I suppose it’s because I  saw the staff weekly for 6 months at a time when I was quite vulnerable even if I didn’t show it.There were some excellent nurses whose kindness and humour made all the difference . 

When I went for the MOHS surgery it was felt that I wasn’t well enough to cope with the surgery and recovery . I was taken aback initially as that’s not how I see things, however I can see now that it was the right decision . I ended up having a simpler op which left me very tired and feeling unwell for a couple of days. I think treatment leaves you with a low starting point for anything else. The huge comedy dressing on my nose is a sight to behold !!   

Sending you my best wishes, take care x

Hi OlivaGA, good to hear from you, and good to see your sense of humour is still going strong ! 

I don't know how many people stop taking their aromatase inhibitors early, but it must be a lot. Judging by some of the posts on this forum, not everyone realises they can ask for an AI holiday and / or be switched to a different one. 

I have seen posts by a few plucky people who say they are carrying on regardless of life-limiting pain in their joints and muscles. 

Fingers crossed, I'm all right on Exemestane, after 5 months. But I was all right on Letrozole for 5 months. Didn't hit me till a bit later. I think I'm recommended to be on it for 10 years. 

I think it's very natural to feel adrift when you leave a medical team, especially if you've been with them for as long as six months, as you have. I felt like that when I finished radiotherapy, even though I went for only 15 days ! I guess it was partly because they were my last medical team. I'd already said goodbye to the surgical team. 

My Maggie's Centre in Edinburgh were very hot on that one. In fact, they warned me, before I started radiotherapy, that most cancer patients have some kind of "downer" when medical treatment finishes. You've been surrounded by caring medics for ages, the abnormal life of appointments has become your new normal, and then suddenly you're on your own, in a world which doesn't seem to know or care what you've just been through. 

I remember someone saying, in a group course at the Maggie's Centre, that a friend had asked her if she was going to have a party to celebrate finishing her treatment for cancer. The friend said she didn't feel like having a party. A Maggie's Centre counsellor said she didn't know anyone who had a party when their treatment ended. In some ways, the tough bit is only just beginning, as you try to make sense of what just happened. 

I ramble. Please forgive me. Long may you continue to find comedy in all this xxx