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Refused radiotherapy

22 REPLIES 22
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Re: Refused radiotherapy

Thank you for that Wonky. I am just worrying about the long term side effects. 

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Re: Refused radiotherapy

Hi Tansy, although the whole 'kit n caboodle' is scarey, if your onc has prescribed rads, you must give them a go. Ages since I posted on this thread, but four weeks ago, I was glad I went through the rads as was told nothing "worrying" to be seen anymore in the boob. That news convinced me that all the worry and putting up with the side-effects of the treatment was worth it in the long run.  Hope this helps a little. Wonky 

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Re: Refused radiotherapy

Its the after effects that are frightening not the actually having the treatment. 

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Re: Refused radiotherapy

Woods, this is how I feel too. I have had surgery...2 lumps removed clear margins. Am on Leteozole for the next 5 years. 9 weeks now since my surgery and I am only just healing thoroughly, so oncologist has delayed the next step. This feels like could the treatment leave me worse than where I am. Such a difficult decision. 

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Re: Refused radiotherapy

Can't be bothered to run a duster around, as much as before, so you're more than welcome to them. Lol. X

Glad you are having a rethink. X 

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Re: Refused radiotherapy

Thank you Wonky, you made me chuckle and cheered me up.  I will have a good long think about the whole thing. 

I hope you are well and if you have any spare Baftas knocking about let me know!!! Smiley LOL

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Re: Refused radiotherapy

JoLowe, I honestly cannot imagine anyone sails through chemo; if I had had to have it can assure you that the BAFTA for worst patient in the world would be on my bookshelf! 

I identify with your comment, that you just needed to get the hell out/away. Our natural fight or flight stress response is sent into overdrive/ haywire, as the treatment is scary, but we know is designed to save our lives. Dilemma situation. 

They monitored me constantly and they can and do pull-the-plug, if they think the risk is outweighing the benefit. And you aren't committed to complete the prescribed course.

So, maybe have a bit of a re-think? 

X Short term quality of life v medium/long term. Keep on trucking! If you can. X 

 

 

 

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Re: Refused radiotherapy

Thank you so much for responding to my post.

I think I am without doubt the very worst patient ever.  The chemo was awful, the first lot dreadful sickness and 2nd lot with a partially numb foot, toes, nose and other parts which I hope are not permanent. I just feel that if that hasn't killed it then why bother?

I was nearly reconciled to it when I went today, but the thought of my lungs being compromised and not getting proper answers just sent me running.

All the treatment is part of a plan and a protocol which they follow for us to be well and hopefully cancer free but side effects can remove quality of life and all these have to be weighed up.  

We are all so different as are our lives. The decision must be without any regrets.

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Re: Refused radiotherapy

Hi. My view is that when taking a decision like this, you have to try to factor in that your feelings towards the BC are likely to change over the coming months. To be frank, the 'fear of reoccurrence' can become quite intense. Rads are to reduce chances of that, and ergo they reduce the likelihood of the psychological doubts manifesting. 

I was with my onc, last week and he was seemingly most interested in my lung function than anything else. But these guys are experts in their field and weigh up all the pros & cons. Personally I think I made the right decision by having the treatment they prescribed, rather than agonising over that being a misguided decision at a later stage. As has been pointed out to me on here, although I had a tough time with the rads, I have peace of mind that nothing was going to survive that 'nuking'.

All this said, whilst they decided if I needed chemo, or not (I was borderline), I seriously thought about refusing it. The thought petrified me. But I think on reflection that if they had advocated it, I would have taken it. 

Obviously you are in the reverse position and seem more comfortable with chemo than rads. Or maybe you are just jaded, exhausted, 'battle-worn' and need a break and thereafter a re-think. Best of luck in coming to the decision which is of course a very important one. Me, I'd go for the nuke. X

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Re: Refused radiotherapy

Hi,

I've had a mastectomy, lymph node clearance and 7 sessions of chemo and today went to be measured up for radiotherapy.  I had been told what to expect regarding side effects etc but asked one of the radiologists some more questions.  The chemo was adjuvant and just in case anything had spread.  I've also had Zolondronic acid and will be for the next 3 years as well as Letrozole.

 

The radiologist said that the radiation will take a small part of the top of the lungs and if I hold my breath it will avoid my heart. I had a weird pneumonia a few years ago. A medical paper has been written that states this particular pneumonia can be caused by radiation treatment for breast cancer.  I am therefore very worried that any of this could cause my pneumonia to return.  I stated all this and had sent the paper months ago to my Oncologist but this has rather fallen on deaf ears.  

 

I therefore have refused treatment.  They really wanted me to have this as I had stage 3 Aggressive cancer with a lump of 4.3 mm which appeared 6 months after mammogram.  I just feel that this potential side affect to treat something that may not be there would be a very bad thing to do.  Also, with all the chemo then surely that would have killed off any lurking cancer cells as what then is the point?  

 

Has anyone else been in this position as I feel terrible but I hope it's the right decision.  If inconvenience is making you not do it then maybe think again. Having said that, it is your body and your decision and nobody really knows what to do for the best.

 

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Re: Refused radiotherapy

Hello. Just discovered this forum today and wanted to say I am having some of the same thoughts as you about proposed treatments. I live two hours from the hospital so weeks of rads was going to be difficult. Instead I was eligible for a clinical trial which involved one set up appointment, then three radiation treatments over three consecutive days...then finished.  Perhaps something similar is available to you? This is the direction they are hoping to take rads in the future, thus the current clinical trial.  I am actually more worried about the AI and Denosumab scheduled to start afterwards (systemic hormone treatment which has some serious side effects)! That’s the step they will have to try harder to convince me to take!  But yes, ultimately your call, your life.  Get all the info, perhaps try it (you can always stop), and decide what is right for you. 

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Re: Refused radiotherapy

Hi Diane, 

I'm going through the same thing with the next part of my treatment, for me chemotherapy, and like you a part of it is that my husband is also away most of the week and really and truly I just want to get back to normality and forget all this ever happened! I'm not feeling any threat from the cancer and I'm concerned that it's just a one-size-fits-all solution that doesn't take me as a person into account.

I have spoken to my team at the hospital since knowing I have these doubts about my treatment and have been amazed at how supportive they were of me for questioning them. In fact they admitted I was right to question them on certain aspects of my treatment  at the end of the day, we know ourselves far better than any team that has only been involved for this one event in our life far better and we need to listen to ourselves when we question what we are being told. 

My advice is to be honest with them about exactly what it is about the radiotherapy that is putting you off - I've seen posts from people who have started their phased return to work whilst undergoing radiotherapy, if this is one of your biggest concerns is this a possibility? I love my job and am looking forward to going back and feeling normal!  The hospital can often accommodate work schedules if you talk to them in advance (at least, I've been told mine can)  I guess it depends on travelling time for that...

Also, if you do decide not to go ahead with it, then be positive with that decision, you are making it for YOU, and no one else can make that decision or tarnish it, as for recurrence of the cancer - whatever you decide we are stuck with that fear, find out how much difference it really makes and decide how well you can live with the decision, but that's for you to decide no one else. Good luck with it all, and remember also you can ask to take some time over your decision and come back to it later...

Hugs... 

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Re: Refused radiotherapy

Hi Diane

 

Thinking of you xx

 

I have just had my 2nd of 20 radiotherapy sessions today (had lumpectomy in June and 6 session of chemo through july to oct)

 

The hospital I have my radiotherapy have a helpful short film that might be helpful for you - it certainly helped me

 

https://www.youtube.com/watch?v=WM9e4sVsDjI

 

Love Helly xx

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Re: Refused radiotherapy

Hi Wood,

 

Spotted the string of good responses below, I particularly second many of Jaybro's comments.

 

I agree it's about making an informed decision, one which is right for you. 

 

I'm sure your oncologist has explained that when margins are tested and found to be clear, while this is really positive it is still possible that tiny cancer cells, too small to show up on a mammogram/ultrasound may be elsewhere within the affected breast. The radiotherapy zaps any such tiny cells, reducing the risk of recurrence. Most of us on hearing radio probably wonder quite how it is going to affect us and still have radio precisely to zap any strays/other small starters. 

 

I live on my own and while I have a partner he was away the other side of the world through most of my active treatment cancer journey since both his sister and mother had cancer (one with aggressive lung cancer, which had already spread when discovered to brain and other organs and the other with breast/lung cancer) and were both stage 4. At the time it shone a light which made me feel I was very fortunate to have treatment options which could make a big difference, compared to them where treatments were much harsher and more about trying to extend time.

 

It worries me that part of your thinking sounds like it relates to your partner being away during the week? If this is the case, please consider this in the big long term picture. I found I got into a pattern of going for radio each day on my own. I just paced myself, if I was tired, I just took it slowly. When I had more energy I invited a friend or 2 round for some light entertainment! The radio staff were all lovely and the 4 weeks of daily treatment and boosters went by relatively easily.

 

I also agree with other's comments about normal...I think we need to view it as our new normal...post (or living with) bc.

 

Have you asked the oncologist how much of a difference radio on averages helps survival for someone with your type, size and grade of bc? I'm inclined to agree with Jaybro that you wouldn't be posting about this if your mind was 100% made up, so perhaps it would be worth considering asking for another appointment with the onc and/or calling the nurse on the Breast Cancer Care phone line for a chat?

 

I'm sure your consultant would be open to having another discussion with you about your concerns. Some hospitals can also give access to a clinical psychologist for cancer care, who are trained to talk through bc related matters re what's right for you and helping to re-frame any concerns.

 

One of my friends who went through bc a few years after me felt as you do, but about having chemo (she's never taken any med's, not even painkillers, even through childbirth!) and was pretty adamant that she was not going to have chemo. She had a really good follow up conversation with her onc which helped her to make a more informed decision and change her mind, and is now back at work knowing she optimised chances of zapping it all.

 

I hope the above helps,

       

Sending hugs

Seabreeze (5 years on and doing ok)

    

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Re: Refused radiotherapy

Woods (Dianne), so glad to read your post that you have opened up a dialogue with people around you. You have great courage and fortitude and I hope you can hear me clapping in delight. 

It's normal to be scared of rads, I'd say you could organise a 'dummy-run' to meet the team who would treat you and get to know them. I have to say, my lot were a breath of fresh air, in comparison to surgical side of things.

Twittering on like your granny now, but also strikes me to point out you do know you have legal rights, regarding your job and financials. 

But your body, your choice, your life  and I respect that entirely. 

Keep us all posted, we are rooting for you. X

 

 

 

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Re: Refused radiotherapy

Hi Jan

       I've opened up to my care team ..my GP...and my friends and family today...my fear was they was going to judge me and they have been the opposite...I'm getting help and have been praised for coming to that decision. ...asking for help doesn't mean I'm weak ..it's just a step in the right direction. .whether I eventually change my mind I don't know..

Diane

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Re: Refused radiotherapy

Please don’t ever believe it’s your “fault,” regardless of what decision you make. Illness is never anyone’s fault. Society has this need to point the finger of blame - you drank alcohol, it’s your fault; you didn’t breastfeed, it’s your fault. Don’t go down that route.

 

Just be sure that your decision for your body is an INFORMED decision and a choice to take the risk, choosing quality of life over more hassle. But also bear in mind that emotionally and physically you’re not in a good place and that’s never the best time for informed decisions. I don’t think you’d have posted here if you 100% felt sure. What would any of our comments do but annoy you if you were sure? 

 

You’re right. Cancer is a very lonely experience, even surrounded by caring friends or family. There’s always a sense that you are very much on your own, your body going through all this trauma that no one can fully understand, even those with similar experiences - because we all have different physical and emotional makeups. But some of us are extra lonely because we can’t reach out or we don't want to reach out. But one thing I’m learning is you can’t get back to “normal.” For a start, your employer is obliged to register you are a disabled employee - that’s not “normal“ but it does protect your interests once you are back at work. More than anything though, you can’t change the fact that you have had, and may still have, a life-threatening disease. We learn to adapt and live with that knowledge.

 

Consider ringing the number above and talking it through with the nurses. They are wonderfully supportive - they also have no axe to grind with you. It is your body and your right to make those decisions (I was was asked why, if I was so terrified, was I going ahead with chemo - it hadn’t occurred to me I had a choice but then I didn’t want a choice). I hope you arrive at the right choice for you and achieve that peace of mind you need.

 

Jan x

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Re: Refused radiotherapy

Wood, Hi! I am on my tod too and the thought of rads was daunting. But as hard as the slog was, as I got through the month it dawned on me that the effort was a huge insurance policy against that B****** coming back. 

Chances are you will have a dedicated team treating you, so you get into a routine and it gets easier and easier. If your onc recommends rads, please think again. Your body, your choice, but I'd love to hear you have had a change of heart! Be kind to yourself. X

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Re: Refused radiotherapy

Wood - it's your body ,your decision ,but please think very carefully .Do you want to have to do this again in a year or 2 years time ? Radiotherapy significantly reduces the risk of re-occurrence .Its boring ,it's tiring ,it takes over your life but it's only for 3 weeks and then you can return to normal life, it's an investment in your future .The hospital will usually provide transport by volunteer drivers so you don't have to drive /travel .Please talk this through with someone properly before making a final decision .Jill x

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Re: Refused radiotherapy

Hi

I have been in turmoil about breast cancer from the start..too many decisions. ..sick off the lonliness it makes me feel. ..I've started taking tamoxifen and returning to work next week. ..I live on my own during the week. .my partner works away ...it's the way forward for me ...if the cancer comes back then it's my fault. .just need to get back to normal 

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Re: Refused radiotherapy

Wood, you are absolutely right that it is your body and your decision. I am, however, concerned that you have chosen to post that on here. I wonder if you are having second thoughts? I do understand your feeling of exhaustion and I had 30 sessions, but my hubby drove me there and was to all intents my caret, so I had nothing else to do but have treatment . Do you think your decision would be any different if you were in a better place? Have you discussed this with any of your medical team who could probably give you an indication or probability of chances of it returning. Having said that, you state that you have clear margins, so I’m assuming your status at the moment is NED. If that is so then I’m so pleased for you. Have a good rest, then get on with the rest of your life. 🍀💐 x

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Re: Refused radiotherapy

Please reconsider-  radiotherapy destroys any cancer cells lurking AND their DNA . It is absolutely key to long term survival and painless even if inconvenient 

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Refused radiotherapy

After having my lump removed with clear margins I've decided the last minute to cancel my radiotherapy treatment. ..simply have had enough and I really couldn't face the trips every day for 3 weeks...it's a big decision to make but my body my choice