So i have had my Radiotheraphy consultation this week and its really freaked me out.
I had Triple positive BC - surgery in July where they removed everything with no spread to lymph nodes. Chemo sept-dec which honestly was nowhere near as bad as i was expecting - and now comes radiotherapy
I hadn't really even thought much about Radio as i just assumed it would be the easiest part but the consultant I saw just kept going on and on about side effects and how many if they happen are life long. she actually scared me so much. Then i went for bloods at my local hospital yesterday ahead of my herceptin injection today and was chatting to the sister who took them and she said that she thinks radio is far worse than chemo and she wouldn't have it.
Now I'm a mess and seriously considering whether to even have it - i've emailed the consultant again to ask what actual difference it could make to me in terms of percentages etc. I used the predict.com website and my current predicted survival rates at 5 / 10 / 15 years are 97% / 91% / 85% which are pretty good!
I'm only 48 so yes I want to live for many more years but I don't want to spend those years in pain, potential broken ribs, lungs not at full capacity etc plus I also don't fancy weeks of fatigue again when I've just got back on my feet
I need 15 sessions plus 5 boosts so that means travelling an hour away each day for 4 weeks. my husband and I are self employed as well so its really difficult for us in that respect too
But I'm scared if I refuse it and it comes back everyone will just say I caused it by nit having the radio - I just don't know what to do for the best and I can't stop crying :-(
Has anyone here refused it? What where your reasons? I just don't know what to do
Hi Michelle, I'm sorry to hear you had such a negative response from your team regarding radiotherapy. I got diagnosed with triple positive BC in January 24. I had chemo first, then mastectomy with diep flap reconstruction. They took 20 lymph nodes, which were clear, although prior to chemo one node was affected. It was then suggested that I have 15 sessions of radiotherapy. My side effects were minimal, just a slight rash and more tired than usual. The worse bit for me was the early morning starts and long journey. For me there was no hesitation about having it, if that's the treatment they thought I needed. I feel for me I need to know that I've done everything possible, to prevent a recurrence. I hope you are able to make the right choice for you. Xx
Hi, I had 15 treatments about one year ago with minimal side effects.
I personally found it easy and a very fast daily treatment.
Good luck with whatever you choose to do.
Hi Michelle
I am sorry to hear that you are in torment about the prospect of radiotherapy. I had the same regimen as is proposed for you. That is 15 sessions and 5 boosts. I am now four years post treatment and do not have any side effects to speak of. At the end time of treatment I did have some some underboob blistering in the area where bra bone sat. Healed up completely after a week or so and totally fine since.
My mum had radiotherapy in the 1970s for BC when she was in her 40s. It was part of a clinical trial of radiotherapy to treat BC. The dose of radiation at that time was much higher than nowadays and she lived until age 88, just passing 6years ago. She did not have any significant long term side effects.
I don't believe that your medics would offer it to you if they did not believe the benefits for you outweigh any potential risks. Also, it would be the MDT which would determine your treatment plan. The team have to explain every theoretical potential risk, even if the likelihood for you is extremely low.
For me it was a no brainer to accept every strand of the treatment recommended. I wanted to maximise my chance of survival.
Please don't reject radiotherapy out of hand without first having a full discussion with your oncologist.
Best of luck to you for whats to come.
Wally
Hi there I had a mastectomy on the 5th Dec it's been such a whirlwind and now I'm booked in for radiotherapy 11th Feb, all my nodes are clear so just waiting on that plus hormone blockers it feels never ending but thankful no chemo. I am concerned about side affects as my cancer was next to my chest wall.
I'm peri menopausal which is scary being on hormone blockers, it's a journey which we all didn't want to be on, I'm praying for you all and a speedy recovery xxx
Hello Michelle_e, I understand how you feel but so important to weigh the pros and cons. I didn’t want radiation as I needed it to both breasts. 15 treatments to each one and then a boost of 5 to the right.
I was very slow to make my decision as my cancers were not fast growing but finally after talking to my surgeon and radiation oncologist I agreed. The rate of reoccurrence was lowered by radiation and for me that was a big deal as once having breast cancer was enough. Also I have small breasts and no matter what if I had a reoccurrence I would need a mastectomy so increasing my odds of not having a reoccurrence were huge. Each person has to make their decision. I know there is an oncotype dx test that can help you decide as it lets you see if radiation is necessary. You can ask your Dr about it. didn’t do it as I needed radiation on the right breast anway but would have done it if I needed it in only one. Complicated decision and also I was 72 when I had radiation so long term effects of 20-30 years out don’t effect me unless I live to be very very old which I hope to do. Did really well and have not had any side effects. I go cycling and do everything I did before. I am on hormone blockers and to me they have issues too. There is nothing without side effects and snd they have to tell you everything which can be frightening. I get it.
Barbara
Hi
I also had triple positive bc. I had surgery in May, clear margins and no lymph nodes. I didn’t ever want chemotherapy but because I was HER2 positive I had to have it. So I had chemo from August to December. I saw the consultant radio therapist just before my chemo finished. I agree there are lots of side effects but they have to inform you of them. I had 9 fractions, 4 of which were boosts. My last one was 10 days ago. I have not had any side effects at all. I am moisturising 3 times a day and getting as much air to the area as possible. It was a breeze compared to chemo.
Hi Michelle_e,
I am very similar to you - 47 years old, HER2 positive, have had surgery, chemo and about to start radiotherapy. Everyone I have spoken to has said you have finished chemo you have done the hard part, radio will be so much easier!!! Obviously there are a lot of possible side effect but there a lot of possible side effects with anything medical! even things you wouldn't think twice about!
When i saw the oncologist last week he did say make sure you practise lying down with your arms up and holding your breath for 30 seconds!!
You can do this - it'll be over before you know it and we can tick another thing off our long list of treatment!
Xx
Hi.
I've had mastectomy and lymph node removal. Im Part of a study and prosigna test didn't recommended chemotherapy.
Then they said radiotherapy and I was exactly the same as you. The side effects long term are frightening. I kept going on the predict website too.
Then I sat with my consultant who went through everything. She explained the radiotherapy will reduce the risk of it coming back in the same place. The side effects are possible. I have a few close friends who have had radiotherapy and only had a slight rash. I'm relatively fit and healthy so they think my body will be OK but obviously no guarantee. The cracked rib thing freaks me out too!
I have decided to have radiotherapy therapy which should start in a couple of weeks.
Please do what is right for you. When chemotherapy was mentioned to me at first I refused it. And probably still would.
I would stay off the predict website. You will drive yourself insane.Take a breather and sit down with your doctor or a breast nurse.
If cancer comes back I will always think I should of had chemotherapy. If I get it somewhere else I will probably blame radiotherapy. It's a whole lot of what ifs and we can't go back and re do things.
I'm still having wobbles re radiotherapy. I'm going next Friday for the initial appointment.
Cancer absolutely messes with your mind.
I'm the same re having to travel 60 mile round trip everyday for 3 weeks.
But that time will pass. A month. Then your done.
Take your time on your decision xx
I hope this helps and please keep in touch if you want to.
Wow, 45 seconds is a lot ! Mine was 25 seconds and despite having asthma I managed it. I was left side and I have tattoos.
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