AMN EASIER
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Radiotherapy

Hi everyone,

I'm looking for support, which I know I will get, but also asking if anyone else has any info or advice. I have recently gone through two lots of surgery for breast cancer, the surgery has had a big effect on me. More to follow. The Oncologist is now saying I possibly need radiotherapy.

I had a routine mammogram which showed up DCIS (Ductal Carsonoma in situ), biopsy confirmed so I went in for surgery. They told me afterwards that my legs went into spasm during surgery and they had to tie my legs to the table. Post op I couldn't walk. I usually can manage to get around the house with crutches. My results showed I needed further surgery, so with pre gablin prior to surgery, there were no spasms. After the second surgery, two weeks post 1st operation, I couldn't even get out of bed.

DCIS is non invasive and the tumour was only 2.5cm but they are now offering me radiotherapy. The odds are 9% chance of recurrence without radiotherapy and 8% with. I think I will decline their offer, going on the problems I've had since surgery, 1% difference is not enough to put myself through something unknown. It was going to be 10 minutes a day over 15 days, does anyone here have any experience of radiotherapy?

13 Replies
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Hi Hilary

Can't comment on the radiotherapy issue, but just wanted to wish you all the very best. Having to deal with other illnesses when you have AMN is always hard. Just a minor illness - probably a virus - has laid me low in the past few days so I can only imagine how you have suffered. Your road back to better health may not be quick, but you will get there. Stay on track and keep your usual positive outlook going.

Chris

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Hi Hillary

I have had the same operation as you and did not have radiotherapy. My ductal carcinoma was 11 cm. I have had 2 operations and the second one this year took me a long time to recover. I take 3600 mg of gapapentin but would like to try pregabalin I have had AMN for 15 years and my health has not been very good the last few years. Please send me your phone number to my e mail address and I phone you. a.aguiari777@gmail .com

Angie

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Hi Hillary,

Really sorry to hear this and want to wish you all the best!

Take care

Steve

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Thanks Steve, I've decided not to have the radiotherapy. They could only give me a 1% difference in having it, and it not coming back. Put that against what might happen to me if I did have it and reacted badly because of everything else that's wrong with me, I didn't want to risk it. Some of the side effects were bad enough for a fit and healthy person. Thanks for your good wishes, it means a lot, as you know, when you don't feel on your own with this awful condition. Hoping everything is ok for you and your family

Hillary x

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Hillary,

I, too, haven't been through all that you have since your surgeries but would like to share that when I have had a surgery, or even a very emotional stressor, that I have a difficult physical response afterwards. It seems that my body will show the stress that my mind may choose not to recognize.

I send you good thoughts and prayers for your health to improve!

JoAnn

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Hi JoAnn, thanks for your response. I have made my decision, I'm not having the radiotherapy. I can't cope with the stress, the possible side effects and not being able to lie on a mettle bed and keep still, lol. The odds on it returning, if I had it, and if I didn't were so small that I'm taking my chances. Hope you and yours are all well.

Best wishes

Hillary x

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Hi Hillary

I had breast cancer surgery and did have radiotherapy, but mine was not in situ so it may have been more likely that the surgery would leave some rogue cells. The radiotherapy was entirely painless, but you have to lie very still and hold your breath for up to 20 seconds a few times. It was tiring going to and fro to the hospital and it does leave you with sore skin, plus I had some swelling. My AMN is reasonably mild and didn't seem to be affected.

I am now taking Letrozole, an oestrogen blocker, to help prevent a recurrence. A potential side effect of this is stiff joints, so that is another choice about the least worst option!

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Hi Sue, thanks for your response, it's good to hear from someone who has the same underlying condition. I have friends who are fit and well who have had good and bad results. I have made my decision, I'm not having the radiotherapy. I can't cope with the stress, the possible side effects and not being able to lie on a mettle bed and keep still, lol. The odds on it returning, if I had it, and if I didn't were so small that I'm taking my chances. They haven't offered me any drug therapy as it's not necessary for DCIS.

Best wishes

Hillary

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Hi Hillary

The "10 minutes" you were told was optimistic - that's right for the radiotherapy itself but it is at least another 10 minutes to get you lined up before that and if you move they have to start again.

The survival statistics on the Cancer Research UK website are pretty optimistic for early diagnosis. On a daily basis, living with AMN is challenging enough without wasting time worrying about a cancer that has been removed! Hope you are recovering from the surgery OK as it takes a while.

Sue

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Thanks Sue, your right it does take a long time to recover from just about anything if you have AMN. I'm just taking things easy and putting all thoughts of cancer to the back of my mind

Hillary

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Hi Hillary,

I am re-visiting your post here because I had surgery for breast cancer this year and am wondering about the effects of radiotherapy! I am glad I searched this site! You are all so helpful!

I had invasive lobular carcinoma measuring 0.8cm in one breast but there was cancer found in 2 lymph nodes during the surgery. I did not have any spasms, but it was difficult to walk after. My recovery from surgery was very quick, less than a week.

I learned later that the chance of recurrence was very small, but I could not opt out of radiotherapy. Chemo yes, radio no.

My first week ended Friday. My sessions do not take long, only 5 minutes including adjustment. No breath holding, just breathing deeply in a relaxed manner. It is the traveling to and from and any waiting that takes up the time.

This week I followed my normal routine of commuting, working and going to the gym while taking my daily radiotherapy. By Thursday evening, I was exhausted! My muscles are most definitely stiffer. I feel as if I can barely walk. I had lower back spasms before surgery and now they are more pronounced!

I am going to stay on the positive side and assume this is a phase I'm going through while undergoing radiotherapy. I will stay as active as possible.

However, I may need a walking stick for this time.

I've also ordered some CBD oil and I'm hoping it will help with the spasms.

Be well all,

Julie

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Hi Julie, sorry to hear about your cancer journey. You are obviously more affected than I was but it’s good that you are still able to go to the gym and also work. It’s some time now since I’ve been able to do those things and I use crutches around the house and a power chair when out. I have recovered from my surgery so think I can safely say you will too. Unfortunately we have a very diverse condition that manifests in different ways from person to person but keeping active is the best thing you can do. I would be interested in hearing how you get on with the CBD oil.

Keep in touch and best wishes for the rest of the radiotherapy

Hillary

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Thank you, Hillary. I hope you are well.

Yes, you're right of course in that we are all affected in different ways. I will post about the CBD oil as soon as I can.

Best,

Julie

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