What you wish you had known before starting Radiotherapy?

Something else I wish I had known earlier is information about you, test results, appointments, letters etc, is shared on the NHS app, maybe DrDoctor and whichever app your GP surgery uses. In my case that’s AirMid. There is a warning on the NHS app that you might be seeing information not yet discussed with your GP. I only recently found the letters on AirMid.

Some centres let you look round before you start so that you are familiar with the machine that is going to treat you. Take advantage if you can.

Treatment for throat cancer has your head immobilised, clipped down to the treatment table under a thermoplastic mask. Most people manage this and have had one experience already when the thing was fitted and the treatment planned so it's no surprise but remember the radiographers are only a few seconds away if you run into trouble. 

You can take in your own music, imagine doing something you enjoy for the ten minutes you are under fire, or have sedation if you are really not coping.

It doesn't hurt but the side effects it produces do and they ramp up. Your radiographers are your conduit to the rest of the team so tell them every day how you feel and what you need.

Just a quickie from me (Quickies are not the same anymore).

I wish I'd known about the possibility of extended E.D.  It's been just under 4 years now!  I have my libido back (at times), testosterone is allegedly around 25... But still... My little friend is still my little friend!! 

Even if I had known, I'd still have chosen Radiotherapy, especially as I was unsuitable for surgery.  

So for anyone thinking about choosing Radiotherapy... Do it!!!

I could go on about fatigue and loss of stamina... but I won't!

I had radiotherapy as follow up treatment after a lumpectomy. Each session is fairly quick (though some days waiting times beforehand can be lengthy) & doesn’t cause pain as such, however I could feel the breast tissue tightening up each time, which was not helping with the cording down my arm & nerve healing - requiring lots of self massage & gentle stretching inbetween treatments. Also the nipple area for me, did gradually became increasingly sensitised & a little raw a few treatments in, so that personally created some apprehension for me at each successive session following. The radiologists encouraged me to stay the course & were always sympathetic, kind & open to discuss any concerns that I had. I diligently made sure that I washed (with my usual gentle, non-scented body wash) & didn’t apply any form of moisturiser or deodorant/antiperspirant before treatments. It was important to keep the breast dry for radiology treatments, but also to moisturise well afterwards. The problem I found was finding was the little bit of damp sweat trapped in the creases of the areole & around the base of the nipple. It wasn’t until these areas were increasingly growing sore, that I did a bit of my own online research & discovered the advice of applying a bit of baking powder before radiology treatments, in order to help dry out the creases (NOTE: Do not use talcum powder, as these can contain micro particles of metals from the mining process apparently!) Honestly, the radiology became considerably more bearable after the use of baking powder… wish I’d known that tip at the beginning!

1. It doesn’t hurt.

2. Breast cancer: holding your breath isn’t too bad.

3. The staff were all lovely and you get to meet other patients in the waiting room, everyone is supportive.

4. The worst thing for me was the 100 mile round trip every weekday day for 4 weeks for 15 minutes of treatment. That was very tiring.

5. You may have tiring and feeling not so good days.

6. Even if you cream the skin everyday and all looks fine, you can still get a rash when treatment has finished.

7. Apart from the journey - I wish I’d known that there is nothing to be scared of, it’s mostly straightforward, you meet nice people, both staff and patients. If it’s necessary you just need to do it.

Here goes - 37 days of pelvic radiotherapy for prostate cancer.

Some small bleeding, but when I reported it, I was reassured that this was a usual event, and tell the team again if it got any worse. It didn't.

Fatigue was a result, but it did not become a great difficulty. I missed a lot of television shows. I got my family to chauffeur me, and that was great.

It was necessary as well. I developed a completely unrelated back problem, which became quite severe, because I had to do the same thing every day, and this seemed to aggravate it. I couldn't drive after about day 15, but that had nothing to do with the radiation

I noticed that the fatigue continued for some time after the radiotherapy, but began to wear off after about two months.

There was also the problem that my bladder seemed to have developed a mind of its own. No problems that I had been warned about, it's just that I still needed to urinate at the same times a day as I had when on the treatment. It didn't matter what I drank, or didn't drink, I had to go. This all went on for a while before gradually wearing off. It was quite funny. My wife made a big show about setting her watch by me.

It was a very interesting experience. I asked questions, which were answered, and by the end of he course I knew quite a bit about the machines.

I did tell them that I thought that the end of the sessions should be accompanied by a "ding", rather like a microwave announcing that your food was done.

 KiwiK when I had my Radiotherapy for Prostate Cancer, I had irritation on my pelvis.

The Radiographers gave me some 'Flamigel'.  It's for mild radiation burns.  Rub it in, 3 times a day.

Quite a few men and women were given it to use.  I went through 3 tubes in my 20 Radiotherapy sessions.

If you are just about to start Radiotherapy, ask for this from your Radiographers.

 mstev2 love the piece about the 'ding'.   You can imagine the 'dings' going off all day.  But then whenever you used a microwave, it would remind you of the Radiotherapy.

mstev2 said:

I did tell them that I thought that the end of the sessions should be accompanied by a "ding", rather like a microwave announcing that your food was done.

Kate, your last point is 'spot on'.  I wonder if most people are a bit scared beforehand, but don't admit it?

I know I was!

all good advice, the Cant wait card is useful , as there have been a lot of times I needed the loo, most shops and garages will help out