ONE YEAR POST RADIOTHERAPY

[Desanthony]

Hello everyone,

Just wanted to let you know that at my last check one year post radiotherapy my PSA is now undetectable. I am doing OK too. A few late onset side effects after 6 months which may or may not be radiation proctitis - gastroenterologist says it is but onc says it isn't. Am hoping they will sort something out between them soon. Am treating it with various things which may work - certainly things have got better generally since I started the treatment in October and I can live with things as they are so long as they don't get any worse.

All the best to everyone here.

Des

[YostConner]

Nice to see your good news!

[erjlg3]

That Is Great news Des! I hope the tummy side effect issues lessen more each day. Glad You're Feeling Fairly Well.

😊Jackie

[G9doingfine]

So glad to hear you are doing so well after 1 year !!!!

I

Finished 35 sessions right before thanksgiving and I have to say the sessions were way easier than I thought . I even asked my rad onc if I was being given radiation because I wasn’t feeling ANY side effects! He assured me the machine was

In fact turned on the whole time . I assumed so as everyone surely left the room when it was

Moving !!!

Anyway , almost 3 months later and I wouldn’t say anything hurts , no bleeding , no discomfort , but since I resumed travel for work I am aware of potential urgency to go to the bathroom . I opt for seats close to the bathroom instead of exit row seats .

ED seems to be worse too , not that it was great before RT .

Anyway , still hopeful the grays hit the right anatomy.

Good luck to you too !

[JamesAtlanta]

Congratulations on this major milestone! We are all glad you are doing so well!

James

[MyDad76]

Congrats! What kind of radiotheraphy did you have? IMRT? How are you treating proctitis?

[Desanthony]

Hi, Thanks everyone. At present I am quite pleased with this as it seemed at one time we may have been late finding the cancer despite my best efforts.

Yes, I had IMRT with the help of fiducial markers (gold seeds injected into the prostate a couple of weeks before the start of radiotherapy) to target it to the right places as I had pre-existing conditions which I did not want exacerbated by a more scatter gun effect and hoped this would avoid most collateral damage to bladder, bowel and rectum- this may be why I have still got late onset mild radiation proctitis - if that is actually what it is because the radiologist/oncologist does not think it is as the problem seems to be further away from the site of where they would expect to find it and therefore doesn't think that the sucralfate enemas to treat it are therefore worth doing. Having said that the gastro hasn't sent the reports to him which is annoying as I was told the results and reports from all investigations could be accessed via the computer network. This wasn't helped by the fact that my GP received an obscure letter about treatment which they thought meant the gastro was going to treat it back in July when actually the gastro should have been clearer in saying he wanted the GP to prescribe the sucralfate enema. So it wasn't until early October when I finally managed to get another appointment with the gastro - he had been away all of August that it did finally get prescribed. I am still on the sucralfate enemas as the onc didn't want to take me off them incase they were doing some good and will make a decision once he sees the reports. Also my new GP and a phramacist friend suggested using buscopan to help with spasms, 1 loperamide daily - though I tend to only take this when I have a problem and if and when necessary fybogel to bulk up stools - otherwise I was having frequent small exlosive bowel movements - sometimes when I was actually having a wee! Could be embarassing! I can't actually say whether or not any of this has worked as things may be getting better on their own! The fybogel, loperamide and buscopan do their job but really treat a symptom rather than curing ithe problem. I have just asked after my 1 year check up to get referred to the gastro used by my cancer centre as they are more likely to know what to look for and maybe different trearment. It is doubtful if the Docs in the little local hospital I went to have actually seen radiation proctitis very often. Unfortunately being at a larger teaching hospital out of area they are very busy and the referral will take longer because of this. Again, wish someone had suggested this a few months ago. Still, never mind, it will get done now.

[Dayatatime in reply to Desanthony]

Awesome Des, It's always great to hear when someone is doing well and where they only hoped they would be. I started in a small local hospital too and found its not that they don't care. It seems they are very limited on experience and not willing to give treatment other than conventional care. I highly recommend second and third opinions. Keep up the good fight.

Ron

[Desanthony]

So true Ron. Thanks

[motosue]

Congratulations!

[Hidden]

Great being undetectable...Hope you continue to feel better and stronger.

[Desanthony]

Thanks both.