After just 9 treatments I have suffered from extreme pain when urinating, difficulty starting and stopping, getting up every hour or more at night and irregular bowels. The urologist gave me Vesicare, which had no effect other than dry mouth. I skipped treatment # 10 and 11 and the problems have lessened considerably. I'm afraid of starting back with the remaining 35 treatments. Don't think I could withstand the pain and lack of sleep. I am 66 and have a Gleason of 6 and no bone or lympth incursion. Any advice?
Your have my heartfelt sympathy. I finished my RT last December. My experience was somewhat worse than yours. What kept me going was the knowledge that RT was the one and only hope of a cure for me, 74 last November.
My troubles with bowel and pee started at treatment one and rapidly built up in severity. Eventually despite pills from my GP I was spending 5 minutes in every 15 minutes day and night in desperate noisy agony. With my GP working behind the scenes I was fitted with a catheter after treatent 22. It was bliss. The rectum problem was not too bad and kept in half decent order with Loperimide. It resolved about four weeks after RT with some very mild intermittent symptoms ongoing.
The catheter was not without its problems but nothing compared with the agony I had been suffered. It remained blissful even with its problems. I was told repeatedly that the problem was bladder spasm but that was just standard prejudice. No serious enquiry was made as to the character and source of pain. It was clear to me that the two sphincters were seriously upset. After all they are in full line of fire. The bladder was avoided as far as possible. The bladder gave me a sharp OUCH! each time it emptied and touched the catheter balloon. It was no problem - the pain was sharp, sudden and momentary. Quite unlike the sphincter pain. I did learn to manage a soft landing occasionally - interesting rather than necessary.
I did manage to do without the catheter at RT plus five months. I had had four urine infections. They were not a trouble to me as I spotted them very quickly from odorous and cloudy urine. At 6 1/2 months after RT I still have pain. It is worse when I start peeing and eases as I get going. I have Tamsulosin which helps for 14 hours in the 24. Once and occasionally twice a day I have enough pain to force a mild moan. For the rest of the 10 hours it is never painful enough to excite a moan. For 14 hours it is mildly sore to start with. In all very liveable with.
The outcome of my therapy has made my side effects fully worth while. I still get tired during the day. My skin has been very dry.
PSA on diagnosis 18.00
PSA shortly before RT 1.99
PSA RT + 3 months 0.07
PSA RT + 6 months 0.02
I have been on HT since diagnosis.
Even with Gleason 4+4=8 I am hopeful of a cure or a longish period of remission. Of course no one gives a prognosis, me included, but I am living in that hope.
I hope my adventures with RT will be of use and encouragement to you. With a catheter you will no longer need to dread RT and peeing.The whole time I had a catheter I counted it a blessing and bliss. A leg bag by day and a night bag by night and I was very close to being as free as normal. (for the night bag I found a bucket much easier than the stand provided.) I wish you all the best. Doctors are human. Radiographers are human. Oncologists are human. One can talk back to them and need to do so at times. Urology nurses are very good with catheters and so are District Nurses. The kit is first class. Be sure to get spare catheters prescribed at the outset. If you need a change the district nurse will hope you have catheter and gel on hand.
I wish you the very best and hope you may be able to complete your RT course successfully. I am very glad I battled through. My greatest fear was I would be excluded and loose my one big hope for cure or remission.. I managed through without any gaps. Please be of good cheer.
Your Comrade in RT, Dod
Hello, just thought I'd say my other half had brachytherapy back in January. He has had so many bladder problems since then. Severe burning, urgency, hesitating ( really bad at night, waiting for a good 5 mins for the flow to start) the record has been up 9 times in the night.
Being a very busy farmer it has been hard work. He has been told he has radiation induced cystitis and radiation induced prostatitis. He is on numerous medication including tamsulosin twice a day. Plus antibiotics. I think he takes 7 tablets twice a day, he has never take medication before so all a shock really.
I think he is slowly turning a corner, but it has taken 6 months. Do persivere and ask for medication to help you. As you say your side effects are reducing after missing treatment at least it may stop again when you finish. I think my other half would have liked to take his radiation seeds out if he could! Good luck. All the best.
Why aren't you doing watchful waiting instead of aggressive treatment? Is there anything that suggests you have an aggressive cancer? Carl
Carl has a good point but I fear you are past that decision point. I also fear that if you do not now complete the RT you will close the door to RT treatment to the pelvis area. That could be significant if later your PCa becomes agressive.
Thanks to you all for your input. Carl, my cancer is restricted to one area of the gland and has been ranked as the lowest type, which makes me wonder if your advice should be followed, which is what I have been thinking the last few days. We all are different and have different feelings about this subject. I cannot imagine having to live with a catheter the rest of my life or to not make love to my lovely, sexy wife again. Everything I have researched tells me that cancer like mine will most likely not kill me. Quality of life is important to me and having to take numerous drugs, which all have their own side effects, and have a bag strapped to my leg is not what I consider quality of life. I guess i have some more heavy thinking to do. Thanks again
Dear David,
I am not sure where you live or why you were encouraged to pursue treatment. The only information I have about you is that the "cancer" was graded as a Gleason 6, the lowest grade possible. You are 66 years old and the likelihood that you have "cancer" is approximately 60%. They happened to find it in a biopsy. Now you are on the prostate treatment train. Are there any indications the "cancer" is aggressive or that it would ever harm you?
I would suggest that you find online the US Preventative Services Task Force Report on Prostate Cancer and read it in its entirety. You will see why in the above I have placed the description of your condition as cancer in quotes. They report that your condition should not be called cancer because then people get frightened and pursue unnecessary treatment.
I wish you the Best. Carl
Hello David. I think my other half wishes he had stayed on active surveillance. It was suggested by the consultant. As he is in his 50's the consultant said he would need treatment at some stage, but said it could be several years time. (Gleason 3+3) His psa was 3.7 at diagnosis, in 5 months it rose to 4.9. Having read on another prostate cancer forum of people with gleason scores lower and cancer already spread to the bones we decided not to just leave it. So went with treatment. I know some days he wishes he never had the brachy. But he would have had to have treatment sometime.
Sorry I meant a lower psa and the cancer had spread not gleason score.
I have had cancer for approximately 20 years. I am now 70 and have no symptoms. At the time of diagnosis my Gleason was graded as a 3 + 4. My PSA is now 86. I anticipate living to 87 and I suspect that my prostate cancer will take my life at about the age of 92 -94. What tells you that your husband would have needed treatment sometime? Carl
I wish we were as brave as you to leave it, we read too many stories of men with psa as low as 1 with bone spread.
The consultant said if we did AS then my other half would need a large template biopsy straight away to ensure nothing was missed, then yearly biopsies, neither of which he wanted. He also said treatment would be needed when the psa reached about 10-15 he said that could be a year, more or 5 years plus, there is no way of telling how long. It went from 3.7 to 4.9 in 6 months if it continued at that speed of raising we would have had a few years. On the other site I look on there are many, many stories of young men even in early 40's with this disease, most have a high gleason or bone spread, I have not read many as good as yours. You are lucky and brave too.
My brother in law had Gleason 6 in a small local cluster but did not wish to live with the anxiety of a possible unwelcome surprise. And went for RT . He had very little trouble. To revert to my experience i had a catheter for about 5 months.. ED can be a problem but mostly for those who have some weakness before treatment starts. I am 74 and all is working normally since RT plus 4 months except no ejaculate. Function was resuming in a small way during RH. In all i feel things have gone very well for me.
Hi Alfred. Again, I would recommend a thorough reading of the US Preventative Services Task Force Recommendations on Prostate Cancer. I don't believe that I am brave. Rather, I consider myself prudent and unswayed by simple anxiety. Life has real dangers, but anxiety is not one of them unless we act based on anxiety rather than prudence. In the US there are urologists who admit that they provide aggressive treatments for "cancers" that they don't believe to be threatening because the patient is not able to cope with the anxiety of having cancer. While it is true that anxiety can be assuaged with a ritual and belief in the ritual (prayer, some action, even surgery) I would prefer to try to face anxiety and determine whether the situation is actually dangerous or whether it is merely anxiety about unlikely possibilities. Also, PSA was never designed or believed appropriate for screening for prostate cancer. It is a measure of aggressiveness when it doubles quickly (generally believed to be less than 2 years) but you only provide two data points and it is notoriously an innacurate measure. With all that said, I wish you the best. Carl
Sorry for the time lag, Carl but my original reply was never posted since I guess the software didn't like a word I used instead of "urination". You know what I mean
. The moderation on this site isn't working very well I guess.
Anyway, what I said was that because of the side effects I was experiencing with the RT after just 9 treatments, I decided to stop them. I read some good info on the American Cancer Society site which helped me decide to stop. The horrible urination symptoms after so few treatments was more than I wanted to deal with. Your philosophy rings true with me.
You may be correct Carl in saying it may not have needed treatment. PSA was measured over 8 years (unknown to us, it was taken with bloods for other things) I noted it was at 1.9 3 years previously which is classed as normal (ish) up to 4.9
When I asked the consultant various questions from things I had read online he said he didn't mind me researching online, but said never to read anything American. I can't remember why but I haven't ever since.
We were told it may be best to wait but having read about someone on another site, age 44 with a psa of 4 point something and a gleason of 6 who went on to have a template biopsy his gleason was upgraded to 4+3 and it had spread to the bones. I read that the smallest prostate cancer can spread to the bones, it has nothing to do with size when it goes in the bloodstream.
Both of us couldn't cope with the worry of if and when it could spread. But I know he sometimes wishes he had not had the treatment yet. But being in his 50's he may be able to cope with the side effects better than he would several years down the line. We will never know how long it would have been before treatment would be needed.
Hi David. Nice to hear back from you and I wish you the best. We all have to make decisions regarding prostate cancer and whether to simply live with it and hope to die of something else or not. Again, My Best To You. Carl
Thanks Carl. Your comments also figured in my decision. We all have to die and some of us cope with that in different ways.
Hello Alfie My Dear, how are you ?Well I trust ! And the Farm and Kids etal doing well?
I'm sorry to hear Hubby is still having a rough time with the brachytherapy side effects and equally sorry to see you regularly publicly beating yourself up about it, on the Forum.
You both did the best you could at the time, to choose a path most likely to enable Hubby to keep farming at calving time and yet also do something about the intense anxiety which you particularly, quite naturally felt.
I do hope you will soon more wholly forgive yourself.
Gaining wisdom is often in one way or another, a painful experience accumulated retrospectively.
You have nothing to reproach yourself for.
Personally, I could not have Brachytherapy, but am inclined to think I might have chosen it. Also I think if my side effects from X42 IMRT are anything to go by, I too would have had an experience not dissimilar to your Husband's.
It's just the luck of the draw Alfie.
Deciding upon which treatment when you have a young wife and children is a headache, very few on this Site would have had. So please give yourself a break.
My PSA rose at about the same rate as your Hubby's. Can't quite remember, but I think from 4 to 10 in about 3&1/2 yrs. And yes, come the time for me to want to do something about it , I was 4 +3 and with a T2b, nicely tucked in around the bladder neck.
Well, there you go ... ' Nice one Dudley ! ' I thought ... ( But you can't have your cake and eat it too ).
With Best Regards
Dudley
P S for Carl, please:
Hi Carl, the distance sale on that BMW I told you about fell through and the Chap ' phoned me and said ... ' Do you still want it ?'
I did ! ... And now it's occasional unintentional trips to
' Wheelie- World ' ! ( But mercifully, it has a built in limiter ! ).
Hello David,
I had read your Posts and appreciated your position and then left the site thinking that you were in the good hands advice-wise, of George, Carl and Alfie. And I am not dissuaded from that opinion.
But later in the day a red warning light switched on and began to grow stronger. The significance of you stopping EBRT at session nine and still having a further 35 scheduled ( which you will probably not attend ), impacted on me. That's 44 in all.
The usual on average is around 35-37. If they scheduled you for 44, then there must be an aspect of your Cancer which they know but of which, so far, you seem to be in ignorance,
Why do I say this ? Well, my vital statistics were PSA 10, Gleason 7 ( 4+3 ), T2b. And a Mini-TURP ... And I got given 42 EBRT's 28 at one level of radiation and inclusive of seminal vesicles . Then 14 at a higher dosage aimed specifically at the tumour. When they had finished, I was told that if the cancer came back, I "could not have anymore EBRT to the prostate". But, that they were holding 2-3 sessions back for possible metastasis elsewhere in the body, later on.
So for you to have been scheduled for 44 sessions straight off, it would seem prudent to enquire of your Ocologist, exactly what they were aiming to do, at what strength(s) and why. Irrespective of whether you go ahead with further treatment or not, I believe you need to make any decision, both fully informed and made aware of risks and alternatives.
I was given 42 sessions because they considered I had " a significant amount of disease " and that it was a "moderately aggressive Prostate Cancer ". Also that if I did not have treatment, which was a course I was contemplating, I would be dead inside 5 years with my last two being a form of hell on Earth. Their words,
So how come you should be getting 44 and that you are abandoning the treatment anyway? Are you being wise ? Don't you need to ask a few more questions ?
With Kind Regards,
Dudley
The number of 43 to 44 were quoted for someone who still had a prostate. 37 are given if you have no prostate, which now sounds strange.......why have RT on a non-existant organ?