I have been asked to start treatment next week , I think roughly 3 weeks on Bicalutamide with another drug added , but could it be 3 months on Bicalutamide. then one of 3 other drugs for 12 months got from my doctors , + 20 sessions of Radio therapy, I`am active cycling and cannot make a decision on this at all because of the fatigue , weight gain and cardio vascular problems these drugs can cause
In my opinion as I will state to eurology next week, there is to many If`s involved , example , what if I`am to ill to attend an appointment at Radio Therapy , What if I ge stuck in traffic , what if , there are thousands of what if`s , that are not answered so ?.
I may ask for alternate therapy such as Cyber Knife , this gives RT in 5 sessions and is very accurate, but I think I may be just over the T rated factors to qualify for it.
On the last letter I got it stated PSA 11 , Gleason 4+3 , Radiology T2c / T3 ( with 6mm peri-prostatic node)
Histology was initially reported as Gleason 3+4 but on review on the right side 4 predominates and therefore is 4+3.
I understand why the initial drug like Bicalutamide is given , but like I said to the Doctor all men surely ? do not make or have the same amount of testosterone.
I had an isotope bone scan as well , I`am I suppose still at the rejection level if that is the right word and still trying to gather knowledge , the thought of taking the Bicalutamide ? which will give me great fatigue is not good , I do not understand the booklets , saying you have to keep active ? how can any one keep active on those drugs , cycling is all I have really , how can any one keep active with weight gain , fatigue and cardio vascular risks , I all ready have a 40/50% blockage of an artery which was not treated , as about 70% is the norm for treatment.
PS: cyclist all ready have a raised PSA level , but that's no matter now
I didn't have the hormone therapy so there are people on here who know more than me about this subject hopefully they will reply.
From what I have read in the past it is still possible to excercise while undergoing treatment, in fact. It's much better if u can to do something, cycling sounds ok.
If the HT gives u bad side effects I think that you can try a different one but the one u are are on is pretty effective I believe.
I know that it all looks a bit daunting from where u are sitting but when u get into some kind of routine and finish your Radiotherapy hopefully things will feel better.
Cyberknife is a good idea, as u mentioned but not many centres use it unless you are prepared to finance it yourself
Steve
Hello Steve so why did you not have Hormone Therapy ? it seems a sort of { set in concrete thing } that needs to be done to shrink the cells and stop the cells feeding off the Testosterone produced , as for Cyber Knife some people do get it on the NHS probably for tumors that are inoperable.
In my mind set I still do not see how any one can get good excercise when taking HT , it causes to many side effects
I didn't want HT and when I started treatment I changed hospitals and they didn't push it, HT that is.
If psa and Gleeson are low and the tumour is contained then HT is not always necessary but I think that these days specialists add it on anyway.
Good to keep HT for back up possibly in the future, well that's my thinking anyway.
Steve
Hi,
Sorry you have had to join this forum on a diagnosis of cancer. Just remember we are all different and react to medication in different ways. We may not get all the side effects listed from medications and get them to a lesser or greater degree.
I had hormone therapy for 9 months and then 20 rounds of radiotherapy. I kept active through out even during the radiotherapy going to the gym at least 3 if not 4 times a week and lots of walking and also swimming This helps with the fatigue and stops it taking hold of you. I did not put on weight because of this and did not get muscle wastage from the Hormone Therapy as I kept active. What was far worse than all the prostate cancer treatment was a heart problem which knocked me for six just 4 months after completing my treatment where I couldn't do anything without gasping for breath - even walking downstairs caused me to get breathless. I stopped being able to excercise for about 6 months and then started slowly on a cardo rehab programme but at 74 going on 75 the damage had been done and now my muscles are quite "soggy" . I still exercise though as it is imperative to keep the muscle tone I have left since this heart problem. A couple of weeks before this heart problem kicked in and just over 3 months post radiotherapy I cycled 30 miles for charity. I didn't let my diagnosis or the treatment change the way I lived my life at all apart from having to go to radiotherapy every weekday for 4 weeks. I possibly had a few naps in the afternoon but at my age I was already falling asleep watching the television in the evenings!
You will probably get the buicalutamide for a week to ten days before getting your hormone injection then you will possibly be given a one month injection to see how that particular type of injection works for you whilst carrying on with the bicalutamide for another week or so. This is to stop "Tumour Flare" where the body reacts and produces more testosterone when starting HT and causes the tumour to put on a growth spurt. If you get really bad reactions to the initial 1 month injection then they may consider changing to another type of hormone treatment. You will then most likely start on 3 month injections. Usually it is better to be on the Hormone injections for at least 6 months prior to starting radiotherapy. This gives the HT time to bring your PSA down and it also starts to weaken the cancer cells ready to be killed off by the radiotherapy. Your treatment may differ as different consultants, different hospitals and GP surgeries differ in the way all this is done.
At the start of my diagnosis I had a PSA of 12.9 and a gleason score of 7 (3+4) and T2 N0 M0 However when the the treatment rad. onc saw the scans she upgraded to T3 as there was a bulge on the back of the prostate and so they could not rule out minor spread which couldn't be seen. I also consulted with the Proton Beam set up in Prague but couldn't have this as I had a prosthetic metal hip. I then went to consult at the Royal Marsden about Cyber Knife but the consultant there believed that that treatment would not work so well for me as I already had pre-existing conditions affecting my bladder and bowel and the cyber knife would certainly make these worse. Because of these pre-existing conditions I wanted something that would not cause collateral damage to both bladder and bowel and in the end by a weird process which included getting a long phone call from a fellow sufferer in Australia I finally found a hospital close enough to home to have fiducial markers (3 gold seeds about the size of grains of rice) implanted into the prostate to help target the radiotherapy beams more effectively. I think it is because of this I had no bowel or bladder problems whilst going through radiotherapy apart from 1 single night where I hardly slept as I had to urinate so often - though many of the men having treatment at the same time as me did have continuous problems from about the second week on, and I have had few problems since. Again when diagnosed with my heart problem they found I had a low iron count and thought I was bleeding internally and so ordered a colonoscopy - turned out I had no internal bleeding but post the colonoscopy I had some bowel problems which lasted quite a while - they started on the very day of the colonoscopy so can't blame the radiotherapy for that though it could have aggravated the slight damage - which I was lucky enough to see on the screen during the colonoscopy just small red patches. I have since met friends who have told me it took them 9 months to recover from a colonoscopy as they have had to change eating habits - indeed it was one of the things they tried with me cutting out gluten etc. We don't know whether it was the colonoscopy itself or the preparation used to clear the bowel prior to it as some of the preparations do have some side effects but this is not widely reported.
Anyway I digress. If the cancer is contained in the prostate could you have brachytherapy? This is usually done as a day case - sometimes you are kept in over night. My brother had this about a month ago and within a week was back at work - a desk job so a more physical job may need more sick leave - he doesn't exercise so I can't really tell you how this would affect your ability to exercise though I would think two or three weeks recovery time would be needed. I was offered this initially but when they realised I had already had a TURP procedure on the prostate about 10 years prior to the cancer diagnosis and my urine flow was pretty low decided against it. I imagine that once the bulge on the back of the prostate was seen this would also have ruled this out. I don't know if your gleason score is just a little too high for this.
I advise you to go onto the prostate cancer website prostatecanceruk.org and have a look at their publications. The prostate cancer toolkit which is a collection of pamphlets for men newly diagnosed is brilliant.
Good Luck and take care and research your options so that you make the right choice for you.
Des,
PS I was told not to do a long cycle ride, a heavy gym session and avoid sexual intercourse in the 48 hours prior to having a PSA test.
You need someone to post with experience on HT who will be better able to help u, there are some good people on here who know loads about HT and have been thru it themselves.
Steve
Just to clarify. At the first local hospital I went to I would have continued on HT for 2 years in total. The consultant at the hospital I went to which offered the implantation of the fiducial markers into the prostate finished my HT just before the radiotherapy. So I had my last 3 month injection about 2 weeks before the radiotherapy began. He said the amount of HT in the body would continue working for up to 9 months to a year post radiotherapy but of course once the injections had finished any side effects got fewer and less severe. Si I had 3 x 3 month injections in total as a mix up at my surgery meant I did not have the first as a 1 month injection It was only after the HT that I realised the worst side effect I had was the hot flushes but for me even these were minimal as I had not noticed them too much whilst on the HT. As has already been said above the new rad. onc. wanted, if necessary to keep further HT for future treatment if it ever became necessary so wanted the minimum before radiotherapy started I would have only had the 2 3 month injections but Christmas and New Year intervened and I was due the third injection just before Christmas on 20th December so he decided we should go ahead with that and i started my radiotherapy on 4th January.
Thanks for the reply but that has confirmed all my worst fears , I cycle a lot but all ready have a 40%to50% blockage of a branch Artery , so what heart problems did you suffer , ? what was the diagnosis about the heart , ? how can Hormone treatment cause coronary blockage of the veins.
I would like to ask how can I get better treatment at another hospital , I think I would not qualify for Cyber Knife at the Royal Marsden,
? where can I get this { quote your reply } this >> " fiducial markers (3 gold seeds about the size of grains of rice) implanted into the prostate to help target the radiotherapy beams more effectively."
and what type of radio therapy was used with this treatment ? where at which hospital
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