T2 stage might be bumped up to T3

Interesting that you were told you would have 37 fractions (sessions) of RT rather than 20, due to possible spread to Seminal vesical increasing staging to T3. The larger number of fractions used to be the norm but a study found that by reducing to 20, albeit at a higher dose each time, results were just as good and side effects overall slightly less severe. The patient obviously benefitted in attending on fewer occasions and the hospital from less setting up time for the treatment course. I was offered the opportunity to take part in the aforementioned study called CHHiP in 2007 whilst under the care of The Royal Marsdon. If you participated, you were computer randomised into the standard 37 fractions or hypofractionated arms of 20 or19 fractions. So my being staged at T3A did not preclude the possibility of me of being drawn in one of the hypofractionated arms, (the 20 one having since become more frequently adopted over the years). Maybe there is a particular reason why spread to Seminal Vesical makes a difference to being in the process of breaking out of the Prostate but I have not heard of this affecting the number of fractions, so as a learning point would be interested to know of your Oncologist if this or another reason for this and whether this is her idea or is accepted practice now, assuming you get the opportunity to ask her.

I originally had a short course of cipro acetate to counteract 'flare' prior to starting Zoladex injections. More recently, I was prescribed Bicalutimide as a precursor to resuming Zoladex, so perhaps this is a more modern approach. As Lyn says, some men just continue with Bicalutimide rather than change. What is decided may well depend on what your Oncologist favours in your situation and how you respond. As you may be aware, men experience different effects with HT, both in type and severity. So no certainty you will be affected in same way as any member only on Bicalutimide. A particularly bad reaction may lead to a different form of HT being tried. You should feel free to discuss with your Oncologist regardless.

Edited by member 24 Feb 2022 at 01:27  | Reason: Not specified

Best wishes,

Chris

Nigel, those initial consultations can seem rushed but equally, it's hard to know what to ask before you get into the treatment stage. Once you start treatment, there seem to be plenty of questions you could have asked before but you will probably be able to find the answers to most of them here. Given you don't have a choice between a prostatectomy and RT one of the big questions is answered for you.

If you have your treatment with a Linac machine I would expect that the seminal vesicle region will be treated each time you have RT. I believe the extra treatments are used because you're cancer is rated a higher risk for spreading.

You've got a few months ahead of you before RT so, if you can, work on your fitness and diet. ADT and RT do knock back fitness levels which can be frustrating but if you can pick up some "momentum" beforehand it will help carry you through the RT. 

Above the age of 60 most people need more protein in their diet. Above 60 AND being treated with ADT this becomes even more important. Recommended daily protein levels rise from the normal requirement of about .8 gm per kilo of body weight per day to between 1.2 and 2 gm per kilo of body weight per day. Do the math and this adds up to a lot of fish, meat or nuts etc so a simple protein supplement can help a lot. I didn't pick up on this until some time after RT and I'm certain that lack of protein was the cause of a fair amount of fatigue for me.

Alternative treatments are always attractive but HT and RT are well proven and RT particularly, is always being tweeked and improved so it's a perfectly good no. 1 choice.

Jules

The OP has not had previous radical treatment so if he has RT it will be primary rather than Salvage RT.

Regardless, I am surprised you were told there is a move away from the 20 fraction regime back to 37 fractions as more recent members to the forum seem to have had hypofractionated RT.  Furthermore, the 4 major trials have shown that if anything, outcomes are slightly better with hypofractionted, and although toxicity slightly worse initially, is the same after three months and at five years. The results of the trials, which produced slightly different results, are clearly set out and summarised by NHS England.  https://www.england.nhs.uk/wp-content/uploads/2017/10/clinical-policy-hypofractionated-external-beam-radiotherapy.pdf

Incidentally, reference is made within the paper on hypofractionated RT being suitable where the cancer is also in the Seminal Vesicles. 

However, Oncologists sometimes differ in the way they treat, and a patient commits himself to how his consultant decides. 

Just to complicate things, there are also two types of extension into the seminal vesicles ... evidence of cancer in the SVs dangling outside the prostate gland (T3) and evidence of cancer cells in the area of SVs inside the prostate (T2), the root of each SV joining the ejaculatory duct inside the prostate and then extending out (like your ears are outside your head but the ear canal reaches inside). It seems your MRI indicated T3 (evidence of cancer in the SV) and the PET scan indicated T2 (around the area where the SVs meet the ejaculatory duct inside the gland)? Either way, I think if you were my brother or father, I would want you to be treated as high risk rather than intermediate risk. 

As you have picked up, there is very little evidence now to suggest that 3 years of HT is beneficial but in all honesty, it might be better to agree to it at the start and then have a conversation about stopping at 18 months once you have a year or so of stable low PSA under your belt. A number of members here have been able to negotiate an early halt to HT once they were in the midst. 

Edited by member 26 Feb 2022 at 15:01  | Reason: Not specified

Others have reported the leg spasms and I had a similar experience on Zoladex, so it seems to be a "normal" side effect. My GP told me I was mistaken to think there was any connection but this sort of detail is often beyond the experience of that level of medical wisdom. The anxiety and shakiness will probably diminish as your system gets used to the change.

Maybe we should have a specific thread on exercise and ADT. Loss of testosterone does some very strange things to our ability to exert ourselves but staying fit is acknowledged as making a significant difference in both long term health and even survival.

Jules

As far as diet and keeping fit go, there's not much specific info available and most of it simply suggests the sort of normal healthy diet we're all well acquainted with. The difficulty with that, is that it's very easy to gain weight and at the same time lose muscle on a normal balanced diet. Andy has posted some useful experience on this, including the measurements from a body scanner, suggesting that your body can actually burn up muscle rather than fat to produce energy. You will probably find you need to keep the carbs down and the protein up, while still eating the mandatory fruit and veg. I'm speaking from Zoladex experience so Bical. might be slightly different.

ADT can effect mood but that varies widely, so it's hard to say what you might experience. The whole thing is a sort of mind battle as much as anything else. Initially I found the loss of physical ability slightly frustrating but after getting a feel for the rather different way things were working, it's become an interesting challenge to build up again. Beyond three years ADT can have undesirable side effects but you shouldn't be in that situation. To prevent loss of bone mass calcium supplements and gym work are recommended but again just keeping active is probably the best medicine.

Jules