Dad just diagnosed. Need advice

Where I was treated at christies hospital manchester the policy was empty bladder, which makes life much easier, but increases the chance of side effects. Mt vernon may do either. 

Hi Lyn,

I looked up perineural invasion. It states this is when the cancer cells have started to invade a nerve. Which could mean the cancer could travel. The hospital has not offered a CT scan/Bone scan. Should we be asking for one?

This is worrying as they said the cancer is localised, but after reading this, i am worried that it could have already spread?

Does this make the reaccurance higher now? Does it change the prognosis?

Ah phew! That has put my mind at rest. Feels like we get our heads around one thing and something else pops up.

Good luck with your treatment.

Wish you well.

Thank you so much! Dad is 77 so will be having HT followed by RT . HT for around 2 years. I was really worried that it could have spread and caused mets. They didn't suggest a bone scan. The whole thing is stressing me out now.

Worried about spread and the cancer returning. My mind is going into over drive

Thanks Lyn.

I spoke to the McMillan Nurse. She said from the MRI scan the pelvic area looked clear, so i assume this was in reference to the PNI.

She said they don't need a bone scan. 

Do you know if the oncologist will require one before RT starts?

I am someone along the line mentioned a scan before RT starts.

Dad picked up the tablets today. He start them from tomorrow.

Can anyone advise if evening primrose oil is good for hot flushes? Mum said she had no issues with the menopause while she was on evening primrose... Just wondered if dad should start as some articles say it does work..

Thank you so much Dave. Really appreciate the link. I read through it and it did make me smile. I defo agree that the stories about people with T2 suddenly progessing to mets is extremely scary. 

I was extremely anxious when dad was getting tested for this as i knew deep inside that he will have cancer. Jusy with his age and his PSA, i just knew. I had so many sleepless nights.

Then when we got the staging, i calmed down a bit as i thought at least it will be dealt with. Now my stress levels are beginning to raise again. 

Yes he is starting Bicalutamide tomorrow. He has a 3 week course. The injection in 7-10 days. I think he has to have a 1 month injection in the first instance to ensure he does not have an adverse reaction. After that he wants every 3 months. He doesn't want to keep going to the GP due to COVID. Do you know if the 3 monthly one will give him more side effects, as i assume it will be a higher dose??

OK, good to know re EP oil. No harm in him having a go at it.

Thanks for explaining re scans before RT. Il let dad know.

We still feel like we are dreaming all of this. One min we were all watching some crap TV and next we got a text from the GP about an urgent cancer referral to Urology. Here we are now! 

Trying to stay positive. Just slaps you in the face some days!

How you getting on?

Hi, 

I'm doing OK, thanks for asking. Having been off HT for about three months, I'm beginning to remember I used to be interested in sex. I expect it will be a few more months before I get anywhere near normal in that department. My last psa test was <0.1 more or less on the day the hormone treatment finished.

Next psa will be in November. It will rise, but I'm not planning on worrying until it goes above 2.1, having said that every one worries between the day the needle goes in and the day the results comeback. It seems a big gap between psa tests but I think with covid they are not keen on having people in, so pushing 6 month review to 7 months probably makes sense.

Starting with a 1 month zoladex is common, just in case there are problems. My gp suggested it, then he looked at my notes more carefully and said "no point in messing around with one month dose, you ain't got much choice but to stay on this for the full term, so straight on 3 month injection for you"

The drug comes as a pellet inserted under the skin it dissolves slowly releasing the drug. It's just a bigger pellet for the three month dose but it dissolves at the same rate as the smaller one so it is not actually a stronger dose per day, it just lasts longer. So I would not expect stronger side effects. I think one or two people have posted on here suggesting there was a difference in side effects between the two injections but I think it may be more to do with the fact the side effects come on gradually over a few months and people are into their second dose, which will be a three month one, by the time they notice things.

I've just noticed Lyn's post, she is correct that zoladex is actually 12 weeks, though I tend to say three months for brevity. 

There is some choice and discretion as to the exact hormone implant used. I can only speak for zoladex which is what I was on. The patient information leaflet specifies 84 days, my gp and a few nurses have said plus or minus one week. Strictly speaking they shouldn't really say anything other than what is specified in the patient information leaflet, however I can see that a weeks leeway is unlikely to do much harm.

When starting zoladex there is a surge of testosterone and that is the reason for dad taking bicalutamide, it suppresses the effect of that surge. So strictly speaking if the zoladex is a week late there may be a mini surge as the zoladex is reintroduced, but in reality I think the testicle take months to recover from zoladex so they would not be capable of making any surge of testosterone after one week of recovery time.

If the zoladex is delivered a week early dad may briefly be on a double dose, but a single dose is already suppressing all the testosterone so a double dose can't actually suppress any more testosterone than the single dose was suppressing. The zoladex drug probably has no other effect on any other systems in the body, so I don't think over dosing is a possibility. 

I suspect it would be impossible to make a capsule that dissolved precisely at 84 days. So I suspect the manufactures will expect either a few days of double dose or a few days of zero dose just at the time of the subsequent injection anyway.

So though it is not official, I would tolerate a week either side. And indeed as two of my injections were due on Bank Holidays we did move it by a week. In each case I chose to go to 11 weeks as I felt more comfortable being overdosed for a week than risking even a small possibility of a testosterone surge. 

Edited by member 21 Jul 2020 at 08:06  | Reason: Not specified

Oh wow. I am soo glad i i asked the question about overlapping. And the difference in 12 weeks and 3 months is a big difference. The GP is going to confirm with us today which injection they will use and i will then calculate the weeks/months and set reminders! I would rather he has them a few days earlier than later.

Dad is currently on Finasteride due to enlarged prostate. We asked the Macmillan nurses when he can stop this. One nurse said to stop it in a months time. The other nurse said to stop in 2 months time. Any idea what the protocol is on this?

I saw on the internet that Finasteride actually increases testosterone. Obviously we don't want this happening while the injections is stopping testosterone. Any advice on this?

He will be taking his first bicalutamide today.. 

OK thank you so much. The internet is driving me mad. But I can't seem to stop googling stuff!

We haven't even met the oncologist. Is this normal? We got the cancer diagnosis on the phone, was told to start bicalutamide then contact GP for the injections. Oncologist appointment won't be until Oct/Nov time. That will be the first time of meeting her.

I hope this is normal...