Dad just diagnosed. Need advice

Hello Tina,

Sorry to hear about your dad's diagnosis. I totally understand what you must be going through. I was exactly the same when we were first told. This group is amazing. Honestly, its been an absolute lifesaver for me and my family. I had so many questions and also did so much reading. My head used to hurt as well! The people on this group are very knowledgeable. Would be a good idea, if you haven't done so already, to start your on thread so that everyone can read it and support. I will defo try and answer the questions below too!

My dad had 6 months of hormone therapy and 20 sessions of radiotherapy. He was actually OK with both. The only side effect, which really bothers him and still bothers him, are the hot flashes, which are defo getting less but he hates them. During radiotherapy he was getting up around 5 times a night to go wee, however this has significantly reduced to about 2 times a night now. Not sure how active your dad is? Being active, doing exercises does help. My dad got a bit tired from treatment but kept up the walking, which helped him a lot. He also got a bit constipated but that was resolved once he upped fibre and fruit intake.

My dad was T2C at diagnosis, he was not offered active surveillance, however i am sure some other members on here will be able to answer that question. This is where it would help to set up your own thread for sure.

I know it seems so scary now, all the unknown and not knowing what to do for the best. We were so scared initially that my dad even considered doing nothing, but we did a lot of research and reading on here and realised that it may not be so bad. A lot of members on here have been as ok as they can be with the treatment. We were surprised how OK my dad was. He was driving to and from RT by himself etc. 

I hope this has helped a bit. I would say do research, start your own thread on here and see what options you have and what your dad feels comfortable with?

My dad had a knee issue recently, which stopped him walking, but recently he had a steroid injection which has 99% resolved the pain! He should be back to walks after another 2 weeks or so.

Feel free to ask questions, or just write on here. We are all here to support eachother.

I worry a lot too, but i am trying to follow a fellow member, Dave's, advice.. worrying wont change the outcome....

Glad to hear your dad is well and not in pain! Hopefully he will be able to walk soon!

I have been reading a lot.

I feel my dad is scared of spreading and wants to get it done. He is active, walks and works in his garden and generally well.

However he had TURP performed in 2016 and this puts him in greater risk of side effects like urinary incontinence. Does your dad have any or just more frequently going?

Did your dad have a rectal spacer before the RT and did they use fiducial markers during his mapping session?

How long did it take him to recover after the RT?

I am meeting today an oncologist to discuss further and then decide the course of action.

Yes, I am trying not to go mad and worry too much, cause it's not helpful, but it's not easy.

Thanks again!

Hello!

Update on dad. Not on prostate stuff as that seems to be OK for now, fingers crossed. 

He had the follow up endoscopy as first one showed possible pre cancer. The endoscopy report did not show anything to worry about. They took around 25 biopsies. After 3 weeks of waiting for the results, i emailed the endoscopy department today. They emailed back to advise an outpatient appointment will be made where results of biopsy will be discussed. Now this has me major worried.. Dave.. i am trying sooo hard to tell myself that worrying doesn't change the outcome! I just can't help thinking why they want to speak/see him. He has been under there care for over 30 years now, they always write with results. I am hoping best case, they have definite for pre cancer and want to discuss. Anything but another cancer...

Just wanted to share! 

Hope everyone is keeping well.

Not surprised Dave and i always think about your wise words when im totally over thinking. No news from them yet. I know NHS have a backlog but i wish they would just tell us ASAP. Waiting is soo difficult.

I've done 2 skydive's.. highly recommended! 

How are you keeping? 

Wow, onco is proper bored of you.. a year.. that is amazing! Dad's next PSA is in 6 months again. 

Im glad all is well your end. Winter sun is out. Clocks change soon, so lighter evenings. Summer sun will be here soon. Please no more COVID restrictions!

Terrible what is happening in the world. Not to mention cost of living rise. My energy bill is giving me panic attacks! Heard COVID cases are on the up.. argh!

Hope you are well Bob.

Still no news from the hospital re dads biopsy results. 4 weeks on Monday since the endoscopy. 

Hello! So finally we had a call from the endoscopy department. They sent the biopsies for a 2nd opinion to one of the London Trust. They said it looks all clear and have put dad back on 2 years endoscopies for Barrett's Oesophagus. Good news!

Hot flushes are really less now too. He only gets them at night but doesn't seem to bother him as much. A lot of the side effects from the treatment seem to be getting less intense. 

Hope everyone is well. The sun is due soon, im sure!

Exactly Bob.. whatever "normal" is! Hopefully he stays OK for now. How are you keeping? Any lingering side effects?

The world is a mad place at the moment! Glad to hear you are well. Lovely weather today. Definitely lifts the mood!

Wow what a bargain! Apparently today was the last of the warm days for a while. Time for winter clothes again!! 

Hello Bob,.

Good to hear from you! Excellent PSA! That is not going to raise any concern from anyone. Bound to go up as testosterone increases ( i believe). Really pleased!

Are you on 6 monthly checks?

How are you otherwise?

Dad is fine for now. Hasnt complained about anything, including hot flushes! Lets see how long that lasts!

I think i am suffering with hay fever this year too, don't usually get it at all. Cost of living crisis is a nightmare! Can't afford most things anymore, literally everything has increased.

Spoke to soon, dad mentioned hot flushes today! He said he gets a lot of them only at night. He doesn't understand why they only come at night, none during the day.. he said it only annoys him as it wakes him up

Lool Dave! This literally made me laugh out loud! Honestly, was a miracle that he didn't moan for a few months! Now he is saying his foot hurts.. nice to see he is back to his usual self! 

Is your PSA due soon? Looked at your profile, last one was December, right?

There was a lot of pollen flying around today. Yeh, im sure hot flushes will lessen in time. They already are 85% better, id say!

Great! End of the year for another PSA. I think a slow increase is to be expected. Some people go onto yearly PSA. I wonder how they decide on when the frequency changes. Dave, i think is on yearly.. or was it 6 months. I remember someone went to yearly.  Dads is coming up in September. Our surgery as a massive backlog with bloods so i am going to call to get an appointment in the diary as soon as we hit July! 

Really pleased Bob. Great result.

Thanks - Yes, the GP Surgery's are steadily falling apart - this was the first time, I had to go to hospital, to get the sample of blood taken - up to now, this was always done at the Surgery - but at least they do monitor you.
The NHS is an odd creature, good in parts - useless in others.

Hello!

Hope everyone is keeping well and haven't melted in this crazy hot weather! Extremely humid today as well.

Dads PSA result is in.. same as last time 0.02. Really pleased about it. Oncology appointment on 13th September. I assume they will say nothing to worry and to do another PSA in 6 months.

Dad is OK apart from really suffering from hot flushes in this heat. He is really moaning about it, i think it does really bother him. He has had 2 reflexology sessions in hope that it will help, yet to see a result!

Hopefully the humidity levels will die down soon so he and others can be more comfortable.

Take care.

Thank you Lyn. I get PSA anxiety whilst he is really laid-back about it all! One less thing to worry about until the next time! Hope all is well with you.

Also had a GP Mot blood test - most things not bad, but my Tryglycerides are too high !

Hope your old chap is OK.

I've an appointment at the Surgery on Tues, hopefully - no lectures ! It's a Nurse, cannot get near a Doctor !

I've never smoked & only occasional, alcohol (Cider with Sheila) so I'm probably not too bad for a 74 year old.

There seem to be a lot of overweight youngsters on invalid scooters (or wheelchairs) these days. Not good.

Hopefully, Dad works in a Cancer Research shop! - I often have a look round them myself, but finding something useful - takes quite a lot of walking, but that's all good exercise.

Hello all,

Hope everyone is keeping well. Dad's PSA result remained the same as last time, 0.02. So pleased about it! Oncology appointment in 3 weeks time, presume they will keep him on 6 monthly checks. 

He is off on holiday for 2 weeks from next week! Nice not to have this to worry about.

Thanks again to everyone for the support and knowledge. Don't know where we would be without this community. Its been a god send.