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Dad just diagnosed. Need advice

User
Posted 17 Feb 2022 at 22:23

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....

User
Posted 17 Feb 2022 at 22:33

And i should add, no regrets from dad. He was surprised about how well he coped with the treatment. We thought it was going to be a lot worse, however, everyone is different and not everyone gets the same side effects.

User
Posted 22 Feb 2022 at 10:29
Thank you so much for responding!

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!

User
Posted 23 Feb 2022 at 08:27

Tina,

it's not possible to answer some of your questions until there's more information from the oncologist but with a Gleason score of 7 and a psa below 7 there is every reason to anticipate a good outcome.

Urinary incontinence is unlikely to be a debilitating problem in the long term with radio therapy and hormone therapy.

A spacer like Spaceoar might be recommended but in most cases it's not needed. While they can help in some situations, they aren't without risk. Don't feel you have to spend vast amounts of money for this and only choose it if it seems to be absolutely necessary.

Fiducial markers, like gold seeds, are a help with locating the prostate accurately for each round of radiotherapy. It's probably a good sign if your oncologist recommends these.

RT is definitely tiring, though once your dad starts on his treatment the stress of not knowing what the future might bring changes into managing life as it is. More relevant will probably be the fact that he'll have to deal with hormone therapy for some time after the RT. Loss of libido, fatigue, hot sweats and mood swings are characteristic changes. They inevitably vary from person to person, though with time they can be managed ok.

For comparison, I'm 74, had a Gleason 9 with mets in nearby glands. Had RT followed by HT and am now about a year past RT and half way through HT. I'll be glad to get out the other end of this process but my ongoing psa levels have been extremely low and the future looks good.

I suggest you start your own thread, even though I didn't follow my own advice.

 

Jules

User
Posted 23 Feb 2022 at 09:46
Glad the injection helped - an old workmate of mine, had a similar problem with his arm joint - same treatment as your dad's worked for him, too.
User
Posted 23 Feb 2022 at 12:19

Dad is 100% able to walk now, without a stick! Unbelievable. Soo pleased. The injection defo worked. The Consultant thinks COVID infection caused inflammation which caused the edema. Time will tell if it returns. Hopefully not. 

Dad didn't suffer much to be honest from RT or HT. He only had 6 months of HT in total. Frequency of going loo is less now. He gets up less at night. Hot flushes are there but since he has stopped using an electric fan, he feels they are more manageable. Evening primrose helps at times.

Sounds as if your dad is active too, I'm sure he will be fine. My dad didn't let the tiredness from RT get to him, he carried on walking etc.

What did the Onco say?

User
Posted 08 Mar 2022 at 22:04

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.

User
Posted 09 Mar 2022 at 19:07

Hi SR12, glad the prostate cancer is under control, and most other health problems are doing ok. You won't be too surprised to hear that I can't see any point in worrying about another set of test results, and that I still advocate skydiving as a good way to avoid a long slow boring death.

Dave

User
Posted 09 Mar 2022 at 20:18

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? 

User
Posted 09 Mar 2022 at 20:34

I'm doing very well thanks. I know winter isn't quite over but looking forward to a summer hopefully without COVID restrictions. The oncologist is bored of seeing me and told me to come back in a year. I like it when oncologists aren't interested in you, it is so much better than when they are interested in you.

Dave

User
Posted 09 Mar 2022 at 21:57

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!

User
Posted 11 Mar 2022 at 10:25

No just a war instead....

I think the Covid restrictions, were preferable 😅

User
Posted 11 Mar 2022 at 21:30

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. 

User
Posted 14 Mar 2022 at 13:35

Hello! Update.. still no news so i checked patient access. Letter uploaded from endoscopy department which says "indefinite for dysplasia" again but this time in 2 biopsies. So its going to MDT for management plan then a discussion with dad. At least its not cancer. My own feeling is he drinks way too much lemon juice which is acid and not good for GERD. We yet are to hear from them though. 

I found out about dads prostate cancer from his patient access record the morning of when they told us. Terrible that they upload documents before breaking news to patients...

User
Posted 12 Apr 2022 at 22:42

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!

User
Posted 14 Apr 2022 at 18:33

Originally Posted by: Online Community Member

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!

It does sound, like your Dad is well on the road back to "Normality" Whatever that is 😆

User
Posted 14 Apr 2022 at 22:35

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

User
Posted 15 Apr 2022 at 19:06

Originally Posted by: Online Community Member

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

Thankfully, not too bad - just so glad I got the majority of my treatment done, before Covid struck us.

Now we have the loons, behind the new Iron curtain - who want more land. It makes you sick!

User
Posted 15 Apr 2022 at 21:43

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

User
Posted 16 Apr 2022 at 17:41

Originally Posted by: Online Community Member

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

Yes it's lovely here in the west of England - we went to a Car boot fair today - bought an old laptop, a table to put it on, some memory sticks, a few other odds & bits, & still had change out of £10...!

User
Posted 17 Apr 2022 at 22:41

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

 
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