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User
Posted 31 Aug 2021 at 19:51

Hi everyone.

My Dad has very recently been diagnosed, I have been reading up on the forum but feel a bit overwhelmed with information and I'm a bit scared if I'm honest. I want to support him as best I can, and be as informed as possible, so if anybody can reply, I would be very grateful. Sorry if I'm repeating other people's situations/questions but here goes...

Dad has Gleason 4+5=9, PSA 12,T2NOMO? They say it's aggressive but not spread to bones or lymphHe is on meds for high BP,cholesterol and Steroids (prednisalone) for Myasthenia Gravis. He is 75. Aside from this he is overweight (absolutely loves food) and is generally fatigued.

His treatment, which he starts tomorrow is BICALUTAMIDE for 1 month, followed by an injection ( no name of drug) every month from then on. Then BRACHYTHERAPY and radiation sessions. 

He is very worried about the HT side effects, especially as he is already on medication. When reading the info the hospital gave him I completely understand.

I personally am worried that the Brachytherapy means he will be under GA for 3 hours!! Also we are both concerned about the radiation damaging his other organs. It sounds so scary! 

Anything anybody can say to reassure him (and me) I would be eternally grateful x

 

 

 

User
Posted 31 Aug 2021 at 19:51

Hi everyone.

My Dad has very recently been diagnosed, I have been reading up on the forum but feel a bit overwhelmed with information and I'm a bit scared if I'm honest. I want to support him as best I can, and be as informed as possible, so if anybody can reply, I would be very grateful. Sorry if I'm repeating other people's situations/questions but here goes...

Dad has Gleason 4+5=9, PSA 12,T2NOMO? They say it's aggressive but not spread to bones or lymphHe is on meds for high BP,cholesterol and Steroids (prednisalone) for Myasthenia Gravis. He is 75. Aside from this he is overweight (absolutely loves food) and is generally fatigued.

His treatment, which he starts tomorrow is BICALUTAMIDE for 1 month, followed by an injection ( no name of drug) every month from then on. Then BRACHYTHERAPY and radiation sessions. 

He is very worried about the HT side effects, especially as he is already on medication. When reading the info the hospital gave him I completely understand.

I personally am worried that the Brachytherapy means he will be under GA for 3 hours!! Also we are both concerned about the radiation damaging his other organs. It sounds so scary! 

Anything anybody can say to reassure him (and me) I would be eternally grateful x

 

 

 

User
Posted 31 Aug 2021 at 20:55

Hi Kelly,

You will find loads of info at this part of the website. You don't have to buy anything they are all available to be downloaded as a pdf

https://shop.prostatecanceruk.org/our-publications

Your dad's diagnosis is a little bit better than my own, and I am planning on being around for a good few years yet. G9(4+5) is higher than anyone would want but all his other figures are reasonable. Not too sure why he is fatigued the cancer is unlikely to be the cause, he hasn't started treatment yet so that will not cause fatigue yet. To be fair at 75 a bit of fatigue is probably normal.

The injection of the hormone each month is not a big problem you may find you can get this changed to a three monthly injection which is more convenient.

Do you know if the brachytherapy is LDR or HDR? If HDR, it is the same treatment regime as I had. I agree three hours of GA is better with a more normal BMI, my BMI is about 28 so I was overweight. Radiation damage to other organs is not likely to be of concern, some damage can occur but I think it will be minimal.

Until he is on HT he won't know if the side effects are troublesome, I am assuming he will be on HT for about two years, I found it bareable.

Good luck keep us informed. Post any other questions.

 

 

 

Dave

User
Posted 31 Aug 2021 at 23:51
Some men who tend to retain urine are put on Tamsulosin Hydrochloride (which comes under various brand names). I have been on this for over 20 years. If Dad is not prescribed this already, he could ask whether he might be suitable for it.
Barry
User
Posted 31 Aug 2021 at 23:59

Hi Kelly,

At the bottom of this thread

https://community.prostatecanceruk.org/posts/t22995-Escaping-the-Catheter

You will find a post by me relating to Clean Intermittent Self Catheterisation ( CISC). As you can tell, compared to a permanent catheter I much prefer CISC. Of course just being able to pee normally is what you really want but CISC is the second choice.

I had HDR but we have other members who had LDR so when you know the plan for your dad we can give you support. As Lyn says this is a curative treatment path. The annoying thing with prostate cancer is that it is impossible to know if the cure has worked, but even if it does not work, it is quite realistic to expect the treatment to set the disease back by at least five years and possibly 15 or 20 years and if your lucky forever. 

Dave

User
Posted 09 Oct 2021 at 19:26

HT often does cause fatigue. Would he be up for doing a daily stroll around the block, increasing this as he gets fitter? Exercise is the best antidote to fatigue induced by HT.

Also, if you know you're going to do something that makes you tired, having a rest beforehand can help.

User
Posted 10 Oct 2021 at 00:40

The PCUK nurses will have lots of ideas on how to cope with the fatigue - you can call them on the number at the top of the page. If he is willing to go swimming, this is very good for men with HT induced fatigue as it is low impact. We used to have a member called Al who was in a wheelchair until he took up swimming!

Try to reassure dad that it is a known side effect of the hormones and nothing to be scared about. The nurses aren't going to give him scary bad news - he gas his diagnosis, the cancer is entirely treatable, that isn't going to suddenly change.

Edited by member 10 Oct 2021 at 00:41  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 31 Aug 2021 at 20:55

Hi Kelly,

You will find loads of info at this part of the website. You don't have to buy anything they are all available to be downloaded as a pdf

https://shop.prostatecanceruk.org/our-publications

Your dad's diagnosis is a little bit better than my own, and I am planning on being around for a good few years yet. G9(4+5) is higher than anyone would want but all his other figures are reasonable. Not too sure why he is fatigued the cancer is unlikely to be the cause, he hasn't started treatment yet so that will not cause fatigue yet. To be fair at 75 a bit of fatigue is probably normal.

The injection of the hormone each month is not a big problem you may find you can get this changed to a three monthly injection which is more convenient.

Do you know if the brachytherapy is LDR or HDR? If HDR, it is the same treatment regime as I had. I agree three hours of GA is better with a more normal BMI, my BMI is about 28 so I was overweight. Radiation damage to other organs is not likely to be of concern, some damage can occur but I think it will be minimal.

Until he is on HT he won't know if the side effects are troublesome, I am assuming he will be on HT for about two years, I found it bareable.

Good luck keep us informed. Post any other questions.

 

 

 

Dave

User
Posted 31 Aug 2021 at 20:56
Your dad's cancer is very treatable and brachytherapy is generally tolerated very well with fewer side effects than some of the other treatments. They wouldn't give him an anaesthetic if they didn't think he was fit enough - there will probably be a pre-op assessment beforehand to check his fitness. There are two kinds of brachytherapy - high dose brachy means a GA of 1-2 hours at most whereas low dose brachy is sometimes given with local / epidural rather than general anaesthetic.

The hormone therapy treatment leaflet is quite scary because it lists all possible side effects but most men live good active lives on HT so there is nothing to be scared about and he might only have the HT injections for 18 - 36 months. About 75% of men your dad's age have prostate cancer. The doctors have put your dad on a curative treatment plan so hopefully he will be around for many, many years unless one of his other medical issues gets him first.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Aug 2021 at 22:14
Thank you both for your prompt replies! It feels great just to read that you are there and understand 😊 I don't know if it's LDR or HDR yet, he had his appt today to discuss and was in a bit of a tizz. I think I will find out more information when he chats to the consultant next week? One more question, he is retaining wee in his bladder due to his enlarged prostate, around a pint isn't coming out..they told him today he will be seeing a nurse very soon to demo self catheterisation, is this as grim as it sounds?!

Thank you once again x

User
Posted 31 Aug 2021 at 23:51
Some men who tend to retain urine are put on Tamsulosin Hydrochloride (which comes under various brand names). I have been on this for over 20 years. If Dad is not prescribed this already, he could ask whether he might be suitable for it.
Barry
User
Posted 31 Aug 2021 at 23:59

Hi Kelly,

At the bottom of this thread

https://community.prostatecanceruk.org/posts/t22995-Escaping-the-Catheter

You will find a post by me relating to Clean Intermittent Self Catheterisation ( CISC). As you can tell, compared to a permanent catheter I much prefer CISC. Of course just being able to pee normally is what you really want but CISC is the second choice.

I had HDR but we have other members who had LDR so when you know the plan for your dad we can give you support. As Lyn says this is a curative treatment path. The annoying thing with prostate cancer is that it is impossible to know if the cure has worked, but even if it does not work, it is quite realistic to expect the treatment to set the disease back by at least five years and possibly 15 or 20 years and if your lucky forever. 

Dave

User
Posted 01 Sep 2021 at 08:03
Slightly off field comment from me, you say your dad is overweight? The single biggest thing he could do to improve his quality (and quantity) of life in is to eat healthy and shed some excess kilos.

User
Posted 01 Sep 2021 at 10:35

Originally Posted by: Online Community Member
Some men who tend to retain urine are put on Tamsulosin Hydrochloride (which comes under various brand names). I have been on this for over 20 years. If Dad is not prescribed this already, he could ask whether he might be suitable for it.

Some men are on a combination of Tamulosin and also Finasteride.

Cheers, John.

User
Posted 01 Sep 2021 at 20:10

Yeah, I know! I have been pecking his head for years to do this!! It's very difficult as I suppose he is an emotional eater, and the moment he cuts out naughties, he is so miserable. I guess it's an addiction. Thank you for mentioning it, I will tread carefully and try again to get him healthier.

User
Posted 01 Sep 2021 at 20:18
Thank you for the link re CISC Dave, I much appreciate all your input.

I will investigate the wee drugs with Dad too, I'm so grateful to Barry and John also.

It's been his first day of HT today, so it's the first step towards getting better I hope 🤞🏻

Good luck everybody with your journey, I will keep you posted of Dad's, I feel so much better that I can ask questions without feeling like a dumbo!

Kindest regards

Kelly xx

User
Posted 09 Oct 2021 at 17:28

Hi everyone 👋 

I hope you are all keeping positive and well?

Just a little update..

Dad is on the drugs for his urine retention but has to CISC also, this is due to his left kidney struggling with the back flow. He is coping really well with it, the upbeat vibe I gave him from your article really helped Dave, thank you! He collects between 200 and 500 mls each evening. He was hoping the amount would gradually reduce as the nurse suggested, but is feeling a bit despondent that it does fluctuate. I have told him it's a long game but is this right??

The HT seems to be fairly uneventful so far (I'm touching wood!!) but can I just ask again..he is very fatigued, needing a rest most days (actually going to bed and sleeping) and after exertion. I know he is a bit old and has other issues going on (as Lyn pointed out, these may catch up with him first 😔) but I think both he and Mum are a little worried as more, and worse, is yet to come!! 

I would really appreciate your thoughts....he is reluctant to ask his cancer nurse incase she says something he doesn't want to hear I think!! 

Many heartfelt thanks in advance x

 

 

User
Posted 09 Oct 2021 at 19:26

HT often does cause fatigue. Would he be up for doing a daily stroll around the block, increasing this as he gets fitter? Exercise is the best antidote to fatigue induced by HT.

Also, if you know you're going to do something that makes you tired, having a rest beforehand can help.

User
Posted 09 Oct 2021 at 20:07

Thank you very much Andy. I will suggest it to him...good idea to build up bit by bit if he can.

User
Posted 10 Oct 2021 at 00:40

The PCUK nurses will have lots of ideas on how to cope with the fatigue - you can call them on the number at the top of the page. If he is willing to go swimming, this is very good for men with HT induced fatigue as it is low impact. We used to have a member called Al who was in a wheelchair until he took up swimming!

Try to reassure dad that it is a known side effect of the hormones and nothing to be scared about. The nurses aren't going to give him scary bad news - he gas his diagnosis, the cancer is entirely treatable, that isn't going to suddenly change.

Edited by member 10 Oct 2021 at 00:41  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Oct 2021 at 22:09

Thanks Lyn! Good idea with the swimming.

I will encourage him to speak to the PCUK nurses. I suppose it does seem silly to be worried about chatting to them! You are absolutely right 👍🏻

Thanks again 🙂

User
Posted 10 Oct 2021 at 22:58
Just to be clear, the PCUK nurses are different to his allocated nurse. You said he was worried about asking his nurse, who used probably based in the urology department at the hospital.

The PCUK nurses work for the charity that runs this forum, and they offer a helpline. They won't have access to his medical records.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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