Dad just diagnosed. Need advice

Hiya all,

Hope you are all keeping well.

Sorry, i have not been in touch. Work has been so busy. No time to do anything else!

Dad has been keeping well so far. He has had 2 x 4 weekly Zoladex. The next implant will be a 12 weekly one.

He had the first telephone consultation with the Oncologist today (I can't remember her name) from Mount Vernon hospital. She seemed very rused. We didn't feel comfortable in asking her questions as much as we would like to have. She said that after the 12 weekly Zoladex implant, my dad would only need another one x 4 weekly and that will be it. No other hormone therapy. Not even after radiotherapy. This really surprised us as from everything i have read and people i have spoken to, all say that it is usually a total of 2 years for hormone therapy.

She said the Radiotherapy should start sometime in October. She will be sending a letter for the planning session. The Radiotherapy will be 20 sessions.

So my question is about the hormone therapy. Is 6 months enough? I asked her and she said there was no need to have anymore and didn't really answer my question!

I have a feeling these medical people don't like it when we ask questions but i am just so surprised and a bit worried as we scared about the reaccurance.. has anyone else had or heard of just 6 months of hormone therapy?

On another note, dad finds that taking evening primrose oil and sage (twice a day) has really helped with the hot flushes. He also does a lot of resistance exercises using bands and weights daily and walks 2 times a day ( 2 hrs in total). So far he has been OK.

Would really appreciate some advice on the hormone therapy.

Keep well and keep smiling!

Hi SR12, good to hear from you again. I'm glad your dad is tolerating the HT well, and the evening primrose and sage tablets are working. I'm also really glad the RT is getting planned and you now have a timescale for it. It is reassuring when you know the treatment is on its way.

The RT will hopefully be fairly none eventful. I sort of found it a bit surprising that having x-rays blasted at you for about two minutes most days for a month could kill cancer, but apparently it can.

The HT prior to RT will have weakened the cancer cells and will make the RT more effective. HT post RT is very common, but no HT is pleasant, so if it can be avoided all the better. 

I think if you asked people on this forum if they think they are cured of cancer or it has merely been put in remission and will return one day? Most would say they are in remission and they are just hoping the cancer has been delayed by a few years, and people are hoping that few years is perhaps twenty years or even longer. 

Your dad is 77 if the cancer can be put back ten years that will take him to 87, maybe with an extra two years of HT they could push the cancer back till he is 97. But he loses some Quality of Life and has increased risk of osteoporosis and other problems from no testosterone, all whilst he is under 80. Remember he may get run over by a bus at 85 so pushing the cancer back from 87 to 97 will be pointless. 

So I think I agree with Lyn, trust the onco, it may not be the right choice for a fifty year old, but it probably is for a 77 year old. 

Sorry just remembered something else. I asked if dad needed a PSA test before radiotherapy. She said no. Only need to do one 3 months after radiotherapy and then every 3 months after that. Does this seem normal?

I guess it makes sense as he needs Radiotherapy anyway but would be nice to have a PSA to compare with?

Unless he is told by the RT team or has already been advised by the hospital, don't assume he needs to change to a low fibre diet - it applies to most but not all men. If unsure, ask for a diet sheet or a meeting with the dietician.

Plus the 50% is an approximation, not an exact science. The actual PSA reading is an exact science.

If that was the case, he wouldn't be having any treatment at all - the highest PSA we have seen on here at diagnosis was 13,000 

Hello all,

Hope people are keeping well.

Today was my dad's planning session at Mount Vernon. He has been told that his radiotherapy will be for the prostate only. He needs an empty bladder and bowel. They didn't tell us this before we went. So they couldn't do the CT scan as bowel was not empty. They gave him something to help him go, which did help but they still couldn't do the CT scan as there was too much wind.

He generally suffers from a lot of wind because he eats a lot of raw veg and a lot of fruit. They have asked him to cut it all down.

Rebooked for this Thursday. He will cut out the above food, so hopefully the scan can happen.

This is going to be tough for him as he loves his diet. He said he no longer wants the Radiotherapy and is giving up as he doesn't want to wait around in the hospital until his bladder is empty. The staff were fab and told him it is normal and just try to time it with food so he is empty before treatment.

Is there any advice on this at all? He has done so well up until now. Really need him to be positive for the RT.

The Macmillan nurse also recommended that he gets his PSA done before RT. Results today.. 0.18. is that good? He has only been on HT for 2 months so far.

I'm feeling a bit disheartened today.

Thank you Lyn.

He generally suffers from gas and he feels it has got worse since starting HT. He has stopped fruit/veg from yesterday. He drinks only de-caf drinks. So fingers crossed.

If the planning scan is not successful on Thursday then they said they would need to speak to the Onco. I am so worried that RT could be delayed or not happen at all?? Am I just over thinking?

Good news - planning CT scan was successful today! Dad stopped all fruit/veg since Monday. He had no wind today. Was in and out the appointment in 10mins. They have asked him to carry on with this diet now until the end of radiotherapy, probably even longer, depending on side effects.

RT due to start on 15th October. 20 fractions.

Shall keep you all posted.

Sage/evening primrose has stopped all hot flushes. I think the cooler weather also helps.

Thanks again for the support.

Hi SR12,

Nice to hear from you. How many RT sessions is your dad having? (EDIT: just seen your previous post 20 fractions) It's nice to know active treatment has started. I only had 15 sessions as most of my radiation was delivered via brachy, but it is good to start counting those sessions down, before long he'll be halfway through. Once started those radiation doses have to hit that cancer every day (except weekends, when the cancer cells, I presume, go away and play golf; ready to be back on Monday to start all over again) so hopefully no covid interruptions to his treatment.

Best wishes

Edited by member 19 Oct 2020 at 23:40  | Reason: Not specified

I had my RT done in Cambridge last year.

I agree with that. Though I never really got used to holding the amount of fluid...
I told the Nurses "Don't stand in the way, following the fraction!" They were very good. 😄

So today marks the last day of dads radiotherapy! 20 sessions done and dusted. I have to say time did go very quick. One of us went with him daily. The wait in the car wasn't too long. Luckily he controlled his diet really well so he didn't have any wind or any need to take meds which would make him empty his bowel.  Once he was called in for treatment, he was in and out in 20mins maximum. 

They have been pleased with how smoothly it all went. He will receive a follow up call in about 3 weeks time from the radiologist. 

He has a telephone consultation with the Onco in February. He needs to have his PSA test done 2 weeks before so the Onco can read this and let us know how well the treatment has worked. I do remember a few people mentioned on here that the first PSA test maybe higher to due radiotherapy causing the PSA to jump up. Is that correct?

He has the last (we hope!) 4 weekly Zoladex implant mid December. After that his initial treatment will end and he will be monitored from then on.

Side effects wise, he has done really well up until now. We are aware that side effects could start at a later date. The only side effects he has is getting up nearly every hour at night to wee. He has had increased bowel movements too. Some days he is more tired than others. However, he has kept up with all the walking and the resistance exercises. He has also lost a bit of weight which the radiologist thinks is down to the diet and exercise. 

The hot flushes are still there but he only gets a few in the mornings and they literally last a few seconds. He is still on sage and evening primrose x 2 daily.

So far the treatment really was not as bad as we thought and we hope he doesn't get any major side effects moving forward. We also hope the cancer is in remission.. time will tell i guess.

We would be absolutely lost without this group. I learnt sooo much and got so many tips which i passed on to dad.

I will post again with his PSA results.. what happens after all this now? Will it just be blood tests on going? Any scans? 

Any post treatment advice would be fab.

Hope everyone is keeping well. Thanks again for all the support. Massively appreciated.

Thank you Lyn.

Yes we did question him only having 6 months of HT. I did also post it on here. We were told from the Onco that because his cancer was confined to the prostate, he would only require 6 months of HT in total. We even got a letter confirming this. I spoke to the McMillan nurses and also Prostate cancer nurses who said it is not unheard of. I hope the correct decision re his treatment plan has been made. The Onco at Mount Vernon hospital does seem to be reputable. 

Thanks for the information for post treatment stuff. I have never understood what was meant by nadir but now i see it means the lowest reading. 

Really hoping the Radiotherapy has worked. Does RT ever fail?

Onco says I'm on track for a complete recovery - I hope he is right.

They are rather short, many recruited by track & trace - more money there, I guess?

Hello,

I thought i would check in and give an update re dad.

It has nearly been a month now since the end of RT. He is generally well. The main side effects so far have been more than usual bowl movements and getting up nearly every hour at night to empty bladder. Getting up every hour is causing him lack of sleep so he is getting a bit down about this. Will this improve in time?

He has his last Zoladex implant next Thursday. We were told his next PSA test would be in February when he has the telephone consultation with the oncologist. We were told this is because sometimes RT can cause the PSA to raise, so it is best to wait a few months.

However, today we got a text from the radiotherapy department regarding a follow up telephone appointment for next week and to ensure he has PSA done before. I remember asking them about this on the last day of his RT and they told us to wait till February. Any idea if this is normal?

I am not sure if the nurse will have any appointments to fit dad in. I will call the Radiotherapy department tomorrow and get some clarity.

He is managing hot flushes with evening primrose oil and sage. Definitely helps.

Hope everyone is well and looking forward to the holidays.

Haha! I defo will remind dad of that! I think he is just tired from lack of sleep as he is having to go loo so much. Hopefully in time it will improve.

He has the oncologist apt in February. I was just told my the surgery to book his bloods in early as there is a backlog of apts! I hope he is able to get an appointment! Such hassles.

Enjoy the xmas break and stay safe.

One thing I've learnt the last few years, after two operations for different cancers, is that it's best to ask if you have any concerns at all.

Yes, it is very common, it will settle with time - things will be a bit inflamed down there! I had it & I understand, it is unusual for it NOT to occur. 

Bleeding is common after radiotherapy, definitely worth mentioning I think.

Hello! 

Quick update. Dad had the last (hopefully) Zoladex implant yesterday. 

That is a total of 6 months of HT treatment.

Onco apt is in Feb. Have booked PSA test for mid January. 

He has not experienced any more blood when he empties bowels. Still getting up every hour at night to empty bladder, which is really getting him down now.

He will  mention all this to the radiologist when they call next week.

So now i guess it is all about PSA tests and observations. Hopefully treatment has worked and we can have some positive times ahead.

I will post updates on PSA results and any other side effects etc.

I am so grateful to have found this group and thank you so much for all the support and advice.

Have a good xmas break and a better 2021.. we hope!

Hi Dave,

Nice to hear from you.

Dad has coped better than what we imagined.. for now. We are aware he could have late onset of side effects.

We have a bottle like this but he refuses to use it! Just hope the night time wee's get less.

Hope you are keeping well. I have been reading some of your posts.

Take care and stay safe