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Dad just diagnosed. Need advice

User
Posted 12 Nov 2020 at 00:39

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?

User
Posted 12 Nov 2020 at 01:48
Any cancer treatment can fail - if he gets to 5 years without the PSA rising above 2.0 + nadir, he will be moving in the right direction. Full remission is usually considered to be 10 years without a recurrence.

My husband only had 6 months of HT, if that.

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

User
Posted 12 Nov 2020 at 08:15
Well done Dad. I'm 6 months after a year + of Hormone therapy, still some aches & pains - PSA results very low after RT a year ago.

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

User
Posted 12 Nov 2020 at 09:46

That is amazing Bob! Really pleased and i know you will be absolutely fine!

Thanks Lyn. Dad is 77. I will be sooo pleased if he gets to 87! 

So i guess now is all about PSA checks for the next 5 yrs. Now i understand about PSA anxiety!

This journey has made me appreciate one day at a time and made me realise non of us are immune. I always used to think things happen to "other" people. Until it happens to you.

I owe a lot to this group. Thank you so much.

Fingers crossed for first PSA check in February!

User
Posted 13 Nov 2020 at 09:07
I've got my next test at the beginning of Dec. If I can find a phlebotomist (Thanks online spelling!)

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

User
Posted 13 Nov 2020 at 19:14

Have track n trace taken all the GP staff?! Dad just goes to the nurse? 

I have everything crossed for you Bob. It will be fine, i know it!

User
Posted 08 Dec 2020 at 22:10

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.

 

 

User
Posted 10 Dec 2020 at 10:10

Originally Posted by: Online Community Member

Have track n trace taken all the GP staff?! Dad just goes to the nurse? 

I have everything crossed for you Bob. It will be fine, i know it!

You were correct 😅

I expect the piddle problems etc, will improve with time - mine did.
I'm pretty variable myself, sometimes I can go from Midnight to 5, another time somewhat, less - but it is not a major problem - there is no piddling, when your dead...😪

User
Posted 10 Dec 2020 at 22:23

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.

User
Posted 11 Dec 2020 at 23:30

Hello again.

Today my dad mentioned that he had some bleeding when he had bowel movements. He said it happened yesterday too.

It is exactly one month today since he finished RT.

I have read that bleeding can happen. He said it was a small amount.

He has an appointment with the Radiotherapy nurse on the 22nd so he will mention it. Should he be mentioning it before? 

Is this common?

Not sure if leaving it till the 22nd is too long?

Just after some advice 

Thank you!

User
Posted 11 Dec 2020 at 23:37
Not had RT, but I have relatively mild colitis. From what I've read RT can cause similar problems. If it's a small amount of blood, I would say it's not a big deal, but why not speak to someone? It cannot do any harm.

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.

User
Posted 11 Dec 2020 at 23:46

Thank you Peter. Good advice. 

I will call Macmillan on Monday. They are usually really good.

Keep well.

User
Posted 12 Dec 2020 at 07:51

Originally Posted by: Online Community Member

Hello again.

Today my dad mentioned that he had some bleeding when he had bowel movements. He said it happened yesterday too.

It is exactly one month today since he finished RT.

I have read that bleeding can happen. He said it was a small amount.

He has an appointment with the Radiotherapy nurse on the 22nd so he will mention it. Should he be mentioning it before? 

Is this common?

Not sure if leaving it till the 22nd is too long?

Just after some advice 

Thank you!

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. 

User
Posted 12 Dec 2020 at 09:39

It's extremely common.

Keep things like this recorded in a diary, so you can refer back and say when it started, how often, and how severe, when you have your next appointment.

If the bleeding becomes excessive or continuous (risk of anemia), then you will need to get medical help sooner.

User
Posted 12 Dec 2020 at 16:05

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

Ido4

User
Posted 12 Dec 2020 at 22:55

Thank you so much for the reassurance.

I am keeping a book and noting all side effects and treatment dates, follow up calls and PSA test results. I got that advice from a post i read on here when dad was being checked for cancer.  This site has really helped and given me so much knowledge.

Today he didn't have any blood, but perhaps it is random. I will still call Macmillan on Monday and tell them.

He is feeling really tired today. Seems the RT side effects may be kicking in...

He has his final HT implant on Thursday. 

Fingers crossed all will be okay!

User
Posted 18 Dec 2020 at 23:02

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!

User
Posted 18 Dec 2020 at 23:32

Hi SR12, 

Glad to hear treatment is over. 6 months of HT won't have done much harm with bone loss and muscle loss. I hope cancer is cured.

Getting up every  hour would be very tiring. A bottle like this next to the bed is a good idea

https://www.ageukincontinence.co.uk/adult-male-urinal-bottle-1000ml.html

It might not be to everyone's taste, but not actually having to get up and walk to the toilet can make it a bit easier to get some rest during the night. 

If you can't be bothered ordering off line, then just go to supermarket and buy an "innocent smoothie" the bottle is almost exactly what you want, and it comes with a free healthy drink.

Dave

User
Posted 19 Dec 2020 at 12:47

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

User
Posted 20 Dec 2020 at 18:30

I find a nice long, hot bath, of Magnesium salts, Dead sea salts, (Home bargains) Aldi bath blue & some white almond milk cream bath - works wonders to help you sleep & less likelihood of frequent night time widdles.

Edited by member 20 Dec 2020 at 18:40  | Reason: Not specified

 
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