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Dad just diagnosed. Need advice

User
Posted 02 May 2021 at 13:04

Hi, it is decisions time for me, I am gleason 7 possible t3 with psa of 3.4,I am 74 years of age quite fit, I leaned towards hormone and rt, and I am due to see oncologist next Thursday, I met the urology nurse last week and she told me because of a split in the prostrate it is I am likely to be on hormones for 3 years, I have been bone scanned and body scanned along with mri and no sign of spread, I have observed quite a lot of people have been on hormones for three years, I can not seem to find out why people elected to go that route when removal only takes about 16 weeks out of your life is it a preference or medically requirement, i have to take hormones for 3 months if I choose surgery as waiting list is 10 weeks, I would welcome comments on these options, thanks 

User
Posted 02 May 2021 at 15:16
Tchpl, your post has absolutely nothing to do with the topic of this conversation. You're much more likely to get help if you start your own discussion thread rather than jumping in to someone else's!

Best wishes,

Chris

User
Posted 02 May 2021 at 15:41

Thanks Chris new to this site not sure how to start a new topic

User
Posted 02 May 2021 at 17:34

Originally Posted by: Online Community Member

Thanks Chris new to this site not sure how to start a new topic

Go the the community home page and click the "Start a New Conversation" button. 

Best wishes,

Chris

 

User
Posted 31 May 2021 at 11:58

Hello

Hope everyone is well and enjoying the sunshine!

I just wondered if RT and HT can cause a delay tiredness? Dad was OK during the treatment, still carrying on with normal activities. However, the past 2 weeks or so he has been extremely tired. Sleeps for longer and isnt going for walks. When he does go, he has to sit on the bench for a while.

He is also suffering from a bad cough (not covid as we got him tested). He has a chest xray next Monday.

Luckily, his endoscopy appointment for Barrett's esophagus has also come through for July.

He is convinced he has throat/chest cancer because the cough is really bad and he is tired.

Difficult to say until tests are done, however i just wondered if HT and RT tiredness can come on months after treatment?

He still has blood in stools too which Macmillan are not too concerned about but will test him for all that in August, when his next PSA is due.

Thank you in advance!

 

 

 

 

User
Posted 05 Jun 2021 at 11:55

I think the lack of responses to this question can be taken as a no. I do have times when I feel more tired than I used to, maybe it's just the difference between being 53 when this all started and 56 as I am now. I'm glad your dad is having tests, but as you know my attitude is don't worry about it or assume the worst until you have a diagnosis to prove there is a problem. 

Dave

User
Posted 06 Jun 2021 at 00:18

Good to hear from you Dave. Hope all OK your end.

Dad's energy levels are a bit all over the place. Sometimes he is shattered. Other times he seems to be OK.

GP gave him some meds for cough as they thought it could be his asthma. Its made a slight difference. He is also getting some breathlessness now and then.

Chest scan on Monday and endoscopy end of July. 

I am trying not to stress and wait for results.. its really difficult as i feel like we are back to investigation stages, which is what was happening exactly a year ago with his prostate.. fingers crossed.

Will post with results.

Take care.

User
Posted 08 Jun 2021 at 12:29

Originally Posted by: Online Community Member

Good to hear from you Dave. Hope all OK your end.

Dad's energy levels are a bit all over the place. Sometimes he is shattered. Other times he seems to be OK.

GP gave him some meds for cough as they thought it could be his asthma. Its made a slight difference. He is also getting some breathlessness now and then.

Chest scan on Monday and endoscopy end of July. 

I am trying not to stress and wait for results.. its really difficult as i feel like we are back to investigation stages, which is what was happening exactly a year ago with his prostate.. fingers crossed.

Will post with results.

Take care.

Is your dad still on HT? That can upset all sorts of things! I had my last 3 monthly in Feb, 2020 - just before lockdowns started! I'm only now getting back to something like normal, Strength & aches & pains etc.

I guess the Testorone, is waking up again after a long sleep too !! I like a nap late afternoon, but that may be an age thing!

User
Posted 08 Jun 2021 at 22:48

Hey Bob!

Good to hear from you.

Dad had last HT in December 2020. I think it may be the side effects. He naps in the afternoon if he is home. This week, so far, has been OK.

The chest x-ray results say N/A. I assume this means no further action. I have sent a message to the GP to confirm. Really hope its clear. His cough has really improved. I suspect it was the asthma playing up.

He is still bleeding from bowels. That will be checked in August, together with next PSA test.

I know its a common side effect, hoping it is just that.

Hope you are keeping well and enjoying the sunshine!

 

User
Posted 10 Jun 2021 at 13:28

Originally Posted by: Online Community Member

Hey Bob!

Good to hear from you.

Dad had last HT in December 2020. I think it may be the side effects. He naps in the afternoon if he is home. This week, so far, has been OK.

The chest x-ray results say N/A. I assume this means no further action. I have sent a message to the GP to confirm. Really hope its clear. His cough has really improved. I suspect it was the asthma playing up.

He is still bleeding from bowels. That will be checked in August, together with next PSA test.

I know its a common side effect, hoping it is just that.

Hope you are keeping well and enjoying the sunshine!

 

Cloudy today, but I have been in the sun - back to trousers, today!

 Assuming Dad's last injection, was a 3 month's worth one?, he would only be starting to get it out of his system by the end of March. So he has a long way to go I'm afraid - In Nov, he may be feeling a bit more himself, but from my experience, it takes over a year to become more fully "Normal" 

Is he on a daily Tadalafil ?  - it does help reduce shrinkage & puts more blood in the area it's needed.

If so, & if he gets Heartburn symptons, best cut back the dose - I now have half a tablet, every other day.

Heartburn seems to be one of the unsung symptoms, some get with HT - or it may be the Tadalafil that causes it.

Thankfully, I don't seem to get it now.

All the best to you both. Bob

User
Posted 10 Jun 2021 at 23:06

Hey Bob!

Was a very humid day..but glad no rain!

The last HT in December was 4 weeks. He had 6 months HT in total. 

He said the hot flushes are getting worse, particularly at night. Could also be the weather.

No he isnt on Tadalafil. Can't remember if he tried it but not on anything at the moment.

The cough has practically gone. Just a bit worried about the bleeding from bowels. He said its a few times a week now.

Hopefully colonoscopy in August will rule out anything serious.

Take care.

User
Posted 11 Jun 2021 at 00:06

My husband was left with permanent hot flushes - his HT was for 6 months and finished nearly 9 years ago

Edited by member 11 Jun 2021 at 00:07  | Reason: Not specified

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

User
Posted 11 Jun 2021 at 09:28

Hey Lyn,

I remember reading about some permanent side effects and hot flushes was one of them. Must be really difficult in the summer.

Dad didn't get them initially.. the evening primrose and sage helped.. but recently they are getting worse at night. He has about 5 held hand fans around the house! Sometimes one in each hand going at the same time lol! 

 

User
Posted 11 Jun 2021 at 12:37

Originally Posted by: Online Community Member

Hey Lyn,

I remember reading about some permanent side effects and hot flushes was one of them. Must be really difficult in the summer.

Dad didn't get them initially.. the evening primrose and sage helped.. but recently they are getting worse at night. He has about 5 held hand fans around the house! Sometimes one in each hand going at the same time lol! 

 

I think is helps us men, understand what many ladies have to put up with over many years! Hot sweats, that is.

I just get some Bum discomfort in the afternoon, the only possible side effect - I'm having the "Camera" where I least want it, in a couple of weeks time. Probably get rid of a Pile or two at the same time.

User
Posted 11 Jun 2021 at 16:19
Some men find that acupuncture is really helpful for hot flushes.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Jun 2021 at 22:24

Good luck with that Bob. Dad will get it done in August to check why he is bleeding.. 

Thanks Lyn. I shall ask dad if he wants to try it.

Going to be a mega hot weekend. Feel sorry for the hot flushers!

 

 

User
Posted 12 Jun 2021 at 17:50

Originally Posted by: Online Community Member

Good luck with that Bob. Dad will get it done in August to check why he is bleeding.. 

Thanks Lyn. I shall ask dad if he wants to try it.

Going to be a mega hot weekend. Feel sorry for the hot flushers!

 

 

I must admit, the problem has improved - but it has been such a long time to even get an appointment, I'm sticking with it. Actually, not all that hot today here in Suffolk - but I'm traveling to Gloucestershire in the Morning, (Sunday) I suspect, I will need to change into Shorts when I arrive!.

User
Posted 12 Jun 2021 at 20:42
As Lynn said if possible get acupuncture for hot flushes. I was on Zoladex for 3yrs (last implant June 2018) including couple years enzalutimide, abiraterone, prednisolone. I did have decent hot flushes day night and acupuncture was really good at curbing the effects. Incidentally hot flushes for me ceased maybe 2-3 months ago so practically had effects for as long as on treatment which some say does happen but, at least they've stopped and treatment seems to have done what it's supposed to have done.

Peter

User
Posted 13 Jun 2021 at 00:30

Enjoy Sunday Bob. Its going to be 29 in London!

Thanks Peter. Really glad to hear hot flushes finally stopped and treatment has done the job. Really reassuring to hear this. Il defo speak to dad about accupunture. He had it many years ago for migraines and it did work, so he may be up for it again.

Thank you!

User
Posted 15 Jun 2021 at 09:58

Originally Posted by: Online Community Member

Enjoy Sunday Bob. Its going to be 29 in London!

Thanks Peter. Really glad to hear hot flushes finally stopped and treatment has done the job. Really reassuring to hear this. Il defo speak to dad about accupunture. He had it many years ago for migraines and it did work, so he may be up for it again.

Thank you!

Now in Glos, get my Oncology & PSA result today with a phone consultation.  Hope all is OK.

EDIT - PSA was 0.16, which was the expected result. No more appointments, just 6 monthly blood tests!

Edited by member 15 Jun 2021 at 19:02  | Reason: Not specified

 
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