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Dad just diagnosed. Need advice

User
Posted 10 Jun 2021 at 22:06

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 10 Jun 2021 at 23:06

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

Edited by member 10 Jun 2021 at 23:07  | Reason: Not specified

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

User
Posted 11 Jun 2021 at 08:28

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 11:37

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 15:19
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 21:24

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 16:50

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 19:42
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 12 Jun 2021 at 23:30

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 08:58

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 18:02  | Reason: Not specified

User
Posted 15 Jun 2021 at 20:48

Fab! Really fantastic result Bob! So pleased. That is a great PSA read. And long it may continue!

You got the Colonoscopy soon? After that you can hopefully relax and forget about medical stuff for at least 6 months!

User
Posted 17 Jun 2021 at 10:24

Originally Posted by: Online Community Member

Fab! Really fantastic result Bob! So pleased. That is a great PSA read. And long it may continue!

You got the Colonoscopy soon? After that you can hopefully relax and forget about medical stuff for at least 6 months!

Thanks. Yes, I don't think there is much more they can do to me now.  I'm double vaccinated as well!.

I hope your dad has a similar path. The Onco told me, they expect the PSA level to even up at some point, hopefully at that low level. I don't think they are too concerned if it gets as high  as 1 - but it is the direction of Travel that is important. 

User
Posted 17 Jun 2021 at 22:05

Fantastic! Yes, i think Lyn explained that once the testosterone rises again then the PSA will rise as that is normal. I am not sure what figure it gets to before it is a concern? Maybe it's an individual thing? I hope my dad also has a similar result. His next PSA is in August. Keeping everything crossed!

 

User
Posted 17 Jul 2021 at 18:19
How is it going now?
User
Posted 17 Jul 2021 at 23:36

Hey Bob,

How are you? Did you have the colonoscopy done?

Dads cough has improved as he has been on antibiotics. Not completely gone but its better. Chest x-ray was clear. He still gets blood in bowel movement so waiting for a colonoscopy date to come through. He has his routine endoscopy coming up in 2 weeks. Hopefully that will be OK.

Hot flushes still there but i ordered him this cold towel thing that he wears round his neck, which he says really helps. It stops the hot flushes lasting too long. He seems better on the whole, which we are all grateful for! 

How are you and things on your side going?

User
Posted 19 Jul 2021 at 07:01

my dad was diagnosed with cancer last year. third stage. our grand mother and grand father also had it. my father has seen them suffer with it. he was always afraid of hospital because of it.

when we found out about his cancer we courage to tell him . he was brave and knew it all time but kept it away from us.  i have never felt more helpless in my whole life. the whole time of treatment and therapy was very depressing and exausting . still he never said anything about it or complained.

User
Posted 19 Jul 2021 at 07:05

menatl support is really necessary in this time , many people get depressed. there are many online therapies for depression. best of them is called expressive therapy for depression. if anyone needs help with depression please visit the link below.

expressive therapy for depression

Edited by moderator 20 Jul 2021 at 10:11  | Reason: Not specified

User
Posted 19 Jul 2021 at 17:59

Originally Posted by: Online Community Member

Hey Bob,

How are you? Did you have the colonoscopy done?

Dads cough has improved as he has been on antibiotics. Not completely gone but its better. Chest x-ray was clear. He still gets blood in bowel movement so waiting for a colonoscopy date to come through. He has his routine endoscopy coming up in 2 weeks. Hopefully that will be OK.

Hot flushes still there but i ordered him this cold towel thing that he wears round his neck, which he says really helps. It stops the hot flushes lasting too long. He seems better on the whole, which we are all grateful for! 

How are you and things on your side going?

Half hour before the appointment, it was cancelled - we had arrived in the car park when they rung my mobile!

I was very annoyed, because of the Prep Loo sitting & diet + covid test (Which was fine) They said an emergency had dragged the Doc away.

Now have a new appointment next week, with a Sigmanoscopy - which is not as deep or horrible.

User
Posted 19 Jul 2021 at 21:02

Sorry, Bob, to hear of your cancellation as I can empathize with all the prep  (especially taking the powder that virtually forces you to sit on the toilet for 15 or so hours whilst emptying your bowels) that you had to do to be ready for the colonoscopy. That was the worse for me when I underwent a colonoscopy in 2018. My procedure was carried out at Addenbrookes and though I was not looking forward to it, the reality for me was that it was a piece of cake. I didn't even know that they had started and when I asked the consultant when they were going to start he drew my attention to the monitor,  which showed the tube about halfway up my colon. I was being "fed" pure oxygen from a device clipped under my nose which, I think, made me quite high and oblivious of what was going on.

 

The result of the colonoscopy was there was no cancer, just piles.

User
Posted 20 Jul 2021 at 08:26

Oh no Bob. So sorry to hear this. I feel like it's happening a lot. My friends scan was cancelled yesterday, she got a call on the way to the hospital. Another friend of mine has the same but she was already in hospital and they said the consultant has an emergency to attend! Defo hear u regarding all the prep and very disappointing. Hopefully Sigmanoscopy will happen next week. 

Still no news re dads Colonoscopy. I will call Macmillan now.

Vishalghatul1, yes i agree re mental health. My dad was extremely down, he is a bit better now that lockdown has eased. He is out now and seeing friends. Sorry to hear about your family. I was terrified when dad was diagnosed, however this chat and the people on here made me see that it can be OK. They gave me hope. 

Ohdear!, Glad re results of colonoscopy!

User
Posted 20 Jul 2021 at 10:50

Bob 

I was gowned up ready to go in ,the nurse returned and said sorry we have to cancel. I had been to an out of area hospital and they hadn't picked up that I had to have a hospital bug swab done. Livid doesn't go anywhere near describing my emotions.

I refused to go through it again and asked for the CT version of the scan. So a few day before the CT scan the hospital sent me a bottle of liquid to drink 12 hours prior to the scan. The effect was worse than the original preparation drink.🥴.

My scan also turned out negative for cancer and picked up piles.

My advice to guys now is dab don't wipe 

Hope it goes okay for you.

Thanks Chris

 

User
Posted 20 Jul 2021 at 11:00

Originally Posted by: Online Community Member

I refused to go through it again and asked for the CT version of the scan... sent me a bottle of liquid... The effect was worse than the original preparation drink.🥴.

"we've got an awkward customer here, let's put double the laxatives in the potion"

Glad it turned out OK in the end. 

Dave

User
Posted 20 Jul 2021 at 17:31

Originally Posted by: Online Community Member

Sorry, Bob, to hear of your cancellation as I can empathize with all the prep  (especially taking the powder that virtually forces you to sit on the toilet for 15 or so hours whilst emptying your bowels) that you had to do to be ready for the colonoscopy. That was the worse for me when I underwent a colonoscopy in 2018. My procedure was carried out at Addenbrookes and though I was not looking forward to it, the reality for me was that it was a piece of cake. I didn't even know that they had started and when I asked the consultant when they were going to start he drew my attention to the monitor,  which showed the tube about halfway up my colon. I was being "fed" pure oxygen from a device clipped under my nose which, I think, made me quite high and oblivious of what was going on.

 

The result of the colonoscopy was there was no cancer, just piles.

Thanks - I'm going to ring them this time, BEFORE I start the prep, find out if it is likely to be messed up again - especially as the "Slaves to the NHS AP" are dissapearing from duty in droves.

User
Posted 21 Jul 2021 at 08:47

Dave your post cracked me up! Lol!

Macmillan called yesterday, dad has a Sigmanoscopy in 3 weeks time. So Endoscopy next Thursday, Covid test Monday before. Then Sigmanoscopy Thursday after with Covid test on the Monday again!

Fingers crossed all comes back clear. I do worry but i know worrying doesn't help.

Will keep you posted.

User
Posted 23 Jul 2021 at 07:55

Originally Posted by: Online Community Member

Dave your post cracked me up! Lol!

Macmillan called yesterday, dad has a Sigmanoscopy in 3 weeks time. So Endoscopy next Thursday, Covid test Monday before. Then Sigmanoscopy Thursday after with Covid test on the Monday again!

Fingers crossed all comes back clear. I do worry but i know worrying doesn't help.

Will keep you posted.

It's about health things about our body, under the control of strangers. That you HOPE are capable !

User
Posted 23 Jul 2021 at 08:14

100% agree Bob! 

User
Posted 25 Jul 2021 at 23:56

Good luck with the Sigmanoscopy Bob. Please keep us posted. They best not cancel this time round!

User
Posted 27 Jul 2021 at 11:39

Originally Posted by: Online Community Member

Good luck with the Sigmanoscopy Bob. Please keep us posted. They best not cancel this time round!


I rung them yesterday afternoon, & they said it should go ahead this time!

We will see.... I had the Covid test, yesterday morning - why do they call it the Covid swab, I wonder? 

It's a PCR test, like any other!

Point of commitment for me tonight after Dinner - first Lax tablets!, Wed very restricted diet & more Lax, Thurs morning at 9, the Camera! SMILE.......

User
Posted 27 Jul 2021 at 12:18

Lets hope they do go ahead with it! My dad got his letter, it says nothing on there re diet or lax. Just said to have a light breakfast, they will give enema once there. 

He is having the same procedure next week, wonder why prep is different?

He has the endoscosy for esphogues this Thursday so went for covid test (PCR!) yesterday morning too.

Good luck and keep us posted!

User
Posted 27 Jul 2021 at 13:24

Originally Posted by: Online Community Member

Lets hope they do go ahead with it! My dad got his letter, it says nothing on there re diet or lax. Just said to have a light breakfast, they will give enema once there. 

He is having the same procedure next week, wonder why prep is different?

He has the endoscosy for esphogues this Thursday so went for covid test (PCR!) yesterday morning too.

Good luck and keep us posted!

Good question regarding Prep!

I get to have the Enema an hour before I leave home! - Means a very early start Thurs Morning.

It's their standard print-out, so I guess everyone has to do it! (West Suffolk Hospital) 

This is their guidance: (Last two pages my prep)

https://www.wsh.nhs.uk/CMS-Documents/Patient-leaflets/Endoscopy/5035-10-Flexible-Sigmoidoscopy.pdf

User
Posted 27 Jul 2021 at 18:35

Hmmm interesting! Dads is different. They say they will give up to 2 enemas at the hospital. Light breakfast is fine and no special diet beforehand. Same procedure but diff prep as per what hospital wants.

Good luck with prep and on Thursday.

Why you having this procedure done?  Are you experiencing blood/discomfort, or to do with piles?

User
Posted 27 Jul 2021 at 19:48

Originally Posted by: Online Community Member

Hmmm interesting! Dads is different. They say they will give up to 2 enemas at the hospital. Light breakfast is fine and no special diet beforehand. Same procedure but diff prep as per what hospital wants.

Good luck with prep and on Thursday.

Why you having this procedure done?  Are you experiencing blood/discomfort, or to do with piles?

Mainly Piles, Blood occasionally. & discomfort.

This has been much delayed, due to Covid - hospital did not want to know about these problems until quite recently.

User
Posted 27 Jul 2021 at 21:30

Yes, agree. Covid really messed NHS up. Dad gets a lot of bleeding, i think its a side effect from RT. Pls do keep us posted.

 

User
Posted 28 Jul 2021 at 10:24

Originally Posted by: Online Community Member

Yes, agree. Covid really messed NHS up. Dad gets a lot of bleeding, i think its a side effect from RT. Pls do keep us posted.

 

Bleeding not bad now, but I want the Piles banded !  I had this problem, long before RT 

2 loo visits, this morning!!!!

User
Posted 28 Jul 2021 at 13:02

Only 2 loo visits? Though I suppose the time spent on the loo is the more pertinent question!

User
Posted 29 Jul 2021 at 15:07

Originally Posted by: Online Community Member

Yes, agree. Covid really messed NHS up. Dad gets a lot of bleeding, i think its a side effect from RT. Pls do keep us posted.

 

Had the Camera today. Diagnosed Radiation Colititis, Treated with Argon beam diathermy. More in 3 months,  or Piles banding, they did not do them today. He said it often happens following RT.

Bit sore down under this afternoon....

User
Posted 29 Jul 2021 at 22:48

Phew! Glad they went through with it and can be treated. I just looked up what the treatment was. Literally heat to burn of bits. Hope you are feeling better now. I think dad may have something similar. 

Endoscopy today was clear. Next check up in 2 years time.

He has PSA, testosterone and full blood count on Monday for the Oncologist telephone apt a couple of weeks after. Fingers crossed PSA is still low. 6 months flew by!

Will post the results.

 

User
Posted 30 Jul 2021 at 07:55

Originally Posted by: Online Community Member

Phew! Glad they went through with it and can be treated. I just looked up what the treatment was. Literally heat to burn of bits. Hope you are feeling better now. I think dad may have something similar. 

Endoscopy today was clear. Next check up in 2 years time.

He has PSA, testosterone and full blood count on Monday for the Oncologist telephone apt a couple of weeks after. Fingers crossed PSA is still low. 6 months flew by!

Will post the results.

 

Not as sore this morning thankfully, though not had a "Visit" yet! There has been a fair bit of "Wind" in the night though.
Thanks for your kind thoughts, & all the best to your Dad.

User
Posted 01 Aug 2021 at 00:01

Hope you have recovered now Bob. Hopefully less windy lol! Dad isn't looking forward to the procedure. Shall message once we know more and also with blood results.

 

User
Posted 03 Aug 2021 at 09:44

Originally Posted by: Online Community Member

Hope you have recovered now Bob. Hopefully less windy lol! Dad isn't looking forward to the procedure. Shall message once we know more and also with blood results.

 

Good morning.

Still a bit tender, down there - so far, no blood - which is good news, as they warned there might be for a day or so. I hope it stays that way!

He said this was quite common, following RT - which weakens the veins in that area.

User
Posted 03 Aug 2021 at 09:48

Dads PSA results are in <0.01. Really pleased!

Haven't got the FBC or testosterone yet. The Onco will probably let us know in 2 weeks on the follow up call.

Camera procedure this Thursday. Will post results but no blood since he stopped iron tablet's. Am wondering if Iron caused constipation, which in turn was causing blood due to straining. We will know more soon.

Take care.

User
Posted 03 Aug 2021 at 15:53

Originally Posted by: Online Community Member

Dads PSA results are in <0.01. Really pleased!

Haven't got the FBC or testosterone yet. The Onco will probably let us know in 2 weeks on the follow up call.

Camera procedure this Thursday. Will post results but no blood since he stopped iron tablet's. Am wondering if Iron caused constipation, which in turn was causing blood due to straining. We will know more soon.

Take care.

Iron tablets, will make you constipated - which can lead to bleeding in the Rectum (Piles etc) which causes low Iron - A vicious circle.  Cut down the dose, or cut them out. I'm afraid some GPs are lacking common sense, & are too slavish to their computers. I had the same problem, going back.,

User
Posted 03 Aug 2021 at 22:04

Yes, I was thinking the same thing. His full blood count is also in. The red cell count has dropped again, its down as abnormal 4.07. Also the hemoglobin has dropped even further, which again is abnormal, 117.

A bit worried about why these are dropping. Im sure the bleeding has something to do with it. Could RT/HT also cause this?

Worried about why and what they may find on Thurs.

Endoscopy was all clear. 

Anything else that can cause a drop? Onco apt is 24th August. She requested these bloods, so hopefully she can advise.

Testosterone results not there yet.

Thanks.

User
Posted 04 Aug 2021 at 07:54
https://www.nhs.uk/conditions/iron-deficiency-anaemia/

I expect, you have already read things like this?

User
Posted 04 Aug 2021 at 10:30

Yes, did lots of research last night. He has always been anemic and on iron tablet's, which used to work. Since treatment they dont seem to be working. Just a bit worried about why. I read that even a bit of bleeding can cause red cells and hemoglobin to drop. Hopefully its just that. Shall find out tomorrow.

User
Posted 04 Aug 2021 at 13:22

Iron tablets, will make you constipated - which can lead to bleeding in the Rectum (Piles etc) which causes low Iron - A vicious circle.  Cut down the dose, or cut them out. I'm afraid some GPs are lacking common sense, & are too slavish to their computers. I had the same problem, going back. Expressive Therapy For Depression goes beyond traditional talk therapy.

 

Edited by member 12 Aug 2021 at 15:17  | Reason: Not specified

User
Posted 05 Aug 2021 at 19:27

Dad had Sigmoidoscopy today. The findings were slight damage to the rectum  due to RT. Apparently its very mild so no need for treatment and should heal by itself. Dad was advised to cut down iron tablet's to one every other day to see if that helps 

No piles/polyps that they could see.

Doesn't sound like they went too deep in though as he wasnt given any prep before treatment and was told to eat as normal. He took an enema when he was there. Report says descending colon only.

Glad it wasn't anything more serious though!

Onco will call in 2 weeks and hopefully will be able to advise on how dad can get red cells and hemoglobin back up.

Glad all the tests are out of the way.. for now!

User
Posted 05 Aug 2021 at 20:14
Thats good - it seems hospitals, have very many different ways of using their camera's
User
Posted 05 Aug 2021 at 20:33

Seems that way! Are you feeling better and less windy now?

User
Posted 06 Aug 2021 at 12:35

Originally Posted by: Online Community Member

Seems that way! Are you feeling better and less windy now?

A bit up & down, is the answer - a bit of Red yesterday & today.

Still uncomfortable, much of the time.

Wind - livable.

 
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