Personal experience please

User

Posted 21 Mar 2018 at 08:28

Hi All,

My partner has his brachytherapy procedure on Monday and is becoming increasingly anxious. Can you share your experiences please, I'm sure I read somewhere that consensus was the truss biopsy was worse ?

I don't think it helps that he won't be allowed a visitor although staying in overnight, but I understand the reasoning.

Can you also help with recovery time, we've a wedding to plan !

Appreciate any feedback

Thank you

User

Posted 23 Mar 2018 at 11:25

Hi Jo,

Thank you so much, you've been more than helpful. I showed him the responses from my initial queries that you and Sandra posted and it helped him enormously. Roll on Tuesday when this bits over ! Regarding libido and ED, Dave and I only met last April so we haven't got the cushion of many years of intimacy to protect us through this. That just means we have to try harder to keep the cuddles and care for each other prominent, I can't imagine life without him and sex isn't the be all and end all. He adores me and has the most beautiful heart, what more can a girl ask for ! X

User

Posted 21 Mar 2018 at 22:56

What brachytherapy is it O h?
Permanent seed implant or the High Dose ?

My husband had the seeds. Click on my profile and read through, I keep it a as diary so it might give an idea of what it was like for John.

Make sure you take pads for when he leaves hospital.

We can't control the winds - but we can adjust our sails

User

Posted 22 Mar 2018 at 01:10

Just to say that Jo's husband probably wasn't insured to drive so soon after general anaesthetic - generally you are not covered for at least 48 hours. Good job that snow didn't cause an accident - - eeeek!

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

User

Posted 22 Mar 2018 at 07:42

Hi Jo,

Thanks so much for your response, it's so helpful and reassuring. Hope it's ok to pick your brains a little more please, can you tell me about the radiotherapy treatment, after brachytherapy ct scan and then how long before radiotherapy started, daily mon to fri ? how long were you at the hospital etc, side effects just tiredness ?

Then what happens, how is it left, next steps etc ?

I like the fact our chaps are on the same path, similar age etc .... !

Karen x

User

Posted 22 Mar 2018 at 07:57

Hi Sandra,

Thank you for the reply, it is seed implant. Between you and Jo I have lots more info now and it's reassuring. I love how candid you are on the ED front, it made me think about that side of things ... something I haven't done, we seem to be avoiding talking about it altogether and that's ok for now I guess as we're just protecting each other.

Thanks again for your support.

Karen x

User

Posted 23 Mar 2018 at 01:10

Hi karen regarding the ED libido etc we spoke about it lots when first started ht we both found it strange at first and i shed a few tears in private that we didnt share the intimate closeness anymore, we both felt like was losing that part of our relationship, i suppose its like greiving for something youve lost realy, were over it now and accept it for what it is, i just tell him its not forever and weve got to go through this to hopefully get to the end in one piece, he said hed try any medication to combat it but until i explained hed get an erection but no feelings of desire, ive told him id rather not put him under pressure to act up for my benefit, we.l sort things out as and when we cross each problem, we just dont tend to stress too much about it weve had enough to deal with the last few months were relieved to have a bit of breathing space at the minute, he does use a pump occasionally for penile health only..

Take care

Jo.xx

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User

Posted 21 Mar 2018 at 22:56

What brachytherapy is it O h?
Permanent seed implant or the High Dose ?

My husband had the seeds. Click on my profile and read through, I keep it a as diary so it might give an idea of what it was like for John.

Make sure you take pads for when he leaves hospital.

We can't control the winds - but we can adjust our sails

User

Posted 22 Mar 2018 at 00:36

Hi if its the high dose brachytherapy my OH had it 29th december at stjames leeds, he went down to theatre arount 8.30am after been preped etc was put under general anaesthetic the ward rang me around 1pm to say he was in recovey to be transfered to a ward overnight, i was allowed to go visit straight away no restrictions, he was a little groggy from anaesthetic,he had a catheter in which they removed in the evening which he said wasnt painful just felt strange but relieved to have it removed, he was then told to pass urine in a urine bottle when he felt he needed to go and inform the nurse as they needed to measure it etc, he waant able to pass urine for around 3 hours even though drank 2litres of water and had the urge nothing would come, he was up and about to toilet etc eventually passed urine, only small amounts each time but lots of clots in but flow got better overnight he was discharged around lunchtime the following day, he was bruised and sore around testicles and bottom but not unbearable he was up and about as normal when we came home even insisted he drive us home from leeds to hull said wed get there quicker him driving as it was snow etc.😁.he was fine a little tired for a few days..he was off work at that time as it was xmas holidays.. my OH has a physical job also so a few days rest post op would be best i think..hope this helps you with your queries..good luck..jo xx

User

Posted 22 Mar 2018 at 00:55

Also meant to add your OH exactly same diagnosis as mine gleason9 t3b seminal vesicle invasion, also identical treatment paths, been on zoladex ADT 3monthly implant since september 2017 will continue for 3years..high dose brachytherapy 29th december then had 23 sessions radiotherapy imrt to pelvic lymph area and prostate finished 14th february..my partner is 52 otherwise fit and well only side effect so far is ED loss of libido due to hormones, he worked throughout his radiotherapy although felt more tired then usual in the last week..good luck and take care.

Jo.xx

User

Posted 22 Mar 2018 at 01:10

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

User

Posted 22 Mar 2018 at 07:42

Hi Jo,

Then what happens, how is it left, next steps etc ?

I like the fact our chaps are on the same path, similar age etc .... !

Karen x

User

Posted 22 Mar 2018 at 07:57

Hi Sandra,

Thanks again for your support.

Karen x

User

Posted 23 Mar 2018 at 00:01

Hi karen glad to be of help, he had his ct planning scan about 4 weeks before radiotherapy started they told him to use a supposatry a few hours before to make sure his bowel was empty also had to fill his bladder before ct scan the radiologists then line everything up, theyre very good and will explain to your OH wether its full enough etc my oh had to empty some out as it was overfull then back to scanner to check, he had some small tatoo dots above his groin and hip area i think, theyl explain and give you info regarding bladder bowel and diet on the day as each man is different just advised to avoid alcohol,fizzy drinks, tea and coffee until treatment finishes, they gave him info with possible foods to reduce such as spicy foods, limit fruit etc, he went for 23 sessions monday to friday, he had the same time slot for duration of treatment due to work his was 5.30pm but often delayed for an hour or so, once was 2hours delay due to 2 scanners been repaired, once in the machine he was only about 20minutes so its usually waiting about if delayed, he started to get a little tired towards the last week and half but nothing unbearable, it could have been the fact he was leaving work,home to shower,change then rushing for treatment we.l never know but he just went to bed a little earlier and tried to relax a bit more on weekends hes usualy 100 miles per hour, he had a break from gym for last 2weeks as was too much of a rush to get there..

Jo.xx

User

Posted 23 Mar 2018 at 00:25

Lynn good point, i never even thought about him not been insured to drive after anaesthetic! it was around 24 -28 hours after till he drove i just thought because it wasnt the same day he.d be ok..well if im honest i was just relieved that he insisted on driving once he said he felt fine i didnt like to protest,😈 i was dreading it in bad weather, but as soon as we got on the motorway the roads were clear no snow or ice, i did say if he wanted to swap at services id take over but he said no thanks 😁 think hes trying to tell me my drivings 👎 ill be mindful in future.

Jo.xx

User

Posted 23 Mar 2018 at 01:10

Take care

Jo.xx

User

Posted 23 Mar 2018 at 11:25

Hi Jo,

User

Posted 23 Mar 2018 at 23:32

Hi karen im pleased that you both feel a bit more reasured now you have some info about treatment, i know everyone is different regarding side effects + recovery after treatments etc, just to have some insight from peoples experiences i found helped us so much, the people on this forum are fantastic and have such knowledge and kind words it puts things into perspective sometimes, we were devastated when first diagnosed i was heartbroken to be honest for my OH and us as a couple, but put on a brave front as he would have been worried that i was upset hes that type of bloke, i can cope with the side effects and the rest so long as hes still here and well, you both sound like youve got a solid relationship karen so im sure together youl both be strong, p/c is just such a rollercoaster and every treatment path has its impact on our mens quality of life, my OH has even said on a number of occasions that hed understand if i wanted to pursue a life without him as he thinks its unfair on me! Im sure he just wanted to give me an option but knowing deep down i wouldnt be going anywhere after 28 years together.😊..

Good luck for next weeks treatments take care..

Jo.xx

User

Posted 26 Mar 2018 at 08:51

Hi Jo,

Only just seen your response, thank you. I dropped him at the hospital at 7.15 this morning, feel some relief that things are now happening, it's been almost six months to this point. I've a busy day planned to keep my mind off things as best I can. I'll keep in touch, Karen x

User

Posted 26 Mar 2018 at 20:42

Thinking of you both hope everything haa gone well..

Jo.xx

User

Posted 31 Mar 2018 at 08:34

Hi Jo and Sandra and anyone else that's reading !

Well Dave has been really well after the treatment, they didn't do seed implant for some reason, just HDR with the needles. He was discharged the following morning once he'd pee'd the required amount. He has been more tired than usual but no other symptoms, no incontinence at all. The only down side is that the stress has triggered his colitis and he has had to go back on steroids which is always a nuisance.

Wednesday he has a CT scan and radiotherapy planning, RT begins on the 17th April for 15 sessions, we think.

So far so good, thank you to this wonderful support group, such a big help.

Any idea why the seed implant may not have happened ? But a good thing I think ?

Oh, almost forgot PSA down from 27 to 7.3 and that's good too ?

We've booked a long weekend in London next week, looking forward to getting away and having sine fun

Thanks again

Karen

User

Posted 31 Mar 2018 at 12:12

Hi, the fact that he wasn’t allowed any visitors that night in hospital suggests that they always intended to give 5he high dose brachytherapy rather than seed?

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

User

Posted 02 Apr 2018 at 23:04

Hi karen sorry for late reply me and OH had a couple of days away, im pleased everything has gone well and hope his flare up of collitis calms down, ive only just realised you was referring to the permanent seed brachy on your original post, i thought you meant the High dose brachy,😁.how odd that they decided to change it, did the onco not give you information and leaflets on the brachy procedure or a copy of the consent form your oh signed? Ours talked him through in great detail even showed him how it would be delivered by pictures in one of the books..and i also thought it strange you wasnt allowed to visit, they rang me from the brachy unit to say my oh was in recovery and could go visit as he was waiting to be taken up to a ward and could go with him, maybe it was because i was staying at the patient/ relative hotel in the hospital at leeds, who knows each trust has different policies i assume, i hope things continue to go well and next step radiotherapy which im sure will be ok, my oh had 23 sessions only had a little trouble with bowel urgency and been a lot more frequent and loose in the last week but soon calmed down with loperamide, no problems with the bladder filling the radiologist told him he was spot on everytime and that was the part he was dreading..keep well and good luck for the next part of this journey.

Jo.xx

User

Posted 05 Apr 2018 at 08:48

Hi to Jo and any other readers,

Hospital yesterday for ct scan and radiotherapy planning. The Christie hospital is only 20 mins away from us, so fortunate as it keeps stress levels down! I'm always shocked how busy it is, it feels like entering a small town where everyone has the same thing in common, blooming cancer ! The care was excellent, the little nods and smiles here and there from strangers, so much warmth can't fault the place. Having said that once the appointment is over we are always out like a shot, it's as though we have to get out of the doors to breathe again.

CT scan done, tattoo's done and 15 sessions of radiotherapy arranged to start the 17th April. We feel very optimistic, as Dave said he's already had 60% of the radiation without too much drama. Feels like another appointment ticked off the list, feels like making progress, feels like come June we will be getting on with life and trying not to dwell on the what ifs, feels like we're quite fortunate.

Best wishes to all on your part of the journey x

User

Posted 06 Apr 2018 at 18:30

Hi karen im pleased your both been positive about treatment plan and that everythings going well, were much the same hopeful that we get a good outcome until were told otherwise..the radiotherapy goes quute quickly and your right its like everyones got this unspoken thing because all in the same situation..hope everything goes well take care..

Jo.xx

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