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My Journey through HT and RT

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User

Posted 13 May 2023 at 20:51

Like you PeterCo HT/RT was the only option I was offered.

I’ve had a year of Prostap already with another 2 to look forward to😟 Doing everything I can to reduce the side effects and learning to live with them. I sometimes feel that those of us on this route don’t get the support that we need and that those on surgery get…and as you say it’s 3 years of this. The support during RT was excellent but since finishing it seems I have been forgotten about. I’m even finding it difficult to get an appointment with someone who can help me with what I suspect might be the start of Peyronie’s disease as a result of HT. In contrast I wrote an email to Somaerect yesterday and got a very helpful reply today(on a Saturday!). This issue really worries me because when I eventually come out the other end of this I want my full sex life back, and I feel if I don’t start some kind of rehab it might get worse (and the guy from Somaerect confirmed this).

I have zero libido although my wife and I have found ways of giving ourselves intense pleasure just by touch. I’m amazed at just how many erogenous zones we have found that give us pleasure to the point of orgasm, even for me on the odd occasion. Even without me reaching the Big ‘O’ I can come(sorry!) away feeling very satisfied…even though I get the ache ‘down below’😊

My next step is contact the sexual support services of ProstateCancerUK for advice.

User

Posted 13 May 2023 at 22:17

My consultant told me that he does not recommend any treatment until the PSA rises above 0.1. I am not sure if this applies only to men who have had prostatectomies, as I did.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 14 May 2023 at 19:10

I do count myself as fortunate as things have returned basically to what they were albeit accepting that I'm 8 yrs older than I was when treatment started. As far as I'm aware I'm just still a bit too tired thanI'd like and carrying a little bit more weight but not too bad. Obviously things can change. I read the issues that many have and feel for them. HT/RT is the only treatment I had.

Peter

User

Posted 15 May 2023 at 20:01

Hi Decho, sorry to hear about the problems. I totally get the GP situation and to be honest the aftercare and knowing that I'm going to have to try and contact a GP is already winding me up. Good to hear that you're feeling good though. Thanks for the emergency list, looks like I'll be doing a bit of shopping soon. Have a great time in fuerteventura, hope the weather's good for you.

All the best

Ian

User

Posted 15 May 2023 at 22:01

Thanks Ian, I’m pleased to report that the side effects from the RT have now gone and I’m feeling great, in fact I’ve never felt better. Today I did a 38 mile ride on my ebike and my legs have never felt stronger. I’ve still got some aching joints and a wonky Willy from the HT…and still heard nothing from my GP which is VERY disappointing. The Pyronie’s disease worries me and I need to get an answer.

i know different people have different reactions to Radiotherapy, and I know I’m not out of the woods yet, but I never thought I would be this far on at this stage. I have no evidence to support this but I have kept so active and busy during and after the RT and I have convinced myself that this has helped. This morning I felt a bit tired before I set out so I took it easy on the bike, but I always plan my route via a coffee shop and once I’d had my shot of caffeine for the day I felt much better and bursting with energy, so really enjoyed the ride along the Union canal.
I do need to lose a few pounds…I found that I was absolutely ravenous following the RT sessions and just couldn’t stop munching. We’ll be doing lots of walking and cycling in Fuerteventura which will help.

it’s good that you’re only having HT for 3 months rather than 3 years.The HT has definitely been worse than the RT in my case. Do you have a date for your RT yet?

Take care,

Derek

User

Posted 16 May 2023 at 19:37

Hi Derek

I know from this forum how lucky I am to be only having 3 months of HT. I am having 4 Prostap jabs, the second of which is next Friday. RT planning is on 26th June and then 20 days of RT should be around middle to end of August. Another thing I am grateful for is the jabs being in the arm rather than the stomach, which I was slightly concerned about. One of the guys at Maggie's has been through this and his diagnosis was almost identical to mine. He had 3m of HT then 20 days of RT then a few weeks later was on testosterone injections.. No problems since treatment ended. I am hoping that I will follow a similar path. I think that you have hit the nail on the head regarding getting as fit as possible before treatment and keeping it up during and after. Unfortunately the only thing I don't mind doing is walking which I have always done so am now just increasing the daily distance and the speed, hopefully this will be enough although she who must be obeyed is now looking at gym membership for us.😞

Hope you have some joy with the GP soon.

All the best.

Ian

User

Posted 20 May 2023 at 06:17

2 weeks on from finishing RT and feeling great. I would say bowels more or less back to normal and my confidence that I can control them is back. Still have some urinary poor flow issues at night but other than that I’m feeling much better than I expected at this stage.

Off to Fuerteventura today and not nervous about the 4.5 hour flight at all. Will take my MacMillan cancer card just in case.

I still haven’t heard back from my GP, went to the surgery again on Wednesday and they had NO record of my email. Different receptionist this time told me to write a note and leave it which I did…still nothing. Before and during my RT I couldn’t fault the treatment I have had…but the aftercare totally sucks! Nobody seems to want to know😟
comparing this with a friend whose not long had RARP and has had really good aftercare and had his post op checkup with his surgeon this week. I’ve felt for some time that those of us on the HT/RT route are treated like second class ‘passengers’, which I think is totally unfair given that we have up to 3 years of treatment to endure.

Anyway todays a good day and looking forward to some time in the sun(shade😎)…lots of walking and cycling….and a few sangrias watching the world go by😊

User

Posted 20 May 2023 at 12:57

Thanks for keeping us informed, alway interesting and informed.

As it happens I have my Brachytherapy pre-op consult on Monday and my external RT initial consult next Friday.

So here I go.........

User

Posted 22 May 2023 at 20:16

I had a very i informative and empathetic phone call from the PCUK Sexual Health Specialist Nurse today, who despite me being in Fuerteventura, took a lot of time to listen to my feelings and explain to me why and what I should do next. She was saying that not only those on the RT/HT route feel there is a lack of support for sexual health.

I explained to her about what I suspect may be the start of Peyronie’s disease which really concerned me as I have another 2 years of this HT to cope with. She gave me a lot of good advice about the way forward which I am going to follow…

1. Contact my GP Surgery and request an urgent face to face appointment….when I get back home. I need an examination to see if it is Peyronie’s disease.

2. Start Penile Rehab ASAP whether or not this is the case..this may involve a combination of medication and using a vacum pump. I got a very good response from iMedicare informing me of what they thought would be the best option for me. If necessary I will just buy this myself if my GP won’t prescribe…even though I don’t think I should have to! The PCUK Specialist Nurse told me to contact her for further info if needed.

So….onwards and upwards(hopefully!) as they say.

I can’t express how good it was to talk to someone who understood my feelings and offer some practical help.

Feeling good….journey out here was no problem despite the French trying their best to disrupt travel!😡

User

Posted 23 May 2023 at 03:09

Any help with sexual health on the NHS seems very patchy. Certainly in my trust sexual health clinics are over stretched. I was told I could expect an appointment in March, still waiting. They won't prescribe Cialis or Tadalafil for rehabilitation and although prescribed sildenafil, if I want more I have to keep going back to the DR.

In my trust it's self help or no help. So the very best of luck. If you buy a pump you can claim the VAT back. Use mine twice daily.

User

Posted 04 Jun 2023 at 13:19

Well exactly 1 month since finishing RT and things seem to have settled down nicely. Bowels have returned to normal with no ‘scary’ moments and I’m definitely not getting up to pee as often at night. Flow rate seems better now especially during night where I did struggle a bit at first. I am feeling a bit tired at times but part of that is down to the hot weather…I’ve been on holiday in Fuerteventura for the past 2 weeks. Generally feeling great and managed a 30 mile ebike ride this week and also a bike ride up round our local valcano(distinct🤣) …I actually find this really good exercise as it’s easier on the joints than walking although we’ve done quite a bit of that as well.

Still a bit concerned about the brown spots that appeared in my groin and scrotum, and also about Pyronies disease so will TRY and get a face to face with my GP when I get home.

User

Posted 04 Jun 2023 at 13:41

Originally Posted by: Online Community Member

also about Pyronies disease

I started to notice that and spoke with a urologist at a support group. He said I needed to ask for a referral to a Peyronie's specialist, but meanwhile make good use of the pump. I did just over a month of 2 x 15mins/day with the pump, and that fixed the Peyronie's. It was some time after that the specialist appointment came through, and he turned out not to know anything much about Peyronie's, so just as well I'd done it myself.

User

Posted 04 Jun 2023 at 15:46

Thanks Andy, when I emailed Darren from iMedicare he recommended SOMACorrect Xtra NHS code 15111..is this the pump you used? I think I might have to go ahead myself and buy it myself as getting an appointment is very difficult.

User

Posted 04 Jun 2023 at 17:38

I have the bog-standard SOMAerect Response II.

The SOMAcorrect is the same I think, but comes with additional narrower tubes to hold the penis straight. I didn't have or need these - mine was more narrowing than bending (called hour-glass deformity). I think you can buy the extra tubes separately to add to the SOMAerect, but if you don't have the pump in the first place, it makes sense to get the SOMAcorrect if you have Peyronie's.

You could try asking your GP to prescribe it - it is available on the NHS, but they might not be prepared to do so with a consultant's say so.

User

Posted 04 Jun 2023 at 19:56

Hi Decho,

I was prescribed the Soma Correct after a referral from the E.D. Clinic (just as part of penile rehabilitation, rather than because of Peyronie's Disease) but your G.P. may be willing to prescribe it without a referral from them.

Best wishes,

JedSee.

User

Posted 29 Jun 2023 at 18:23

Well today was both interesting and infuriating!
I decided that if I wait for the NHS to take action on what I believe was Peyronie’s disease it would be too late …and today this was confirmed. It is so important to me to have sexual function back that I decided to go private a pay for a consultation at the Spire Murrayfield who specialises in Peyronies.. And it was money very well spent! He was excellent and confirmed that if I had gone through the NHS, urology would probably have referred me to him anyway and I would have got an appointment…..after at least a year!
I showed him my photo of my wonky Willy(he was pleased I had them, I think it’s best to delete them from my phone now🤣🤣🤣!) and then he examined me and straight away confirmed that I had scar tissue at the base of my penis. He could feel it through my flaccid member …I said I had tried to check for it but didn’t know the correct way to do it so he guided me and yes, I could feel it too.

He mentioned surgery but said this couldn’t be done until the disease was stable, I am still at the active phase. He also said the success rate is not that good. TBH I am not really interested in surgery anyway. He then explained about the physical devices that could be used from imedicare, firstly the somacorrect and also the ResponseX, which is a traction device and looks like something out of a torture chamber😱

I asked about a collagenase/Xiapex injection which was on his profile and had great success rates. He said yes, but the company that manufactures them has pulled all stock from Europe, so not an option I am afraid.

now for the bit that made me REALLY angry😡 Having read on this site about people getting pumps on the NHS he said….yes, if you have Prostate Cancer and are being treated for ED, you can be prescribed the Somaerect, but as this is Peyronie’s disease, the Somacorrect is NOT available on Prescription in Scotland!
So if I’d had RARP I would have got the treatment I needed to help with sexual function(I don’t have any at the moment as it’s too painful) on the NHS, but because I have Peyronie’s disease I can’t get it…they have tried for other patients! So I have 2 choices…

1. I either pay £700 from my own pocket to buy the devices
2. I quite possibly lose my sexual function for evermore.

I’ve been back in touch with imedicare(who have been excellent) and am going to have a video consultation with them. I will see what they say about getting them on the NHS. I’m also going back to my GP once he has received the letter from the consultant and put pressure on him. If I don’t have any joy I will just have to take the hit on my wallet and buy it myself.

Those of us on HT/RT have so much to deal with the side effects that affect our QOL and I am doing SO much to try and overcome these…I knew impotence was a a possibility and can accept that, but when there’s treatment available that could help restore my sexual function , which is available and does help those who have surgery and have ED, but similar treatments are not available for those with Peyronie’s disease, almost certainly caused by HT/RT, it does seem a tad unfair.

Sorry for the rant…I will keep you posted

User

Posted 29 Jun 2023 at 19:08

Hi Decho,

I'm sorry to hear of your problems getting treatment for Peyronie's disease.

I know that you're in Scotland and that you've had radiotherapy, not surgery. I'm in England and was provided with the Soma Correct device from the NHS after Prostatectomy. However, I was surprised that you seem to have been quoted £700 to buy it privately (or did you mean to buy both the SomaCorrect and the Response X?). I understood that the Soma Correct costs about £300 (from iMedicare, I believe). I haven't developed Peyronie's disease (yet?) and I've been using it for about 8 months. I hope this information helps, but if I've misunderstood your situation, please accept my apologies.

Hope you can get a satisfactory solution.

Best wishes,

JedSee.

User

Posted 29 Jun 2023 at 19:16

Worth checking the NHS Scotland prescribing guidelines ... in England, men are entitled to a vacuum device if they have ED as a result of prostate cancer or the treatment of prostate cancer - it doesn't specify RP or exclude RT (although it is true that many GPs don't seem to realise that men on HT/RT should be referred to ED clinic)

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

User

Posted 29 Jun 2023 at 19:21

The following post is based on my experience in England, guidelines in Scotland may be different.

When you read medical guidelines you should read them as if you were a solicitor, not a medic or a patient. I learnt this from an old man who blagged his way into jumping the queue for a heart bypass. I won't go into his story, and I won't pass any moral judgement on him or anyone else.

In England if you have cancer or are suffering from the symptoms of cancer treatments, you can have free prescriptions for five years. (In Scotland and Wales everyone gets free prescriptions anyway)

During HT, I didn't have much libido or erections, but there were times when they would have been useful. My GP was happy to prescribe Viagra (and other pde-5s) before I finished HT: though they weren't very effective.

Post treatment erections were not very strong, but pde-5s were now effective. As a result I am still prescribed pde-5s. My free prescription card expired this year, but as I am still prescribed medicine for the effects of cancer treatment it was renewed without question. Which means I get all my other prescriptions free. The only problem is that I don't actually have any other health problems (I'm not a yorkshireman, but lived there long enough to pick up some of their habits, like complaining when I'm not getting something for free, even if it is because I'm in good health).

Derrick, the important thing is your ED and Peyronie's disease is caused by cancer treatment. Just because RARP is a common cause of ED, it doesn't exclude you from being treated for HT induced ED and Peyronie's, unless the Scottish guidelines explicitly state it is only for RARP patients.

Edit: just seen Lyn's post, same as mine but much more concise.

Edited by member 29 Jun 2023 at 19:23 | Reason: Not specified

Dave

User

Posted 29 Jun 2023 at 20:53

Thanks all for the support, I don’t like moaning because I feel I should be grateful for hopefully having my cancer cured. But like many others on this forum and despite my (young?) age, having a sex life is important to me and my wife. Ok we can still pleasure each other and it’s very nice, but penetration is just not possible and unless I get this fixed it never will be.

Darren(not sure if I’m allowed to mention his name?) from imedicare has been so helpful and knows my consultant well and says he is excellent. The consultant took so much time to explain things to me…but I guess that’s to be expected if you’re paying for it?

Jedsee, the £700 was for both devices and the consultant did say I might get a discount for bulk buying LOL
also I believe you can claim back VAT but not sure what hoops you have to jump through to do that.

I get my next prostap next Thursday so will ask the CNS…and I might pop into Maggies tomorrow for a chat…I always come out feeling better from there.

I am not giving up on this…yet!

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