Unconventional Whole Pelvic Radiotherapy

User

Posted 05 Jun 2022 at 16:37

Hi everyone I am new here. my husband has had PCR for 15 years now, diagnosed age 50. he had TURP Radiotherapy and Hormone block aid , 10 years later he was referred to London for Salvage Radical Prostatectomy Bladder neck removal and a year later had and an Artificial Urethral Sphincter fitted. His PSA was ok for about 19 months post surgery but has slowly gone up over the last 2 years . PMSA scans in January show PC in Pelvic left iliac lymph node chain and also Mets in L5. He is back on Prostap and is about to start Unconventional Radiotherapy to Whole Pelvic area including L5. They will map around his previous Radiotherapy so not to overlap . We are so grateful for this opportunity on the NHS.

Has anyone else had Unconventional Radiotherapy or Whole Pelvic Radiotherapy if so how was the treatment ?

Any help or advice also on sleep as such a problem getting off to sleep or waking up for long periods in the night also pain down his legs which he had before and is not related to L5.

Thank you

User

Posted 05 Jun 2022 at 21:48

Hi, That's an interesting treatment path, they're pulling out the stops which is great to read.

I read an article that mentioned whole pelvic radiation as a good option. Can't say I've absorbed it as yet. It's here>

https://www.prostatecancer.news/2022/05/spport-trial-whole-pelvic-salvage.html?m=1

Edited by member 05 Jun 2022 at 22:43 | Reason: link fixed

User

Posted 06 Jun 2022 at 01:25

I discussed this sort of treatment theoretically with an Oncologist at the Royal Marsden several years ago. He said that they would need to know the treatment paths of prior RT to avoid these, also that there was a limit to the amount of RT that could be given. A changed diagnosis meant this was dealt with another way in my case so was not pursued.

Edited by member 07 Jun 2022 at 01:25 | Reason: spelling

Barry

User

Posted 06 Jun 2022 at 08:32

Thank you Peter that's a really interesting & encouraging research paper . I had been unable to find anything.

They told my husband he will be on ADT (Prostap )for 2 years. so really hitting it hard.

Also informed him the treatment is not a cure , aim is to target the lymph nodes and L5 but it would also hit any micrometastasis.

My husband is worried about side effects of the Whole Pelvic Radiotherapy, he has to have an enema every day for 6.5 weeks to make sure bowel is clear near left iliac lymph node chain to make sure the radiotherapy is consistent .

Its all a bit daunting we will be away from home staying in London hotels not ideal but so grateful for the treatment.

Barry. Yes they have the old treatment plans to make sure they do not overlap his previous radiotherapy .

I hope your alternative treatment worked for you

Edited by member 06 Jun 2022 at 08:34 | Reason: Not specified

User

Posted 06 Jun 2022 at 09:46

There is a bit of a naming issue here.

Whole Pelvis radiation means something different to urology/oncology than it does to radiography.

The urology/oncology meaning is usually prostate, seminal vesicles, and pelvic lymph nodes (or prostate bed instead of prostate and seminal vesicles in this case I guess).

The radiography meaning is a palliative treatment to the pelvic bone at a much lower dose. I don't think this is the intended meaning here but just beware in case you're searching on Google.

I had prostate, seminal vesicles, and pelvic lymph nodes zapped with external beam radiotherapy as my primary treatment. Prostate and seminal vesicles were done to 46G, and I'm not sure about pelvic lymph node dose, but if it was the same, that would almost match the 45Gy that paper suggests. (My prostate alone was then boosted to 61Gy with HDR Brachy.)

I'm not aware of any side effects from the radiation to my pelvic lymph nodes (I'm almost 3 years past treatment now). I recall raising this as a concern beforehand (things like lymphodema), and I think the oncologist said he'd never had any patients with side effects from this reduced radiation dose to lymph nodes. I'm just not completely sure what the planned dose for my pelvic lymph nodes was.

User

Posted 06 Jun 2022 at 10:18

My husband had TURP and radiotherapy to prostate &seminal vesicles when was was first diagnosed they did not treat lymph nodes then.

I guess the radiotherapy now is classified salvage whole Pelvic radiotherapy.

It's what the consultant refers to it as so guess they know.

Only Google proper research medical paper.

User

Posted 06 Jun 2022 at 20:56

I had "whole pelvis" RT because my oncologist was concerned about undetectable micro mets in the lymph nodes because my PSA was regarded as anomalously high for the cancer that the biopsy found. Three and a half years later and all ok thus far.

Cheers,

Chris

User

Posted 06 Jun 2022 at 20:59

Thank you Chris, great to hear your doing so well.

Did you have many side effects while under going the Whole Pelvic radiotherapy?

User

Posted 06 Jun 2022 at 21:37

Just the usual ones. Irritated bladder for the last couple of weeks of treatment. Settled down about a month after treatment ended. Bowel issues took longer to settle - about a year in total. That's typical for all forms of prostate RT.

Chris

User

Posted 06 Jun 2022 at 21:50

Thank you so much Chris

Hubby is feeling a lot better about upcoming treatment.

Planning CT is next week and he starts treatment early July. I will update later

User

Posted 03 Aug 2022 at 15:25

Update

Well the radiotherapy nearly did not happen the planning was very difficult and it took them hours to do. It was cancelled just 4 days before hubby was due to start treatment. So stressful as we had hotels booked and had to cancel to give the team more time.

Thank goodness they were able to do it, planning avoiding overlapping last treatment was very difficult.

They reduced the treatment time to 5 weeks and a lower dose basically the same as they do for women with gynaecology cancers, apparently the dose can be lower as he doesn't have a solid Prostate to get through.

Radiotherapy to whole pelvis which goes upto L5. So the metastases that is there is included.

Hubby is mid week 4 just starting to get nausea & diarrhoea medication is helping.

The processors blew on they servers in the extreme heat and he missed 2 treatments but they have done one catch up on a Saturday and one extra booked for end of treatment.

The staff are all lovely and so greatfull for all the care he is receiving.

User

Posted 03 Aug 2022 at 21:54

Glad to hear it’s going ok. Side effects usually peak about 10-14 days after treatment ends, but should then subside relatively rapidly.

All the best,

Chris

User

Posted 05 Aug 2022 at 20:59

Thanks Chris it good to know what to expect from someone who has been through it.

Hubby has changed his diet to stodgy bland diet white bread ,rice , pasta , chicken & bananas it seems to be really helping in combination with anti emetics & Imodium .

Home now for the weekend and ironing like a demon :)

User

Posted 01 Dec 2022 at 09:04

Great news recent PSA 0.01 GP did full blood count recently , hubby found to be Anaemic his HB has dropped from 165 to 128 and Leucocytes down to 0.6 his Hematocrit is also a bit low. GP has booked an appointment for my hubby to see him later this month , but I am thinking its probably down to the Pelvic Radiotherapy

Anyone have any knowledge of Anaemia post pelvic radiotherapy. When he spoke to Oncology Nurse to get his PSA results she was in a rush and just said let the GP sort it out.

He is also on ADT Prostap which causes a drop in HB just seems a big drop he does get short of breathe on exertion.

He is having a caffeinated coffee in the morning which is really helping with his energy levels in the day time.

A goodnights Sleep is always a problem with hot flushes and legs pains , occasionally he will take a Piriton tablet and 2 paracetamol and this seems to knock him out for the night but can make him feel tired the next afternoon.

Anyone have a tips for helping with sleep ? do any off you get legs pains with the hot flush?

Always grateful for any advice

User

Posted 02 Dec 2022 at 05:05

I had similar treatment in terms of the RT and ADT. Anxiety about sleep can be as significant as the lack of sleep.

Things that might work ... get up when he can't sleep at night. I often get up around 2am, have a hot drink, maybe a short read and then return to bed. It helps stop the head just churning junk. I also worry about waking my partner when I'm half awake, so it can help to sleep separately for a few days if the lack of sleep has gone on for a while. I found I got quite wired if I didn't sleep for a couple of days, which compounded the problem. If it's not a nuisance to you, he might find listening to something bland on the radio could help. The ABC here in Australia has various late night presenters who are excellent at putting people to sleep. Music can work too.

Keep the bed cool and maybe allow for something poised at the foot of the bed to pull up in the cool o the morning.

Leg pain and hot flushes gradually decreased for me but everyone is different. It might help to have something to keep his legs warm even if you're keeping the bed cool.

Jules

Edited by member 02 Dec 2022 at 14:36 | Reason: Not specified

User

Posted 13 Dec 2022 at 22:34

Hubby has been sleeping in another bedroom since the start of ADT., At times his sleep is very disrupted and like you say it can be exhausting. he does have a light 7 tog quilt ( light for UK winters) .

It does feel quite lonely but its so important that he is able to relax and not worry about disturbing me.

He has some headphones for listening to podcast also a big fan of Terry Pratchett books.

Good to hear your leg pains and flushes have improved.

GP appointment next week re Anaemia & B12 slightly abnormal so hope he will get some more answers then.

thank for your support

kind regards

Julie

User

Posted 24 Jun 2023 at 08:48

It is coming up to a year since salvage radiotherapy.

Hb back to lower but normal levels

PSA 0.01 The best it has been for years.

Still on Prostap for another year.

So happy with treatment all I can say is if anyone has the chance of salvage radiotherapy go for it.

User

Posted 24 Jun 2023 at 09:48

Great to hear that he is doing so well Julie. It’s always at the back of my mind that there were some undetected mets - I was suppose to have 39 fractions to treat the whole pelvic area but Onco thought it was too risky because of the position of part of my bowel. So it was 20 sessions treating only the prostate and seminal vesicles…..and now I guess it’s just a waiting and hoping game.🤞🤞🤞

All the best for the furture.

Derek

User

Posted 25 Jun 2023 at 21:28

Thank you Derek and all the best to you 🤞.

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.

Notification

Unconventional Whole Pelvic Radiotherapy

Join the online community now.