A long and winding road.

User

Posted 11 Jun 2019 at 11:20

Hi All

My first visit here, just feel the need to engage with people in a similar situation and maybe get some feedback of other peoples experiences.

I was diagnosed in January 2019 with a Gleason score of 7(3+4) and a PSA of 75,I'm 64. They were not sure if it had infected one of the lymph nodes.There is no two ways about it I was knocked for six when they told me.This time last year I never had any idea what so ever of the position I would be in now.How life can change.WHY ME!

As treatment has progressed though things have calmed down a lot and the treatment is moving on.Been on regular HRT for 6 months now and into my 4 session of chemo and my PSA has now dropped to 0.77. Side affects have calmed down a lot and touch wood (a bit of good news) I still have my hair,on my head that is as for the rest of it,not so good.Cold capping works for me.

What is now beginning to worry me is the Radiotherapy have been reading up on the process and I'm getting the impression that this is some what hit and miss.I guess what worries me most is (the best way to put it) collateral damage.Does it ever really go away of does it just hang about for a rainy day. I understand that there are no guarantees. Still not a lot of other options. If anybody has been through this recently then I would be interested to hear of their experiences.

I can't fault my treatment on the NHS. When first diagnosed they were very quick off the mark and the treatment up to yet has been excellent. The doctors and nurses have done a marvelous job considering the amount of people they have to deal with, going by what I've seen at my hospital(The Royal Surrey).I was amazed I never knew until now.

I also have to thank my partner who has helped me through this difficult time with out her I not sure what sort of situation I would have been in right now. It was very difficult to start with and still some distance to go.

Well even though I haven't been going through the mill that long if I can be of any help to anyone who's just starting their journey I will only be to pleased to help.

JOHN

User

Posted 12 Jun 2019 at 09:21

Radiotherapy is far from 'hit & miss' these days, though - dealing with a succession of unique human beings - it'll never be a perfect science. The progress made in targeting, sparing surrounding tissue, and getting the effective dose right is really quite impressive, and whole thing is amazingly sophisticated.

The side effect possibilities - as with chemo and surgery - are pretty awful. But not everyone gets all the side effects!

And finally - lest we forget - the alternatives to these awful treatments are probably worse!

I'm not pretending that I enjoyed my radiotherapy; far from it. But I'm very glad I had it, and Madame Curie, someone who always impressed me, is now my official heroine!

Also, I found the radiotherapy staff to be very helpful and supportive, and happy to explain things - and from what I've read here, I think that's a pretty common finding. Take advantage - ask them to fill you in.

Oh, and Good Luck with it all - it sounds like you're in good hands.

User

Posted 12 Jun 2019 at 09:25

I had 20 RT fractions in March and April. First 10 no issues, last 10 I had pretty bad squits which continued until 2 weeks after the treatment ended. My Oncologist gave me fybogel to bind the poos, oddly enough my symptoms disappeared once I stopped taking the fybogel, possibly coincidence, who knows?

So 8 weeks post RT I'm feeling great, my PSA was 0.40 when I finished chemo in February, seeing my Onco again on Friday and expecting him to order another blood test and scan.

This forum is superb for help, reassurance and support.

User

Posted 12 Jun 2019 at 14:23

Hi Malcolm

How did you every guess. My era 60,70,80's just luv them.

To be honest I don't know the first thing about radiotherapy,Fractions? It's a new world to me. My Oncologist hasn't mentioned radio yet maybe to early and from what I've read online I didn't understand a word of it

I still have 2 sessions of chemo left then a break of 4 or 5 weeks then start the radio.Things just started to worry me having read things online about the outcome of the treatment. I wish I had joined this forum earlier.

Up to yet I still have all the hair on my head but as for else where that's another story

I hope everything improves with you and thanks for the reply.

JOHN

User

Posted 12 Jun 2019 at 17:59

The mucus in your poo can also take the form of 'wet farts' that can be produced to a lessening degree for several months after EBRT. Not a bad idea to have some tissue/pads or a spare pair of underpants for any occasions when you are caught out.

Barry

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User

Posted 11 Jun 2019 at 13:47

Hi John, welcome to the community. Sorry to read about your diagnosis.

Your treatment so far is doing a good job.

Most radiotherapy is delivered by IMRT machines which are extremely accurate and minimise dosage to healthy areas. There is no way to completely avoid some collateral damage but with the modern machines this should be minimal.

It definitely isn’t a hit or miss situation as you will have a planning scan where you will be marked by 3 almost invisible tattoo dots to help line you up for each treatment. Since you still have a prostate they are likely to place fiducial markers within your prostate to keep an eye on where it is each day and allow them to make minute adjustments. I had salvage radiotherapy so no markers, just the three dots but they took a scan every day prior to firing up the ray gun allowing them to make sensitive adjustments and keep you in the right spot. The radiotherapy should blast the cancer cells to oblivion!

All the best,

Ido4

User

Posted 11 Jun 2019 at 14:39

Thanks for that. What you read on line goes from one extreme to another. I know I have a couple of months to go before radio but just wanted to get some reassurance.Thought chemo was going to be a nightmare but in the end not as bad as I thought.

Guess its just what goes through your mind you try to be positive but sometimes difficult.

Thanks for the reply its always nice to know there is someone out there.

Family are OK but its more sympathy that hard facts.

Thanks

User

Posted 11 Jun 2019 at 16:27

Well , first of all are you a music lover , behind blue eyes , long and winding road , ex . How many fractions are you going to have ? Me i had 20 , had most listed side effects , i found routine best from the time i left home every day, i got there early and had a good chat with fellow patients , ended up a small family at the hospital in the end i looked forward to going ! The sessions went very quick , first 2 weeks ok but second is when the side effects kick in , always be aware where the nearest tiolet is , i got a toilet card from macmillian centre , wear nice comfortable colthes , i found joggers best . The worst side effect i had was 3 days after treatment i had AWR a listed side effect ( not all guys have it for sure ) but ended up in A/E and had a catheter for 2 weeks no problem just a bit awkward . I found since treatment now 4 months ago I am still getting tired , and lost most body hair , and put on weight thru the HT injections but hey psa down to 0.03 that’s what they go by now , I found it most helpful and reassuring that I personally know 6 guys who have been thru PCA all had different treatments . My next blood test is in September .

User

Posted 11 Jun 2019 at 23:47

It's unfortunate that there is uncertainty about the suspect node. Depending on where it is, it may be that it can be zapped along with the Prostate tumours. Did you have a bone scan and did your MRI scan the whole of your body.? It's possible that a PSMA scan which shows up areas where there are concentration of cancer* might have been helpful. Certainly, the HT and chemo apply systemically and can shrink and restrain cancer but carefully directed RT can better knock out tumours that are not widespread.

* PSMA scan generally only done privately and does not work for about 8% of men,

Barry

User

Posted 12 Jun 2019 at 00:15

I was diagnosed Gleason 4:5 March 2018, I started HT to prepare me for 20 fractions RT

We are all different, but I had the 3 tatooes, 1 on each hip and 1 on the pubic bone

I had Ultrasound supported IMRT RT. At every fraction I was lined up on the bed with an ultrasound probe pushed against my perenium, the laser type lights aligned onto my tatooes, then the live ultrasound image was overlaid on the planning CT scan. I suffered little or no collateral damage, I was warned about bladder damage and rectal toxicity. I get some minimal anal mucous discharge and some minor increased need to pee more often, 6 months after RT, but overall no major issues.

BUT we are all different and hospitals and staff are different and machines are different, so i am saying there is no hard and fast outccome to RT

User

Posted 12 Jun 2019 at 07:34

I had my RT in Feb and March this year. A few side-effects in the latter stages (most notably having to pee every hour throughout the night) but they went away quite quickly and now, almost three months after the end of RT, things are back to normal other than taking Tamsulosin to improve urine flow (radiation makes your prostate swell up which can impact urine flow).

Best wishes,

Chris

User

Posted 12 Jun 2019 at 09:21

The side effect possibilities - as with chemo and surgery - are pretty awful. But not everyone gets all the side effects!

And finally - lest we forget - the alternatives to these awful treatments are probably worse!

I'm not pretending that I enjoyed my radiotherapy; far from it. But I'm very glad I had it, and Madame Curie, someone who always impressed me, is now my official heroine!

User

Posted 12 Jun 2019 at 09:25

So 8 weeks post RT I'm feeling great, my PSA was 0.40 when I finished chemo in February, seeing my Onco again on Friday and expecting him to order another blood test and scan.

This forum is superb for help, reassurance and support.

User

Posted 12 Jun 2019 at 13:33

Yes it all takes time.I was going to the gym before I started treatment but after the first session of chemo I just couldn't manage it my joins were aching and everything chore just sapped the energy out of me .Even doing some basic things were a task.

But things are getting easier but will not be returning to the gym until this is over as I don't want to take the chance with anything else.

I hope everything goes OK with you and let me know how you get on.

JOHN

User

Posted 12 Jun 2019 at 13:43

Hi Jasper

Thanks for the reply. I still have 2 sessions of chemo to go, then 4 or 5 weeks off then start the radio. My Oncologist hasn't mentioned radio yet probably to early yet.

Some of the things I have read on line got me wondering about collateral damage I was getting the impression it wasn't very precise.For some it does seem to have been to bad and for others, well just leads to other problems.

Glad to see your almost over yours and glad it all went OK.

As for the forum couldn't agree more with you I've learn't a lot on here only wish I had joined earlier might have saved a lot of worry early on.

JOHN

User

Posted 12 Jun 2019 at 13:58

Thanks for the reassurance you do read some stories online that didn't build my confidence at all.

I have two sessions of chemo left and as each one passes the easy they get easier. When they first started I thought OMG how am I going to cope with all this but that's changed now. After the chemo I then have to wait 4 or 5ed weeks before the radio starts.

When I first attend chemo it was a little daunting so I guess I feel the same about the radio.

I agree the alternatives don't sound at all good, not that I would refuse the radio due to them. A last resort I guess.

Thanks for the confidence boost as I get more positive replies it lifts some of the pressure.

JOHN

User

Posted 12 Jun 2019 at 14:07

Hi Chris

I posted this because I was being to get worried about the radio, you read so many stories and not all good. I wish I had joined this forum earlier it my have saved a lot of worry.

I have two sessions of chemo left and then a 4 or 5 week break. Up to yet I haven't had any information regarding the radio from my Oncologist maybe it's to early.

I'm glad to hear that everything went OK with you, form what I have read on hear it's looking brighter

Thanks for the reply.

JOHN

User

Posted 12 Jun 2019 at 14:23

Hi Malcolm

How did you every guess. My era 60,70,80's just luv them.

Up to yet I still have all the hair on my head but as for else where that's another story

I hope everything improves with you and thanks for the reply.

JOHN

User

Posted 12 Jun 2019 at 14:32

Hi Chris

Thanks for your reply. I do wish I had joined this forum earlier as some of the things I have read online were beginning to worry me a little but the majority of replies like yours make me feel all the more optimistic.

I still have two sessions of chemo to go then a 4 or 5 week break. I know nothing about radio and didn't understand much when I googled it. My Oncologist hasn't mentioned it yet maybe it's to early.

I'm glad to hear everything went OK with you and again thanks for the reply they all relieve some of the stress something else I don't need.

JOHN

User

Posted 12 Jun 2019 at 16:27

"Fractions" just means the number of sessions the radiation is delivered over. I had 30 fractions, so my treatment took 6 weeks (five sessions a week, Mon-Fri, for six weeks); other common numbers of fractions are 37 and 20. Everyone's RT is tailored for them specifically, so your treatment might be a bit different to someone else's.

The basic procedure (in my case at least) is that you go in for a planning session at which point they scan you and then tattoo three dots on you - one at the top of each leg and one in the middle, over the pubic bone. These are what are subsequently used to line you up correctly in the treatment machine. Then for each session I was asked to arrive at the hospital 45m before the time of my session and use a "micro-enema" to clear out my lower bowel (to minimize radiation damage). This took about 15m to work. Finally, 20m before my session, I had to empty my bladder and then drink three cups of water. This ensures that your bladder has a (more or less) measured amount of liquid in it during the procedure, which lifts it clear of the prostate and again minimizes radiation damage.

Radiation irritates the bladder and makes you want to pee a lot, so you'll probably be advised during the planning session to cut out caffeine and alcohol for the duration of the RT (both are bladder irritants, so make the side-effects worse). I was also advised to go on a low-fibre diet (no brown bread, etc), but don't change your diet without advice; you should be told all this during the planning session.

I really didn't find RT too awful an experience at all. The side-effects for the final couple of weeks were a nuisance (I had to make two loo-stops during my 40 minute journey to the hospital!) but I didn't experience any diarrhoea, I just started passing a bit of clear mucus. The side-effects reach their peak about 10-14 days after RT finishes, but in my case they then quickly eased. Within 6 weeks of ending RT they'd pretty much all cleared up.

Hope that's of some help, and please do ask if you have any questions!

Best wishes,

Chris

User

Posted 12 Jun 2019 at 17:59

Barry

User

Posted 13 Jun 2019 at 11:16

Hi Chris

Thanks for all the information looks like your treatment went very well. I'm just hoping mine does. I know we are all different and what was good for you my not be for me but I'm keeping the faith.

After reading a lot of the posts on here I'm feeling a lot more optimistic. Like I said I've got 2 sessions of chemo left and then a 4 or 5 week break, going away for a week I need a holiday. My last session of chemo seems to have gone very well and seem to have very few side affects, hair still attached. Did have a slight accident in the hospital toilet which took a little cleaning up I was getting a little desperate at the end of my session, still just some of the things I will have to get used to. If the rest go like this I will be well pleased.

Been thinking about trying Tena pants for men have sent away for a sample pack and give them ago. They will do a lot for my image. Still who's going to know! Anything is worth a try.

Again thanks for all the information you sent me it's answered a lot of my questions and perked me up.

Thanks

JOHN

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