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My hormone/radiotherapy (HT/EBR) journey

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User
Posted 08 Jan 2020 at 23:57

Ok, hello again all.  Have opened a couple of threads before but thought I'd now concentrate my attention on a "journey" thread as others have done before me, in the hope that it may be useful to any new members coming along after.  Mine will focus on the hormone/radiotherapy (specifically External Beam Radiotherapy (EBR)) route, so surgery will not feature.


To briefly recap, diagnosed Jan '18 with Gleason 6 (3+3) low risk tumour.  Put on active surveillance.  Routine MRI Oct '19 identified new problem, transperineal biopsy mid-Nov '19 confirmed new large and moderately fast growing tumour Gleason 8 (4+4), T3aN?.  Question mark because though follow up full body bone scan was clear, the Oct MRI suggested possible spread to local lymph nodes.  To cut to the chase many appts followed and I decided on the HT/RT route.


Saw oncologist today (08/01/20) and confirmed my treatment choice.  Prescribed 28 days Bicalutamide 50mg, to start taking after a PET scan of my lymph nodes on Friday (10/01/20).  Given a letter for my GP for them to order in Zoladex and commence injections on 24/01/20, and at three monthly intervals thereafter for a period of three years as my cancer is deemed high risk.


Repeat appt booked for oncologist on 29/01/20, by which time PET result will be available and they can settle on RT plan - ie. targeted on prostate only, or wider application to include lymph nodes too.  Will also receive an invitation to a radiotherapy seminar for new patients before treatment commences.  Will no doubt cover what the treatment involves plus what side effects to expect and measures can be taken to counteract them - diet, exercise etc.


As an aside I have also been asked to participate in the UK Genetics Prostate Cancer Study (UKGPCS), which is recruiting 26,000 men and aims to discover why prostate cancer develops.  Will be interviewed about family history and lifestyle factors and will provide a DNA sample.  Every little helps as they say.
Anyway, that's it for now.  I will report back to this thread now and again on how I'm getting on with the HT/RT treatment purely in the hope it may prove useful to others to come.


All the best!

User
Posted 08 Jan 2020 at 23:57

Ok, hello again all.  Have opened a couple of threads before but thought I'd now concentrate my attention on a "journey" thread as others have done before me, in the hope that it may be useful to any new members coming along after.  Mine will focus on the hormone/radiotherapy (specifically External Beam Radiotherapy (EBR)) route, so surgery will not feature.


To briefly recap, diagnosed Jan '18 with Gleason 6 (3+3) low risk tumour.  Put on active surveillance.  Routine MRI Oct '19 identified new problem, transperineal biopsy mid-Nov '19 confirmed new large and moderately fast growing tumour Gleason 8 (4+4), T3aN?.  Question mark because though follow up full body bone scan was clear, the Oct MRI suggested possible spread to local lymph nodes.  To cut to the chase many appts followed and I decided on the HT/RT route.


Saw oncologist today (08/01/20) and confirmed my treatment choice.  Prescribed 28 days Bicalutamide 50mg, to start taking after a PET scan of my lymph nodes on Friday (10/01/20).  Given a letter for my GP for them to order in Zoladex and commence injections on 24/01/20, and at three monthly intervals thereafter for a period of three years as my cancer is deemed high risk.


Repeat appt booked for oncologist on 29/01/20, by which time PET result will be available and they can settle on RT plan - ie. targeted on prostate only, or wider application to include lymph nodes too.  Will also receive an invitation to a radiotherapy seminar for new patients before treatment commences.  Will no doubt cover what the treatment involves plus what side effects to expect and measures can be taken to counteract them - diet, exercise etc.


As an aside I have also been asked to participate in the UK Genetics Prostate Cancer Study (UKGPCS), which is recruiting 26,000 men and aims to discover why prostate cancer develops.  Will be interviewed about family history and lifestyle factors and will provide a DNA sample.  Every little helps as they say.
Anyway, that's it for now.  I will report back to this thread now and again on how I'm getting on with the HT/RT treatment purely in the hope it may prove useful to others to come.


All the best!

User
Posted 23 Aug 2020 at 12:01
These side-effects are very, very common and they should quickly start to ease within the next few weeks. Side-effects generally peak about 10-14 days after treatment ends. For the peeing issues, ask your GP or hospital for a prescription for Tamsulosin - it worked wonders for me and is the only medication I'm still on 18 months after finishing RT. It should get rid of both the flow issues and the feeling of being unable to empty your bladder.

The bowel issues took a bit longer to go away for me, but within 3 months of treatment ending the "wet farts" were probably down to once every few weeks and within a year they'd entirely ceased. 18 months on I'm left with a somewhat increased frequency compared to pre-RT, which my consultant says will be with me for life, I see a bit a clear mucus on the TP once in a while, but that's really all. Certainly nothing of any significance.

The mental aspects of finishing RT can be overlooked. You've been made a fuss of and looked after for a couple of months and then suddenly it all stops. It may sound weird but I was quite upset on my last day of RT - I almost felt abandoned.

Things will get better, I promise you. This is the toughest time to get through, but in a month's time you'll be through it and well on the road back to normality.

Very best wishes,

Chris
User
Posted 20 May 2024 at 19:46

Well it's been a long while!  Had my latest six month review.  PSA 0.02, good for most men less relevant for me as my tumours were non-secreting. I've never had an abnormal PSA result.  Because of that the first two years after RT I had a bone scan and a thorax and abdomen CT scan.  Then last year the bone scan was dropped and just had the CT.  This year that was dropped too.  Oncologist said was due to concern about radiation toxicity, but given the current state of the NHS I wonder if it was down to cost.  Anyway I expressed my concern and she's sending me for a CT in November.


 


On a positive note I have testosterone!  Six months ago it was "undetectable" but I now have a mighty 1.9 nmol/l.  Well, it's not much but it's a start.  Hopefully I'll be up in the normal range in time for my next test in six months.  I still have zero libido and 100% ED, plus no energy and can't lose body fat, but I'm trying to stay positive.  It's been a long slog since Jan 2020 when I started HT.  Over four years without testosterone really does a number on you.

User
Posted 21 May 2024 at 19:02

Originally Posted by: Online Community Member


I'm on the verge of starting Zoladex. 2 years has been recommended but I don't think I can manage that. It's seems to me that ADT is the worst thing about all of the treatment options.



Hi.  I have to say if I knew then what I know now, especially the long term negative impact it would have on my life, I would never have agree to three years on Zoladex.

User
Posted 09 Jan 2020 at 07:57
Best of luck. I found my RT relatively problem-free. Hope yours goes smoothly, too.

Best wishes,

Chris
User
Posted 09 Jan 2020 at 09:22

Best of luck with the HT and the RT. Once you start on the bicalutamide/Zoladex your cancer will shrink as it is starved of testosterone.


It’s good you have been recruited to the genetic study, this will help future patients but also give your doctors more information about you which may be useful.


 

Ido4

User
Posted 09 Jan 2020 at 09:48

Good luck Bean.


My place (Mount Vernon) includes pelvic nodes and seminal vesicles in the RT treatment for all high risk diagnosis even when no spread is visible, because you can't go back and do them later.


If you are anywhere near Mount Vernon (Rickmansworth, M25 J18), next Wednesday, I'm running a session which might interest you:
Surviving Hormone Therapy (ADT) for Prostate Cancer Patients


See my earlier post for details.

User
Posted 10 Jan 2020 at 10:41

Good luck. Same treatment path that I took. If anything I found the HT worse in terms of side effects than the EBRT.

User
Posted 31 Jan 2020 at 21:37
Same EBRT treatment I had. In my case, because of my relatively high PSA (32 at diagnosis) they thought there may be undetectable spread to the lymph nodes.

Best of luck with your treatment. You should see a dramatic fall in your PSA now you're on HT.

Chris
User
Posted 31 Jan 2020 at 22:45

Stephen, I think you made the right choice.
If you just did prostate but it turned out to be in lymph nodes too, that might then not be curable.


I had pelvic lymph nodes done too for same reason, although they got a lower dose in my case (46Gy).


And by the way, something is going on. The hormone therapy is reducing your PSA (or more specifically, the activity of prostate cells), which improves the effectiveness of the radiotherapy.


Now is the time to start working on your pelvic floor exercises too, and getting fitter if you can.

User
Posted 06 Feb 2020 at 20:34

Hello Old Bean
your profile looks just like mine I am almost nine years Dia/2011
Have a look at my profile ,it may give you some help .
Any questions I will try to help
Barry

User
Posted 19 Feb 2020 at 21:24

Hi Bean121. My case seems fairly similar to yours. I was diagnosed in Oct/Nov 2017 and had been on AS until about March 2019. I had my second biopsy on 1st. June (Uro had said "If this goes well, you shouldn't need another biopsy for four years and then another one in seven years after that!") Famous last words? When I got the results, it appeared that I needed some treatment. His registrar was too scared to tell me anything other than that, so I saw him (Uro) again in August (he had been on annual leave), when he told me that I needed some Brachytherapy. He arranged for another mpMRI (21st September 2019), just to check that I did need Brachytherapy, but when I finally got the result from the MRI on 6th. January this year! He said "Oh no, it's too late for Brachytherapy now, so you'll need some EBRT". Well I finally saw the Oncologist yesterday and am now also on the Bicalutamide. With implants to look forward to in four weeks and implants from then on, with RT starting in June. (Do they carry on with the HT, whilst also giving you RT, or does one stop while the other continues?) I haven't been told anything about more than 20 fractions being offered, but that I too, will need a bone scan, as the cancer is now growing out the back of my prostate and heading for the bowel and bones! Due to lack of information being given yesterday, (Oncologist likes to give information out, but doesn't like many questions), I will probably be spending a lot of time on the helpline number he gave me. (Based at the same hospital). I did try, like you have, to post about my treatment and 'journey' yesterday, but the page just kept saying 'page unavailable' or something like it, so have posted here instead! I don't think my cancer is in any lymph nodes yet, so maybe that's why they're sticking to the lower amount of RT fractions at the moment. I just hope that, since my MRI was nearly six months ago, that things downstairs haven't grown or changed that much since! Not looking forward to the Zoladex, as I hate side effects! Hope you are still doing well.

User
Posted 10 Jun 2020 at 15:05
I don't know about prostate and LNs, but I previously had a melanoma which was found to have spread to the LNs in my left armpit on biopsy. As I understand it, once in the LNs the cancer can spread around the body, so I find it hard to believe that there is no difference in survivability. There certainly is with other forms of cancer (breast cancer can hit the same LNs with pretty much the same result), because I read dozens of reports about it.
User
Posted 23 Jun 2020 at 01:24
I don't follow the reasoning earlier in this thread which if I understand it correctly implies that if you want the lymph nodes included you have 37 fractions but if the lymph nodes are excluded you have 20 fractions. This is not a reason for the difference in fractions administered.

In 2007 when I was diagnosed with PCa which the surgeon considered to be too far locally advanced for him to remove all the cancer surgically I was offered EBRT instead. I was offered the standard 37 fractions or to enroll in the CHHiP trial where men were randomized into 3 arms. The first was the standard 37 fractions at 2Gy = 74 gy. The second arm was 20 fractions with a total dose of 60 Gy with a 3rd arm of 19 fractions and total dose of 57Gy The Chief Investigator was Professor D........ at the Royal Marsden where I was to be treated. I have the trial papers in front of me now which sets out the criteria and aims and possible benefits and disadvantages. There is no suggestion that one arm might be more appropriate to treat lymph notes than another and that was not suggested when I asked questions at the time. As we know, over time the trial results showed little difference in effectiveness between arms 1 and 2 in terms of successfully treating PCa and attendant side effects. The 20 fraction option which meant reduced visits for patients and less hospital time subsequently received approval and has become increasingly adopted.

Being Perverse (but not foolish I believe), I opted for something quite different to any of the above but that's a different story!
Barry
User
Posted 23 Jun 2020 at 13:21
Yes, I don't think it is that straightforward either - John had 20 fractions at 3.2Gy in 2012 as part of the trial and his lymph nodes & the bottom of his bladder were zapped. The trial found that fewer fractions at a higher dose was just as effective but with fewer side effects - until they get up to 3.4Gy and above where the side effects became progressively worse.

Now 20f has become mainstream, it seems (from posts here) to come down to oncologist preference whether to go with 20 or 37?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jun 2020 at 21:45
May just be your onco's approach or a local CCG protocol, Bean
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jul 2020 at 20:00

Stephen,


We were told not to change diet initially. If you start to get loose bowels (which almost everyone did), then you cut down on fibre. A few people have the opposite problem, constipation, and may need to add fibre.


For low fibre,
avoid fruit except peeled apples, peeled pairs, and bananas;
avoid veg except peeled potatoes;
avoid brown flour, brown bread, brown pasta;
avoid bran Including breakfast cereals containing it. (Corn Flakes is one of the lowest fibre cereals.)
Don't do this all in one go in case you get constipated, scale up as necessary.


Skin around the X-ray entry/exit area needs special care. This is a band around your body from your naval down to your penis, and includes your arse crack. Use plain soap when washing, not scented. Don't use any other skincare products without getting permission from the radiotherapists. (Products with metals such as zinc are ruled out.) Don't rub the area - wash using hands, not flannel, and dab dry gently. Don't soak for a prolonged time (no long baths or swims). Do use sun tan when out in the sun, even under a T-shirt (which let UV through) for a year. Check any folds of skin for any infection, and ask radiotherapists for medication to apply if that happens. I didn'r have any problems with skin. Pubes in the X-ray entry/exit area fell out a couple of weeks after treatment, but regrew afterwards.


Stay well hydrated, so you are washing plenty of water (well diluted urine) through your bladder.


Get working on your pelvic floor exercises. Alcohol, fizzy drinks, caffeine, and concentrated urine (dehydration) might cause bladder spasms (urgency to go before your bladder has filled up). Cranberry juice may be beneficial in reducing chance of urinary infections (beware of sugar content - there are low sugar types), although too much of this and many other juices can make urine more acidic (I drunk it very well diluted).


This is what I remember from my session. They also told us not to ride a bicycle. I'd already bought a noseless saddle, and they said that was fine. My onco thought the not riding a bike was OTT.


Good luck.

Edited by member 12 Jul 2020 at 23:25  | Reason: Not specified

User
Posted 12 Jul 2020 at 23:59
As someone else has said, it is really important not to change your diet significantly unless the radiotherapy team tells you to. Alcohol, caffeine & fizzy drinks are a bit different - I think almost all hospitals seem to ban these for the duration of the RT, mainly because they cause gas, and gas is the enemy of the radiotherapist.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jul 2020 at 13:20

I found it very helpful that the side effects didn't start for the first week and a half. The too full bladder issue hit me one day, when one of the machines had broken down and I had to wait another 15 minutes! But they didn't tell us that until going to the, still working machine! They let me pass some of it out, which (they said) didn't make too much of a difference, or I would definitely have watered their table! I am now 17 days post RT and am glad that the side effects are receding fairly quickly! Good luck with yours!

Edited by member 24 Jul 2020 at 13:21  | Reason: Not specified

User
Posted 24 Jul 2020 at 13:22

Pleased to hear everything going along ok with your EBRT Bean.  My husband had his fourteenth today and all going ok.  Just slight problem with hernia getting in the way on one occasion, diarrhoea for a day (which may not necessarily have anything to do with treatment) which in turn affected his piles but soon eased.  We can’t believe he only has six more to go and it’s the weekend so two days off now! He received a call from the radiotherapy nurse last Tuesday to check how he was feeling, which was not expected, and the staff have all been wonderful.


Good luck with the rest of your treatment.


Angex


 

User
Posted 24 Jul 2020 at 13:51

Originally Posted by: Online Community Member


Started my 20 fractions Wednesday 15th.  Had the eighth one this morning and so far all has gone very smoothly.  Only two minor bladder issues (too full one day, not full enough another) and difficult to believe I'm nearly half way through.


No side effects so far, other than any physical exertion is starting to make me feel weak and tired, but it's manageable.  Suppose I'm approaching the point now where others might kick in.



You may find the bladder problems gets a bit worse as time goes on, the nerves get disturbed. I had a few gripes from the Radio - therapists, but never so little in the bladder, that they felt it was unsafe to go ahead. You now have the weekend to rest, take it very easy & be spoilt is my advice - if there is someone to spoil you.

User
Posted 31 Jul 2020 at 22:18

Here’s hoping you remain relatively free of side effects.

Ido4

User
Posted 01 Aug 2020 at 12:58

That's amazing. Having been there, done that, I wouldn't wish those side effects on anyone! So hopefully you'll come out the other end with never knowing them. Good luck for your last week!

User
Posted 11 Aug 2020 at 19:10

Congratulations on finishing your radiotherapy sessions. It sounds like you have done well regarding side effects, hopefully that will continue. Best wishes, 

Ido4

User
Posted 11 Aug 2020 at 19:44

Congratulations. Symptoms can get worse over next couple of weeks - they lag behind treatment, but hopefully you'll continue sailing through.


One issue is that it can all suddenly feel like an anticlimax - having been treated and fussed over daily for weeks, suddenly everyone's forgotten you and you might feel a bit lost. There are Macmillan classes (such as HOPE) which are intended for you now. Some places are doing these over Zoom, so do ask your Macmillan centre. It takes a while to realise that you've finished the treatment for what you've been worrying about over the last several months (well hormone therapy trundles along for a while yet).

Edited by member 11 Aug 2020 at 19:48  | Reason: Not specified

User
Posted 11 Aug 2020 at 20:02

Well done it sounds like you did even better than me. I finished the RT two weeks ago and as Andy says my side effects have actually worsened, still manageable though.


              Bill

User
Posted 22 Aug 2020 at 21:43

Hi Stephen, sorry to hear of the side effect problems. I was much luckier than you, because most of my RT was brachy with only a little EBRT. I think these problems will get better reasonably soon, and the good news is at least they didn't kick in until end of treatment, trying to manage the side effects and make your way to daily treatments at the same time would not be good. 


I like alcohol, fortunately I can take it or leave it. I think it is good that you were able to stop during your treatment. I can understand the mental health problems, Covid lockdowns are not good for us. 

Dave

User
Posted 23 Aug 2020 at 12:14

Chris is spot on - the sudden loss of the daily attention and treatment feels like you've been forgotten.


It takes a while before your side effects go and realise your treatment is done and you can need to start planning the rest of your life, hopefully cancer free.


There are a couple of courses which many cancer centers run for this post treatment period, such as HOPE. Contact your cancer/Macmillan centre and ask if they are running them. Some are doin so over Zoom at the moment.


Also note that hormone therapy does make you more susceptible to depression. You should reach out to your mental support network or GP. Have you made contact with a local prostate cancer support group? These can be really helpful, not to mention you may make some really good new friends, and you can support each other through down times and benefit from each others support. This is all more difficult due to COVID, but many groups are meeting up in small numbers and/or online.

User
Posted 23 Aug 2020 at 18:15
I do understand exactly what you mean, Stephen. I had the same feelings myself. You've had weeks of being supported every day and then suddenly you're all alone. It can be a very lonely feeling. You need to know, though, that you're not alone; there are people here who've been through the same thing and we'll do our best to help!

Take care of yourself,

Chris
User
Posted 23 Aug 2020 at 18:29

Bean121


Exactly the same experience of finishing SRT. Although round trips got a bit tedious and it was only 90 minutes there and back, I did miss the routine of daily treatment. I think in general radiology staff are kind and caring.


Hope all goes well with your recovery. 


Thanks Chris

User
Posted 17 Oct 2020 at 00:47

Stephen,


You need to be doing exercise while on hormone therapy - that counters the fatigue.


I take part in a cancer gym class, which has moved on to Zoom since COVID, and cycling.

Edited by member 17 Oct 2020 at 07:03  | Reason: Not specified

User
Posted 17 Oct 2020 at 11:43

PSA response is great Stephen. HT does cause fatigue but can be mitigated with exercise.

Ido4

User
Posted 19 Oct 2020 at 09:11

Originally Posted by: Online Community Member


Hi  Stephen, just read your thread as I am gathering info for tips etc before my husband starts RT next month. Very helpful so thanks to everyone that posts.


He is to have 33 sessions, I see most folk mention 20/37 sessions so I wonder why 33?? Will ask at planning appointment next week.


Take care.



There are many  factors, that make the number of fractions different - I had 20 at Addenbrooks, which were not pleasant - but am well on the road to recovery now, 12 months later. Left off HT from May.


Factors, such as location, size & number of Tumours all play a part, there are many other considerations.

Edited by member 19 Oct 2020 at 09:12  | Reason: Not specified

User
Posted 19 Feb 2021 at 12:04
Try cranberry juice, Stephen. I had burning pain while peeing after I finished RT, caused by bladder irritation, and cranberry juice worked wonders for me in calming it down. Just the normal made-from-concentrate stuff from the supermarket.

Best wishes,

Chris
User
Posted 20 Feb 2021 at 21:38
Cranberry juice from concentrate isn't really good enough; try either fresh pure cranberry juice from the supermarket OR buy bags of frozen cranberries and zap them up yourself OR buy cranberry extract tablets (from a health food shop like Holland & Barrett or from the women's health section at the supermarket. Also try cutting out caffeine completely for a couple of weeks.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 26 Feb 2021 at 20:00

Hello Stephen


I’ve been following your thread since last summer, as your journey runs about three months ahead of mine. I have learnt so much from you and from many others on the forums – thank you to all. Now I’m posting for the first time. 


 


You ask how much people drink, though I think you were referring specifically to cranberry juice. My answer is about water. 


I aim at 1.5 litres/day. My nurse specialist told me to keep well hydrated for a healthy, well-functioning bladder, and I’ve followed her advice ever since, including during the EBRT weeks and since finishing. I still get bladder frequency and urgency, but it’s manageable, and I’ve never had burning or other discomfort. I believe my hydration regime has helped not only with urinary health but with general fitness and energy. I scale it down in the evening, but rehydrate on getting up in the morning.


I am light for my height, so 1.5 litres daily is about as much as I find comfortable. If you are more heavily built, you could possibly aim at 2 litres/day. (Or perhaps you do already?)


 


I am sorry to read about your fatigue. I realise you know all about exercise being recommended, so perhaps there’s another cause, or it’s a combination of things. The 4.5-mile walks sound excellent on the face of it, but if it’s still a struggle you could try doing things differently. Maybe try some exercises you can do at home, gentle at first, building a routine that suits you. 


Since my diagnosis I’ve made a big effort to maximise my fitness. Simple stretches first thing every morning, strength and flexibility exercises mid-morning. Our Living With and Beyond team sent me an exercise video, and I developed my own daily routine from that. I do short walks with my partner and longer ones on my own. I love being out in the countryside, alone in a wide landscape, working out my own thoughts. All the physical stuff makes me feel better, and counters any depressive thoughts or tendencies. 


Stephen, I hope you find a way through the fatigue. Pick and mix and experiment with your own choices and ideas. Trust yourself to work out a way. Tackle different things (alcohol? weight?) in tiny incremental ways that you can maintain.


You had a super second PSA reading – something to rejoice about, even if you don’t altogether trust it until you’ve a clear CT scan. 


best wishes


Peter

Edited by member 26 Feb 2021 at 20:44  | Reason: just a small word added

User
Posted 29 Jul 2021 at 17:32

I'm glad for all the positive bits at the start. I hope that the pain when peeing just disappears like the knee pain did. It is good that you had the courage to go ahead with out the general, it is so hard to get NHS service during Covid, you just have to grab it when you can.


If you do have to get involved with self catherisation it is no problem at all I had to do it for a while, and at least it puts you in control rather than waiting for NHS appointments. 


Good luck I hope things improve.

Edited by member 29 Jul 2021 at 22:25  | Reason: Not specified

Dave

User
Posted 29 Jul 2021 at 21:06

Bean121 


I have stage 4 radiation cystitis, my first symptoms were a couple of months after 33 sessions of SRT. My symptoms were blood clots, string like blood clots debris and tissue . Oncology and urology both blamed each others treatment for the issues. I was told not many medics understand pelvic radiation damage. By the time I got a diagnosis from an out of area professor the damage was already done, My bladder capacity is a few ml, I can't even fill a sample tube. 


I developed a uretheral stricture after surgery,had numerous dilatations, including like you one with just the gel, by the sound of it my guy was alot more gentle and we were having a laugh during the procedure. 


I find passing even a small amount of debris gives me pain at the end of the penis before it comes out.


Thanks Chris


 

User
Posted 20 May 2024 at 20:17

Thanks Bean121,


I hope the rise in your testosterone level is a positive sign for the future.  You've had a hard time.


Best wishes,


JedSee.

User
Posted 21 May 2024 at 02:51

Originally Posted by: Online Community Member
On a positive note I have testosterone! Six months ago it was "undetectable" but I now have a mighty 1.9 nmol/l. Well, it's not much but it's a start. Hopefully I'll be up in the normal range in time for my next test in six months.


You're off Zoladex? 4 years is a long time but after two years [at age 77] I found there was a rapid improvement from as little as a month after the Z had stopped doing its thing. Andy has posted a graph giving a timescale for the return of his testoseterone to normal and it took about a year. It seems that once it starts to rise it can go up quite fast. Fingers crossed for you.


Jules

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User
Posted 09 Jan 2020 at 07:57
Best of luck. I found my RT relatively problem-free. Hope yours goes smoothly, too.

Best wishes,

Chris
User
Posted 09 Jan 2020 at 09:22

Best of luck with the HT and the RT. Once you start on the bicalutamide/Zoladex your cancer will shrink as it is starved of testosterone.


It’s good you have been recruited to the genetic study, this will help future patients but also give your doctors more information about you which may be useful.


 

Ido4

User
Posted 09 Jan 2020 at 09:48

Good luck Bean.


My place (Mount Vernon) includes pelvic nodes and seminal vesicles in the RT treatment for all high risk diagnosis even when no spread is visible, because you can't go back and do them later.


If you are anywhere near Mount Vernon (Rickmansworth, M25 J18), next Wednesday, I'm running a session which might interest you:
Surviving Hormone Therapy (ADT) for Prostate Cancer Patients


See my earlier post for details.

User
Posted 09 Jan 2020 at 18:27

Thanks Andy, the session sounds interesting.  Sadly I'm the opposite side of London in SE18 near the Kent border so a bit too much of a haul.  Good luck with it though.


all the best, Stephen

User
Posted 10 Jan 2020 at 10:41

Good luck. Same treatment path that I took. If anything I found the HT worse in terms of side effects than the EBRT.

User
Posted 10 Jan 2020 at 18:06

Just noting that I had my PET scan this morning.  Another radioactive tracer in the blood.  At this rate I'll be glowing in the dark!  More importantly to note that I took my first dose of bicalutamide after, exactly two years to the day after the biopsy that first discovered my PCa.  Feels good to be taking positive action at last after two years on AS.

User
Posted 24 Jan 2020 at 18:14

Completed my first two weeks of Bicalutamide 50mg today.  No obvious side effects other than a bit of indigestion I couldn't really attribute to anything else.  Also, I do seem to have been sleeping better, but whether that's connected in any way who knows. 


Had my first implant of Zoladex at lunchtime.  Will be two more weeks on the Bicalutamide, then just Zoladex every 12 weeks.


Back to the oncologist next Wednesday (29th) to hear result of PET scan of lymph nodes and discuss next steps.

User
Posted 31 Jan 2020 at 18:29

Saw the oncologist on Wednesday.  PET scan was clear, however there's still that niggling doubt left from the MRI so they're not prepared to say 100% that it hasn't spread to lymph nodes.  Having already opted for HT/EBRT I was offered a choice:


1. 20 fractions targeted at the prostate alone, or


2. 37 fractions covering the prostate and lymph nodes


They wouldn't steer me one way or the other of course.  Must admit the prospect of the shorter course with option 1 was tempting, but in the end I decided on option 2.  The oncologist said after that she thought I'd made the right decision, but maybe she would have said that whatever I chose!


Since then I've been wondering if I made the right choice, or even whether I should have gone for surgery after all.  I suppose everyone goes through that though?  Anyway, now I have a three month wait until my next appt.  I've had so many over the past three months it's going to feel a bit strange nothing going on.

User
Posted 31 Jan 2020 at 21:37
Same EBRT treatment I had. In my case, because of my relatively high PSA (32 at diagnosis) they thought there may be undetectable spread to the lymph nodes.

Best of luck with your treatment. You should see a dramatic fall in your PSA now you're on HT.

Chris
User
Posted 31 Jan 2020 at 22:45

Stephen, I think you made the right choice.
If you just did prostate but it turned out to be in lymph nodes too, that might then not be curable.


I had pelvic lymph nodes done too for same reason, although they got a lower dose in my case (46Gy).


And by the way, something is going on. The hormone therapy is reducing your PSA (or more specifically, the activity of prostate cells), which improves the effectiveness of the radiotherapy.


Now is the time to start working on your pelvic floor exercises too, and getting fitter if you can.

User
Posted 31 Jan 2020 at 23:03
Why do PFE's with RT, Andy? Nobody ever mentioned it to me when I had mine!

Cheers,

Chris
User
Posted 01 Feb 2020 at 07:54

RT blasts both the internal urinary sphincter and the external urinary sphincter, and they get weaker, and it can be worse if RT generates bladder spasms, which it does for some people. This can be bad enough to become partially incontinent. It's particularly important during second half of radiotherapy where retaining a full bladder to keep it and your small intestine out of the X-ray field becomes difficult. I did wet myself once on the treatment table (only just enough to dampen my underpants), but it would have been many more times than that if I hadn't been doing my pelvic floor exercises for a few weeks beforehand, while driving to/from the hospital.


Actually, I go further than this - based on conversations with a urologist, pelvic health physiotherapist, and a number of patients, I would say anyone on hormone therapy should be doing pelvic floor exercises. This weakens your pelvic floor just like it weakens all your other muscles if you don't exercise them, and for some people, that's enough to give them stress incontinence.


You may have got away without doing PFE and without leaking, some people do, but it's too late to start when you suddenly find you needed them.

User
Posted 01 Feb 2020 at 09:58
First, everyone should look after their pelvic floor - young, old, male, female. Second, it is never too late to do PFEs and third, a strong pelvic floor helps the patient to hold a full bladder for 5 minutes on the table. But in all the years I have been here, you are the only person that has ever suggested (or even suggested that medical people have suggested) that PFEs are necessary for RT. I think you are overstating the case a bit?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Feb 2020 at 10:59

Clearly, most people on HT alone get away without it, but not everyone does, and two clinicians (who don't know each other) have both mentioned to me that HT patients should be doing it or they might find they become incontinent due to it weakening of pelvic floor muscles. I've come across patients where this happened.


It probably happened to me. I did PFE up to and throughout my radical treatment, but stopped afterwards and didn't continue when I was continent again. After all, I never did them before PCa. 5 months later (still on HT), I happened to try, and find it not easy to stop mid-stream. That was something I never had a problem with before PCa, or right through to the end of radical treatments. (When my RT session was delayed, I could easily pop to the loo and let out just 100ml to ease overfilling, which I have since learned is quite unusual at that stage.) It never got to the point of stress incontinence, but might well have if it continued deteriorating unnoticed. So, having stopped PFE, my PF muscles clearly deteriorated in a way they never had before. Back on to PFE now (but admittedly, not as determinedly as when I was driving to/from RT everyday).


A lot of what you should consider when on HT to maintain your health is not communicated to patients at all. That's why I've run a course on it at Mount Vernon, and UCLH have told me they're planning to start one sometime this year. I think this is becoming a more recognised issue.


Yes, it's never too late to start, but if you only start when you start leaking, you're going to be a few weeks leaking at a minimum before it starts to fix it.

Edited by member 01 Feb 2020 at 11:02  | Reason: Not specified

User
Posted 01 Feb 2020 at 17:05

Originally Posted by: Online Community Member
If you just did prostate but it turned out to be in lymph nodes too, that might then not be curable.


Yes, it was the oncologist explaining that that swayed me Andy.  I must admit that despite reading the literature and lots of posts here it had somehow escaped me until I was told on Wednesday that EBRT is a one-off and can't be repeated should the cancer return.  Don't know how I managed to miss that.

User
Posted 06 Feb 2020 at 20:34

Hello Old Bean
your profile looks just like mine I am almost nine years Dia/2011
Have a look at my profile ,it may give you some help .
Any questions I will try to help
Barry

User
Posted 07 Feb 2020 at 19:17

Thanks Barry, will check your profile out.  Just a brief update, took my last bicalutamide yesterday.  Two weeks into the Zoladex treatment and starting to get some side effects last couple of days.  Feeling a little more tired, but nothing drastic as yet.  Had a couple of very brief and so far mild hot flushes.  Not what I expected, like a heater has switched on inside and your whole body is radiating heat!  One that has bothered me is mild headaches.  Can only put it down to the treatment as I haven't suffered headaches in years.  Oh well, onwards and upwards!

User
Posted 19 Feb 2020 at 21:24

Hi Bean121. My case seems fairly similar to yours. I was diagnosed in Oct/Nov 2017 and had been on AS until about March 2019. I had my second biopsy on 1st. June (Uro had said "If this goes well, you shouldn't need another biopsy for four years and then another one in seven years after that!") Famous last words? When I got the results, it appeared that I needed some treatment. His registrar was too scared to tell me anything other than that, so I saw him (Uro) again in August (he had been on annual leave), when he told me that I needed some Brachytherapy. He arranged for another mpMRI (21st September 2019), just to check that I did need Brachytherapy, but when I finally got the result from the MRI on 6th. January this year! He said "Oh no, it's too late for Brachytherapy now, so you'll need some EBRT". Well I finally saw the Oncologist yesterday and am now also on the Bicalutamide. With implants to look forward to in four weeks and implants from then on, with RT starting in June. (Do they carry on with the HT, whilst also giving you RT, or does one stop while the other continues?) I haven't been told anything about more than 20 fractions being offered, but that I too, will need a bone scan, as the cancer is now growing out the back of my prostate and heading for the bowel and bones! Due to lack of information being given yesterday, (Oncologist likes to give information out, but doesn't like many questions), I will probably be spending a lot of time on the helpline number he gave me. (Based at the same hospital). I did try, like you have, to post about my treatment and 'journey' yesterday, but the page just kept saying 'page unavailable' or something like it, so have posted here instead! I don't think my cancer is in any lymph nodes yet, so maybe that's why they're sticking to the lower amount of RT fractions at the moment. I just hope that, since my MRI was nearly six months ago, that things downstairs haven't grown or changed that much since! Not looking forward to the Zoladex, as I hate side effects! Hope you are still doing well.

User
Posted 19 Feb 2020 at 23:18
They aren't 'sticking with a lower amount of fractions' - they are giving you a 50% higher dose at each fraction.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Feb 2020 at 00:52

Well sorry, I think that came out wrong. Like you said earlier Lyn, about asking whether they can do less fractions at a higher rate, as I am a carer, the Onco said this (20) is the only thing available for me anyway. He never even mentioned anything like 37. I'm just glad (for that read 'seriously relieved') that I (so far) don't seem to be having many side effects to the HT. I'm a bit more tired and have had a couple of dizzy spells, but they only lasted for a couple of minutes each day. Otherwise there seems to be no real difference!

User
Posted 21 Feb 2020 at 08:55
I am frustrated for you that you don't get better information and support, Ross. Yes, you will continue to have the HT during the RT.

I have to say that if you were my brother or mate, we would be going for second opinion at a different hospital and considering a formal complaint. Your care sounds shocking.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 21 Feb 2020 at 19:04

Hi Ross, sorry to take a while to reply, and sorry to hear about your experience.  I will admit, without naming individual names of course, that I was less than satisfied with the way I was treated by King's College Hosp for the first 12 months following my diagnosis.  The incredibly inefficient admin aside, from medics themselves I faced attitudes ranging from dismissive to downright flippant!


Since I transferred to a hospital closer to where I live four months ago the experience has been fantastic.  It's been a whirlwind of appointments, scans etc.  And I've been treated like a responsible adult and kept informed!  Makes a huge difference.  At KCH I was sometimes made to feel like I was an inconvenience to the staff.  It seemed to be their general attitude to all patients, in urology at least.


Regarding HT as Lyn has already said you will stay on it throughout the RT.  I'm only four weeks on from my first implant of Zoladex myself.  As far as side effects go I'm experiencing tiredness now, but it's manageable.  The hot flushes have also been coming thick and fast recently but fortunately don't last long.  One thing I have noticed is over the past week I've been on an increasingly short fuse.  Really lost my temper a few times, which isn't like me.  Don't know whether it's down to feeling tired, or whether the treatment is having some other impact on my mental wellbeing. 


That said I've suffered with depression, anxiety and stress for years - from well before my diagnosis.  So that may be an effect unique to me because of my pre-existing problems. 


All the best for your own treatment. 


Stephen

User
Posted 22 Feb 2020 at 19:59

Well thanks to you Lyn and you too Stephen! Yes I think my treatment has been a little strange. My Uro seems to drag his heels and doesn't like you to sit there for too long, or to ask too many questions. It's very obvious that he is from a higher class than myself and doesn't wish to dwell on anything. Like when I said that my MRI result took three months, he kept saying, "Yes, but it only took TWO months to get back to me". As if that was of any comfort! Maybe if they'd started the HT sooner, that may have helped! I don't know if another hospital would be of any help. I would try it out, but most of them are either getting scored very low in this area, or are hundreds of miles away! So what do I do? I wonder about my forthcoming bone scan. I have a female friend who had a double mastectomy to get rid of her breast cancer, but now has secondary cancer, which has gone into her bones, making it terminal. She's only just over 30 and recently married and has got a dog, as she's been advised against having children, which she would love. This is awful for her, but her treatment is going well and it should continue to do so, until it doesn't I suppose? I'm being scanned to see if my cancer has gone into my bones, yet the Onco says that I should die as a very old man. He told my partner that she should have me for at least another ten years, or even longer. Is it the HT doing this? Or is there a chance that if it gets into my bones, will that mean it's secondary for me too? Or is the Onco right to not be worried at all? I will consider a formal complaint Lyn, but maybe just a little bit further into my treatment. And Stephen, we seem to have many similarities, I too have had anxiety, stress and depression for many years (since 1982)! My fiancé would say that I am already a miserable old so-and-so (she's right!) So I'm definitely not looking forward to that bit increasing when on the implants! Regards, Ross.

User
Posted 16 Mar 2020 at 00:16

Hi All, I Started on Zoladex 3.6mg at begining, one month implant. Then a 3 month implant and my problems started.


Crying, hightened emotions generally, panic attacks etc. Reverted back to monthly implants and all these problems vanished ugh?? 


Anyway remain on monthly visits to my GP and life progresses just fine.


Just saying.............................


BigBobC

User
Posted 16 Mar 2020 at 02:06

The dosing profile of the 12 week and 4 week Zoladex are quite different - the 12 week has quite a spike at the beginning which the 4 week doesn't have.


Also, the 4 week is certified for use on men and women, but the 12 week is only for men.


4 week is cheaper per week, but not if you allow for the cost of two extra injection appointments.

User
Posted 01 May 2020 at 17:16

Just a quick update.  Had my second implant of Zoladex 17 April.  Really been feeling the effect of it.  Have the expected side effects, tiredness (or feeling weak to be more precise), and hot flushes coming thick and fast. 


I also have a couple I wasn't expecting.  First, very dry eyes, which can be really irritating.  I've tried OTC Optrex but it only brought short term relief.  If anyone has any suggestions for anything else I'd be grateful to hear them.


Secondly, and this has really got a lot worse since the second implant, I have pain.  Mainly in my arms and legs, and worst of all in my hands where it sometimes takes my breath away it's that intense.  Also get odd random attacks elsewhere for no apparent reason.  Makes me feel pretty low.  Anyone else have this?


Have also opened another thread seeking specific advice from anyone with experience of being treated for a non-secreting tumour, which is what I have.

User
Posted 01 May 2020 at 18:22
I have replied on your other thread but I think you have misunderstood what a non-secreting prostate cancer actually is, and you probably don't fit that category.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Jun 2020 at 12:14

Had phone consultation with onco 6 May with view to starting EBRT 1 June.  Agreed then to postpone for four weeks due to virus situation.  Just had next consultation today and have decided to push ahead with treatment on basis that coronavirus isn't going away any time soon.  PSA is down to 0.2, but as mentioned before it was never high in the first place so she's not taking that as an indicator.


One change is that it had been planned for me to have 37 fractions targeting the prostate and lymph nodes.  Now, weighing up the higher risk of infection associated with the greater number of visits, added to the fact that there's no concrete evidence of spread to LN, she wants to do just 20 fractions and zap the prostate only.  Basically they want me in and out in the shortest possible time.


She talked of there being no evidence for an increase in survivability were they to do the LN in any case.  I hadn't looked into this so have to take her at her word.  More experienced people here will know I'm sure.  I should have asked more questions but I hate the phone appts, especially with the poor reception I get here.  I'm much better in a face to face where I feel I have more time to think.  But that's the way it's going to be for the foreseeable future so I have to get used to it.

Edited by member 10 Jun 2020 at 14:28  | Reason: Not specified

User
Posted 10 Jun 2020 at 15:05
I don't know about prostate and LNs, but I previously had a melanoma which was found to have spread to the LNs in my left armpit on biopsy. As I understand it, once in the LNs the cancer can spread around the body, so I find it hard to believe that there is no difference in survivability. There certainly is with other forms of cancer (breast cancer can hit the same LNs with pretty much the same result), because I read dozens of reports about it.
User
Posted 22 Jun 2020 at 22:14

Went in for pre-EBRT CT scan and tattoo 11 June.  Went through the micro enema and water drinking.  Got on the table and ultrasound showed bladder wasn't full enough.  Sent home and told to drink minimum two and a half litres of water or acceptable alternative a day.


Followed instructions and went back for second attempt Tuesday 16 June.  Bladder was spot on so they started the scanner only to find my rectum was too large.  Sent home to await arrival by courier of a course of laxatives.  Not happy about taking them because I have no bowel problems or constipation whatsoever.  If anything I tend towards the opposite and always have done.


Laxatives took four days to arrive and as they have to be taken for a week the third attempt to take the CT is schdeuled for Friday 26th.  Hopefully things will go ok so I can get the treament started as I'm getting pretty stressed with the whole situation.

User
Posted 23 Jun 2020 at 01:24
I don't follow the reasoning earlier in this thread which if I understand it correctly implies that if you want the lymph nodes included you have 37 fractions but if the lymph nodes are excluded you have 20 fractions. This is not a reason for the difference in fractions administered.

In 2007 when I was diagnosed with PCa which the surgeon considered to be too far locally advanced for him to remove all the cancer surgically I was offered EBRT instead. I was offered the standard 37 fractions or to enroll in the CHHiP trial where men were randomized into 3 arms. The first was the standard 37 fractions at 2Gy = 74 gy. The second arm was 20 fractions with a total dose of 60 Gy with a 3rd arm of 19 fractions and total dose of 57Gy The Chief Investigator was Professor D........ at the Royal Marsden where I was to be treated. I have the trial papers in front of me now which sets out the criteria and aims and possible benefits and disadvantages. There is no suggestion that one arm might be more appropriate to treat lymph notes than another and that was not suggested when I asked questions at the time. As we know, over time the trial results showed little difference in effectiveness between arms 1 and 2 in terms of successfully treating PCa and attendant side effects. The 20 fraction option which meant reduced visits for patients and less hospital time subsequently received approval and has become increasingly adopted.

Being Perverse (but not foolish I believe), I opted for something quite different to any of the above but that's a different story!
Barry
User
Posted 23 Jun 2020 at 13:21
Yes, I don't think it is that straightforward either - John had 20 fractions at 3.2Gy in 2012 as part of the trial and his lymph nodes & the bottom of his bladder were zapped. The trial found that fewer fractions at a higher dose was just as effective but with fewer side effects - until they get up to 3.4Gy and above where the side effects became progressively worse.

Now 20f has become mainstream, it seems (from posts here) to come down to oncologist preference whether to go with 20 or 37?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jun 2020 at 18:35

Strange.  I was only offered 20 fractions for prostate only, or 37 to include lymph nodes.  When I opted for 37 she said she thought I'd made the right choice even though there was no concrete evidence of spread.  Maybe she would have said that whatever I went for.


I've liffted this quote from the letter my onco has just sent to my GP.


Proposed treatment:


Radical radiotherapy to prostate 60Gy in 20 fractions (Not for prophylactic nodal irradiation to avoid 37 fractions during COVID-19 situation and node negative disease so no clear overall survival advantage with prophylactic nodal irradiation)


PSA non-secretor - needs regular follow up CT scans


3 years of Zoladex 10.8mg every 12 weeks till Jan 2023


 

User
Posted 25 Jun 2020 at 21:45
May just be your onco's approach or a local CCG protocol, Bean
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Jun 2020 at 22:48

Originally Posted by: Online Community Member
Yes, I don't think it is that straightforward either - John had 20 fractions at 3.2Gy in 2012 as part of the trial and his lymph nodes & the bottom of his bladder were zapped. The trial found that fewer fractions at a higher dose was just as effective but with fewer side effects - until they get up to 3.4Gy and above where the side effects became progressively worse.

Now 20f has become mainstream, it seems (from posts here) to come down to oncologist preference whether to go with 20 or 37?


Hypofractionated works better on prostate cells, but causes more significant GI toxicity. So my guess is they'll do hypofractionated aimed at prostate, but not at pelvic lymph nodes where bowel becomes a more significant organ at risk. Just a guess though.

User
Posted 12 Jul 2020 at 18:21

After two failed attempts at the pre-EBRT CT scan, the third attempt on Friday 26 June was successful.  I'm starting my 20 fractions on Wednesday 15th, finishing Tuesday 11 August.


Guy's normally run a pre-treatment seminar for new radiotherapy patients but had to cancel due to the virus situation.  Shame as I'm assuming we would have been given info on things like diet.  I've searched this site and on the web but haven't come up with much advice on good foods to eat, and which foods to avoid.


My daughter lives with me and she's vegan so my diet normally comprises a lot of veg, pulses and soya.  I'm assuming that lot will have to go for a start!  I've also always eaten wholemeal bread but guess I'll have to switch to white for the duration.


I've mentioned previously my longstanding alcohol addiction.  Although nothing has been said I shall totally abstain throughout the treatment.  It will be tough, but fear of the consequences of drinking will motivate me.


I shall be glad to finally have the treatment under way.  In the meantime if anyone has any dietary tips they'd be gratefully received.


Stephen

User
Posted 12 Jul 2020 at 20:00

Stephen,


We were told not to change diet initially. If you start to get loose bowels (which almost everyone did), then you cut down on fibre. A few people have the opposite problem, constipation, and may need to add fibre.


For low fibre,
avoid fruit except peeled apples, peeled pairs, and bananas;
avoid veg except peeled potatoes;
avoid brown flour, brown bread, brown pasta;
avoid bran Including breakfast cereals containing it. (Corn Flakes is one of the lowest fibre cereals.)
Don't do this all in one go in case you get constipated, scale up as necessary.


Skin around the X-ray entry/exit area needs special care. This is a band around your body from your naval down to your penis, and includes your arse crack. Use plain soap when washing, not scented. Don't use any other skincare products without getting permission from the radiotherapists. (Products with metals such as zinc are ruled out.) Don't rub the area - wash using hands, not flannel, and dab dry gently. Don't soak for a prolonged time (no long baths or swims). Do use sun tan when out in the sun, even under a T-shirt (which let UV through) for a year. Check any folds of skin for any infection, and ask radiotherapists for medication to apply if that happens. I didn'r have any problems with skin. Pubes in the X-ray entry/exit area fell out a couple of weeks after treatment, but regrew afterwards.


Stay well hydrated, so you are washing plenty of water (well diluted urine) through your bladder.


Get working on your pelvic floor exercises. Alcohol, fizzy drinks, caffeine, and concentrated urine (dehydration) might cause bladder spasms (urgency to go before your bladder has filled up). Cranberry juice may be beneficial in reducing chance of urinary infections (beware of sugar content - there are low sugar types), although too much of this and many other juices can make urine more acidic (I drunk it very well diluted).


This is what I remember from my session. They also told us not to ride a bicycle. I'd already bought a noseless saddle, and they said that was fine. My onco thought the not riding a bike was OTT.


Good luck.

Edited by member 12 Jul 2020 at 23:25  | Reason: Not specified

User
Posted 12 Jul 2020 at 20:46

Thank you so much Andy, that is so helpful.


Interesting about the zinc.  I suffer with the dreaded piles but of course the treatments contain zinc oxide so I suppose I have to lay off that for the duration too.


Thanks again mate.  All the best


Stephen

User
Posted 12 Jul 2020 at 23:59
As someone else has said, it is really important not to change your diet significantly unless the radiotherapy team tells you to. Alcohol, caffeine & fizzy drinks are a bit different - I think almost all hospitals seem to ban these for the duration of the RT, mainly because they cause gas, and gas is the enemy of the radiotherapist.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Jul 2020 at 11:44

Started my 20 fractions Wednesday 15th.  Had the eighth one this morning and so far all has gone very smoothly.  Only two minor bladder issues (too full one day, not full enough another) and difficult to believe I'm nearly half way through.


No side effects so far, other than any physical exertion is starting to make me feel weak and tired, but it's manageable.  Suppose I'm approaching the point now where others might kick in.

User
Posted 24 Jul 2020 at 13:20

I found it very helpful that the side effects didn't start for the first week and a half. The too full bladder issue hit me one day, when one of the machines had broken down and I had to wait another 15 minutes! But they didn't tell us that until going to the, still working machine! They let me pass some of it out, which (they said) didn't make too much of a difference, or I would definitely have watered their table! I am now 17 days post RT and am glad that the side effects are receding fairly quickly! Good luck with yours!

Edited by member 24 Jul 2020 at 13:21  | Reason: Not specified

User
Posted 24 Jul 2020 at 13:22

Pleased to hear everything going along ok with your EBRT Bean.  My husband had his fourteenth today and all going ok.  Just slight problem with hernia getting in the way on one occasion, diarrhoea for a day (which may not necessarily have anything to do with treatment) which in turn affected his piles but soon eased.  We can’t believe he only has six more to go and it’s the weekend so two days off now! He received a call from the radiotherapy nurse last Tuesday to check how he was feeling, which was not expected, and the staff have all been wonderful.


Good luck with the rest of your treatment.


Angex


 

User
Posted 24 Jul 2020 at 13:51

Originally Posted by: Online Community Member


Started my 20 fractions Wednesday 15th.  Had the eighth one this morning and so far all has gone very smoothly.  Only two minor bladder issues (too full one day, not full enough another) and difficult to believe I'm nearly half way through.


No side effects so far, other than any physical exertion is starting to make me feel weak and tired, but it's manageable.  Suppose I'm approaching the point now where others might kick in.



You may find the bladder problems gets a bit worse as time goes on, the nerves get disturbed. I had a few gripes from the Radio - therapists, but never so little in the bladder, that they felt it was unsafe to go ahead. You now have the weekend to rest, take it very easy & be spoilt is my advice - if there is someone to spoil you.

User
Posted 31 Jul 2020 at 21:18

Another week ticked off.  13 fractions done, just 7 left to go.  Still going smoothly and still free of side effects, apart from a slight reduction in flow.  Keep expecting them to kick in but nothing so far.  Haven't even had to make any changes to my normal diet yet.  Maybe next week things will change.

User
Posted 31 Jul 2020 at 22:18

Here’s hoping you remain relatively free of side effects.

Ido4

User
Posted 01 Aug 2020 at 12:58

That's amazing. Having been there, done that, I wouldn't wish those side effects on anyone! So hopefully you'll come out the other end with never knowing them. Good luck for your last week!

User
Posted 11 Aug 2020 at 18:42

So that's it then.  My 20 fractions finished today.  Has all gone very smoothly, thanks in no small part to the great staff at Guy's Cancer Centre, Sidcup.


Side effects wise I've been tired, but still managing to walk the dog four miles a day.  Occasionally get a bit of burning when peeing but it soon goes.  Flow has felt restricted at times too but not enough to ask for meds and I'm hoping it will pass soon.  Only been getting up twice a night fortunately.


Aside from totally abstaining from alcohol and caffeine I haven't had to make any changes to my diet.  Have carried on with the fruit, veg and wholemeal bread and have had no bowel problems whatsoever.  It's remained business as usual as far as that's concerned.  Haven't had any sore skin anywhere either.


So without wishing to tempt fate I seem to have got off pretty lightly so far.  My worst experience was one involving a micro-enema and being too far from the bathroom.  Luckily I was at home! 


 

User
Posted 11 Aug 2020 at 19:10

Congratulations on finishing your radiotherapy sessions. It sounds like you have done well regarding side effects, hopefully that will continue. Best wishes, 

Ido4

User
Posted 11 Aug 2020 at 19:44

Congratulations. Symptoms can get worse over next couple of weeks - they lag behind treatment, but hopefully you'll continue sailing through.


One issue is that it can all suddenly feel like an anticlimax - having been treated and fussed over daily for weeks, suddenly everyone's forgotten you and you might feel a bit lost. There are Macmillan classes (such as HOPE) which are intended for you now. Some places are doing these over Zoom, so do ask your Macmillan centre. It takes a while to realise that you've finished the treatment for what you've been worrying about over the last several months (well hormone therapy trundles along for a while yet).

Edited by member 11 Aug 2020 at 19:48  | Reason: Not specified

 
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