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My hormone/radiotherapy (HT/EBR) journey

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

 
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