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Cheshire Chris's Treatment Thread

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User

Posted 16 Aug 2018 at 18:09

I've now officially started treatment, so I'll use this thread to record my journey from here on in.

To summarise, I'm T2C N0 M0 with a template biopsy showing about 60% of cores cancerous, with all but two of those being Gleason 3+3, the other two 3+4. Scans show no bone mets and no indication of lymph node involvement, even though my PSA is 32 (or was in May when it was tested).

The urologist and the MDT recommended against surgery. I've had a long meeting with the oncologist today, and I'm now officially on the HT+RT route. A daily 150mg bicalutamide tablet, and a weekly 20mg tamoxifen tablet to (hopefully!) suppress breast development. Blood test after four weeks to check liver function; if normal the plan is to stay on bicalutamide for two years, if liver function is impaired I'll switch to injections.

The plan is to have RT after 6 months of HT (ie in Feb next year). I asked why not 3 months, and he replied that because my prostate appears to be producing a lot of PSA he wants to give the HT the maximum chance to suppress the cancer cells prior to RT.

I'll be having my RT at the Clatterbridge Cancer Centre near Liverpool, which is the regional oncology centre. I'm told it's a "state of the art" cancer centre, so I feel I'm in good hands.

So, there we are - finally started treatment three and a half months after my initial PSA tests, which feels like an eternity. I asked my oncologist if he thought there was any significant possibility that my cancer was anything other than localised and he said "no", which is reassuring.

I've bought a pill box with compartments for each day of the week, and I'll be taking my first bicalutamide tablet in the morning. Fingers crossed it goes reasonably smoothly!

Chris

Edited by member 16 Aug 2018 at 19:45 | Reason: Not specified

User

Posted 03 Sep 2018 at 14:03

Thanks, all. The pain is a lot more manageable today, and the plan is now to discharge me tomorrow. I'm deliberately spending today on the painkilling tablets I'll be sent home with rather than the much more effective IVs, and so far it's bearable. Not great, but bearable, and I am keen to get home.

Recovery will be a long road, though. Because of the large incision through my abdominal muscles they had to make to get my kidney out through, I can't lift anything that weighs more than about a kg, and when I get out of bed or a chair I have to use my arms rather than my tummy muscles to do so. Doing otherwise is quite agonisingly painful!

Still, I'm on the road back to recovery now, and no more kidney tumour!

Chris

User

Posted 04 Feb 2019 at 16:17

Had my RT planning session today. It all went fine, although (as expected) the thing with the enema wasn't that much fun! I'm now the proud possessor of three tattoos - a cross on each hip and another above my pubic bone, to align the RT machine.

My actual RT starts next Monday. I'll be having 32 fractions, and my appointments are at 1145, which is a convenient time for beating the traffic, so that's all good.

I'll be seeing my consultant once a week during the RT. Had another PSA test today to act as a baseline for the RT.

So all as good as one might reasonably expect.

Chris

User

Posted 10 Apr 2019 at 18:46

It certainly is. I had a period of a couple of weeks where I wasn’t able to go any longer than 45m between peeing, and that results in major sleep deprivation. I’m very happy that it’s over!

User

Posted 16 Aug 2018 at 18:09

I've now officially started treatment, so I'll use this thread to record my journey from here on in.

I'll be having my RT at the Clatterbridge Cancer Centre near Liverpool, which is the regional oncology centre. I'm told it's a "state of the art" cancer centre, so I feel I'm in good hands.

I've bought a pill box with compartments for each day of the week, and I'll be taking my first bicalutamide tablet in the morning. Fingers crossed it goes reasonably smoothly!

Chris

Edited by member 16 Aug 2018 at 19:45 | Reason: Not specified

User

Posted 17 Aug 2018 at 07:53

I coped with Bical and weekly Tamox with no issues and no breast soreness or growrlth for approx 11 months. It reduced my psa from 43 to eventually 0,33 over that period. I’ll never know if I did the right thing but I’ve constantly rejected RT post surgery as they said I must have micromets and it wouldn’t cure me. However they are now saying that if 2 PET scans show nothing in my body then it must be in the bed !?!?!? However the scans showed nothing there either. I did have slight positive margins on my bladder , but not enough to now be giving me a psa of approx 50 again. Decision time next JAN maybe so I’ll get on with living. I feel you may have done the right thing. I never lost any libido at all but not sure about ED as it took ages to recover from surgery. Good luck mate

If life gives you lemons , then make lemonade

User

Posted 02 Sep 2018 at 08:29

Well, here I am in hospital. Unfortunately they had to remove my entire kidney (which I always knew was a possibility) - the surgeon's coming to see me later today to explain why. Had a reasonable night once they got the pain under control, which took a while. We'll see how it goes recovery-wise. Feeling a lot better this morning than I did last night.

Chris

User

Posted 12 Sep 2018 at 18:30

Sorry to hear that, Chris. I’m in no pain now (that disappeared when the surgical staples came out); it’s literally just that the main incision is sitting about an inch below the level of the surrounding skin (or fat, to be more accurate!) because it’s pulling everything inwards. As you rightly say, it’s early days yet - only 11 days since major surgery, and the surgeon told me beforehand that it would probably take 6-8 weeks to recover from it.

Chris

User

Posted 09 Nov 2018 at 20:36

Originally Posted by: Online Community Member

You're very kind, Chris, but I'm the last person in the world you'd call "courageous"! There are people on this site who are far, far worse off than me, and I'd much rather not be having to deal with any of this stuff. The only good news in any of this is that, thus far, the treatment's been pretty successful, and I take the view that you've just got to try to handle things one step at a time. I'm not looking forward to my RT next Feb at all, but again it needs doing so I'll deal with that when it happens. At least I've got a couple of nice trips arranged for between now and the RT.

Cheers,

Chris

update from me Chris, had my review today at the 8 week post RT point. This is pretty standard, Oncologists all say you need this period for things to settle down. To the point, after weeks of agonising waiting my PSA At review was 0.5. This is very good I’m told and means the RT was a success. I asked the oncologist if I could stop HT after 18 months, she reinforced 3 years was recommended for people like me in the Gleason 9 club, but she fully supported my QoL reasons to stop at 18 months. I’ll be on 4 monthly PSA tests for the next year, then as I’m stopping HT early, 4 monthly for another year. All I all the best outcome I could have had. So don’t dread your RT mate, it’s vital and does the job. I’m always around if you want to chat about the whole RT thing

alan

User

Posted 31 Jan 2019 at 07:46

I have my RT planning session on Monday, with treatment starting a week later (11th Feb). I’m told that I’ll be having 30 fractions, so 6 weeks in all. I have to admit that I’m a little stressed about the RT; not so much the treatment, but more the potential for long-term side-effects and bowel/bladder issues.

I know the important thing is to get the PCa sorted, and this will hopefully be the final stage in what’s been a pretty horrendous year for me, but I love to travel, and long-term side-effects that kept me “house-bound” would be hard to take. As described in another thread, I had hoped to get SpaceOAR rectal spacer inserted to reduce the risk of bowel damage, but although my medical insurers approved it, the clock ran out in terms of finding somewhere to have it done, and I didn’t want to delay my RT.

Oh well, just have to hope that I’m not one of the people who end up with major side-effects. I’m not bothered in the slightest about ED-related stuff (that’s just not an important part of my life), but I do have a horror of incontinence.

Chris

User

Posted 10 Feb 2019 at 08:48

RT starts tomorrow. 32 fractions at 11:45 every day at Clatterbridge. I must admit that I'm a little stressed about the possible side-effects, but I know that I need to just get through it and accept whatever comes my way. Clatterbridge is a specialist cancer centre, and I know I'm in good hands. All the same, knowing all that doesn't take away the nervousness!

Oh well...

Chris

User

Posted 05 Mar 2019 at 13:27

I've reached the half way point in my RT! 16 fractions completed, 16 more to go. To quote Churchill, "This is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning." . I feel like this is an important milestone.

Cheers,

Chris

Edited by member 05 Mar 2019 at 13:56 | Reason: Not specified

User

Posted 31 Mar 2019 at 09:55

Thanks, DR. Everything's fine again now I'm taking the Tamsulosin again. Had a much better night last night.

Cheers,

Chris

User

Posted 20 Apr 2019 at 16:17

Happily, the proctitis has disappeared again, so everything's fine once again.

I'm going to stop taking Tamsulosin tomorrow to see if I'm able to manage without it. Next week marks a month since the end of my RT, so I'm hoping that the radiation-induced inflammation of the prostate which necessitated the use of Tamsulosin will have subsided. Obviously I'll start taking it again if I do experience problems.

Chris

User

Posted 22 Apr 2019 at 13:48

Anyone diagnosed with cancer is entitled to a “Medical Exemption” NHS card giving free prescriptions. I hope you have one, DR! If not, get a form from any chemist and get it signed by your GP.

User

Posted 22 Apr 2019 at 20:17

You may need to beat your surgery reception with a large nailed stick to get one. Mine played absolutely dumb on the subject as they did not want to pay out so I had to get the oncology nurses at the hospital to sort one out for me.

Unsurprisingly enough my surgery has a 1* rating on the NHS rankings.

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User

Posted 17 Aug 2018 at 05:01

Fingers, toes and eyes crossed for you too Chris.

I hope all goes according to plan.

State of the art sounds like a good place to be getting treatment.

Good luck and best wishes on your journey

****

We can't control the winds - but we can adjust our sails

User

Posted 17 Aug 2018 at 07:53

If life gives you lemons , then make lemonade

User

Posted 17 Aug 2018 at 08:01

I hope all goes well Chris.

Longer on ADT prior to radiotherapy is a good thing.

Ido4

User

Posted 17 Aug 2018 at 08:59

the staff and team at your hospital are fantastic and it sounds as if your plan is similar to the one my oh started on 8 years ago. There have been changes to meds along the way but still going strong so hope all goes well for you and that you have good family support too.

User

Posted 17 Aug 2018 at 09:35

Best of luck Chris your at about same stage as me I started bical tabs three days ago for three weeks next week having implant from GP then have to wait three months for brachytherapy & RT so our journey is very similar I'm under Christies in Manchester looks fantastic place and great reviews.

User

Posted 17 Aug 2018 at 10:02

Thanks for the good wishes, everyone - they're very much appreciated. I feel comfortable that I've made the right treatment choice, and I'm very happy to actually be on what will hopefully be a curative pathway now. I took my first bical tablet at 8 o'clock this morning, and I'm going to take the tamoxifen every Saturday to make it easy to remember.

How long does it typically take for side-effects to start showing up with bical? Presumably it takes a fair time for testosterone levels to fall after one starts taking it, so I guess I shouldn't expect anything for maybe a few weeks?

Chris

User

Posted 17 Aug 2018 at 13:52

Chris , with Bical symptoms aren’t so bad. It only slightly reduces testosterone rather than remove it like the injections do !! It’s key purpose is to DISGUISE the testosterone from the cancer so that the cancer can’t use it. Very effective but I don’t know for how long !! Sometimes it is added to castrate level injections to confuse the cancer even more. So you are still producing T and the symptoms aren’t so bad. Take care and good luck

If life gives you lemons , then make lemonade

User

Posted 17 Aug 2018 at 14:39

Thanks, Chris - that's very useful information!

Chris

User

Posted 18 Aug 2018 at 13:17

I've always been a keen walker, but I've done almost no exercise in the last month due to having first a template biopsy followed a week later by an operation to fix a large aneurysm in my splenic artery. I know it's important to keep fit during HT, though, so I'm going to get back to a regular exercise regime. Just come in from a brisk mile and a half walk which has left me covered in sweat (which is crazy - a month ago I could walk 5 miles and not notice it), but hopefully my fitness will improve again with daily exercise.

The slight fly in the ointment is an operation to remove half my left kidney which I'll be having shortly (my prostate scans revealed an early-stage localised kidney tumour, completely unrelated to the prostate cancer), so that'll probably leave me unable to do much at all for at least a month. I see the kidney surgeon on Tuesday, and hope to have a date for the operation soon after that.

So far, so good with the bical, but it's only been two days.

Chris

User

Posted 20 Aug 2018 at 19:10

I went to see my GP today to tell him what the oncologist had said and prescribed. My GP's been wonderful throughout this entire process - he literally saved my life by giving me a PSA test because that ended up with scans finding a symptomless kidney tumour which would without doubt have killed me in a few years had it not been found early.

Anyway, to return to the story, I was a little concerned about getting my bicalutamide and tamoxifen prescribed through my GP because I'd seen the oncologist privately, but there were no issues at all - he added them to my repeat prescription list without any questions. He's also said that they'll do my 3-monthly PSA tests, and just to call in when I need one.

I've read some real horror stories here about uncooperative GPs, so I count myself very fortunate to have one who's been so incredibly supportive for me.

I think I might be feeling the first effects of the bicalutamide today - I've been feeling "out of it" all day today. Not unwell, just a little "disconnected" from the world, if that makes any sense?

Chris

Edited by member 20 Aug 2018 at 19:12 | Reason: Not specified

User

Posted 20 Aug 2018 at 23:16

Hi Chris

I have similar-ish ratings and treatment options but am a bit ahead of you in the process (T4N0M0, treatment of HT then RT, started HT beginning July). I did Bicalutamide for a month and half-way through that had the first Prostap injection, now followed by a second 3-month worth injection.

On the feeling of disconnection: for me this is one of the major side-effects of the HT. Not totally sure if it is the hormone in itself or the anti-androgen (testosterone eradication) effect. Whatever it is, it does feel weird. Also,I registered for a clinical trial and the baseline visit threw up a heart issue so that added to the general fun and games. However, am seeing my GP tomorrow and emotions and other side-effects are things I want to understand better. Perhaps one just "lives with it", - at the moment talking about it when I am low helps me most.

Based on PSA scores, the HT is working for me: mid-May it was 141, mid July it was 43, last week it was 2. (Re the test frequency: I like knowing how things are / are not progressing and my cancer nurses will print off a testing slip for me so I can find out).

Not sure if this perspective helps but all the best to you with your treatments - speaking as a prop forward it's a whole new world for me ;-).

Good luck

User

Posted 21 Aug 2018 at 00:01

Macmillan do some good guides on the emotional impact of being diagnosed with cancer, and of finishing treatment

https://www.macmillan.org.uk/information-and-support/coping/your-emotions/dealing-with-your-emotions/cancer-and-your-feelings.html

Edited by member 21 Aug 2018 at 00:02 | Reason: to activate the hyperlink

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

User

Posted 21 Aug 2018 at 08:29

Bical did knock me out for a couple of weeks but then my body adapted ok. Mainly fatigue and sore boobs but no growth.

If life gives you lemons , then make lemonade

User

Posted 21 Aug 2018 at 10:03

I felt odd and a bit disconnected after taking bicalutamide. Hard to describe the feeling but I didn’t like it.

I guess it is the bicalutamide blocking our cells ability to use testosterone.

Ido4

User

Posted 21 Aug 2018 at 13:01

Yes, it's a weird feeling. Nothing I can't handle, though, and hopefully, as Chris says, my body will adapt to it in a few days.

Chris

User

Posted 21 Aug 2018 at 20:02

I've just got home from seeing my kidney surgeon. He wants to do a robot-assisted partial nephrectomy (ie partial removal of a kidney) to remove my kidney tumour early in September, so fingers crossed it'll be done the week after next. That should be a complete fix for my kidney cancer, but they'll only know for sure once they look at the surgical margins after the operation of course.

This is the final thing wrong with me, so I feel as though I'm well down the road to complete recovery now!

Chris

User

Posted 21 Aug 2018 at 21:18

I am pleased that things are moving ahead with your kidney treatment Chris and I have to say that I am full of admiration for the way that you have been handling all of this.

All the best with your treatments and I'll be rooting for you.

Kind regards

Kevan

User

Posted 21 Aug 2018 at 21:29

Cheers, Kevan. I was a complete emotional wreck for a couple of months after I was diagnosed, but my GP put me on an anti-anxiety medication called Sertraline which helped tremendously. Now I've completely come to terms with things and I'm enjoying life again - something I never thought would be possible again only a few weeks ago.

Sounds strange to say that I'm looking forward to major surgery, but I really am, because if this goes as planned it should be a complete cure for the kidney cancer, although I'll be having annual CT scans for the next 5 years to monitor things.

Chris

Edited by member 21 Aug 2018 at 21:55 | Reason: Not specified

User

Posted 21 Aug 2018 at 23:56

Glad that you have all the pieces of the plan in place now Chris - you have coped remarkably well, I think.

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

User

Posted 22 Aug 2018 at 15:29

Good Luck Chris. I hope the operation goes well.

For what it's worth I found the two weeks of Bicalutamide far harder to cope with than the Prostap that followed it. Fatigue was very noticeable but eased to the point where I was functioning quite well up to the Radio Therapy starting. Each person is different of course but Insomnia has been the only real pain for me. I still sleep the same number of hours but in one or two hour blocks. I am waiting for my second jab to wear off now and can only hope that my sleep improves when it does.

User

Posted 24 Aug 2018 at 15:34

Just had an email from my consultant to say that my kidney surgery will happen next Saturday, 1st September. I'm guessing it's a weekend admission because it's a private procedure, although being done in an NHS hospital.

Good to get a date for it!

Over a week on the bicalutamide now, and no side-effects. The weird "disconnected" feeling I had a few days ago has worn off, thankfully.

Chris

User

Posted 24 Aug 2018 at 16:09

I hope all goes well with the surgery on the 1st Chris.

Ido4

User

Posted 24 Aug 2018 at 17:13

Thanks - I'm looking forward to getting it over and done with. I'll probably be in hospital for two nights, so all being well it's likely I'll be home Monday. Assuming there's a good negative surgical margin on the tumour when it's removed, this should be a complete cure for the kidney cancer. My consultant said that if he's in any doubt about that, he'll remove my entire kidney.

Chris

User

Posted 27 Aug 2018 at 21:51

Chris

glad things are getting sorted now, you sound so much happier lately and I’m glad for you.

i had RT fraction 14 last Friday 24th. This three day weekend over the bank holiday has been very frustrating as all my meant to do is get on with the treatment and get it over with. I have four treatments this week which will take me to 18 and then just two in the beginning of September .

But I was disappointed to get an appointment to see my oncologists eight weeks later on the 8th of November for an update on my situation but apparently I must have eight weeks to get over the radiotherapy before they will give me a PSA test and treatment outcome

User

Posted 27 Aug 2018 at 22:29

Cheers, Alan. Yes, I am a lot happier. I’m enjoying life again, which is something that in all honesty I wondered if I’d ever do again not so long ago! Surgery on Saturday, a few weeks to recover, then hopefully back to work mid October or so. My employer’s been very good, and I can have up to a year off on full pay, but I’ve been on sick leave since the middle of May and I just want to get back to normal life again now. Obviously that’ll probably be disrupted again while I’m having (and getting over) my RT in the Spring, but I really feel that everything’s in hand now and that the end of treatment is in sight. My next real “landmark” with the prostate treatment will be a PSA test in November, when I’ll have been on the HT for three months. I’ve not had a PSA test since my initial diagnosis in May, so I’m keen to know how it’s changed.

Very best of luck with the final RT fractions, and please do let me know how things go.

All the best,

Chris

User

Posted 27 Aug 2018 at 23:09

Hi Chris
I am on the same plan as you HT then RT, I was very pleased to know that the bical tablets had worked in 4 weeks bring my PSA from 39 down to 23. I am waiting for my RT to start.
The last PSA I had was 1.75 so for me bical and then Prostap are working.
Take care
Phil

User

Posted 28 Aug 2018 at 08:47

Good luck with the op, hope it all goes well. x

regards barbara

User

Posted 28 Aug 2018 at 15:07

A year off sick on full pay? You must be a government employee or an MP! 😉

Best of luck with your operation.

User

Posted 28 Aug 2018 at 17:56

I've worked for a large multinational company for well over 20 years, so fortunately I've built up a very good benefits package over that time. My manager and everyone else at work couldn't have been more helpful and sympathetic, and they basically said "take as much time off as you need and get yourself sorted out". I do want to get back to work, though, particularly bearing in mind the fact I'll probably need more time off next year when I have my RT.

Chris

User

Posted 28 Aug 2018 at 21:01

Chris

The best advice I can give you is to try and keep yourself fit from now up to when you start your radiotherapy

Daily walks would be a good start, keeping the distance and effort well within yourself, but if you’re not sure get advice from your GP before starting any exercise routine.

cycling is also good exercise and no stress to the joints.

Today after fraction 15 I was feeling a bit down, in spite of having just 5 more to go. Yet after 45 minutes cycling the endorphins took effect and I got home in a happier state of mind and relaxed.

User

Posted 31 Aug 2018 at 11:23

I have the partial nephrectomy operation tomorrow to remove my kidney tumour. Looking forward to getting it sorted out, but obviously very apprehensive about the actual operation (or rather, the recovery from it). I guess it's natural to be nervous about major surgery! Still, I know it needs doing so it's just a matter of getting through it.

Chris

User

Posted 31 Aug 2018 at 11:42

Good luck on a full recovery friend

If life gives you lemons , then make lemonade

User

Posted 31 Aug 2018 at 11:45

Thanks, Chris. Much appreciated.

Chris

User

Posted 31 Aug 2018 at 14:31

I will be thinking about you tomorrow

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

User

Posted 31 Aug 2018 at 16:08

Thanks, Lyn, that's very kind. I have to be there at 11am, and they're operating at 1pm, so there shouldn't be too much waiting around at least.

Chris

User

Posted 31 Aug 2018 at 16:14

HI Chris

All the best for tomorrow and I wish you a speedy recovery.

You are a real inspiration.

Kind regards

Kevan

User

Posted 31 Aug 2018 at 16:48

All the best for tomorrow and the outcome Chris

Cheers Bill

User

Posted 31 Aug 2018 at 22:46

Hi Chris

good luck for tomorrow mate.

I had fractio 18 and final review today, 2 to go next week.

please ask me for any advice once you get to RT

User

Posted 31 Aug 2018 at 22:52

All the best Chris - hope all goes well.

User

Posted 02 Sep 2018 at 08:29

User

Posted 02 Sep 2018 at 13:37

Well, that's interesting. Apparently the reason the surgeon was unable to remove the tumour from the kidney is that I have weird anatomy. He said I've got a second major artery going to my kidney that shouldn't be there, and which he's never seen or heard of before! So I might end up in a medical journal .

Feeling considerably better now. Managing to walk (very, very slowly!) around the ward which I certainly couldn't have done yesterday. Morphine is wonderful stuff!

Chris

Edited by member 02 Sep 2018 at 13:38 | Reason: Not specified

User

Posted 02 Sep 2018 at 14:47

Great news Chris and thanks for the update

User

Posted 02 Sep 2018 at 17:05

Great to have that over and done with Chris. Hope your recovery is smooth.

Ian

Ido4

User

Posted 02 Sep 2018 at 19:04

I'm in a lot of pain which medication isn't being wholly effective in suppressing. Think I might be here awhile. I don't see any chance of getting home tomorrow as the consultant was originally suggesting.

Chris

User

Posted 02 Sep 2018 at 20:30

You’ve been through such a rough time since joining us on here Chris, PCa, aneurism, Kidney tumour. I don’t know how I would have coped even with the support of my OH and your beating it on your own.

Top effort mate and respect to you

User

Posted 02 Sep 2018 at 21:04

Best wishes Chris. Hope the pain eases. No need for it really. Sometimes hospitals at the weekend are a nightmare. No one savvy enough to prescribe properly.

If life gives you lemons , then make lemonade

User

Posted 02 Sep 2018 at 21:52

There is bound to be some pain - painkillers can't completely numb you otherwise you might overdo things. But make sure it is being topped up regularly to minimise the amount of breakthrough pain.

Fingers crossed tomorrow is easier.

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

User

Posted 02 Sep 2018 at 22:14

I hope you have a good recovery and will feel better soon. Don't rush things - you will need to take things slowly to allow yourself to heal. Interesting you have a novel anatomy - must have given the surgeon a surprise!!

User

Posted 03 Sep 2018 at 14:03

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