Cheshire Chris's Treatment Thread

User

Posted 18 Apr 2019 at 23:09

Hi Chris

Sorry to reading your last update....must be extremely stressful.....your a superman because of the health issues you been going through they can be for some men unbearable!!!
Besides your a single man whom dealing with his problems himself.....!

I hope that some men whom have partners can read your health issues than they can stop moaning for little things like sissy girls!!

Happy Good Friday

D.R

Edited by member 19 Apr 2019 at 23:39 | Reason: Not specified

User

Posted 19 Apr 2019 at 08:50

Hi Chris

I've been following your thread with interest.

I've got 2/20 RT sessions left next week but for the last week I've suffered from proctitis probably due to the beam hitting my bowel as well as my prostate. My Onco says its a common problem when radiating patients with enlarged prostates, he has given me fybogel which helps bind my poos, downside is fybogel itself causes flatulence and bloating so each time I feel the need to do something I have to visit the khasi, better to be safe than sorry!
Consequently not straying too far from home and had a couple of close calls on the M55 on my way to RT.

Onco reckons 3/4 weeks after treatment the proctitis should settle down but he also said don't expect your bowel to be as good as it was before and to be prepared for different bowel habits in the future (whatever that means - 3 visits a day instead of 1?).

John

User

Posted 19 Apr 2019 at 09:07

Thanks, John. I don't have diarrhoea, nor any particularly increased urgency to "go", just a constant burning sensation in my rectum. It's nothing more than a minor annoyance - certainly not severe enough to require any painkillers. Hopefully it'll ease off in a few days. It's curious that it should start now, more than three weeks after my treatment ended, though!

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 08:55

Hi Chris

I dont know all those medical words the one you mentioned in your message but your a true fighter my friend, I admire you!

You will be OK. We will go to Ibiza together get drunk have party on the boat with girls:)

Happy Easter bank holiday.

D.R

User

Posted 22 Apr 2019 at 10:56

Thanks, DR. Stopping taking the Tamsulosin wasn't a good idea - problems peeing started within 24h - so I'm back on it again. It really is a "wonder drug" - one of those medications that almost instantly starts working and makes life a lot easier!

Cheers,

Chris

User

Posted 22 Apr 2019 at 11:18

Chris

I'm sorry if I'm being nosey but do you contribute for your any kind of medications?if so God helps you!

Beside struggling to have a wee sound terrible. Hope your medicines helps you.

Also I insist with ibiza:)

D.R

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 20:03

Hi Chris (tough guy)

Good to hear that you dont have to pay for your treatment and medicines.

I didn't know about medical payments exemption thing surely I can request one.

Regards

D.R

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.

User

Posted 22 Apr 2019 at 20:46

Hi Chris,

Just a word of warning.....My husband took one Tamsulosin tablet, and had a very severe adverse reaction! His blood pressure dropped very suddenly without any warning, and he collapsed onto the floor of the pub where he and a friend had gone for lunch. He has no history of blood pressure problems, and he doesn't drink, so initially it was very frightening, and very embarrassing, as he also vomitted violently! We then spent several hours in A and E until he was stabilised, and were told to stop the Tamsulosin.

Consultation with the Radiotherapists the following morning confirmed that it was almost certainly a reaction to the pills, one of the older radiographers recalled seeing it happen once early in his career, so it is obviously very unusual, but it was very frightening, and we were just very grateful it didn't happen a couple of hours earlier when he was driving back from his radiotherapy, as it really did happen very suddenly, and he still can't properly recall what happened.

User

Posted 22 Apr 2019 at 21:41

A drop in blood pressure is a known side-effect of Tamsulosin, but such a dramatic manifestation of it is, I suspect, very unusual! For me it works very well indeed.

Cheers,

Chris

User

Posted 10 May 2019 at 17:27

Ok, I've just had a PSA test 6 weeks post-RT and it's 4.6. My PSA was 32 on diagnosis, and the HT (bicalutamide) had brought it down to 13 immediately prior to RT. I guess it's good that it's now barely a third of what it was before RT.

It would have been nice if it had been even lower, but my oncologist told me that he wouldn't be too concerned about what the actual figure was as long as it had fallen. Bicalutamide doesn't block testosterone production, but only its reception, so you don't get the dramatic falls in PSA that you do with the injections that block production.

I have my follow-up appointment with my oncologist on Monday, so I'll be interested to know what he thinks. I'm hoping that the significant decline in my PSA does indicate that the RT has been successful, but I am feeling a little bit stressed now!

Chris

User

Posted 10 May 2019 at 19:19

Doing some reading I see that it's quite common for PSA readings to actually rise after RT, and that it's the nadir reading (which is generally about 18 months after treatment) that's the best indicator of successful treatment, with a value of <1 being desirable. Given my relatively high PSA of 13 immediately prior to RT I guess a value of 4.6 is pretty reasonable for 6 weeks after treatment.

Chris

User

Posted 10 May 2019 at 20:41

You understand correctly. Many oncos refuse to have PSA tests done until at least 6 months post-RT

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

User

Posted 10 May 2019 at 21:04

Thanks, Lyn. I know I just need to wait and see what happens over the next year or so, but I’m finding the experience slightly stressful.

Best wishes,

Chris

User

Posted 13 May 2019 at 19:12

I've just returned home from my 6-week post-RT follow-up with my oncologist. He said he's very pleased with the way that things are going, and my current PSA (4.6) is absolutely fine given my treatment history, so everything's going to carry on the way it is now as far as medication goes, with another PSA test and follow-up appointment in 6 months' time. He did say that he may consider stopping HT after 18 months rather than carrying on for two years, as originally planned.

Thus far I've had all my treatment and appointments privately, but, as mentioned previously in this thread, I've decided to retire on 1st Aug, at which point I'll lose my private medical insurance. My oncologist is therefore transferring me onto his NHS list, which he says will make no difference at all to my treatment.

So all in all, a good result. Trying to put PSA levels, etc, out of my mind for the next six months at least!

Cheers,

Chris

User

Posted 13 May 2019 at 20:17

Great news Chris, long may it continue.

Good luck.

Phil

User

Posted 13 May 2019 at 22:32

Good news all round Chris.

Ido4

User

Posted 13 May 2019 at 22:41

Nice one Chris. All the best

User

Posted 14 May 2019 at 20:37

Fantastic news Chris,

6 months of respite from appointments equals bliss.

devonmaid xx

User

Posted 11 Jun 2019 at 20:37

Well, this wasn’t in the plan...

A couple of weeks ago I had an abdominal CT scan as a routine follow-up to the nephrectomy operation where I had my left kidney removed (following my prostate MRI showing I had an unrelated kidney tumour) last year. I heard nothing from the hospital after the scan so I breezed into the consultant’s room today assuming I’d be told all was well.

It didn’t go exactly like that.

What my consultant has said is that the scan showed “a mass” near to where my kidney used to be. The radiologist has said that this is most likely to be an benign “fibrous mass” - basically scar tissue from my surgery - but he can’t rule out the possibility that it’s a tumour. My consultant said that he’d put the probability of it being a tumour at “1%”, but “just to rule it out” he wants to do another scan at the end of August and see if the mass has grown or shrunk.

I know that I need to put it out of my mind and just get on with my life for the next three months, but, gosh, I can’t help worrying about it. Does anxiety about cancer recurrence ever go away?

My consultant did say that when kidney cancer spreads it normally shows up in the lungs, and the scan showed absolutely nothing there. He also looked at a scan I had in November and the same “mass” was visible in that scan, and the radiologist didn’t comment on it then. So just an ultra-cautious radiologist this time?

Heck, I really hope I’m not in for more cancer diagnoses. I’ve really had enough of that.

Not a very happy,

Chris

User

Posted 11 Jun 2019 at 23:17

Hey Chris, just got home from my daughters 41st, then read your news. A Doc that gives a 1% chance of it being malignant is really being just like an MP in my opinion! They never like to say 100% Its benign, so just a bit of ass covering in my opinion. Get on with your life mate and don't think of it, especially after what you've been through.

Alan

User

Posted 23 Jun 2019 at 16:54

I’m in a much happier frame of mind than I was when I posted that last message. I was really concerned that the kidney cancer might have spread. I asked my consultant for another meeting about it, which I had on Thursday, and I’m feeling reassured. The radiologist looked at the scan I had post-op in October and the same anomaly is visible there, too, but it was significantly larger in October 2018 than it was in my May 2019 scan, which reinforces the view that it’s scar tissue from surgery given that it’s shrinking in size.

On the PCa front I find myself with a mild case of proctitis (a burning sensation in the rectum) once again, three months after finishing RT. Clearly a late effect of radiation, which is, I read, not uncommon. I have no other symptoms and the burning sensation is mild, so I’m not too bothered about it.

My retirement on August 1st is now only a few weeks away. All the admin stuff to get my pension(s) is complete, and I have a meeting with my financial advisor on Tuesday to go through all the details. I’m really looking forward to retiring!

Cheers,

Chris

User

Posted 23 Jun 2019 at 17:25

Chris, I am sure you will enjoy your retirement and hope it all goes smoothly for the other stuff. So pleased for you.

Funny that I was looking forward to retirement ( I’m 64 now) before the PCa hit but now I feel I need the social aspect of work and of course low and behold they give me the bullet. So I’m still looking for another position , I’m just not ready but obviously you are ready and willing and I wish you all the happiness for the future.

Its funny writing this as I feel like a newbie but I’ve been on here since beginning of 2018 and feel like I’ve known you and the regulars for ever 😆

Phil

User

Posted 23 Jun 2019 at 18:12

Thanks for the good wishes, Phil. I’ve been with my current employer for 23 years, and there have been so many rounds of redundancies that pretty much everyone I knew has gone. I recently moved to a new department in the company and, to be honest, I find the work deadly dull. I work from home anyway, so there is no social side to it. I can’t wait to retire - all sorts of plans :). I only have three more weeks of work, because I’m on holiday for a fortnight in mid July.

All the best,

Chris

User

Posted 24 Jun 2019 at 08:34

All the best for your retirement Chris. I thoroughly recommend it!

Ido4

User

Posted 24 Jun 2019 at 08:50

Have a great retirement and do all you want to do. We had to give up my oh's passion for sailing and bought a motorhome instead so new adventures are often round the corner. Life takes us in many directions - not always the ones we had in our mind. Pc has occupied most of our retirement but we have adapted to every challenge - not always easy but easier when not working and you get used to a reduced income too. Wishing a long and happy retirement

Edited by member 24 Jun 2019 at 08:51 | Reason: Not specified

User

Posted 24 Jun 2019 at 12:31

Thanks, Gilly. I'm fortunate in that I have a well-paid job, and I've been saving over a third of my salary into my pension fund for many years. The result of that is that I can retire and my net income will be almost unchanged, so I'll be able to indulge my interests.

Best wishes,

Chris

User

Posted 26 Jun 2019 at 11:12

Three months after the end of RT and I've just passed quite a lot of clear mucus, which hasn't happened since I finished RT. I believe that this is quite a common late side-effect. Does anyone have any views on whether it's something I should contact my GP or oncologist about?

Thanks,

Chris

User

Posted 26 Jun 2019 at 16:51

I still get occasional mucus 2 years post radiotherapy, also was diagnosed with radiation proctitis.

Last time I saw my oncologist I mentioned the mucus. Answer: reduce your fibre intake!

I ignored that advice.

Ido4

User

Posted 26 Jun 2019 at 18:06

Originally Posted by: Online Community Member

I still get occasional mucus 2 years post radiotherapy, also was diagnosed with radiation proctitis.

Last time I saw my oncologist I mentioned the mucus. Answer: reduce your fibre intake!

I ignored that advice.

Thanks. Good to know I’m not alone in experiencing these late side-effects. Yes, I have occasional bouts of proctitis, too. Generally lasts a few days and then subsides again. A bit uncomfortable, but by no mean debilitating.

Cheers,

Chris

User

Posted 26 Jun 2019 at 20:47

Hi Chris,

It's good to read of someone retiring early even if it wasn't what you originally planned. It sounds like you made provision for retirement. Two people I worked with had words I thought worth bearing in mind, they were:

'If you retire and have 7 days of Saturdays you'll be alright, but if it's 7 days of Sundays then it won't be.'

Although that was when Sunday's were closed.

'Take all you can get and take it as early as you can.'

That person thought the retirement offer I got at 55 wasn't going to be repeated and he was right. I would never do the extreme and cash my retirement fund or even part of it.

I live a bit north of you and had imagined you work in the chemical or pharmaceutical industry but if you work at home perhaps not. It sounds more like the publishing or could be banking industry. It's interesting to try to guess about people on here. All the best and keep writing. Regards Peter

User

Posted 26 Jun 2019 at 20:52

I work in IT, Peter, so I spend all my days at the keyboard. That's something I shan't miss!

Cheers,

Chris

User

Posted 26 Jun 2019 at 23:07

"Take all you can get and take it as early as you can."

That was the advice of our FA when we discussed John retiring last year - as he is unlikely to live another 30 years, the sooner he started drawing out the better.

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

User

Posted 01 Aug 2019 at 16:30

Today is both my 57th birthday and the first day of my retirement! I must admit that I’ve been a little nervous about it, as the time has drawn near, but I’m sure I’m doing the right thing, and I’m looking forward to being able to enjoy all my hobbies now. I’ve signed up for an “over 50s keep-fit” class in my village. I need to shed some of the weight the HT has put on me!

Health-wise, everything is pretty good. I’m having the occasional dose of mild proctitis, but I think I need to accept that that’s something I’m probably stuck with now. It’s a small price to pay if my cancer has been sorted out by the RT.

Now I’ve retired I’ve lost the “safety net” of private medical insurance, so it’s NHS treatment for me from this point forward. I’ll have my first taste of that when I go for a (hopefully routine) CT scan as a follow-up for my kidney cancer treatment on 30th August. As far as the PCa is concerned, no more PSA tests until the middle of November, which will be 8 months from the end of my RT.

Cheers,

Chris

User

Posted 01 Aug 2019 at 20:01

Happy retirement Chris. I retired last September at 58 years old. No regrets.

Ido4

User

Posted 01 Aug 2019 at 20:44

Brilliant - congratulations

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

User

Posted 01 Aug 2019 at 20:59

Nice one Chris. I was retired at 46 and have worked solid from 49. I’m now 52. God being retired is Soooo boring. Depends on your personality. To be fair if we didn’t have a 9 yr old we would prob have a camper van and be holidaying 24/7 , but we are a bit tied. That’s why I want to work and get enormous joy from my present job.
Happy retirement mate

User

Posted 01 Aug 2019 at 21:24

Congratulations.

I'm the same age, and stopped working shortly after being diagnosed, to put my efforts into learning about the disease, treatments, side effects, etc. I didn't decide if this was to be retirement or just a break. It would depending both on what I wanted to do after treatment (in turn, depending on prognosis), and if anyone would give me a job at that point. As it happens, I'm wanted back where I was working before, and it's looking like I'm going to do this. If my prognosis changes direction, then I'll re-evaluate.

I have taken a few long breaks in my career, and really enjoyed them. Never found any shortage of things to do. First one was 6 months. Next one, I planned so I could take a year out. This one will be a year too, if it doesn't turn into retirement. I thoroughly recommend it if you can plan for it.

User

Posted 02 Aug 2019 at 09:54

Originally Posted by: Online Community Member

Thanks, Chris. No danger of being bored. I’m going to go back into full-time study and do a Master’s degree, which is something I’ve had planned for years, so I’ll be very busy indeed!

All the best,

Chris

User

Posted 02 Aug 2019 at 09:58

My pension lump sum showed up in my bank account this morning, so that relieves my “what if they don’t pay me?” anxiety. I’m all set now!

Chris

User

Posted 18 Aug 2019 at 11:54

Yesterday was the anniversary of starting my HT. A year on 150mg/day bicalutimide and I'm feeling pretty good. No significant side-effects other than weight gain (which I'm tackling!). Fortunately I seem to have avoided hot flushes, and other common side-effects. I did feel very "woolly-headed" for a few months after starting to take it, but that wore off, fortunately.

I'm due to be on it for another year, although my oncologist said that he may reduce the length of the treatment to 18 months in total (ie another 6 months from now) - he's going to make that decision when he sees what my PSA level is in November, which will be 8 months after finishing RT.

Everything seems to be going very well at the moment. I'm enjoying retirement and life feels good. What a contrast to the way I felt when I was diagnosed; things couldn't have felt any bleaker then. If anyone else is going through a rough time mentally after being told that they have cancer, my advice would be that difficult as it may be to believe, you will come out of the other side of it one day.

Cheers,

Chris

User

Posted 18 Aug 2019 at 15:08

Well said Chris. All the best,

Ido4

User

Posted 10 Sep 2019 at 11:32

Feeling slighty stressed today.

I had a CT scan on 30th August as a follow-up to my nephrectomy operation last year, and the radiology report has come back saying:

"There is a 2.7cm soft tissue "mass" lying inferior to the site of the previous nephrectomy. It is not possible to say whether this represents post-surgical scarring or recurrent tumour. This could be biopsied if considered clinically appropriate."

I emailed my consultant about this (I'm fortunate in that he's happy to have me email him directly with any concerns) and he very kindly phoned me back 10 minutes later and said that the scan results were going to the MDT this Friday, but that he personally felt this this was 90% likely to be scar tissue, because he believes that this "mass" is unchanged from the previous scan 3 months ago. The MDT will compare the images from this scan with those from November last year and April this year to see how (if at all) it has changed.

I know I'm very fortunate to have such a considerate consultant who does contact me. He said he'll try to phone me after the MDT on Friday and let me know the outcome.

I know I shouldn't worry, but it's hard not to. Worry is just a part of "life with cancer", I think.

Keeping my fingers crossed for Friday.

Chris

Edited by member 10 Sep 2019 at 11:35 | Reason: Not specified

User

Posted 10 Sep 2019 at 16:49

A very stressful situation Chris. I hope you get good news after the MDT.

Ido4

User

Posted 10 Sep 2019 at 17:08

Thanks, Ido. Me too! I know I need to stop worrying and just wait for the results, but that's easier said than done. I'm sure that many of us here find waiting for results to be in some ways the worst part of this whole cancer journey.

Chris

User

Posted 13 Sep 2019 at 14:11

Just had an email from my consultant:

Hi Chris,
Good report.
Just discussed the scans at MDT. There is no change from the previous studies so we will just repeat the CT scan in 6 months. I will do a letter to you and your GP about it.

That's a relief!

Chris

User

Posted 13 Sep 2019 at 14:18

That’s great news Chris, enjoy your studying and retirement

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 13 Sep 2019 at 14:31

Thanks, irun. When I read about people with uncommunicative consultants I realise how lucky I am to have one who takes the time to send me an email right after the MDT because he knows I'm worried about it. It is a weight off my mind.

Chris

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