53 with PC

53 with PC

User

Posted 25 Feb 2021 at 18:32

Hello all,

I was just diagnosed with Prostate Cancer. I am 53 years old. All a bit rubbish to be fair, as I went to see a Urologist privately to discuss ED issues. I got nowhere with the NHS over a 10 year period. I was even advised by my GP (who's now retired thank god!) to get therapy with my wife. It was "all in your head" he said. So, I trot off to this Urologist with my frustration. Because my father died of Prostate Cancer (Aged 82) back in 1990, they decide to do a PSA test. I've never until now been offered one. It came back above 3 (3.4) so decides to do an MRI. It shows some shadowing. Finally, the Transperineal Biopsy. It returns:

Quote: "Subsequent histology, unfortunately, showed significant prostate adenocarcinoma in terms of volume in the
right peripheral and posterior lateral zones, in the region of 80% and 70% of the core volume which is
Gleason 3+4=7 – Grade group 2.".

I guess this is low grade, however I have been given 4 options: Surgery, External Beam Radiotherapy, Brachytherapy or Active Monitoring. I have spoken to the Urologist about Surgery. It doesn't sound great. The Oncologist about the External Beam Radiotherapy, sound like a lot of commitment is needed to get through this. I am yet to discuss Brachytherapy, but from what I read this also has its problems. I am waiting to speak to an Oncologist about this. Then the last option of active monitoring - which is simply delaying the above decisions.

What to do? I do feel a little the two 'specialists' I have spoken to so far are selling hard their product. After all, they want to be paid. Is it really the best for me? At the moment I am edging towards Brachytherapy - although I have yet been sold on it by the Oncologist. I've ordered the Toolkit for additional info, but have any of you had this and recommend it?

User

Posted 25 Feb 2021 at 19:00

Jacques, check out proton beam therapy. https://www.therutherford.com/treatments/proton-beam-therapy/?gclid=Cj0KCQiAst2BBhDJARIsAGo2ldVbtCNq02rotPAXGrjxuUQhLE1vsPSHVZpHRXxDtCMNzcPRBylrDEsaAvVnEALw_wcB.

in my case it was 7 treatments every other day over two weeks. so far so good in that I have had hardly any side effects at all. I still need to get my bloods tested in about two weeks and before the treatment I also had the spaceOar fit to protect the bowel. I'm hoping its all worked but no reason why it shouldn't.

I also found that trying to make a decision of which route to take was really stressful but once I had made up my mind it was a big relief.

Good Luck like myself it seems to have been caught early

Edited by member 25 Feb 2021 at 19:01 | Reason: Not specified

User

Posted 25 Feb 2021 at 19:28

Hi Jacques,

Sorry you find yourself on here but we have all got some experience of what you are going through, I was diagnosed Gleason 3+4 in Feb last year I was 57 years old and fairly confused to be honest and then given the options to decide about my treatment, I elected to go the brachytherapy route and one year on I have no regrets, I did a bit of a thread on it here https://community.prostatecanceruk.org/posts/t24531-My-LDR-Permanent-Seed-Brachytherapy-Journey

All the best with your deliberations but once you have decided what route you are taking you will feel better at least I did, any questions just ask.

Regards

David

User

Posted 25 Feb 2021 at 19:34

I went down the HT/RT route (it was strongly recommended, so I didn't really have a choice 🙂) and found it pretty tolerable. No side effects which were too awful. Happy to answer any questions you may have about it.

Chris

User

Posted 26 Feb 2021 at 13:26

I have a friend who is G3+4=7 and has been on Active Surveillance for five years, subject to three-monthly PSA tests, annual MRI scans and urologist consultations.

Why don’t you try it for a year and see how it goes?

Best of luck.

Cheers, John

User

Posted 27 Feb 2021 at 13:15

Btw... those people I saw with AXA PPP also work NHS so if I switch to NHS I will probably see them.

User

Posted 27 Feb 2021 at 16:14

My brachy was done with a general anaesthetic, so a little weight loss would still be a good idea, having said that it is very minor surgery compared to a full prostatectomy which is major surgery. By the way are you thinking of HDR or LDR?

Dave

User

Posted 27 Feb 2021 at 21:52

HT and lose weight are not normally words found in the same sentence.

User

Posted 28 Feb 2021 at 07:38

I had private treatment, Jacques (work medical insurance) and my case certainly went to an MDT.

As Franci was alluding to, nearly everybody gains weight during HT. You may struggle to combine HT with weight loss.

Best wishes,

Chris

User

Posted 28 Feb 2021 at 07:44

Hi Jacques, if I may explain, in your first post you posed a question about which treatment course you should follow. I answered as no one from the Radical prostatectomy side had chipped in. I do not regret my choice, it was based on my own experience of my father having RT. Unlike you I only had 2 choices so the decision was easier.

Re HT and weight loss my only experience is what I have read on here - all negative. So your best shot at shedding pounds is before the HT starts.

The surgeon I saw said keeping thin was a the best defense he knew against getting cancer and avoiding recurrence so it it would be beneficial to you to lose as much as you can.

Edited by member 28 Feb 2021 at 07:45 | Reason: Not specified

User

Posted 28 Feb 2021 at 08:48

I didn't really have any choice, as radiation would effect my gut too much (I already have colitis, albeit mild). However, from the nomograms I've seen, the best chance of avoiding recurrence is HDR. From what I recall adding HT to that didn't change outcomes very much. However, others know more about this than me, so don't take my word as gospel.

Whatever treatment you're going for, I would suggest losing weight. I can easily lose a kg a week if I want and I'm only 67kg to start with.

User

Posted 28 Feb 2021 at 18:27

To be honest I do not know as yet what course of treatment I will go for. This cancer I have was discovered only because I had a slightly raised PSA level of 3.4. I was told by the surgeon that it was likely that if I had done nothing for 5 years there would be a 100% chance I'd still be alive other than if I was killed by other means and not this cancer. This medication is given as per their guidelines on all diagnosed cases. Part of protocol - as you say. I do not see the point of taking these whilst I have not yet decided what course of treatment I will go for. I do not think they will make a huge difference to this cancer short term if I took them or not. At the moment they are doing me more harm with fatigue, hives and skin rash I'd rather not take them until I've decided what route I will take. At that point I will follow whatever instructions the specialist gives me and take whatever tablets they offer. It's early days.

Don't know why people get so excited by cancer. s*** happens.

Edited by member 28 Feb 2021 at 18:36 | Reason: clarity

User

Posted 28 Feb 2021 at 19:25

I sort of agree with you about not taking the medication until you know what treatment you will decide on.

Prior to covid I don't think you would have been put on HT until the treatment decision was made. I can only guess that now things are being delayed by covid they are putting everyone on HT as a holding measure.

In your first post you described Active Surveillance as just delaying the inevitable. I would probably agree with you on that, but I would say that delaying these unpleasant treatments is a very good idea, of course not to the point of letting the cancer get too far advanced.

I would say that if Active Surveillance is still on the table don't start the HT. If you have already decided against active surveillance you may as well start the HT, as it will help any treatment you do have. Of course if the side effects are unbearable that is another story.

I do agree it is better to take a relaxed view to a cancer diagnosis, but sadly for some people the disease is more advanced and the prognosis not so good.

Dave

User

Posted 01 Apr 2021 at 17:56

Good to hear you've got a definite plan of action now. I too was on 150mg/day bicalutimide as a primary HT. It's a relatively uncommon treatment it seems, but my oncologist reckoned it generally has fewer side-effects than the injected forms of HT. I didn't have too many side-effects; the main ones were weight gain, fatigue, and for a month or so feeling that my head was full of cotton wool and an inability to think clearly. Fortunately that passed.

Best of luck for the treatment,

Chris

User

Posted 02 Apr 2021 at 11:53

It’s because of the way that RT actually works. The radiation damages the DNA strands in both the cancerous and the surrounding healthy cells. Healthy cells are usually able to repair their DNA (this is largely why RT is split over many sessions, to give them time to do so), but the repair mechanism in cancer cells is usually faulty, so that eventually the damaged cells die. HT is continued because it suppresses the ability of the cancer cells to reproduce while giving time for them to die. This can take a very long time. That’s why men who have had prostate RT usually see the nadir (minimum value) of their PSA around 18 months after treatment.

Best wishes,

Chris

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User

Posted 25 Feb 2021 at 19:00

I also found that trying to make a decision of which route to take was really stressful but once I had made up my mind it was a big relief.

Good Luck like myself it seems to have been caught early

Edited by member 25 Feb 2021 at 19:01 | Reason: Not specified

User

Posted 25 Feb 2021 at 19:28

Hi Jacques,

All the best with your deliberations but once you have decided what route you are taking you will feel better at least I did, any questions just ask.

Regards

David

User

Posted 25 Feb 2021 at 19:34

Chris

User

Posted 26 Feb 2021 at 13:12

Cut it out gets my vote, save the radiation for later..

User

Posted 26 Feb 2021 at 13:19

Originally Posted by: Online Community Member

What to do? I do feel a little the two 'specialists' I have spoken to so far are selling hard their product. After all, they want to be paid.

What do you mean? Have you only seen the specialists privately? Have you not seen someone on the NHS?

In fact, urologists and oncologists do not usually push their own treatment because they want to get paid - they have to publish their outcomes so the opposite would be true of many prostate cancer specialists; they will only agree to treat you if they are really confident that it will be successful. In truth, for a small early prostate cancer, there is absolutely no difference in outcomes between the three radical treatments (surgery, external RT and brachy) and hardly any difference at all over 10 years between men who have radical treatment and men who choose active surveillance. If you are suitable for all 4 options, it all boils down to your personality and your approach to risk.

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

User

Posted 26 Feb 2021 at 13:26

I have a friend who is G3+4=7 and has been on Active Surveillance for five years, subject to three-monthly PSA tests, annual MRI scans and urologist consultations.

Why don’t you try it for a year and see how it goes?

Best of luck.

Cheers, John

User

Posted 27 Feb 2021 at 13:02

Is that the only reason? Save the radiation for later?

User

Posted 27 Feb 2021 at 13:14

It is very likely I will 'switch' this treatment to NHS now I am in the system. I went privately because for the last TEN years I approached my GP with an issue that effected my sexual wellbeing (ED). Not once did they think about looking into this properly, except for blood-test for my testosterone levels and checking my thyroid. At one point it was recommended by my GP (now retired) to seek sexual counselling with my wife saying things were psychological. Not only did I have ED (which I could only manage by tablet or by mechanical means), but my wife and I had issues trying to start a family. It never happened. Taking tablet non-stop for ED is not the answer and it was becoming stressful. I thought maybe I didn't have enough testosterone? I do not know. I had desire but things did not 'click'. This is very stressful for a man. So, you take an on-demand tablet (Viagra) only to find other-half 1 hour later is not up for it. Waste of tablet. The stress is like planning a military mission. Now, I am on one-a-day Tadalafil, which allows more spontaneity. It helps. Still, I wanted to find out why things were not clicking. Becoming frustrated, I decided to go with AXA PPP (as I had this via work). This is why I went private. Does this make sense?

User

Posted 27 Feb 2021 at 13:15

Btw... those people I saw with AXA PPP also work NHS so if I switch to NHS I will probably see them.

User

Posted 27 Feb 2021 at 13:46

Hi David,

I read your thread with great interest. I am still to see the Oncologist about Brachytherapy, but at present, I am leaning towards this form of treatment weighing up all the options. Going for the Radical cut out seems very radical if there is a chance you may need radiotherapy afterwards. I also need to lose a lot of weight to avoid complications. I'm 115kg - so a good 30kg before I think it would be safe to work on me? Seeing mine is Stage 2, I am thinking this is too radical but i will try to lose weight anyway. Brachytherapy seems a good option as very direct.

User

Posted 27 Feb 2021 at 15:36

What is your BMI, Jacques? Surgery is generally not a problem provided your BMI is under 35.

Best wishes,

Chris

User

Posted 27 Feb 2021 at 16:00

More than 35.

User

Posted 27 Feb 2021 at 16:14

Dave

User

Posted 27 Feb 2021 at 16:38

I'm guessing I will have about a 6 month period of hormone therapy. This gives me plenty of time to make an effort to lose weight. I've done it before. 28kg in 4 months. Just need to maintain it. I've not spoken to the Oncologist who specialises about this. Being Stage 2 I would think LDR? I don't know until the discussion has been had.

Edited by member 27 Feb 2021 at 16:40 | Reason: Not specified

User

Posted 27 Feb 2021 at 21:52

HT and lose weight are not normally words found in the same sentence.

User

Posted 27 Feb 2021 at 23:09

Two comments so far from you on my thread. 1st: Wasn't really contributing anything. Your choice. Personally, sounds like you're a bit bitter about that choice you took and would dearly wish to have taken a different route. 2nd: Made no sense, and not sure who it's directed too. Why can't HT and weight loss not be in the same sentance? I see no reason it can't and that it's not impossible to do both. If you are not going to be more constructive try contributing elsewhere please. Thanks.

Edited by member 27 Feb 2021 at 23:19 | Reason: Extra words to clarify.

User

Posted 28 Feb 2021 at 00:18

It is much harder to lose weight while on HT and many men put weight on; partly because muscle turns to fat as you lose testosterone and your body feminises and partly because fatigue can make it difficult to exercise - we do have some members who manage to stay very fit and active while on the hormones but it is a struggle.

Franci wasn't being difficult; he is speaking from experience and the heart as do the rest of us. There will be as many members who would advise you to have the op first and save the radiotherapy for if / when the op fails as there are members who will say you might as well go straight for the radiotherapy rather than 2 sets of side effects.

The point I was trying to make was that if you have only seen private doctors so far, you have missed out on the very valuable multi-disciplinary team assessment. In the NHS, each new diagnosis is reviewed at a MDT meeting by up to 12 / 14 specialists who agree the diagnosis and discuss the pros and cons of / your suitability fir the various treatments.If you are transferring back into the NHS now, it will be worth asking whether the MDT is still an option. Brachy may be ruled out if you are very overweight.

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

User

Posted 28 Feb 2021 at 06:24

Agreed Hormones can affect weight loss. Eating also can effect weight loss. Simple solution: Don't eat. You lose weight. Best method that works for me is 23/1 (which I've now started and lose roughly 1-2kg per week) or extended fasting. Done it in past. Easier than you think once past the hungry stage and it is surprisingly enlightening and does not make you tired - complete opposite. Longest spell for me was 120hrs on water and black coffee and was surprisingly energetic.

The first surgeon in his comms to my GP did mention my case was discussed at a SMDT meeting at BHR UCH London cancer on 16th February 2021. I guess that's what you are referring too? So, private, seems they too do speak at a panel. On feedback the 4 options were discussed with me by this surgeon: RP, ERT, Brachytherapy & Active. He advise RP would be potentially an issue due to my weight. Advised, at my age and evaluation my condition, both ERT and Brachytherapy were worth serious consideration - especially the latter, and arrangements made to discuss both options with various oncologists. 4th option also worth considering but simply a delay to the inevitable (above).

Edited by member 28 Feb 2021 at 18:38 | Reason: Clarity.

User

Posted 28 Feb 2021 at 07:37

Like Lyn says Jacques it is difficult to lose weight on HT. I've been on it two and a half years, I was 12 stone most of my working life but struggle to keep under 14 stone now despite daily exercise.

As muscle turns to fat you lose weight on your arms and legs and pile it on around your midriff

Fortunately my weight seems to have stabilised 2 stone heavier but I also find it hard to resist mid morning and mid afternoon snacks - something I never did when working.

I'm sure it's partly due to the medication this need to comfort eat.

User

Posted 28 Feb 2021 at 07:38

I had private treatment, Jacques (work medical insurance) and my case certainly went to an MDT.

As Franci was alluding to, nearly everybody gains weight during HT. You may struggle to combine HT with weight loss.

Best wishes,

Chris

User

Posted 28 Feb 2021 at 07:44

Re HT and weight loss my only experience is what I have read on here - all negative. So your best shot at shedding pounds is before the HT starts.

The surgeon I saw said keeping thin was a the best defense he knew against getting cancer and avoiding recurrence so it it would be beneficial to you to lose as much as you can.

Edited by member 28 Feb 2021 at 07:45 | Reason: Not specified

User

Posted 28 Feb 2021 at 08:48

Whatever treatment you're going for, I would suggest losing weight. I can easily lose a kg a week if I want and I'm only 67kg to start with.

User

Posted 28 Feb 2021 at 09:08

Thanks for the clarification. Having read your blog what you experienced sounded somewhat traumatic. Sorry you had limited options but have somehow got through and adapted. My father died of PC. He was old school and left it too late before complaining about it (Aged 82 back in 1990). Luckily (or not?) he left me a legacy. At least caught early and apparently stable.

I totally get what HT does to a man and the body. This will require a total life changing approach - especially with diet and exercise. As standard they've already stuck me on Bicalutamide. Being a nonsteroidal antiandrogen im guessing i'm already on HT. Still, it's not impossible to lose weight, it needs a complete rethink. I read (above) someone saying about snacking. I understand snacking is difficult to overcome but it isn't impossible to overcome. When it comes to weight lose those are the things you need to overcome. Getting into the right mindset is key. Something like 'this' is a good incentive to kick start that mindset.

As said earlier, I've adopted over the last 12 months intermittent or extended fasting. Other diets didn't work. I lost a good amount of weight. 20kg. Put about 15kg back on, because I adopted my old bad habits over last 4 months. I don't do that 16/8 nonsense, but literally OMAD. Occasionally, maybe every 3 months fasted a full +48 hours - drinking only black coffee or water. Nothing else. The most enlightening occasion, which I will do again, is 120 hours. Sounds mad? It wasn't. It was actually an amazing experience. I had so much energy. Wired. Felt 'clean'. It promotes Autophagy. Cellular regeneration. Cancer need glucose to survive. Promote ketosis then cancer cannot survive. Who knows?

I guess there is logic to it. I might even try starving this cancer by fasting after tonight. Dump those standardised tablets I was given (Bicalutamide). Do a two or three week stint (easy enough) and arrange a PSA test to see what comes back. If favourable then maybe an MRI? Nothing to lose. Only gain, if it clears things.

Not sure if people know but the longest fast was 382 days. The man lost 12st. Didn't die. He had plenty of reserve energy stored as fat. This he burnt via Ketosis. We have all been conditioned to eat little but often. 5 meals a day. Snacks. Processed foods. Those ideas were bad ideas. If you are not hungry at breakfast why eat toast? Because you are told you should have breakfast? Listen to your body, but be careful. Certain foods you must avoid. There are good books worth reading by Dr Jason Fung about this for anyone who wants to look at losing weight easily.

Interesting article on fasting and Cancer:

https://blog.supplysideliberal.com/post/2018/4/3/how-fasting-can-kill-or-slow-down-cancer-cells-while-leaving-normal-cells-unharmed

Edited by member 28 Feb 2021 at 14:38 | Reason: Link to article on Cancer and fasting.

User

Posted 28 Feb 2021 at 17:44

Lifestyle changes are advisedly best as an adjunct to not an alternative to medical treatment. Fasting m,ay help but won't cure.

Don't dump the Bicalutamide tablets. They are being given for a reason as part of a protocol. If you mess with that, you reduce your chances.

Just my half pence worth.

Edited by member 28 Feb 2021 at 17:46 | Reason: Not specified

User

Posted 28 Feb 2021 at 18:19

Don't stop taking the bicalutimide tablets. Assuming you're due to have an HT injection in the next few weeks, the reason you're on bicalutimide is to prevent "tumour flare" when you get the injection whereby the tumour can rapidly increase in size. It's really important to prevent that.

Best wishes,

Chris

User

Posted 28 Feb 2021 at 18:27

Don't know why people get so excited by cancer. s*** happens.

Edited by member 28 Feb 2021 at 18:36 | Reason: clarity

User

Posted 28 Feb 2021 at 18:30

Not assuming anything. Nothing's decided. This cancer I have was only found because I only flagged a slightly raise PSA of 3.4. Once decided we'll do what needs doing.

Edited by member 28 Feb 2021 at 18:35 | Reason: Not specified

User

Posted 28 Feb 2021 at 19:25

I sort of agree with you about not taking the medication until you know what treatment you will decide on.

I do agree it is better to take a relaxed view to a cancer diagnosis, but sadly for some people the disease is more advanced and the prognosis not so good.

Dave

User

Posted 04 Mar 2021 at 20:07

Hi Jacques

Hope you find the solution you are looking for. Great experience on this forum. I'm sure you know >1kg weight loss per week often has negative long term effects on the body. You obviously have great will power .

Regards

User

Posted 05 Mar 2021 at 09:39

Thanks for your message but that statement is just not proven. Don't know if you realise that living has a negative impact? You die eventually.

User

Posted 01 Apr 2021 at 14:26

Update: Finally decided course of action for my PC. Switching from Private to NHS now I'm in the system. Not difficult and a 'bonus' in some respects. I will undergo Brachytherapy followed some weeks later by a course of 5 weeks of External Beam Radiotheraphy. Should start this August. From Sunday my Bicalutamide has been increased from 50mg to 150mg daily plus an additional weekly dose of Tamoxifen 20mg to keep boobs in check. Next blood test in June. Time to get fit. Losing weight, which is helpful. Not all too terrible tbh.

User

Posted 01 Apr 2021 at 17:56

Chris

User

Posted 01 Apr 2021 at 20:56

Alltrades,

Here's a link to my post that summarises my experiences of HT/EBRT/ LDR Brachy. My Avatar gives a brief summary (click on the left). I felt a huge relief once I'd made my decision as it was really stressing me out deciding which way to go.

https://community.prostatecanceruk.org/posts/t26895-My-HT-EBRT-LDR-Brachy-Experiences

As an update, I have virtually no remaining side effects since my treatment in Dec last year.. Last month I had my first meeting with the consultant since the treatment. He was very pleased with the procedure and subsequent scan. My first blood test gave undetectable psa, but I think that's only to be expected as the HT is still in my system. The crux will come in my next blood test scheduled for Aug....that's when I will become nervous awaiting results!

User

Posted 02 Apr 2021 at 06:30

An encouraging read. After both Brachytherapy and EBRT how long were you taking HT thereafter? Am I right in reading you had EBRT before Brachytherapy? My schedule in August is Brachytherapy followed by 5 weeks of EBRT some 5 weeks after Brachytherapy.

Edited by member 02 Apr 2021 at 06:48 | Reason: Not specified

User

Posted 02 Apr 2021 at 08:09

The normal time to be on HT is two years, although in my case I asked my oncologist if I could stop after 18 months, and he was happy to agree because current research shows that the outcomes from 18 and 24 months are pretty much the same.

I started HT (150mg/day bicalutimide) in August 2018, had my RT in Feb/Mar 2019, and stopped HT in Feb 2020.

Chris

User

Posted 02 Apr 2021 at 10:42

Seems strange to continue HT after having had procedures. Guess there must be a reason for it although I'd like to be on it as little as possible.

User

Posted 02 Apr 2021 at 11:53

Best wishes,

Chris

User

Posted 02 Apr 2021 at 14:54

Originally Posted by: Online Community Member

Great description, of a complex process.

User

Posted 02 Apr 2021 at 20:32

Alltrades,

You asked re. clarification of order of events.

- Feb 20. Started HT for 1 yr (4 * 3 monthly injections)

- Oct 20. EBRT (20 fractions)

- Dec 20. LDR Brachy

They used to do 18 months HT, but found that 1 yr worked just as well. Note that they have a really high throughput in Edinburgh so assume that they know what works best for them.

Explanation re HT post procedure by Cheshire Chris seems to make sense.

User

Posted 01 Oct 2021 at 17:07

UPDATE: See my profile> I've had my HDR Brachytherapy. In a nutshell it went very well. Highly recommeded.

User

Posted 02 Oct 2021 at 09:51

That is good. I have read your profile update. I was under general anaesthetic so missed out on all the exciting parts you got to see. I needed a catheter afterwards for a short time, but HDR is definitely something I would recommend to anyone for whom it is suitable.

Dave

User

Posted 02 Oct 2021 at 22:08

I had a catheter in just overnight. A few days post procedure things are ok. I noted by day 3 extreme fatigue. I'm guessing that is normal, plus a pink tone to my urine (blood). I'm sure this will clear. I'm drinking gallons of water as recommended (I exaggerate), but generally feel fine considering. I too would recommend this process. The epidural was very good and nothing to fear. Indeed, it made the whole thing more interesting and memorable. Having never had one I was amazed how it felt. Touching ones leg and not being able to feel your hand touching your leg was like pretty bizarre. I felt like I was touching someone else's leg. Lol... Plus, trying to move parts of your body or trying to contract particular muscles was weird. Nothing connected. The human body is a very complex thing. Kind of out-of-body.

User

Posted 07 Jan 2023 at 12:26

UPDATE:

It's been a while since my last post so thought I would share my journey to date with managing this disease.

In 2021, when I was first diagnosed with Prostate Cancer, I underwent a course of Hormone Therapy. Initially I was given oral tablets but they did not agree with me so they switched me to a 3 monthly injection. This worked better for me (if there is such thing?) and this prepared me for my chosen course of treatment later in the year. In October 2021 I underwent HDR Brachytherapy. This was an interesting experience and was awake throughout the procedure. Interestingly, I was seen at the Southend University Hospital, which is a teaching hospital, so had a large audience of young doctors observing the whole process. I wasn't phased despite my modesty was in full view to all. They've got to learn somehow I guess? The procedure went well. It wasn't too painful. Some 4 weeks later I was given 23 days of External Beam Therapy. This was tough. The daily commute. Making sure my bladder was full for each session of treatment and sometimes the long wait to be seen due to one of the rooms being down. Towards the end of the treatment, this is when the radiation really kicked in. I was burnt out for a good 6 weeks with sheer fatigue.

I returned to work mid February 2022 and had my final Hormone Therapy injection about April 2022. My work was great with the support they gave me. Now, it was just a case of wait and see.

Autumn 2022 I had a blood test and saw my consultant. He was happy the PSA level stayed low (0.1). My Testosterone levels we still well below the benchmark (5.4), although pre-treatment, my Testosterone was barely over the line (7.4) they consider normal (7.0). I doubt it will be what is normal for my age (15.0) as mine was akin of the levels expected of an 85 year old man. My testosterone has always been questionable and one of the reason why, somehow, all of this came about. Anyway, my Oncologist will do nothing until about April of 2023 and they are happy my treatment was successful as they do not want to aggravate the progress with Testosterone Therapy. I have been promised, all going well in April 2023, they will refer me to an Endocrynologist to consider some form of Testosterone Therapy moving forward. It would be great to have a bit more energy and have that Vavavoom I am lacking due to low T levels. My wife and I have not had sex for over 2 years and even before it was a chore needing to take the blue pill to help sustain a decent erection. Suffering with ED was the reason they found out I had cancer of the prostate. It all escalated from ED. So, if you have erectile dysfunction, please get your PSA checked. It is not one of the common symptoms of PC and sometime overlooked. I did not have any of the classic symptoms. Just ED.

So, where am I now? Well, in the latter part of 2022 I noticed the odd occasion of blood in my Urine. In December 2022 I had a CT scan of my pelvis and they did a Cystoscopy. The CT scan showed a small area in the left ramus of the pubic bone with a sclerotic area of about 5 - 6mm and the Cystoscopy showed a raised erthematous patch in the right lateral bladder wall. Next step is my having a full body bone scan (10th Jan) and a TCI for rigid cystoscopy and biopsy for the bladder (to be arranged soon).

Yeah, not all great news but at least it is being looked at and looks like it is all being looked at very early.

This has been quite a journey.

More to follow. Hope you are all well and better New Year to you all.

User

Posted 07 Jan 2023 at 13:17

Thanks for the update. I hope all turns out OK. When they start looking they find all sorts of things.

An aviation doctor told me after any fatal aircrash they find the pilot has a whole load of undiagnosed medical conditions. Final report often says the cause of the crash was someone forgetting to tighten the bolt that holds the wings on, nothing to do with the pilot at all.

Dave

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