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.

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