Hormone treatment lack of support from NHS.

I don't think it has anything to do the NHS. I've had all my cancer treatment (HT+RT) privately and nobody has checked up on me to see how I'm doing with my HT. I think it's normal to assume that if the patient has concerns they'll visit their GP (which seems entirely reasonable to me). Your GP is your primary care provider.

Cheers,

Chris

Edited by member 09 May 2019 at 11:47  | Reason: Not specified

There is no monitoring for the HT side effects - this surprised me a bit. I had seen some mention of monitoring on US forums.

It really is up to you to make yourself familiar with them, and avoid those side effects which you don't want and can be avoided, and ask for appropriate meds where necessary. This is important because some of the symptoms can be reduced or avoided, but become permanent if you don't. That's where this forum comes in really handy.

Do you have an assigned urology or Macmillan nurse? They can be a good first contact point. They may have given you a booklet on handling side effects of HT - I got a load of leaflets/books on diagnosis, and it's worth reading them twice with perhaps a month between, as you won't take it all in first time.

At each consultation, I take a list of things I want to ask, and I also include a list of side effects in case it comes up. In one consultation, there was also a guest GP present who was spending a couple of days shadowing the urology consultant to get more urology experience. The consultant did ask me to go through the list or HT symptoms for the guest GP's sake, and that sparked a few discussions. The consultant was unaware of some of the side effects.

Here's a quick list of side effects (and I'll probably miss some). No one gets them all, and the order you get them may be completely different to anyone else. Some research has shown the medical profession think people don't want to know in advance, but when researchers questioned patients, that is not borne out, and most do want to know what to look out for. In the case of HT, many can be avoided if you know what to do at the time.

Loss of nocturnal erections and "morning wood".
This is more important than you might think - see Reduction in erection size below.

Loss of libido.
This can have a major impact on relationships, and it's important you both communicate and understand this, and find ways to keep your relationship working. Counseling may be available.

Loss of semen (dry orgasms).
This doesn't stop you having orgasms, but they may feel different (for some people, better).

Improvement in urinary flow, if it was slow.
This is because it shrinks prostate, and so it may press less on urethra.

Reduction in erection size.
This is also tied in with Loss of nocturnal erections, and loss of libido.
Loss due to HT is avoidable, see https://community.prostatecanceruk.org/posts/t21301-Penis-size#post216227
(However, loss due to other treatments is unavoidable.)

Shrinkage of testicles.
Unavoidable (although I don't know if everyone gets it or notices it). May be some reversal after HT ceases.

Nipple pain and breast growth (gynecomsatia).
Most people can avoid or reduce this by taking tamoxifen (70% success rate, but contra-indicated in case of other medical conditions such as DVT) or a one-shot RT blast to breast tissue (50% success rate, but 1-2% chance of minor damage to heart muscle, although this is not normally even noticed). There is some disagreement about whether these have to be started or done before gynecomsatia starts, but certainly you don't want to leave it for any length of time after it starts if you plan on using either of these. Some people who get gynecomsatia report a little breast shrinkage when they come off HT, but not a return to no breasts. Breast reduction surgery afterwards may be available in some cases too.

Thinning and loss of body hair acquired at puberty.
This mainly impacts chest, back, arms, legs, armpits. Beard and pubes tend to grow slower, but for most people are not lost. (Maybe they are for people on lifelong HT - I don't know.)

Hair on head - may get some reversal of balding, or a pause in balding getting worse whilst on HT.

Hot flushes.
This is often identified as a particularly annoying side effect. It can start soon after starting HT, or after as much as a couple of years, but not everyone gets it at all. If it's bad, there are drugs which might help, but they are also backstop drugs if your PC later becomes uncureable, and use at this early stage may reduce your options later. Also things like acupuncture help some people, and identifying and avoiding particular triggers.

Change in body composition.
There's a tendency to put on fat on waist and thighs (a more female form). Watching what you eat and doing exercise can reduce this, but it's difficult to completely avoid. People report some reversal after HT finishes.

Loss of calcium from bones.
Bones need testosterone, calcium, and vitamin D to remain strong and healthy. You will be missing testosterone, and the alternative which works for some people is exercise which involves stress/shocking bones (together with the calcium, and vitamin D). Jogging is the most effective, and weights, and you might want to discuss taking calcium and vitamin D supplements with your GP. If you can't exercise and you are suffering from loss of bone calcium, there are other drugs that may be used.

Loss of body odor.
Deodorant no longer required, although perspiration is as before. Very useful for summer exercising.

Fragile fingernails.
A hand and nail moisturiser may work.

Fuzzy memory.

Difficulty in gaining and retaining muscle.
Testosterone is an important factor in muscle gain in men, which makes it much harder to gain muscle, or even retain muscle. Exercise may be key here, providing you are eating enough protein.

Blood pressure.
Can cause an increase or decrease in blood pressure.

Blood Glucose.
Can raise blood glucose levels, resulting in Type 2 Diabetes

Edited by member 18 Jun 2019 at 21:36  | Reason: Added more possible side effects.

Andy62 - an excellent summary of the side effects of hormone therapy. 

Ulsterman

I've experienced the side-effects of breast growth (sorted out by taking Tamoxifen) and weight gain since being on HT. I've also completely lost my body odour - I can sweat like a pig and it's completely odourless😀.

Cheers,

Chris

I'm 57, and doing loads of exercise.

I took the list from my diary, and added other things I'm aware of from this and other forums, and the research I did around HT when I first started it. (I just edited that post and added a couple more possible side effects.) I have specifically checked for the possible side effects. Many (possibly most) people may not do this and may be unaware of some of them (in which case, they clearly aren't any concern).

In the order they hit me:
Loss of nocturnal erections and "morning wood". (probably from day 2).
Blood pressure increase (2 weeks).
Loss of libido (3 weeks).
Loss of semen (gradual, gone at 8 weeks).
Testicle size reduced (noticed at 9 weeks and still continuing).
Nipple pain (11 weeks), and breast bud growth (12 weeks) - both completely reversed by tamoxifen (at 25 weeks - could have been much faster if I'd understood tamoxifen dosing better at the time).
Body odor gone (noticed at 13 weeks but could have happened earlier - it wasn't a side effect I knew about beforehand).
Thinning of body hair (13 weeks, and continuing).
Fragile fingernails (30 weeks, fixed by hand and nail moisturiser).

Things that haven't hit me (yet):
No Hot flushes.
No Weight gain (although I might be starting to see it, but too early to be sure).
No erection problems or loss of size (I took the "use it or lose it" advice very much to heart from the start, although it's surprisingly difficult with no libido).
No fatigue (beyond what I'd expect from increasing my exercise level substantially).
No memory problems (at least, not that I can remember).

No idea about loss of calcium. My exercise is cycling, which is not the best choice for bone strength, but miles better than nothing. I bought a pull-up bar which I used for a couple of months, and then pulled a tendon, which is still painful some months later, so that's on hold. I self-medicate with one AdCal-D3 tablet per day, which is half the RDA for calcium and vitamin D3, this taken before exercise.

Muscle - I managed to put some on during first 6 months, but struggling to maintain that recently and might be going in the opposite direction now, but too soon to know yet.

Edited by member 03 Jun 2019 at 13:02  | Reason: Add another side effect

Think it’s the nhs in general my husband had prostate removed March 20th catheter out 27 March no one has been in contact and he’s in agony wen weeing he’s  seen his own doctor 4 times in last 2 weeks with problems he’s having he should of gone back to see consultant on 6 week for biopsie results I eventually got hold of specialist nurse today she said appointment is in the pipeline I think once they get you on the books for treatment they get paid for it and after that they don’t really give a s*** your just a number 

Looking back at Andy62’s list of side effects, I have to say that as a man in his late 40’s on HT, I think it’s a very accurate list.  I had a RP, so my erection and ejaculation issues were already present when I started HT.  I experience nearly all of the other side effects.  There may be some men who don’t experience the side effects, but, in my experience, they are not to be underestimated.  To me, HT is a necessary but very unpleasant treatment and I can’t wait to come off it in August.

Ulsterman

Of course the NHS is understaffed and underfunded!! There are many examples one could give of this and indeed you gave one in your post of 10th May at 10:20. You complained about the difficulty of getting an appointment with your GP. The appointment system you referred to (which is very similar to my present surgery), has been adopted because the GP's are struggling to cope with the work load, so much so that they are even resorting in many cases to using reception staff at triage medics to help determine priorities and where appropriate to decide whether a telephone appointment would suffice rather than an a surgery one. And when you can't get through to reception there is a recorded message saying that if you believe your problem could be urgent you should call 111 or go to A&E immediately, where you will doubtless be triaged and experience a wait because the doctors there are so permanently overloaded. Then if you are in a pretty bad way you might might have to be held temporarily on a trolley or unsuitable area until a bed becomes available because unlike some countries where they have beds waiting for patients, in the UK there are often patients waiting for beds. This means somebody has to regularly check with other hospitals on whether a bed has become available. Despite the Government endeavoring to eliminate mixed sex wards they still exist due to pressure of numbers requiring admission and for other reasons. Then it's come to the stage where notices have to be put up in surgeries and hospitals because staff are being subjected to abuse from people who are intoxicated or affected by drugs or disgruntled. Police had to be called twice to my ward during a 9 day stay I had in hospital. Not surprising in the circumstances that moral is low also not helped by pay restraint,

As in any major organization there are going to be mistakes and sometimes things that could be better organized, although thankfully much greater effort is made presently to ensure patients are getting the right treatment and operations. I disagree with you about a lowering of standards and qualification of nurses. In fact they are more highly trained and skilled nowadays and have taken on more responsibilities and some that were previously undertaken by doctors. More training places, better pay and conditions would assuredly lead to higher standards but these are not presently low. I am not surprised that you experienced a more congenial and polite experience in a private hospital where they are undoubtedly better resourced numerically and enjoyed a less pressurized environment. Of course staff are going to be attracted away to private hospitals where they have better pay and conditions or as many do become agency staff serving the NHS where they are better paid for doing the same job. Provide better pay and conditions and not only could more existing staff within the NHS be retained but others be attracted into the profession if given the opportunity. As the saying goes, 'You get what you pay for', or are prepared to pay for be it private or state run.

I don't profess to have an intimate knowledge of the NHS but my wife's sister was a nurse and we have a GP in the family and also a nurse in my discussion group who has enlightened us on the current situation. I have also had a lot of medical problems for which I have been treated within the NHS and privately, so I know something of it and can make comparisons with treatment I have had in several countries abroad, both civilian and military. I reiterate, the NHS is too understaffed and underfunded to do deal well with it's ever increasing work load.

Alan, you say ".. go to any NHS establishment and you are overwhelmed by the numbers of staff members and not all of them being used to their full potential." Demonstrably untrue because you haven't been to every establishment and I could take you to many where this is not the case. So don't try to justify your assertions by uninformed assumptions. I suggest you learn some of the facts as for example we have almost the worst Doctor to Patient ratio in Europe. Suggest you read this and other reports on the NHS to educate yourself on the subject - http://www.pulsetoday.co.uk/news/gp-topics/employment/uk-has-fewest-doctors-per-1000-patients-in-eu-finds-think-tank/20036765.article

In my area, as in many others, the GP numbers have not kept pace with the growing population and when on occasion my GP has phoned me he has apologized for the lateness due to the considerable number of calls he has had to make (and he is working beyond his normal hours.) But even the non medical staff are struggling to keep up.  Last week I received the written report from UCLH about a procedure I had in December last.

Some of the nurses struggle as coming from abroad they are not familiar with the ways of the NHS and English is not their first language. There was one such young Italian nurse on my ward who was rather at a loss but this makes my point that they are here because we are desperately short of nurses and some of them were working well after their shifts without overtime pay, as I learned first hand. We have a growing and ageing population who are expected to be cared for and the medical profession are using more advanced equipment and systems and sometimes experiencing serious abuse. Some consultants and senior administrators may not be severely affected but most of of the staff are and pay increases have been restricted so that many are worse off than they were several years ago. In these circumstances it's not surprising that they wish to address this through unions as well as the fact that they want to avoid a worsening situation for patients.  And overstretched staff being expected to keep tabs on patients not needing monitoring between appointments would add further to the work load and cost.

I am not going to comment further on this because it would clearly take too long to convince you how wrong you are other than in regard to the over issue of drugs, something that is being addressed in the NHS and elsewhere.

Edited by member 13 May 2019 at 09:50  | Reason: Not specified

No your right I haven't been to every medical establishment in the country that would not be possible so I base my assumptions on what I have personally experienced.

There are extremes in the system from a rural practice with few patients to city based practices who are dealing with high populations and localised social problems.

Why do we have so many more foreign workers now in the NHS it's because the people born and trained in the UK are disillusioned and fed up with the poor management and obvious wastage in the NHS and moved on most reluctantly to bigger and better things.

With some current NHS staff unable to understand or speak English as you stated the situation can only get worse with more mistakes and an increase in medical claims against the NHS which are at a all time high.

The NHS as we know it needs major surgery immediately or it will implode on its self with disastrous consequences for the country.

I thought everyone knew that. You can probably find your GP’s financial accounts on their website or at Companies House.