I wonder if anyone can answer from knowledge or experience if there is an H.T. ie injection, pill, including dose, or frequency etc that is the least onerous?
Hello Dedalus and welcome to the forum, I am so sorry to hear of your diagnosis. As urothelial carcinoma of the prostate is very rare you may not find anyone with a similar diagnosis on hear, but you will find many who have been on HT who will gladly share their experiences with you, If you click on peoples usernames you can read their profiles detailing HT treatment and side effects, from what i have learned HT no matter which one you are prescribed effects people in different ways, i was on prostap like many on here and our experiences regarding soreness from the injection to side effects, when, which and duration really are unique to the individual, We would have all liked to have the option of a side effect free treatment, and a few do get away with hardly any problems but my opinion it's down to luck take car, Eddie
My profile was a hangover from another cancer forum. It may have misled you, so I have deleted it.
I am currently waiting for my biopsy result. It has been 4.5 weeks and counting. All my investigations have been quite slow My MRI indicated a 14mm tumour on the left side of my prostate, and 'something' on the right.\ My last PSA was 14+. Curiously, the consultant said my DRE felt 'normal'.
In all honesty, H.T. scares me more than any of the treatments. I don't want to take H.T. but hope, if depending on my prognosis, I absolutely have to take it, it would only be for a few months, and the least onerous., if such an HT exists. For example, are injections better than pills, is any one type better than another, etc?
I am asking these questions in advance of my biopsy results, (which I hope will be no later than another couple of weeks) because it may help in my decision on whether I will take H.T. or not.
If you are up for a long read I have found this review of the development of hormone therapy, when it is used and its benefits vs risk analysis. It also explains how the different types of tablets and implants work and for which type of PCa they are most effective. It also summarises all the different trials plus it reviews its use with chemotherapy and with or without use if having radiotherapy.
Morning Dedalus, That your consultant said your prostate felt normal is good news, I see Alwayshope has given you some good information and hopefully with that and what the guys tell you regarding their personal experiences you will have a better idea on your options, take care, Eddie
If you have managed to wade through the link I gave then in summary - if you are offered hormone therapy it is for a reason based on your particular diagnosis. The type of HT is tailored to you. The side effects are pretty common to all types but some of the newer generation drugs have less long term consequences and give a better prognosis particularly for those with advanced PCa. There are medications which can counteract some of the side effects of HT such as man boobs provided it is started early. Things like Calcium and Vitamin D supplements from the start help protect the bones. Most of the effects of of HT can be reversed once you stop talking it but can be mitigated if you help yourself with such things as exercise and diet. Everyone's journey with HT is individual to them but you should make sure that you are monitored regularly whilst you are on it so that any adverse side effects can be countered and dealt with early.
Many thanks for that contemporary comprehensive reference. It has helped quite a bit in terms of the percentage risk/benefits of H.T. etc. Hopefully, it will inform my decision on H.T. when I receive my biopsy results. I must admit though that reading all the side effects in the paper is really scary. There are also negative. anecdotes of what H.T. does to elderly men. There are expressions like my husband aged 10 years as a result of H.T.
I also have two health issues that H.T. may impact. I have only one kidney and associated CKD with a lower GFR of 42, There seem to be contrarian studies on how harmful H.T. can be in this scenario. I also get intermittent spells of arrhythmia, and the potentially negative cardiac effects are a concern.
I wanted to have all my ducks in a row when given the biopsy results because I am concerned that with the current system of delays, they may push H.T. as a holding strategy until R.T. which I wouldn't want. If I opt for no H.T. I would want to move to RT right away. There have already been too many delays since my elevated PSA was discovered in July 23.
I agree it is all a balancing act of the benefits of one type of therapy against the risks of possible side effects, particularly if we have additional health issues. My husband has CKF as well as heart problems which are monitored by his nephrologist and cardiologist as well as the GP, urologist and oncologist. He has been on HT for the last 41 months, as well as had 33 sessions of radiotherapy and 6 cycles of chemotherapy, and so far it has had no impact on kidney or heart function, plus he is now 80. For us it was a no brainer to have the HT, the alternative was death a lot sooner as he is T4. At least you now have more information that you can discuss with your medical team. Just make sure that they are fully aware of your additional medical issues, your concerns which should be taken into account, and then ask what the pros and cons are of the particular treatment path they are recommending. I would also ask what are the consequences of choosing not to have HT if that is what they are proposing. They are the experts and should be able to give you honest answers so that you can make an informed decision.
I did find a research paper that suggested that Decapeptyl has a lower impact on quality of life when compared with Zoladex but found no difference in the clinical outcomes.
I will see if I can find it for you but if you Google side effects Decapeptyl vs Zoladex you should find the paper.
Of course this still comes down to individual tolerance at the end of the day but I found the paper useful.
I am on Decapeptyl which seems to suit me as an individual.
I really appreciate your concerns with this - especially as my husband has really aged since taking the HT. however, I think there may be some things you have not considered as follows:
There is a nationwide shortage of oncologists and oncology resources so the chances of getting your RT quickly might be impacted - especially considering industrial action and long waiting lists.
My understanding ( which might be wrong!) is that the HT is beneficial before the RT as it causes the tumour(s) to shrink and be more vulnerable to successful RT. HT also stops the cancer from growing while you are waiting for the RT and this is also useful post RT for any lingering cancer cells that have not been killed off
The length of time recommended for HT can be as low as 6 months - depending on the aggressiveness of the tumour and the risk score. This is barely enough time for the side effects of the HT to really take hold before you are contemplating completing the course
The side effects of the HT are mostly reversible and you can mitigate some of them by keeping fit, taking calcium supplements etc
As our oncologist said to us, you have just one chance at cure. Why not reach out for that one chance and follow the best medical advice? I would sooner my husband was here with me even if slightly more aged and rounder than before! He is still living a full life and has just told me he thinks we’ve had the best Christmas for a long while! Lots of lovely family time, lovely memories and lots of happiness! Would you be denying yourself the chance of this cure if you did not follow the best medical advice?
Of course, nobody can or should make you do what you don’t want to do. You are in control of your own body and what is or is not done to it.. I respect absolutely and admire your need to be well informed and to use that information wisely to make your decisions. Here, we are all speaking from our own personal, subjective experiences and understanding of our own emotions and responses to treatment - ie anecdotally rather than scientifically evidenced and statistically informed. I would recommend looking at as much reliable evidence as you can.
I do hope you can reach the right decision for yourself and that it all goes well. I feel very strongly that the decisions you men have to make are impossibly difficult!
