3 months / 12 weeks is not the norm for everyone in every circumstance. Some men will prefer to stay with monthly / 28 day injections so that if the side effects are bad, it takes less time to get out of the system. Some oncos prefer to use the monthly or 4 weekly dose rather than the 3 monthly / 12 weekly one - but the 3 month / 12 weeks is cheaper for the NHS.
Castration - the type of HT you are on is designed to stop all production of testosterone, which put another way is to castrate you. Before we had HT, men had their testicles removed to effect the same result. This option is still used in some circumstances - for example if the man does not want or cannot tolerate the hormones. We have a couple of members who have had surgical castration rather than chemical - and it is still quite common in some overseas nations. Your dad may have chosen to have orchiectomy because he didn't want to take hormones or perhaps because he reacted badly to them. I don't think men grow breasts after surgical castration. Your dad's cancer must have been a particularly aggressive kind or the cancer had already learned how to survive without testosterone (perhaps because he had been on HT previously?) - this is called being castrate resistant. It is also possible that he had a rare type that doesn't depend on testosterone anyway.
Ray is right though - if you don't start to get some side effects in the next month or so it might be a good idea to ask for a testosterone check with your next blood test, just to be sure that you are below castrate level. Who gives you the injection?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Richard
HT is chemical castration.
Some guys who can't get T to castrate level (0.69) also report none or little HT side effects. Is there a connection or are they able to tolerate (lucky was a bad choice of word) HT well?
Did your dad have orchidectomy by choice or because his HT wasn't working as effectively as hoped.
Most likely HT is working fine it but worth a check due to your dad?
Ray
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It would be interesting and useful to know the details of your dad’s diagnosis, the type he had, his treatment and how long that worked for, as well as how long ago it was. Orchiectomy is rare and never without informed consent. How much do you know?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I appreciate why. In my time at diagnosis thus possibly in your dad's time once HT stopped working there wasn't, other than adding Casodex for a short time, any more drugs of note in the box. Thus Orchiectomy was seen as an option to try to extend life. Sounds harsh but that's all there was.
HT then had an effective working guide time of 3 years (although many guys sailed past that).
For some guys HT didn't work anywhere near that time, if at all.
Knowing which group your dad fitted into could give a guide to your type of PCa.
Ray
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Hi Richard, i think I mentioned in my last post that my hubby worked all the way through his RT for the full 7 weeks. He always went late afternoons and worked in the morning. The hospital was flexible and tried to book him in st the same time every day. The tiredness caught up towards the end it was a good thing we went on holiday. It did him the world of good. He was lucky with HT too. He did go on anti depressants for a while and those helped with the emotional side that he found difficult to deal with. Specially the loss of libido which to him seemed like the end of the world. It’s a horrible journey but you just try to carry on as normal. This forum has helped me. Even being away for 5 years I’m still seeing the same people.
Denise xx
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The GP needs a letter from your specialist - or the specialist needs to write the prescription. Perhaps phone your oncoglist's secretary and ask him/her if they can sort it out for you. Frustrating but that is how our NHS works now - if someone wants you to have meds, it needs to come out of their budget rather than the GP's budget.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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If you are really desperate to get your hands on some Flomax until your problems with the prescription are resolved it is available OTC from chemists or online at at cost of about £8 for a two week supply.
Edited by member 15 Mar 2018 at 20:44
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Cancer only has 4 stages. What do you mean by 'it's now grade 5'? Where is it written or in what context were you told this? Could it have been said in the context of your mpMRI result, which comes in 5 grades? Or was it referring to the fact that you have some 5s in your gleason score?
Your results in terms of T3b or whatever are determined by all your results, not just your Gleason.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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No, that is referred to as a grade group and is a new measurement not yet used at all hospitals. Your staging is T3b and your Gleason grade is 4+5 and your Gleason score is G9. Your Gleason score puts you into grade group 5 if you happen to be talking to an oncologist that uses the grade group rather than the Gleason.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Your grade and stage is whatever your onco says it is, depending on which scale s/he uses 😂 If you over complicate things, you will end up confused or anxious when your nurse specialist says something different or a GP letter says 3 with no context.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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It is just a quirk of the site - it moves to British Summer Time about 10 days early every year - all will be well again after next Sunday.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I don't see the problem. You have been offered curative treatment because they believe it has a chance of working. Why would you reject that and opt instead for a holding treatment that will eventually stop working and lead to early death? It seems like a no brainer to me.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Hi, Rich
I had T3b and Gleason 9 and PSA=19 and was told that it was not a good idea to have an operation in the sense of cutting. But I did have Brachytherapy and now I seem to be clear, although still on check ups. So that's an initial big zap of radiation and then regular radiation for about 5 weeks, followed by the dreaded Zoladex for two years. Its a good treatment: about 80-90 % survival after 5 years (read the papers, being an inquisitive old f).
"Castration" is only temporary: once Zoladex is stopped, so does its depressive effect, and testosterone and sex drive comes back, with sort of not bad dry orgasms. Still waiting for the erectile disfunction to stop (double negative). But, can't have everything.
I think all us heroes have copying strategies. I have my own internal fear/anger/sadness chart. My trick is simple to acknowledge which I am are feeling. I got sad mostly, a bit less recently.
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I was told BrachyT not an option due to spread so my realistic option is where I'm going.
I STILL haven't received Flomax prescription!!!!!!!! I rang again on Friday but pathetic response!! 2 weeks since onco recommended using it?
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It is an actual treatment choice - RP with RT or RP with RT/HT - and we have members for whom that has been the recommendation. But in those cases it would be referred to as ART (adjuvant) not SRT.
It wasn't offered to you - I suspect this is due to the proximity to the bladder rather than anything else but you could ask about it. Not a popular choice due to the double side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Easily said but much more difficult to do. It would be difficult to know where to stop. The Prostate is a complex organ to remove in it's entirety and this would be tantamount to a full prostatectomy. Certainly nerve bundles can be left if not invaded by cancer but where they are if left where there is cancer, the operation would seem to lose it's advantage and it is doubtful the surgeon would agree to do the op with such limiting restrictions.
Your thread is titled "Told operation is too risky"!?
Edited by member 22 Mar 2018 at 21:52
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Barry |
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Ah sorry - I misunderstood the question. I thought Rich was asking whether there was any benefit in having RP knowing that RT will still be needed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Ah okay - big brother wants it to go away and perhaps is stuck in 'if I was you I would just get rid of it' mode. Fortunately, your specialists know a bit more than your brother does but you can't blame him - especially if he knows of people who have supposedly had the op and ''been fine'. We had this problem with a brother-in-law when John was diagnosed - his 90 year old dad had PCa years ago and 'was fine' so he couldn't really see why we were upset. The trouble is that men don't often talk about the detail to others and they look fine so living with incontinence, permanent bladder damage, potential lifelong self-catheterisation etc (which your surgeon seems to think you would be at increased risk of) may not be fully understood by your brother.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Many, probably most men do not understand the complexity of PCa and the subtleties that may make a treatment more suitable for a particular individual from a clinical aspect. (Even doctors can differ in their assessments which of course makes it even more difficult for the patient). Perhaps a general view may be offered, particularly on the basis of various tables based on averages but a patient may at the extreme rather than in the middle of results. Thus comments by others that imply X is a good treatment for you or Y is not a good treatment for you because those offering such comment had respectively a good or bad experience, should not be taken as necessarily applicable to an individual.
It is true that treatments are improving and taken overall affected men are living longer but sadly not all of them and treatment can cause life changing side effects. So for those who proffer comments such as those you mention and additionally such words as 'if you have to have a cancer PCa is the one to have' trivialize the impact on men that the disease and it's treatment can have.
Barry |