Diagnosed with an aggressive and advanced form of Prostate Cancer in November 2021
Have tried Degarelix which severely damaged my Liver - Had the 1 dose (The initial 3 times maintenance) and my Testosterone & PSA stayed at Zero for a Year - Started to fee; poorly so tried a different less invasive form of Hormones Goserelin had 2 doses before once again my Liver was badly affected so
My Great Bedside manner Urology Surgeon said in the midst of a Telephone Consultation that an Orchiectomy would be the best Financial way forward.
He said he would call again in 6 weeks (Due on Monday) - I have major Issues
It would look abhorrent - But only me would see it and he did say that he would EVEN put in false ones and as they are useless to me now why keep them ?
If it's so great why do Prostate Cancer Patients suffer eternal Hot/Cold Flushes.......... ?
What are the side-effects "Does my Voice Rise in Tone" my Urology Nurse says that Body Shape does occur "Is this the Breast growth and Rounded Stomach" ?
The Consultant replied to my "No Way I would rather be dead " with "You seem particularly attached to yours" I have no idea is that was meant to be funny but ut wasn't
Apart from that Consultant I had initially be told "we only castrate old men being awkward with the Injections " this was a young Lady - when i said that could be me in 5 yrs she said "OK we will leave your B*lls alone"
I need more information as some figures are 90 against 10 % for Hormone Therapy over orchiectomy consequently it's so difficult to find anyone who has known of this being done - Certainly My Hospice and Urology CNS have bothe be honest saying they have never come across anyone who has been Surgically Castrated
When I googled "Surgical Castration " the majority were questions about peoples Dogs :-)
Any info would help me enormously atm I think I will let the Cancer run its course
Thanks apologies for length
Colin
Hello Colin, this sounds such a big decision for you to have to make and I am really saddened that any professional, let alone a young woman, should deal with you so insensitively!
im afraid I don’t know much about surgical castration but I think there are some big issues involved here!
first, it is irreversible! Hormone therapy can be stopped and hopefully your body will start to produce its own testosterone again. This will not happen if you have the surgery - ever.
second, this could have a big psychological impact on both your body image and your self identity. You might need some help with this?
third, you say you would ‘rather be dead’ than have the surgery. Is this really so? You obviously need some sort of intervention to stop the prostate cancer ‘feeding on’ the testosterone. If you can’t tolerate the drugs and don’t have the surgery either, the chances are that your cancer could kill you. Are you prepared for that eventuality sooner than you would have wished?
I hope this helps your decision making and wish you all the best whichever you choose.
I presume you have advanced prostate cancer, so lifelong hormone therapy?
Surgical castration (bilateral orchiectomy) is more common in countries where hormone therapy drugs are too expensive or too difficult to administer in rural areas. I have come across people in the UK who've had it done, sometimes under the slight misapprehension that the side effects are due to the injections, but actually, they're due to loss of Testosterone, so they don't usually change much if you switch to surgical castration, but I don't know if there are any finer points. You would lose the opportunity to have a hormone holiday (intermittent hormone therapy), but that may not be suitable for you anyway depending on the aggressiveness of the cancer. You would (or could) get full sized bollocks, rather than the shrunken ones you get on hormone therapy.
Thanks for the message both you and "Worried Wife" - I have cirrhosis of the Liver - damaged so badly decades ago but I was still ticking along with a GammGT of 400 to 500 - A Social Drinker should be below 30 - So when I have had Hormone Therapy that has spiked to 1200 at one stage and I really did think that my time was up - But it gradually drained down to the norm for me - I said to my GP could my Liver be so damaged that it takes much longer to get rid of the Hormones so the Urology Surgeon said "Hmm could be the case" so he arranged the meeting on Monday - My PSA & Testosterone are Zero and my GGT is still ridiculously high at 960 but its coming down - Hopefully he will let me wait until the PSA testosterone rise and then give me a different Hormone Therapy.
I had my Goserin (Spelt wrongly sorry) delivered by the Chemist yesterday by mistake - I was bored so went onto the NICE website (Its very Good ) and it said that the Goserin pre-filled Syringe pellets cost £270 - so can see where the Consultant is coming from - plus I am 59 so could have literally 100s of these.
Thanks again for contributing to my cry for help :)
Hello Colin
First and foremost, the comments from your health providers are distasteful and unnecessary and if I was in your shoes I would lodge a complaint.
You mention that you were diagnosed with an aggressive and advanced cancer in November 2021. As such you will be fully aware that Androgen deprivation therapy (ADT) is the gold standard for treating metastatic prostate cancer and can be achieved either by surgical or medical castration.
Surgical castration is obviously more extreme and irreversible in its impact and these days is uncommon. The benefit over medication is that it eliminates the side effects of the drugs. I presume it is your proposed solution as your cirrhosis makes you more vulnerable to the side effects of the drugs.
It's a difficult choice and I think worried wife makes an excellent suggestion when she recommended that you are clear on the psychological support will be available for you as this will be a very tough gig.
Best wishes
Rens
Thanks for the input Rens - atm I am not going to choose anything as I don't have any idea tbh
I will say to the Consultant "what are the Pros & Cons with surgical or Medicinal" - Its the 1 month down the line after surgery "Nope not happy with this i'ld like to go back - which terrifies me - The Gent above said that all of the Feelings and Body changes are because of the lack of Testosterone - I didn't know that - The only Pro I can honestly see is that I wont die 6 months from now - The Urology Nurse Specialist was so honest she said that she has only been in the Job for 3 yrs and cant give me any information as nobody has gone down that route - Anyway thanks for the messages the do help - I omitted I hope all of you are getting the best treatment and continuing living a good Life :)
I think you need to find out exactly what it is that upsets your liver; the hormone therapy drug, or the lack of Testosterone. You might need a combination of heptologist/endocrinologist/andrologist to get this right answer. You should ask your oncologist how to find this out because they'll need to refer you.
If it's the drugs, is this something that applies to all LHRH hormone therapy drugs, or could it be that one of the two you haven't yet tried (Prostap/Leuprorelin, Decapeptyl/Triptorelin) might work better for you? These are both available in short doses (1 month and 4-weeks respectively) to try initially, although after that they usually given as 3-monthly or 12/24-weekly doses respectively once you've been shown not to be allergic.
Hello Andy
Thanks for taking the time to reply to my scream for help - It's appreciated.
After Degarelix (3 times maintenance dose) which really made me Poorly but it did keep my testosterone down for a Year and it wore of quite quickly and my Liver reached it's normal level - The latest one Goseren I had 2 of the pellets injected 28 days apart the Liver went mad again but this time my GGT(Basically how Bad or Good the Liver is - should be less than 30 in a Social Drinker) is still in the 900s - it's coming down very slowly considering the last one was done on 2nd January - I specifically asked the Consultant for one which is the best regarding my Liver - I think he contacted Heptology - I know it isn't the loss of Testosterone as he said when a man can't tolerate Hormone Therapy we Surgically remove them - I spoke to him this morning - I just want to know how long I have to Live without the Operation and with it - I wouldn't go through that for a few months.
To give an idea how bad my Liver is I had a gastroscopy (hosepipe down the throat) to look at the varicous Veins in my Food Pipe - They didn't show any old Bleeds and luckily were small enough not to need anything doing - These are caused when the Liver cant cope with the amount of Blood flowing through it so enlarges in my case the veins in the stomach lining and oesophagus
Sorry back to the Cancer he asked his Secretary to book another talk in 6 weeks whilst he asks the various Departments to get me hopefully a Ballpark figure.
I have seen 3 different Consultants over 2 years they tend to pass me on to any Registrar speedily as when I was in Hospital for 40 days in 2021 unable to Pee they missed my 3 x enlarged Lymph Nodes and abnormal Prostate on a CTscan in July plus a physical exam was wrong - Finally as an outpatient in late November I was diagnosed with PC.
So if you ever go anywhere in the NW of England avoid the Hospital that has 9 letters and begins with L.
Best wishes and Good Health
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