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Questions,questions!

User
Posted 27 Dec 2020 at 08:16

I was diagnosed on the 23rd December and started bicalutamide on the 24th so things are moving fairly quickly! I’ve also got a 3 month Prostap injection which I think is going to be administered on January 8th. As you can imagine I have a million questions!

1. After the 28 day bicalutamide injections and the Prostap do I basically stay on a 3 month injection regime I.e. does the bicalutamide stop?
2. I am having a bone scan on Tuesday. Hopefully it’s going to be negative but if not how does that change the treatment?
3. My libido already seems reduced but that might just be the stress. Is it too early for that to kick in?
4. When the RT is finally finished do I still have a prostate? And will it eventually recover to normal operation?
5. Can you still work during the RT phase? I know it may affect people differently.

At the moment I’m still in the dazed and confused stage but hopefully after Xmas I can start to see the shape of this thing!
Thanks

Barry

 

 

User
Posted 27 Dec 2020 at 12:27

Hi bazzer. 

1. Bicalutamide will be stopped after 28 days, your first injection will be given near to day 14. You will then be on 12 week or 3 month injections (it depends on exactly which drug is used). If you were not on bicalutamide the first injection causes an imbalance in your hormones which could make matters worse until it settles down.

2. If the bone scan were positive, it would probably change your treatment plan. RT is aimed at the prostate, but a positive bone scan would mean the cancer is already outside the prostate so a treatment aimed at the whole body would be required. HT can do that, but it would then be for life rather than just a year or two, chemo may also be required.

3. I can't remember how long it took to lose my libido, it didn't take long though.

4. Yes you will still have a prostate, but it will be badly damaged and unlikely to recover (dry orgasm). Because you will still have some healthy prostate cells your psa will not go to zero. That means it is not easy to know if the RT killed all the cancer, or if it is just healthy cells producing normal psa.

5. You may be able to work during RT, but your going to have to travel to hospital wait for your treatment and get back to work, and that might be for six or seven weeks. I certainly would not commit to working full time during that period, but you may manage part time. Some people get fatigue and would find it difficult to work towards the end and for a few weeks after RT.

Hope that helps. 

Dave

User
Posted 27 Dec 2020 at 13:04
Absolutely brilliant Dave. My company is very understanding and my workload is managed by me really!

I haven’t had a MDT review as of yet but my Urologist thought it’s best to start the HT straightaway. I guess in my mind it’s starting to hit the cancer ASAP. Do you do the bicalutamide if you’re going the surgery route?

I had a Bowel tumour removed 15 months ago and, although ileostomy bag and reversal dragged it out, it did feel over and done with. Even rang the bloody bell! This feels like it may be for life, however long that may be! I feel this has hit me much harder but I’m still in the unknowing phase I guess.

Wet orgasms are vastly over rated I say and I have a very understanding wife who is a lifelong member of Ann Summers! Looking forward to experimenting with possible treatments!

Just like the Bowel forum this place is invaluable particularly at the start when my grasshopper mind is leaping all over.

Thank you so much

Barry

User
Posted 27 Dec 2020 at 17:17

Hi bazzer, 

It would be unusual to have HT if one was having surgery, but it is done occasionally, particularly if the surgery is being delayed for a few months, for some reason.

Prostate cells are switched on by testosterone, and switched off by a lack of it. If you have RT and HT together the RT damages the cells and the HT stops them repairing and regenerating. If you are having surgery the cells are all going to be cut out, so there is no point in HT, unless there is some risk that the cancer has spread or may be just on the verge of spreading.

HT could affect your relationship, be aware of this and take care of each other. Following link is a useful discussion. 

https://community.prostatecanceruk.org/posts/t21271-Relationships

If the cancer has spread then it is not possible to target the treatment to all the places it will have spread to. HT will switch the prostate cancer cells off, but eventually the cancer gets used to the new situation and starts to grow again. It is then a case of switching to progressively more aggressive medication to control the cancer, but eventually it will win. So hopefully yours is caught early enough that some treatment to the prostate will kill all the cancer cells in situ.

Just because you are now on HT does not mean that it has been decided you are having RT, or that the cancer has spread. It just means your urologist wants to get some treatment started straight away. Once you have bone scan results and MDT have met, a more definitive treatment plan will be decided. 

Dave

User
Posted 27 Dec 2020 at 20:08

Excellent answers by Dave.

Originally Posted by: Online Community Member
3. I can't remember how long it took to lose my libido, it didn't take long though.

The ability to have sex with someone else, at least naturally, is probably lost quite quickly.

The ability to have a w**k by yourself will probably last longer but gets more difficult, and you may need some more help with arousal. I've never lost this ability, but the incentive to do so had completely gone after a year. However, you must still do it if you can, to preserve health, and I have been able to, but have not bothered as often as I should.

I got some good advice from a couple of ED clinic sessions - one when I was just starting HT, and another about a year later. I was lucky that my GP put me straight onto 5mg daily Tadalafil before I even asked, although I didn't use it much for the first year (until a urologist told me I should use it anyway, even if not required).

Originally Posted by: Online Community Member
4. Yes you will still have a prostate, but it will be badly damaged and unlikely to recover (dry orgasm). Because you will still have some healthy prostate cells your psa will not go to zero. That means it is not easy to know if the RT killed all the cancer, or if it is just healthy cells producing normal psa.

The repeated RT and healing cycles cause extensive fibrosis of the prostate and seminal vesicle muscles, turning it into a hard organ which probably can't contract anymore. I'm told prostates are on average 5% effective after RT, but this varies from 50% in a few people to 0% in most people, so as Dave says, you may have a dry orgasm, and if there is any semen, it will be much reduced. Those with low grade prostate confined cancer usually don't have seminal vesicles treated, and they may still work and produce some incomplete semen. The hormone therapy temporarily stops semen too.

Radiotherapy and lack of semen impacts orgasms much less than people imagine beforehand, and probably more than half the patients say orgasms can feel better afterwards, but for some they're not as good (and the hormone therapy may dull them until you finish that and get your testosterone back).

Edited by member 28 Dec 2020 at 10:20  | Reason: Not specified

User
Posted 27 Dec 2020 at 20:26

Apparently some people don't lose their libido, but I think that is very much the exception, I would assume over 90% lose libido. You don't really notice it has gone, but your partner will. So make sure you talk about things and keep your relationship working. Hopefully you are only on HT for a few months or a couple of years.

Dave

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User
Posted 27 Dec 2020 at 12:27

Hi bazzer. 

1. Bicalutamide will be stopped after 28 days, your first injection will be given near to day 14. You will then be on 12 week or 3 month injections (it depends on exactly which drug is used). If you were not on bicalutamide the first injection causes an imbalance in your hormones which could make matters worse until it settles down.

2. If the bone scan were positive, it would probably change your treatment plan. RT is aimed at the prostate, but a positive bone scan would mean the cancer is already outside the prostate so a treatment aimed at the whole body would be required. HT can do that, but it would then be for life rather than just a year or two, chemo may also be required.

3. I can't remember how long it took to lose my libido, it didn't take long though.

4. Yes you will still have a prostate, but it will be badly damaged and unlikely to recover (dry orgasm). Because you will still have some healthy prostate cells your psa will not go to zero. That means it is not easy to know if the RT killed all the cancer, or if it is just healthy cells producing normal psa.

5. You may be able to work during RT, but your going to have to travel to hospital wait for your treatment and get back to work, and that might be for six or seven weeks. I certainly would not commit to working full time during that period, but you may manage part time. Some people get fatigue and would find it difficult to work towards the end and for a few weeks after RT.

Hope that helps. 

Dave

User
Posted 27 Dec 2020 at 13:04
Absolutely brilliant Dave. My company is very understanding and my workload is managed by me really!

I haven’t had a MDT review as of yet but my Urologist thought it’s best to start the HT straightaway. I guess in my mind it’s starting to hit the cancer ASAP. Do you do the bicalutamide if you’re going the surgery route?

I had a Bowel tumour removed 15 months ago and, although ileostomy bag and reversal dragged it out, it did feel over and done with. Even rang the bloody bell! This feels like it may be for life, however long that may be! I feel this has hit me much harder but I’m still in the unknowing phase I guess.

Wet orgasms are vastly over rated I say and I have a very understanding wife who is a lifelong member of Ann Summers! Looking forward to experimenting with possible treatments!

Just like the Bowel forum this place is invaluable particularly at the start when my grasshopper mind is leaping all over.

Thank you so much

Barry

User
Posted 27 Dec 2020 at 17:17

Hi bazzer, 

It would be unusual to have HT if one was having surgery, but it is done occasionally, particularly if the surgery is being delayed for a few months, for some reason.

Prostate cells are switched on by testosterone, and switched off by a lack of it. If you have RT and HT together the RT damages the cells and the HT stops them repairing and regenerating. If you are having surgery the cells are all going to be cut out, so there is no point in HT, unless there is some risk that the cancer has spread or may be just on the verge of spreading.

HT could affect your relationship, be aware of this and take care of each other. Following link is a useful discussion. 

https://community.prostatecanceruk.org/posts/t21271-Relationships

If the cancer has spread then it is not possible to target the treatment to all the places it will have spread to. HT will switch the prostate cancer cells off, but eventually the cancer gets used to the new situation and starts to grow again. It is then a case of switching to progressively more aggressive medication to control the cancer, but eventually it will win. So hopefully yours is caught early enough that some treatment to the prostate will kill all the cancer cells in situ.

Just because you are now on HT does not mean that it has been decided you are having RT, or that the cancer has spread. It just means your urologist wants to get some treatment started straight away. Once you have bone scan results and MDT have met, a more definitive treatment plan will be decided. 

Dave

User
Posted 27 Dec 2020 at 19:37
Thanks for that Dave. The relationship information is very interesting and a little frightening. Is it possible that one doesn't lose their libido or is it a given side effect of HT? I had ED after my surgery for bowel cancer but its returned now. Probably just in time for it to disappear! I love my wife and although we have a decent sex life its never been the main driver of our relationship so hopefully we'll manage life!

Barry

User
Posted 27 Dec 2020 at 20:08

Excellent answers by Dave.

Originally Posted by: Online Community Member
3. I can't remember how long it took to lose my libido, it didn't take long though.

The ability to have sex with someone else, at least naturally, is probably lost quite quickly.

The ability to have a w**k by yourself will probably last longer but gets more difficult, and you may need some more help with arousal. I've never lost this ability, but the incentive to do so had completely gone after a year. However, you must still do it if you can, to preserve health, and I have been able to, but have not bothered as often as I should.

I got some good advice from a couple of ED clinic sessions - one when I was just starting HT, and another about a year later. I was lucky that my GP put me straight onto 5mg daily Tadalafil before I even asked, although I didn't use it much for the first year (until a urologist told me I should use it anyway, even if not required).

Originally Posted by: Online Community Member
4. Yes you will still have a prostate, but it will be badly damaged and unlikely to recover (dry orgasm). Because you will still have some healthy prostate cells your psa will not go to zero. That means it is not easy to know if the RT killed all the cancer, or if it is just healthy cells producing normal psa.

The repeated RT and healing cycles cause extensive fibrosis of the prostate and seminal vesicle muscles, turning it into a hard organ which probably can't contract anymore. I'm told prostates are on average 5% effective after RT, but this varies from 50% in a few people to 0% in most people, so as Dave says, you may have a dry orgasm, and if there is any semen, it will be much reduced. Those with low grade prostate confined cancer usually don't have seminal vesicles treated, and they may still work and produce some incomplete semen. The hormone therapy temporarily stops semen too.

Radiotherapy and lack of semen impacts orgasms much less than people imagine beforehand, and probably more than half the patients say orgasms can feel better afterwards, but for some they're not as good (and the hormone therapy may dull them until you finish that and get your testosterone back).

Edited by member 28 Dec 2020 at 10:20  | Reason: Not specified

User
Posted 27 Dec 2020 at 20:26

Apparently some people don't lose their libido, but I think that is very much the exception, I would assume over 90% lose libido. You don't really notice it has gone, but your partner will. So make sure you talk about things and keep your relationship working. Hopefully you are only on HT for a few months or a couple of years.

Dave

 
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