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Diagnosed at 46

User
Posted 17 Apr 2020 at 16:49

Hi everyone, 

Since they gave me the results of the biopsy a little more than a month ago, I have been trying to regain somewhat of a clear perspective on things, not easy to do when you are  suddenly having to deal with cancer right while a pandemic of unprecedented proportions engulfs the health services of every country on Earth.

Finding this website the last few days has given me something extremely valuable to help me with understanding my new condition, and seeing that many people share the same thoughts i do has given me  quite a bit more of support based on first hand information from people on these forums. I am literally reading almost every post.

So, the diagnosis is Gleason score 3-4. Max volume 2mm. So yes, the bottom end of the spectrum. Was advised (via phone) for RARP.  Sought a second opinion, and  it was confirmed. I have now accepted that surgery is probably the best option for me given my age. Am obviously concerned on the verge of terrified about the post operation repercussions of ED and urinary incontinence. 

But then, because of Covid, and like many here are experiencing, commitment to any time frame for surgery is impossible from the nhs. This has made me anxious, and I go from some days thinking that yes pc is very slow growing, 3 months, even 6 months probably won't make much difference, to some thinking that well, but how long are we talking here exactly? How long is the limit? How is it possible to not even commit to tell a cancer patient that yes, we will do it within 6 months. The void of even having a ballpark time frame is quite difficult to digest. And I can't even begin to imagine what effect it must have on patients with more aggressive cancers than mine. 

Then, the Oncologist proposed to put me on HT to "put the cancer to sleep while we wait for surgery". Low dosage, so no side effects most likely, he said. Have not started but will probably start monday even though i have read it is out of any guidelines to use HT as a gap therapy for Surgery.  Unprecendented times, unprecedented guidelines i guess.

I have read about on the forums about HT low dosage side effects or not, and it seems to vary widely person to person. I will be taking 50mg bicalutamide tablets. Has anyone else been prescribed these? Any insight into what your experience is/was?

I'll just finish by saying if anyone feels like they have a similiar experience to the above feel free to share it, any help is great and if i can be of help would gladly be even if relatively new to this condition, so still doing lots of homework on it.

 

Thank you.

 

User
Posted 27 Apr 2020 at 13:18

Help83

I'm 57 and had nerve sparing open RP March 23rd this year ( Gleason 3+4, Stage 2A)

Was very concerned about the operation for all of the obvious reasons but having been AS for a couple of years things were clearly advancing and I felt I had to take some positive action. 

Incontinence a minor issue (and improving all the time) - small pad late PM and for security at night.

ED slightly more of an issue but again manageable and improving. Still need 50 mg of Viagra to be able to maintain a full erection for sex.

Every case is different but there is plenty of reason for optimism

User
Posted 17 Apr 2020 at 22:09

Unfortunately it appears that surgery is not an option for me due to spread outside of prostate.

Treatment that has been suggested is chemo or radiotherapy possibly both, however on hold due to COVID so waiting as you say. 

All the best

User
Posted 18 Apr 2020 at 23:26

I was diagnosed at 46.  3.5 years later, the treatments appear to have worked.  Don’t lose hope.

 

Ulsterman 

Edited by member 19 Apr 2020 at 16:55  | Reason: Not specified

User
Posted 17 Apr 2020 at 20:10

Hi

I was diagnosed just over 3 weeks ago, Stage T3b Gleason 9 . So both new to this and looking for help!

I have been taking 50mg Bicalutamide for 9 days and had first Prostap two days ago- no side effects as yet so fingers crossed

Mark

 

User
Posted 17 Apr 2020 at 20:40

Hi, 

Sorry you’ve had this news at such a torrid time.  My OH (44) is awaiting a RP, diagnosed in February. Had bloods done yesterday to check on PSA level as surveillance due to delays to surgery.

There are some fabulous people on here with much more experience than us. Hopefully, they’ll pick up on your post soon, and be able to offer greater support. 

Mel

User
Posted 17 Apr 2020 at 20:43
John had 50mg bical for 6 months a few years ago - hated every minute of it, hated the moobs, has been left with permanent hot flushes, stopped taking them earlier than planned because he was so miserable.

BUT that was with the knowledge that he was reducing the chance of ever achieving full remission so a conscious decision about quality of life v almost intangible possible impact on longevity.

In your case, it should be an easier decision. You are young, COVID may wreck your best chance of achieving full remission so putting up with possible side effects for a few weeks or months seems a no brainer?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Apr 2020 at 12:07

Thank you, yes i forgot to put the stage. It is T2c. Will put that in the profile. that is what people do right? Put all the medical info in the profile.

Yes i have the pamphlet toolkit, it was given to me on the day i received the diagnosis.

Many thanks

User
Posted 19 Apr 2020 at 07:24
I had surgery at 48 but was G9 and already had lymph spread. You may want to read my profile

If life gives you lemons , then make lemonade

User
Posted 26 Apr 2020 at 19:19
I strongly agree with what Andrew and others have said and in present circumstances which have caused varying delay in some areas for cancer treatment. Unfortunately, the diagnostic tools available to clinicians mean the full extent of the cancer cannot definitely be established until it is removed and the surgeon can see and the removed Prostate examined in the lab. Quite often it is found that the cancer is more extensive or higher grade than previously thought, so it makes sense to have HT as a way of constraining it where surgery may be delayed.
Barry
User
Posted 27 Apr 2020 at 07:01
I had a one sided tumour and lost some bundles on one side only. Re post op normal sex life, it will be different, you will loose some length and stiffness and of course no more ejaculation unless it's wee.

Ok that's the bad news just how bad it is depends on your surgeon and the extent of your disease. You will never ejaculate again but orgasm sensation is remarkably unchanged for me, if anything I think I am a better lover now if only because I have to take more time to get a suitable erection (no more wam bam thankyou mam!).

Make sure you do all the rehab, get a pump and use it, if pills help use them too, I don't use medicinal erections anymore but I do use a durex cockring which improves "confidence!".

HT prior to surgery is not unheard of but I get why you don't want it. Hope they sort you soon.

User
Posted 27 Apr 2020 at 10:57

I am in the same position as you. Diagnosed Jan 14th. Gleason 7 (4+3). Stage is debatable but possibly 3a. Had hoped for surgery in April.

I have had 12 days of bicalutamide at 150 mg/day. It's early days but so far no side affects. I know that might change over the next couple of months.

Take care,

J

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User
Posted 17 Apr 2020 at 20:10

Hi

I was diagnosed just over 3 weeks ago, Stage T3b Gleason 9 . So both new to this and looking for help!

I have been taking 50mg Bicalutamide for 9 days and had first Prostap two days ago- no side effects as yet so fingers crossed

Mark

 

User
Posted 17 Apr 2020 at 20:40

Hi, 

Sorry you’ve had this news at such a torrid time.  My OH (44) is awaiting a RP, diagnosed in February. Had bloods done yesterday to check on PSA level as surveillance due to delays to surgery.

There are some fabulous people on here with much more experience than us. Hopefully, they’ll pick up on your post soon, and be able to offer greater support. 

Mel

User
Posted 17 Apr 2020 at 20:43
John had 50mg bical for 6 months a few years ago - hated every minute of it, hated the moobs, has been left with permanent hot flushes, stopped taking them earlier than planned because he was so miserable.

BUT that was with the knowledge that he was reducing the chance of ever achieving full remission so a conscious decision about quality of life v almost intangible possible impact on longevity.

In your case, it should be an easier decision. You are young, COVID may wreck your best chance of achieving full remission so putting up with possible side effects for a few weeks or months seems a no brainer?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Apr 2020 at 21:07

 

Thank you for sharing.  Is this while you wait for surgery as well? I will post how things go, good luck.

 

 

Originally Posted by: Online Community Member

Hi

I was diagnosed just over 3 weeks ago, Stage T3b Gleason 9 . So both new to this and looking for help!

I have been taking 50mg Bicalutamide for 9 days and had first Prostap two days ago- no side effects as yet so fingers crossed

Mark

 

User
Posted 17 Apr 2020 at 22:09

Unfortunately it appears that surgery is not an option for me due to spread outside of prostate.

Treatment that has been suggested is chemo or radiotherapy possibly both, however on hold due to COVID so waiting as you say. 

All the best

User
Posted 18 Apr 2020 at 12:07

Thank you, yes i forgot to put the stage. It is T2c. Will put that in the profile. that is what people do right? Put all the medical info in the profile.

Yes i have the pamphlet toolkit, it was given to me on the day i received the diagnosis.

Many thanks

User
Posted 18 Apr 2020 at 23:26

I was diagnosed at 46.  3.5 years later, the treatments appear to have worked.  Don’t lose hope.

 

Ulsterman 

Edited by member 19 Apr 2020 at 16:55  | Reason: Not specified

User
Posted 19 Apr 2020 at 07:24
I had surgery at 48 but was G9 and already had lymph spread. You may want to read my profile

If life gives you lemons , then make lemonade

User
Posted 26 Apr 2020 at 17:40

Hi all.. new to this site having just been diagnosed with prostate cancer and a Gleason score of 7 (4+3). 53 years of age and generally pretty fit and healthy.  Been recommended surgery but due to coronavirus it has been suggested I go in hormone therapy in the interim. 

Not keen on the HT at this stage and as my cancer is all localised in the prostate my preference is to wait for surgery and avoid any other other side effects. Any thoughts or advise from others on this?

 My biggest area of uncertainty is what does post surgery look like in terms of incontinence and erectile disfunction. Surgeon had advised that most of my cancer is focused on the right side so more likely I will lose most of the nerve endings on that side than the left. Keen for a view of what a post op normal sex life might look like and what options people have used..

Many thanks  for any views people feel free to share

User
Posted 26 Apr 2020 at 19:19
I strongly agree with what Andrew and others have said and in present circumstances which have caused varying delay in some areas for cancer treatment. Unfortunately, the diagnostic tools available to clinicians mean the full extent of the cancer cannot definitely be established until it is removed and the surgeon can see and the removed Prostate examined in the lab. Quite often it is found that the cancer is more extensive or higher grade than previously thought, so it makes sense to have HT as a way of constraining it where surgery may be delayed.
Barry
User
Posted 26 Apr 2020 at 22:22
Thanks both for your comments, very helpful...
User
Posted 27 Apr 2020 at 07:01
I had a one sided tumour and lost some bundles on one side only. Re post op normal sex life, it will be different, you will loose some length and stiffness and of course no more ejaculation unless it's wee.

Ok that's the bad news just how bad it is depends on your surgeon and the extent of your disease. You will never ejaculate again but orgasm sensation is remarkably unchanged for me, if anything I think I am a better lover now if only because I have to take more time to get a suitable erection (no more wam bam thankyou mam!).

Make sure you do all the rehab, get a pump and use it, if pills help use them too, I don't use medicinal erections anymore but I do use a durex cockring which improves "confidence!".

HT prior to surgery is not unheard of but I get why you don't want it. Hope they sort you soon.

User
Posted 27 Apr 2020 at 07:51

Thanks for that, really helpful and good to hear you have a positive story to tell. 

User
Posted 27 Apr 2020 at 10:57

I am in the same position as you. Diagnosed Jan 14th. Gleason 7 (4+3). Stage is debatable but possibly 3a. Had hoped for surgery in April.

I have had 12 days of bicalutamide at 150 mg/day. It's early days but so far no side affects. I know that might change over the next couple of months.

Take care,

J

User
Posted 27 Apr 2020 at 11:23

Thank you Burghboy... can I ask why you chose surgery over perhaps radiotherapy or even Branchytherapy.

Whilst surgery seems logical I do wonder if I wouldn’t prefer to progress at this stage with less radical treatments and then see what happens. My dad had Branchytherapy a few months ago and had positive results. I know he is 80 and I am 53 but as my cancer is localised i feel it has created a dilemma in the best course of treatment to take.

It Just feels a little overwhelming at the moment 

Thanks

G

User
Posted 27 Apr 2020 at 11:58

Be aware that the various forms of radiation are radical. RT does not always kill all cancer cells and it is possible for a tumour to regrow in the Prostate as happened to me. Also, though it is not impossible to remove an irradiated Prostate after RT, it makes it exceedingly difficult to do and few surgeons will attempt it. Also, where it has been done, it has been found that side effects are more severe including being incontinent. For suitable men prepared to have a treatment with far less adverse side effects but more likely to be an interim procedure, HIFU may be a possibility but (is more usually used as a salvage treatment for failed RT). It works best as a primary treatment where there is a small single tumour on one side of the Prostate and the cancer is well contained and in a position that can be reached. It's therefore rather a niche treatment but one that can be repeated in need or be followed by RT or surgery. Cryotherapy is another possibility where the cancer cells are damaged by a controlled ball of ice. This is a treatment not used much in the UK but more extensively in the USA.

Edited by member 28 Apr 2020 at 01:10  | Reason: Not specified

Barry
User
Posted 27 Apr 2020 at 12:49

I have found the decision very difficult. My brother was diagnosed at 59 with advanced PCa. I am 57. 

My logic is there might be worse to come and having surgery, will give RT as a backup. 

J

User
Posted 27 Apr 2020 at 13:18

Help83

I'm 57 and had nerve sparing open RP March 23rd this year ( Gleason 3+4, Stage 2A)

Was very concerned about the operation for all of the obvious reasons but having been AS for a couple of years things were clearly advancing and I felt I had to take some positive action. 

Incontinence a minor issue (and improving all the time) - small pad late PM and for security at night.

ED slightly more of an issue but again manageable and improving. Still need 50 mg of Viagra to be able to maintain a full erection for sex.

Every case is different but there is plenty of reason for optimism

User
Posted 27 Apr 2020 at 18:14
Thanks everyone
User
Posted 27 Apr 2020 at 18:59
Mike, if you are getting any kind of erection at 5 weeks post-op you are doing amazingly well! Congrats!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 27 Apr 2020 at 19:36

Heenan73 Many thanks for the insight on HIFU and the view on taking the treatment that will give the best chance of a cure.. as I am really new to this cancer-thing and this site I am finding everyones comments very helpful... good to see some positive news coming out of the Covid issue today with NHS services starting to come back online for cancer treatments and mental health..  I hope this will help many of those on this site waiting for their treatment, regardless of what that is... G

Edited by member 27 Apr 2020 at 19:37  | Reason: missed name out

User
Posted 27 Apr 2020 at 19:39

Mike W - really appreciate your post, that was helpful to know....

User
Posted 27 Apr 2020 at 21:24

Hi I have just finished a 28 day course of bicalutamide 50mg and in the middle of it had to go to doctors surgery to have hormone injection ,this was to contain the cancer in the prostate until I could have surgery . I was then contacted on Friday last week to say I would be having my op next Tuesday ( tomorrow) , feeling very nervous and anxious about the outcome I'm hoping they can save some of the nerve endings i will you posted .

User
Posted 27 Apr 2020 at 21:36

Baker boy... best of luck for next week, will keep my fingers crossed things work out well for you.. 

be good to hear how you progress

Help83

 

User
Posted 28 Apr 2020 at 00:04

Hope all goes well with your op tomorrow Tim.

All the best for a good outcome.

Ange

User
Posted 28 Apr 2020 at 00:20

Best of luck. :)

Mel

User
Posted 28 Apr 2020 at 14:36

Originally Posted by: Online Community Member

Mike W - really appreciate your post, that was helpful to know....

 

No problem. If you want any more info message me or ask on here. I had a mate that went through exactly the same procedure a few month before I did and it was really helpful knowing what to expect and to an extent put my mind at rest

 
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