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Worry about meeting the consultant on Monday

User
Posted 04 Mar 2022 at 14:04
Is it normal for the GP to ring and advise us to do research and let us know that my husband gets free prescriptions?
User
Posted 04 Mar 2022 at 14:21
What really worries me regarding the phone call from our GP is the timing. We are seeing the surgeon on Monday and we then will get the results of the bone scan as well (they had the results last Monday and refused to tell us over the phone) Could the 2 be linked?
User
Posted 04 Mar 2022 at 18:52
No
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Mar 2022 at 19:20
If you have online access to your medical records (and if not, you can request it) you can see for yourself exactly what information your GP has. I think you'll find it's exactly the same as the information that you have yourself!

Best wishes,

Chris

User
Posted 04 Mar 2022 at 20:35

Our GP called us a little while after diagnosis just to see how we were and how we were getting on. We had already done quite a bit of research then and had some plans in place so he was ok with that. I think it’s probably a usual thing to do when they get the notes through from the hospitals. 

User
Posted 06 Mar 2022 at 10:21
For context, I was diagnosed with PC in 2015 at age 61 following a visit to my GP to discuss flow issues. She initially told me it was normal for a man of my age and I shouldn't worry. Move on a couple of years and I'm sat in front of a consultant who told me I had a slow growing cancer that wouldn't bother me for at least 10 years. Move on to January 2020 and I'm in for a non nerve sparing Radical Robotic Prostatectomy.

At every stage there have been fresh things to worry about, what kept me positive during this time was my absolute intention not to be a passenger. I've researched, asked questions of nurses and consultants and requested procedures where I felt they were necessary and they agreed. There were many things that frightened me, first DRE, first MRI, First Biopsy and of course every PSA monitoring blood test. I soon realised that you leave your dignity at the door, when I'd accepted this the process was a little easier to handle.

I suppose the message here is, your husband will be afraid, he may dread every stage of the process but my experience of the NHS and particularly the Urology Dept is that these people are caring and supportive. I think you need to see yourselves as part of the team, this amazing team of professionals who, collectively will ensure the best possible outcome.

My outcome is that 2 years on and PSA is still undetectable, I'm fit and well, continent but sadly defunct in the erection department. We knew this was a distinct possibility, my consultant gave us an option, accept the probability of a lack of function or face a significantly shortened retirement. Not an option for myself or my wife, immediate decision which we don't regret for a moment.

My wife has been amazing, most of all she's recognised the moments when nothing needed to be said or done, those moments when I just needed to stop and process my thoughts without any outside influence. We're as happy now as ever and determined to enjoy the rest of our lives together.

I hope you both have an equally amazing outcome.

User
Posted 06 Mar 2022 at 11:04
Hi Everybody, I have been reading up on RP and RT and I think you guys are amazingly brave going through with either. I salute you.

On Monday my husband wants to ask about Active Surveilance as that topic was brushed under the table when we met the urologist and the other one he want to ask about is being referred to UCL about Nanoknife treatment (and alternative go to Vitus Klinik in Offenbach) as that seems to have less of a problem with incontinence and impotence. Has anybody got any experience with this treatment?

User
Posted 06 Mar 2022 at 11:39
With a T4+3 diagnosis AS is unlikely to be advisable, given that the dominant type of cancer cells present are quite aggressive.

We've discussed focal treatments such as Nanoknife earlier in this thread.

There's really nothing brave about having RP or RT. You get through it because there's really no option; they're the treatments which have the highest rates of long-term success. I didn't personally find RT to be more than mildly unpleasant and certainly didn't feel brave having it 🙂.

Cheers,

Chris

User
Posted 06 Mar 2022 at 12:02

Apart from recently joined member Paul, who had Nanoknife (IRE) and is a strong advocate for it. https://community.prostatecanceruk.org/posts/t27796-IRE ,to the best of my memory the number of other members who have posted about their experience can be counted on one hand and none are regular posters, so you might not get a great response. However, I am aware that UCLH did a study of this which had ended by 2015 when I enquired about the procedure. I was told it was too soon to say how effective it was then but by now they should have more idea about how the men they treated responded to the treatment. I suggest that when contacting UCL (UCLH) you ask them about how men have responded over the more elapsed time.

Edited by member 06 Mar 2022 at 12:08  | Reason: to highlight link

Barry
User
Posted 06 Mar 2022 at 12:09

I haven't, but we do have people on here who have, I'm sure they will comment soon. I would say AS is the best treatment possible if you're oncologist says it is an option. It has no physical side effects, the mental side effects, may be anxiety and that is what stops some people choosing AS (I would not suffer that side effect due to my personality). AS needs proper reviews regular MRIs (at least for the first few years to establish there is really no progress).

Very often AS fails after a few years, maybe less than five. Some people say "well if it is going to have to be treated I may as well have it done sooner than later". I don't agree with that sentiment. I would want a working penis as long as possible; only start chopping things up when you know it needs doing for certain.

 

 

Dave

User
Posted 06 Mar 2022 at 12:17
At the 'what are we going to do' meeting, I raised the question of active surveillance, as opposed to r/p or hormone + r/t treatment (both with curative intent). My oncologist said we could go down that route if I wanted to, but 'we will just be back here in six months asking the same question, and the cancer will have had 6 months to grow and maybe metastasize'. It's easier, sometimes, to put off making a decision, but sooner or later the decision must be made. My thinking was 'hit it now, before it has time to get worse, because it's not going to go away on its own'. I was T1 m0n0 with a Gleason of 4+3 and a psa of 18.

Hermit

User
Posted 06 Mar 2022 at 15:51

That is how my husband feels about it - we will see tomorrow. 

 

User
Posted 06 Mar 2022 at 16:05
It is interesting that you veer from worrying that he is terminally ill to considering active surveillance. AS wasn't 'brushed under the table' by the medics - it is unsuitable for your OH and therefore wasn't worth spending any NHS time discussing.

AS is suitable for men with a T1 or T2a G6 (3+3) or occasionally, a G7 (3+4) if the cancer is very small and well away from the edges. The fact that your man has a G7 (4+3) would make him unsuitable anyway but knowing that he would only be able to have nerve sparing on one side tells us that he has a significant amount of cancer AND that it is close to the edge. This information will probably rule out focal treatments such as NanoKnife as well.

Hard to accept but intermediate / high risk cancer needs radical treatment - radical treatment means accepting a high risk of side effects. Opting for less invasive treatment avoids the side effects but means he will die sooner or ends up with radical treatment down the line anyway.

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

User
Posted 06 Mar 2022 at 16:25

Hi LynEyre, thank you for all your help. I did not think AS was suitable, that is his idea.

It still has not sunk in what he has to face and he is still hoping that he can get away without any treatment.  I do not know how to cope with this.  Should I ask for an appointment for him with a consultant/doctor so that he finally faces reality?  Maybe the meeting tomorrow will clarify it for him?  His “head buried in the sand” attitude is driving me nuts.  I know that the reality is very harsh and I wish I could spare it for him, but I can’t.  

Any advice how to get him to face reality and get on with whatever treatment will give the best result (most important is free of cancer, after that it would be nice for his comfort and mental wellbeing if he were neither impotent (using aids like vacuum pump is ok with both of us, will just have to use our imagination to make it part of foreplay) nor incontinent).

User
Posted 06 Mar 2022 at 19:19
I think you will probably survive best by recognising that this is his cancer, not yours. Who apart from you is to say that he needs to do this or face up to that? Maybe his way is the best way - my OH has managed very well for 12 years by only hearing what he needs to, making a decision based on what he is told at the appointment and then instantly forgetting any of the bad news.

Let him do this at his pace rather than yours.

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

User
Posted 06 Mar 2022 at 19:27

Sound advice as normal from Lyn reading what she has advised on this forum has helped me personally deal with it even if the advice has been for other people a real credit to this forum 👍

Edited by member 06 Mar 2022 at 19:29  | Reason: Mistake

User
Posted 06 Mar 2022 at 19:43

Originally Posted by: Online Community Member

It still has not sunk in what he has to face and he is still hoping that he can get away without any treatment.  I do not know how to cope with this.  



I'd honestly suggest that you let him deal with it as he sees fit. Everybody comes to terms with a cancer diagnosis in their own way, and the fact that he isn't handling it the way you'd like him to  doesn't mean that he isn't thinking about it. At the end of the day it's his body and his decision to make. 

Best wishes,

Chris

 

User
Posted 07 Mar 2022 at 15:33
Saw the surgeon today. Bone scan all clear. Very impressed. Talked us through everything. Husband now on waiting list (4 - 6 weeks), but waiting to see Oncologist as well to get info. If he prefers RT he can just cancel as per the surgeon. Seems that if he has surgery then for 3 month after he is on Viagra for penile rehab. Have not seen that in any of the posts.

One question to all that are treated by the NHS - has anybody ever seen a consultant on time? Last time it was 20 minutes late, this time 1h. i.e. appointment was for 10.30 we finally saw the consultant at 11.30. Is that a record?

User
Posted 07 Mar 2022 at 15:36
sorry, one other question. The surgeon mentioned that my husbands prostate is quite small. Is that good or bad?
User
Posted 07 Mar 2022 at 16:50

Originally Posted by: Online Community Member
Seems that if he has surgery then for 3 month after he is on Viagra for penile rehab. Have not seen that in any of the posts.

The other name for viagra is sildenafil which you have probably seen. Most men have either this or tadalafil.

Glad the bone scan was all clear 👍🏽

 
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