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Worry about meeting the consultant on Monday

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User

Posted 22 Mar 2022 at 07:14

Hi Dave64diag2018, OH is currently looking at Brachytherapy and a referral to the Christie as our hospital does not offer it. Thank you for your recommendation. Will pass it on. Like to hear positive experiences.

User

Posted 22 Mar 2022 at 07:18

Hi LynnEyre, yes I am angry. Angry that that damn cancer has invaded my OH and is causing him problems and despair at what he has to go through (even if bearable) to get rid of it. He is a good man, a great husband and father and done his bit for the country. He does not deserve this and to know that because of this our son has a higher chance of beeing attacked by this damn disease makes it worse.

User

Posted 22 Mar 2022 at 07:22

I have on question I hope you can help. OH is currently on the waiting list at our hospital for RP, the surgeon we saw has only been at the hospital since February, I cannot find him on BAUS (I know he may not be registered) and I have googled him and can only find him as a doctor at Rotherham General (he is not called Smith or Jones). Rotherham General does not do RP, that is done in Sheffield. When asked he told me he had done 120 to 130 RPs, where can I check his stats, please?

Thank you

User

Posted 22 Mar 2022 at 11:00

Hi Desperate Wife...there is no point being angry. My hubby is also a good man,husband,father and has always worked to give us the very best. At no point have we questioned"why him?" bearing in mind that one in two people are likely to get cancer in their lifetime. We have had tears and I have had tears alone ...usually at 3am. We have made sure we have told his brother to get tested and our son and other male family members when they reach an age.Our main frustrations have been down to the fact that we got very little information at the time of diagnosis,particularly about making treatment decisions. Contact with anyone on the telephone has been a nightmare with answering machines or no one answering and waiting around for days to get a call back.We read everything we could and I follow lots of people on the online community. My cup tends to be half empty while my husband's is half full. We eventually opted to pay for a private consultation (I couldn't go due to COVID restrictions)where hubby got more details of his situation and an almost agreement to his decision to go for RP. Diagnosed before Christmas at Gleason 9,grade 5,T2 and therefore high risk and as the consultant said,"as aggressive as it gets",we have chosen to dip into savings and he will have his op 12April. I appreciate we may be more fortunate than others in that we can pay privately but as many people here say,this is a journey and you have to take it step by step. We know it won't be all plain sailing and we know all the negatives,but we also read about the positives and I am trying to get some of my husband's attitude of make a decision,get the cancer out and move on with no looking back. Please try not to be angry. It is sad but take it one step at a time. I too was panicky and afraid but am slowly getting my head round it

Edited by member 22 Mar 2022 at 11:02 | Reason: Spelling mistakes

User

Posted 22 Mar 2022 at 18:35

Hi Paulit, thank you for your kind words. Not getting proper information at time of diagnosis and when seeing the surgeon is one of my main problems as well.

I managed to speak to one of the nurses and she actually told me that if he goes for RP there is a meeting 2 weeks before and all will be explained then. How can you make treatment decisions without proper information from the hospital?

We are meeting the oncologist 8th April (unless it gets postponed again) maybe (if we are lucky) we might get some more information.

Currently there is actually nobody at the hospital looking after OH as the urologist told us he would not be seeing us again.

The only places I actually got information is this forum.

I keep suggesting that we get a mortgage on the house and he goes to Germany for treatment with Nanoknife and instead of retiring in 2 years I carry on working for some more years. OH will not hear of that.

User

Posted 22 Mar 2022 at 19:41

This is a long ongoing thread and various treatment options have been mentioned with Nanoknife now being raised as a possible treatment in Germany. If this form of treatment is an option, it could be done in the UK and possibly within the NHS where follow up would be easier and most probably aa saving in cost and reduced travelling.

Unfortunately, you have neither shown the diagnosis of your OH nor other sallient details under Profile/Bio so members can reasily check position.

Barry

User

Posted 22 Mar 2022 at 19:55

Hi Old Barry, sorry, I do not know how to do that - but just to let you know OH is PSA 8, T2a, Gleeson 4+3, M0 N0. He has been told that at our hospital he can choose between RP and RT as that is all they offer. Well he is not happy with either choice and has been told by the urologist that due to the position of the enemy HIFU is not an option. So it is either Brachytherapy or Nanoknife that is left for him to choose from Brachytherapy is offered at the Christie in Manchester and UCL, Nano knife at UCL. Unless there is another treatment option which I have overlooked.

User

Posted 22 Mar 2022 at 20:08

Hello again Desperate Wife...your husband's situation is almost the same as my husband....Gleason 9(5+4) T2a NO MO.....please please try and make a decision ..both RP and RT have plus and minus but,honestly,now that my husband has made a decision,we both feel some sort of calm and just look forward to 3 weeks from now,him having his op and then moving on to recovery and getting on with life, holidays and all of the plans that have been put on hold because of the diagnosis. Good luck to you both

User

Posted 23 Mar 2022 at 01:53

Originally Posted by: Online Community Member

You are correct Barry - we don't have all the information. OP was told the op would not be bilateral nerve sparing which suggests not T2a - or if it is, that the a is very, very close to the edge. Hence HIFU being ruled out, I suspect, which probably rules out Nanoknife as well. I have previously made the point about nanoknife being available in England but I think that until OP has the detailed diagnosis and explanation of why nerve bundles need to be removed, there is going to be little progress.

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

User

Posted 23 Mar 2022 at 07:15

Good Morning Paulit, thank you very much for your kind words.

I wish you and your husband all the very best for his operation. May it go perfectly.

OH is waiting for the appointment with the Oncologist on 8th April, he will then make his decision which way to go.

User

Posted 23 Mar 2022 at 13:36

Hi DW,

It's quite easy to enter information in your Profile/Bio. You just click on Account and then Profile and Edit. Summarised salient details can then be readily seen by other members if they click on your name symbol/avatar without searching through many posts. You can also click on the avatar of other members to view their basic details, if they have entered them. Try mine as a test as it will show if you click on it. This also provides a useful record for oneself.

We are of course dependent on involved professionals regarding the interpretation of scans and biopsies and occasionally even they disagree and want to adopt a different treatment path. However, they sometimes fail to inform patients of certain options, particularly where they cannot offer them. So we can say to them "is there any other alternative, would xyz be a possible option?" But we have come to learn that with a certain diagnosis some treatments will almost certainly be ruled out. When I had salvage treatment for failed RT, the possibilities in the trial were HIFU or Cryotherapy. The tumour in my Prostate was in a position where the HIFU could be focused but if it could not have been reached, I would have been offered Cryotherapy.

Edited by member 23 Mar 2022 at 13:43 | Reason: Not specified

Barry

User

Posted 26 Mar 2022 at 15:36

True, it would be nice for you to be there but you don’t have to be. I recently had a c section and had to just get on with it whilst looking after baby, not sleeping and doing the blood thinking injections!

User

Posted 29 Mar 2022 at 09:14

Hi Everybody, we are seeing the oncologist next week Friday, so then it is time for OH to make up his mind and that includes referral to another hospital. I have read a lot of good things about the Christie in Manchester (and it is not too far to travel). Are there any other hospitals you would recommend (London is easy to get to as well)? Thank you

User

Posted 29 Mar 2022 at 09:46

Until you know what his treatment options are, and he has chosen which path he wants to take, what is the point in asking about other hospitals? Once diagnosed, referral to another hospital will not change the diagnosis. You seem to be getting ahead of yourself, and if I may so so, clutching at straws. If his options are limited to prostatectomy or h/t and EBRT, they can be be done in your local / regional hospital - you mentioned Rotherham, so I guess that would be (Sheffield) the Hallamshire, or Weston Park for radiotherapy. With 20 or 37 sessions of radiotherapy spread out over 4 - 8 weeks, I would want to stay local! If brachytherapy, then it would be Leeds, and for nanoknife, I don't know. But just wait until you have the final word from the oncologist - and even then, he will not have to make his mind up on the spot. He can take a few days, even weeks, to think about the alternatives.

Hermit

Edited by member 29 Mar 2022 at 10:01 | Reason: Not specified

User

Posted 29 Mar 2022 at 10:02

I am somewhat puzzled why Nanoknife is being considered as a treatment. If HIFU has been ruled out, surely that also rules out Nanoknife, does it not?

Best wishes,

Chris

User

Posted 29 Mar 2022 at 18:44

No, it will not change the diagnosis - but OH has ruled out HT/RT, he does not like the side/after effects and is not keen on RP (again the after effects). Nanoknife is not ruled out as unlike HIFU it can be used in difficult to reach places and if it failes it can be repeated.

User

Posted 29 Mar 2022 at 18:54

Nobody likes the side-effects of cancer treatment, but you put up with it to get the cancer sorted, and speaking from personal experience, the side-effects of HT/RT aren't that awful. I'd honestly suggest you look at long-term outcomes, and not the minor inconvenience of the side-effects of treatment and recovery.

Best wishes,

Chris

User

Posted 29 Mar 2022 at 18:57

Hi Chris, you are correct that getting that cancer sorted is the main priority, but has OH has been told he has choices, he needs to choose what in his opinion gives him the best QoL.

User

Posted 08 Apr 2022 at 18:26

We saw the oncologist Dr X today (were told by others he really looks after his patients and he lived up to his reputation). Had a very long conversation regarding all the options.

option 1 is 3 month of Bicalutamide with tablets to prevent male breasts, then 30 sessions of RT and then another 3 month of Bicalutamide.

option 2 - referral to Lincoln for Brachytherapy, again 3 month on Bicalutamide, couple sessions of HDR Brachy, 15 sessions of EBRT and then another 3 month of Bicalutamide.

option 3 - (the one OH prefers) referral to UCLH for treatment with Nanoknife.

Question - has anybody been on Bicalutamide for 2 * 3 month sessions, what was your experience?

The only other option is RP - we are now trying to work out which treatment has the least effect on OH's quality of life during and after the treatment.

Before anybody says anything - yes, I know he can cope. But I have to watch him go through hell - that is how all these treatments look to me and after all that there is no guarantee that that bloody cancer will not come back.

User

Posted 08 Apr 2022 at 19:02

We are all different but I underwent surgery and all that involved was going in one day and coming out the next . I did have a catheter in for 7 days but that was just a temporary inconvenience. Three people I personally know had surgery over 12 years ago and have had no problems since. That said, one, who is now 80, now has a slight leakage but that is probably more to do with his age rather than the fact he underwent surgery. And reading the experience of men who have recently undergone surgery on this forum most, like me, have have had no major problems following the removal of their prostate. Your husbands cancer grading certainly makes surgery an effective option.

Ivan

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