Worry about meeting the consultant on Monday

You are at the very start of your journey but just to reassure you, when men see their urologist, oncologist or clinical nurse specialist (if they have one), most go through the PCa quality of life questionnaire (FACT-P) on a regular basis. That is how BAUS is able to publish the data on likelihood of side effects from the different treatments. 

https://bmjopen.bmj.com/content/6/12/e013555

https://www.england.nhs.uk/wp-content/uploads/2021/11/Cancer-quality-of-life-survey-summary-report-first-data-release.pdf 

Edited by member 21 Mar 2022 at 13:10  | Reason: to activate hyperlinks

Not 'nurses'. I have one who contacts me routinely to (e.g.) tell me my latest PSA score. She is the one who called Christmas Eve. Not 'consultants'. I am under the care of one (named) consultant urologist, although I have been seen by others on his team. If I have a question or a problem, I call the nurse practitioner or the consultant's secretary. Both are busy people - so I just leave a message and they get back to me.  I expect that is how it will be for your husband, once he has chosen which treatment route he wants to follow. Don't start to worry about 'what if ...'. Just deal with things as they arise. And prostate cancer isn't the sort of thing which would ever lead to a 111 or 999 phone call.

Edited by member 21 Mar 2022 at 19:02  | Reason: Not specified

Yes, I would of course use the words bearable and tolerable, but that's because we have cancer and any treatment needs to be aggressive, it has to kill the cancer but not kill the patient. But the staff do a good job they ask questions, etc. and if you read my posts you will often see me praising the food at the Christie, in fact the Key Lime Cheesecake is positively to die for.

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 10:02  | Reason: Spelling mistakes

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

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

Hi DW, yes it’s tough as the spouse/wife/partner. I’m not going to lie. Really tough. There are no guarantees it won’t come back, but my motto as a cancer survivor has always been to take everything on offer (once you have researched and made an informed decision). There will never then be the “if only I had” scenario. The specialists looking after your husband are just that, specialists in their field. Weigh up all the options and go with it. You can go crazy with stats, concentrate on the outcome. You have to put your faith in their expertise. I can only tell you what we have gone through. Of course, if your husband opts for treatment rather than surgery none of what I’m about to say will apply! My oh opted for surgery, he only had 2 options to chose from; the other being ht and rt. The week leading up to surgery was difficult emotionally. My oh was definitely not looking forward to radical surgery (who would be) and was concerned about incontinence. However, as a couple we knew that if he was fully incontinent that was something we would deal with as opposed to not removing the prostate. The first 7-10 days post surgery were tough whilst the catheter was in (lots of people on here told me it would be). Lack of sleep, OH not getting comfy and not being able to bend etc. However, he still did gentle walks daily, pottered around and slept when he needed to. When the catheter was removed it was a different story. Psychologically it was major for him. He did get a Uti from catheter, treated with antibox. He has been dry day and night from when the catheter was removed. we are surprised, stunned and extremely pleased. He was very disciplined with his exercises before surgery and has continued since catheter removal. The exercises are so important. Of course it’s very early days for us, we are not counting our chickens just yet! We don’t know how successful the surgery has been and if more treatment will be required. We are only 17 days post surgery. He is doing extremely well and has exceeded both our expectations. Sounds like you have had a positive discussion with an understanding oncologist, can you do the same with a surgeon to discuss RP? Focus on the positives, you have a selection of treatment options available which in itself is a huge positive. The cancer is treatable. You will both get through this. X

Edited by member 08 Apr 2022 at 22:06  | Reason: Not specified

Hi JaneyP, thank you for giving good news regarding your husband's excellent lack of incontinence.  I passed this on to my husband, he read the HT leaflet last night and he was horrified at the side effects so currently RP is his preferred choice, but hoping that the referral to UCHL for treatment with Nanoknife is successful as that seem to have less after effects.  

Wishing you and your husband that everything goes perfectly from now on.

Do bear in mind that although there's a huge long list of potential side-effects from HT, no one person will experience all of them. I had very few myself - fatigue was my main one.  Judging from my own experience and reading many other reports of HT on this forum, it's a treatment that the majority of men tolerate well.

Best wishes,

Chris