Hello, new and op looming …

I just wrote a really long reply and somehow it has disappeared and I can't get it back. I'll try again in the morning.

I am 62 years old and over the last couple of months I was diagnosed with Gleason 7 - 3+4. I had a partial bladder obstruction that pretty much ruled out getting radiation. They did a genomic test called Decipher which came back high, so active surveillance was out. I had my RALP and PLND on Aug 12. The first week after surgery was a little rough for me, but really felt better after getting my catheter out at day 7. I am happy that I will get the pathology report that details exactly what the cancer is, and if the cancer was all removed. I am hopeful, and believe we caught it early. I had a very experienced surgeon (over 8,000 of these procedures) who did nerve sparing on both sides. I already have erections. I do have some urinary incontinence, but that is mainly dribbling here and there. There are several different treatments, and if you are at a center of excellence you will get the best treatment recommended for your case, as each case is a bit different. Best wishes on whatever treatment your husband opt for!

Hello PattyP 

A warm welcome to the group - yes we do have plenty of "lurkers" and indeed we had over 10 million page views last year which shows people view the posts take the information they need and move on.

With those statistics I would think your husband would be fine with any treatment available and would strongly suggest to him to consider all options open - and how the treatment affects both of you. I would make a list of the "pros and cons" of each treatment as they would affect you both. Use  trusted sources - Prostate Cancer UK, Cancer Research UK and Macmillan (not Dr Google) - I will start you off with a link:

Prostate Cancer Treatments

I would say that he needs to speak to an oncologist before he makes a choice of treatment.  I would also add that if Brachytherapy isn't available in your NHS Trust he can still opt for this treatment.

Once you have run through the options - feel free to ask any questions - we have Community members who have been through every treatment. no question is too trivial.

Best wishes - Brian.

Hi Patty P

I had surgery 3 years ago this week and have made a full recovery. Was a similar age to your husband.

In many parts of the UK the NHS won't finalise your treatment plan until you have seen both a surgeon and an oncologist. If you haven't yet had the offer of an appointment with both, suggest you push for it. It is important to have the full picture before deciding.

I am not a medical professional, but my understanding is that with your husband's stats, he has a very high chance of a complete cure and both surgery and HT/RT have a similar success rate. There are potentially other treatments available to him although not necessarily offered in all areas. Others on here will be able to advise further on these.

Suggest you read as much as you can from legitimate sources and prepare a list of questions. Different treatment have different side effects and risks, both long and short term and you need to weight them up and decide what's best for you as couple.

Questions for the surgeon might include how close the turmor is to the prostate wall and the extent to which nerve sparing can be achieved. 

Questions for the oncologist, what are the side effects and the long term risks from HT/RT and how long could they last.

My experience (and many others) is that this is the worst part. Waiting for tests and making a decision is very stressful. Once you have a plan in place it gets a lot easier.

Best wishes to you both over the coming months. Please feel free to ask my anything.

Cliff

Hello Lemsip - oh I hate it when that happens! Thank you for writing so late at night too. I decided to read your profile and it gave me a much-needed laugh. The very word stirrups put the fear of God into my husband....not a procedure anyone would wish to repeat....

Hello Pomfather and thank you for your really informative and helpful reply. It sounds like you're making a really good recovery.

I am getting my head around the language - I knew what RALP was but have just looked up PLND. (And of course now realise that TWOC can mean more than Taking Without Consent...).

No one has mentioned PLND to us and it makes perfect sense to me to have that done. I had a sentinel node biopsy with breast cancer,so I get why you'd do it. I'll email the specialist nurse and ask the question.

We've talked with the surgeon about nerve sparing - they've explained they will do it if they can but i guess it's all about margins. No promises have been made.

Mr P seems to be more worried about coming home with the catheter than anything. I assume it's inserted while you're under the GA so at least you're spared the pain of knowing when it's going in? Having it taken out after seven days sounds like good going from what I have read?

Thanks again

Hello Brian and thank you for replying. I am glad to have stopped lurking and have taken the plunge as I am one of those people who finds real support in talking to others. I know it's not for everyone ...Mr P won't do it....but I wish he would as I am sure he would find some of the reassurance from personal experiences that I am unable to give.

We've talked again and he is absolutely set on the surgery but I intend to have a more detailed conversation with the specialist nurse so that I can have a better informed dicussion with him. The problem is on Diagnosis Day your head is in such a whirl that you don't know which way to turn. As the dust starts to settle, I am finding I want to know more. Whereas Mr P's head remains firmly in the sand.

Thanks again

Hello Cliff and thank you for your very thoughtful and helpful reply. It's really encouraging to know you have made a full recovery and are three years down the line.

Mr P is fully set on surgery but I am going to get more info before talking to him again about it. I think he's just so shell shocked from the diagnosis (his head was finrly in the sand whereas I could see it coming a mile off) that he's not questioning anything that the urologist is telling him. Nerve sparing was disussed and they basically said they wouldnt be able to tell until they got in there, as it were.

It's early days (diagnosis was only given on Tuesday) so I am hoping his logical brain will calm down, realise he's in a good position and start to at least consider what else is available. Ultimately it;s his decision but I just want him to have all the facts.

Thanks again 

Hi Patti P, Yes, the catheter coming out a 7 days is lower than what I hear from others. Tell Mr P it is more of a nuisance than anything else. It is inserted during the surgery, so you wake up with it. A nurse will teach you how to care for it. Getting the catheter out is a breeze, no pain at all. I would recommend looking at all treatments available before deciding on surgery. I had a partial bladder obstruction, so that made my decision for me. I found the surgery very rough and had a lot of pain, especially the first 2-3 days. My doctor in the US did this outpatient, so I did not have the benefit of pain control in a hospital setting. I would have absolutely considered radiation though, as persistent ED and incontinence are realities many face after getting a RALP. No treatment is perfect, and Brian and Cliff's advice is spot on. Waiting is very hard too. The good news is the Mr P has a favorable diagnosis of 3+4. Most prostate cancers are very slow growing. Not sure if they do Decipher tests over there, that may be helpful to know how aggressive the tumor is. My thoughts and prayers are with you both as you progress through treatment.

Hello Pomfather 

Cracking reply thank you.

No the NHS in the UK don't use the Decipher Test, they rely on the Gleason Score and a laboratory test on the cells to check for cribriform pattern and any other potential issues.

Best wishes - Brian.