Post Surgery Question

Hi Always hope

Thank you for this. 
Staging before was 2b and no sign of Extraprostatic or nodes involved.

I can’t quite get my head around him saying he thought it all looked contained but took the nerve bundle? 

I’m just a bit concerned as he’s Gleeson 9 and I was so hoping he remained at 2b! 

This waiting is just the pits! 

Thanks again for this

A 

My husband had perineural invasion and the cancer had tracked around the nerve endings inside the prostate and spread outside via the bundle. This is a way that can facilitate spread so if the cancer was seen to be near these nerve endings the surgeon may have thought it safer to remove the nerve ends and the bundle as well to ensure that he achieved a safe margin.

The Gleason 9 would probably have influenced the decision to ensure good margins. A Gleason 9 means that the cells look very abnormal and have the POTENTIAL to proliferate rapidly if not treated. Surgery has hopefully removed all of these cells. Only time will tell if any cells had escaped prior to the surgery.

 Annieone , I would try and chat to the PCN and ask for her interpretation of the surgery notes.  You are unsure what was actually said, so best to go back to facts if possible.  Hopefully your OH is already cancer free, but if not it certainly sounds curable.  Keep us posted and best wishes, David

Hi Always hope

Yes the waiting for surgery was awful thinking if potential spread. I found most people didn’t see any urgency in getting his surgery but I suppose most are not high grade .

It was 9 weeks post diagnosis and 3 months from referral

A

Thank you David I think I will 

After my mis-placed humour earlier I woke in the night thinking about this.

I can't tell you much about surgery andMillibob  and Alwayshope  are always going to be better than me.

It seems to me that a surgeon's instinct is always likely to be to remove more, to have the best margin, rather than less.

I tried to find out how quickly the histology results take, and could not.

However, the results maybe only part of the answers you need.

What happens next is important. Is the surgery enough? Is more treatment indicated?

These things are decided after the histology is clear.

If I were a surgeon and your consultant, assuming I had the years of knowledge and experience that requires, I would want to come to you with a plan. That needs more time than just the histology.

There is one thing that was said to me by 2 specialist nurses when I raised my concerns about what to me was a delay between scans, biopsy, and specialist appointment,

One said that working with this cancer they have the time to get it right.

The other said that with some cancers they think in hours and days. With Prostate Cancer they think in terms of weeks and months, sometimes years, EVEN WITH THE AGGRESSIVE ONES.

That informed my waiting, and reduced the worry to something I could deal with.

I hope you will be helped in the same sort of way. Chatting with the nurses seems to help.

My husband roared with laughter at your quip.

When I was in business we had a saying 'Right First Time' even if it took a little longer to come up with a solution. What is poor, and could be improved in the NHS, is managing people's expectations as to timescales from the start and then being proactive if the timescales aren't met for any reason and ensuring that the patient is kept informed. Some areas seem to perform better than others which is a shame.

 mstev2 , I think you are spot on talking about the speed to treat.  My first reaction was I didn’t want to waste any time before starting treatment.  I spoke with a friend who is an oncologist and he said a few weeks won’t make any difference, this is a long game! David

Exactly the evidence from the nurses I talked to.

I don't think that this is explained well enough by many of the health professionals.

Dealing with this properly gets better results.

Even when the oncologist told me that I would be on hormone therapy for six months before radiotherapy she didn't explain why, and I didn't think to ask, because I was asking questions about side effects.

It was only later, when I had a "Hmm" moment and started delving into the deeper reaches of the information and support provided by Macmillan and Cancer Research Uk that I discovered that six months treatment is used a lot to shrink not only the tumour, but an enlarged prostate. The oncologist referred to my prostate as "chunky", so there was the explanation.

I am all for a better target for the radiotherapy. Less side effects if they are blasting only what they need to blast.  It possibly needs to be explained though.

I am taking this to my own work. I'll bet I am as guilty of this in my own work as they are in theirs.

Hi there 

Nobody has talked to us about what happens after surgery. To be honest communication could have been much better all round. 

I think my husband thinks this will be it for treatment for now, he knows there’s a fair chance of a BCR at some point but only form our own reading. 

The waiting and thinking is pants I’m sure everyone feels the same! 

A