Looking for signposting the journey ahead

User

Posted 10 Apr 2023 at 06:12

Hi everyone, I am new to the group and new to Facebook. So hello.

I have been diagnosed with prostate cancer which has a gleason score of 8 and has spread to the seminal vesicle. I am due surgery on May 17th

I read an interesting paper on a 15 year study on surgery vs radio therapy vs watch and wait. One of the interesting parts looked at the benefit of removing lymph nodes. In concluded that there was little or no benefit and the risk of lymphoedema. I spoke to my surgeon and as my PSMA pet scan showed no evidence of widespread disease, he has agreed not to harvest my lymph nodes as part of the operation. I will try to upload the paper but cant work out how to do that on Facebook.

My surgeon suggested that he will have to remove one nerve but will try to spare the other.

I have a couple of questions, does anyone have experience of a diagnosis like mine and the long term impact on urinary control. Also how long did it take to recover from the operation.

Hope I have not broken any etiquette in posting this.

User

Posted 10 Apr 2023 at 20:37

Hi 10kv. Like you I had a T3bN0M0 diagnosis (spread to seminal vesicle). I also opted for surgery. I didn't have the benefit of a PSMA pet scan, although nothing showed up on the MRI scan. Because of the likelihood of spread to local lymph nodes the surgeon recommended removing these along with the prostate. A total of 36 nodes were removed and the histology indicated one of them to be positive. The price I paid for that was a lymphocele which had to be drained and lymphoedema in my right leg.
Recovery time and urinary continence are very variable from patient to patient. My recovery time was hampered by post surgery complications relating to lymph node removal. Recovery of urinary control was a slow process over about six months. It is not like it was pre surgery. I still get the odd leaks during the day with the usual things such as heavy lifting etc. Long distance walking remains the main issue where I need to walk with a large pad in place.

User

Posted 10 Apr 2023 at 20:50

Hi ChrisBroms

Thank you so much for your reply. I am sorry that you now have lymphoedema, it is an outcome I am trying to avoid. I have T3aN0M0 with left vesical incursion and he is going to try nerve sparing on the right side. I honestly have no idea whether not harvesting my lymph nodes is a good long term outcome but the oncologist did suggest that he could 'mop up' any residual cancer with radio therapy.

TBH I am not anxious about the surgery but very anxious about the post operative recovery and the slow process of recovering urinary control and the physical recovery too.

I am a forensic scientist and spend a lot of my time on my feet and I am dreading both the fatigue that I have heard about and the need for pads. I am so lucky that I am going on a holiday at the end of the month returning three days before the surgery so that should keep my mind occupied.

Your reply is most valuable to me, thank you

User

Posted 10 Apr 2023 at 21:05

Hi 10kv,

Relating to your concern for post operative recovery, recommended to start daily pelvic floor exercises, as there is a month before your op - gives you some time to strengthen them

User

Posted 11 Apr 2023 at 00:24

Originally Posted by: Online Community Member

I am dreading both the fatigue that I have heard about and the need for pads

Fatigue isn't generally an issue post-op as long as you don't try to be superman. Recovery from abdominal surgery requires about 500kC per day to begin with so as long as you rest plenty, eat well and don't overdo things in the first few weeks, you will be fine. Generally speaking, it is suggested that men should be okay to return to work between 6-8 weeks after keyhole RP and 10-12 weeks after open surgery.

Some men are dry immediately after the catheter is removed while others may take many months - about 90% of men are using one pad per day or less at 12 moths post-op. They might feel huge to wear (to someone not used to them) but are not noticeable to other people so even if you do have to wear pads to work to begin with, it won't be the end of the world.

If fatigue really worries you, you are far better with the op than with radiotherapy / hormone treatment; the hormone treatment is what usually causes significant fatigue.

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

User

Posted 11 Apr 2023 at 00:29

Originally Posted by: Online Community Member

My surgeon suggested that he will have to remove one nerve but will try to spare the other.

Just for information, the nerves are web-like structures on both sides of the prostate, similar to the pith of an orange. So your urologist has said he will try to save the nerve bundle on one side but will have to remove the other. Even if he has to remove some of the nerves on the 'good' side, there may still be enough left to recover - it isn't like there is one nerve on each side and you either keep it or lose it.

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

User

Posted 11 Apr 2023 at 07:00

Dear LynEyre

That is good to hear, very good indeed. Thank you for taking the time to respond.

I was fortunate enough to meet with both an oncologist and the surgeon and I asked the oncologist if he was me what would he do? He replied if he was a 62 fit man like me, he would go for the surgery. Thankfully they both work as a team and he suggested that if he had to do radio therapy it would be much lower level than if I did not have the surgery. So I had a bit of a wobble on deciding which way to go but opted for the surgery and I am at peace with the decision.

Concerns are a bit invasive in my thinking right now, tbh, but I have been reading the stories of others and am coming to terms with the possibilities that either I am going to get back control over time, or not. I even looked up artificial sphincters, I realise that I am a long way from considering this, however it is good to know that there is a pathway should I not get back control.

I had a dear friend die of ovarian cancer and this does give me a good frame of reference to be grateful that I have this type treatable cancer.

Take care, and thanks again

User

Posted 11 Apr 2023 at 07:23

Hi 10kv,

I’m surprised that you’re T3aN0M0 if it’s spread to the Seminal Vesicles…should it not be T3bN0M0?

Derek

User

Posted 11 Apr 2023 at 07:49

Hi Decho

You are indeed correct, I have just gone through my notes and it is stated T3bN0M0. Jonathan

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