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User
Posted 29 Sep 2021 at 20:42

Hi Ivan,

My O/H was originally diagnosed with advanced PCa T3a N1 M1b. We got a 2nd opinion and then had a PSMA pet scan which confirmed no bone mets, so changed things a lot for us. For T3a N1….RT and HT would be mainly recommended but we have decided to opt for RARP and they will take the affected nodes too. He did start HT and he is likely to need ART but he really feels like he wants to get it out and then we’ll deal with whatever comes next.

It’s such a difficult decision and you never really know if you’re making the right one, but there isn’t right or wrong (which many have said on this forum too) we just went with our gut and have felt much better after the decision was made.

We’re now just waiting for an NHS referral out of our area….which is proving difficult! So may just have to pay private in the end. 

Wishing you the best of luck with your decision and future treatment.

User
Posted 29 Sep 2021 at 20:59

Hi OhDear

I wish you the very best with your decision. My case was similar to yours T2b with Gleason 3+4 and contained within the prostate. For me the decision was also between HT or Surgery but because of my age 57 I was strongly advised by both surgeon and onco to go for surgery. I dont regret my decision as post op histology confirmed 30% of the gland was cancerous- much more than was expected. If you check out my thread you will see my journey and I hope it will be helpful. I also found TechGuy and several other threads very helpful in making my decision. Good luck and Im sure once youve decided it will be a big relief. Trust your gut whatever it tells you 

User
Posted 30 Sep 2021 at 11:24

Thanks, Elaine for your comment

 

The men I personally know that have had prostate cancer have all opted for surgery, primarily because they want to "get it out" but also because, by having surgery, you can still, if the need arises, undergo a course of RT. One of the 3 men in my small village of 300 people, had, in the end, to have radiotherapy after surgery, but that was, much to his annoyance, because his consultant kept telling him to wait before having any treatment. In the end he waited over 2 years before undergoing any treatment and he now wishes (though he is still alive 13 years after his final bout of treatment) that he had insisted on having surgery as soon as the cancer had been detected.

 

Ivan

User
Posted 30 Sep 2021 at 11:33

Thanks, Jeremys, for your comment

 

I have indeed read both your thread and that of TechGuy's and have found both useful.

 

I am a little older than you at 63, but am still young enough, I think, to put up with the downside/inconvenience of having surgery. It will be a right pain (hopefully, metaphorically speaking), but, needs must and all that and I will approach the whole thing with a stiff upper lip (probably the only thing that will be after the surgery!).

 

Ivan

 

Ivan

 

 

User
Posted 02 Oct 2021 at 09:32

Dear OhDear

 

It is very daunting but with an experienced very high volume surgeon (or Ninja surgeon as TechGuy calls them) its very manageable and all over pretty quickly. Good luck with whatever you decide. 

User
Posted 04 Nov 2021 at 13:12

Further update

 

I have today had a face-to-face meeting  with one of the "robotic" surgeons at Addenbrookes to discuss the implications of undergoing surgery rather than RT. The surgeon again confirmed that my last biopsy (September 2021) showed that the cancer was throughout my prostate (16/19 cores were positive), but that only 5% was graded Gleason 4 (Category 2). The rest was Gleason 3 (Category 1). Overall Gleason score is 3+4. He suggested that based on my relatively low PSA (6.01) and Gleason grading  I could continue with Active Surveillance for a while longer, but that at some stage action would have to be taken.

After further discussion, I opted for treatment and decided on surgery. The date for surgery was arranged and this is scheduled to take place on 21st December. My bmi is presently around 28.6 and ideally should be lower, so the 6 weeks period I have before my surgery gives me ample time to loose the required couple of kg to be "fit" ready.

My CT scan in September revealed some cysts (non-cancerous ones) on my kidneys and I took the opportunity to discuss this with the surgeon. He confirmed  that they were present when I had a CT scan in 2018 but because they were nothing particularly unusual and were not affecting me ( Apparently 1 in 5 men (they are more common in men) over 50 have cysts on their kidneys/liver), I was not informed about them at that time.

 

My thanks to all on this board that have commented on my thread, with particular thanks to Jeremys who sent me a private message when he read a month or so ago that I was considering undergoing surgery. The 2 surgeons at Addenbrookes come out very well in the numbers game (each performing around 300 operations a year) and the fact that the hospital is only 8 miles from me made the decision to use the NHS rather than go private relatively straight forward. The fact that 2 people I know used the 2 surgeons for their prostate removal back in 2010 helped, as did the fact that I would save £22K by not going private (but that was not really a consideration as ones health must always come first). 

User
Posted 15 Nov 2021 at 11:05

Update

For the sake of completeness (and so I have an easily accessible record), I have posted below part of the latest letter I have received from my surgeon:

Prostate cancer diagnosed March 2021

Diagnostic PSA level: 5.9

51 cc prostate

MRI scan: T2 N0 Mx

Biopsies: 6/13 cores Grade Group 2

Commenced active surveillance

TP biopsies (16th September 2021): right side 9/9 cores Gleason 3+4=7 maximum tumour length 15mm, left side 3+4=7 in 5/9 cores maximum tumour length 12mm, target right anterior 3+4=7 in 3/4 cores maximum tumour length 8mm Gleason pattern 4 less than 5% overall

CT scan (abdomen pelvis): no metastasis, hence overall staging T2 N0 M0

Comorbidities: gastro-oesophageal reflux disease on Lansoprazole and blood pressure managed with Lisinopril

BMI 29.16 (target weight 90 kilos)

 

 

 

 

 Surgery to remove my prostate will take place on 21/12/21

 

 

 

 

 

 

 

 

User
Posted 15 Nov 2021 at 14:00

All the best for the surgery 21/12.

 

Ido4

User
Posted 22 Dec 2021 at 19:36

An update to advise that I underwent RALP surgery on 21/12/21.

To assist others who may be contemplating surgery for their prostate cancer I have outlined below what occurred.

My surgery was at Addenbrookes and I had to get to the hospital by 7 am. I was instructed to take 15 mg of Lansoprazole ( For acid reflux) and  a suppository (to clear the bowels) by 6 pm the night before and the same tablets by 5 am the day of the surgery. I got up at 4 am, had a shower, took the tablets and at 6.15 am my son drove me the  to the hospital (6 miles away). I got to the hospital at 6.40 am and was surprised to find that there were already around 20 people waiting to be admitted to the surgery units. They were not, though, all undergoing surgery for prostate cancer.

I was admitted to a ward, assigned my own bed, and was told that my surgery would take place in the afternoon, around 1.30 pm. The morning surgery for prostate removal took place at around 8.15 am. Aware that the wait for my surgery could be a number of hours, I had taken a book with me and underwent several blood pressure and other tests during the period up to my surgery. I was called into surgery at 1.50 pm and after being given  painkillers and an anaesthetic via a vein in my hand, I woke up at around 5.30 pm, minus my prostate, in a recovery ward.Fifteen or so minutes later I was taken back to the ward and the bed I had been assigned to in the morning.  I was immediately approached and asked whether I wanted a drink (I was instructed not to drink anything after 5 am the day of the surgery, though was allowed to drink water up to 10 am at the hospital because my surgery was scheduled for the afternoon) and food ( I was instructed not to eat after 10 pm the night before, but had actually not actually eaten after 6 pm). Because I was ravenous and thirsty,  I asked for and was given 2 cups of tea, a constantly filled up jug of water and a meal of roast chicken.

The catheter had already been inserted during surgery and it was interesting seeing the night bag filling up as I drunk copious amounts of liquid. It was regularly emptied and measured and at least one of the bags of urine was dipstick tested. The bag was checked and where necessary regularly emptied throughout the night and up to the point I was discharged from the hospital. The first couple of bags had a pinkish hue to them but after that the contents became much clearer. The catheter down the penis is obviously an inconvenience, but it was childishly amusing to note that while I could lay in bed and pee the other 5 patients in my room of the hospital were constantly getting up throughout the night to go to the toilet.

 

All 6 of us in that room who had had surgery and been anaesthetised  found that we could only get to sleep for an hour or so and would then wake up for a while before again going back to sleep. The night nurse said that was usual for patients that are given a general anaesthetic. One of the other side effects is that it reduces blood pressure and that is the reason you are told not to take blood pressure pills on the day of your surgery.

I was visited by the surgeon who had performed the operation at around 7.50 am today ( 22/12) and because I had already  walked the outside of the wards corridor 20 times ( I wanted to get it done before the days new surgery arrivals arrived by 7 am) and was readily passing urine, I was told that I could go home later today. After further blood pressure tests, having some food and drink, and being given  5 different types of medicine to take now and after my catheter was removed I was allowed to leave the hospital at just before 2 pm.

The surgeon was very pleased with the operation and said that not only had he been able to spare the nerves on the left side of my prostate but that he had also been able to spare most on the right side too (which initially he did not think he would be able to do). Another nice touch was that one of the nurses with me during surgery phoned my son at 5.45 pm on the day of the surgery to let him know that everything had gone well. I eventually phoned him at 7.30 pm after I had had some food and drink and felt less groggy.

I meant to mention that all of us that had had general anaesthetic surgery had sore throats and for a number of hours found it hard to eat and swallow. We were warned about this prior to surgery and was told that this would be because a breathing tube would be inserted down our throats after we were unconscious.

Though it is very early days (hours in fact), I am in no pain, the catheter is an inconvenience and not an issue, though, that said, I have already used some Instillagel on the top of my penis to alleviate some pain.There is a slight leakage from the top of the penis but this is being absorbed by the Tena incontinence pads that I bought in readiness  for the period after my operation. Similarly, I have bought a soft cotton incontinence waterproof sheet from Dunelm which I have put on one of my spare beds where I will be sleeping until my catheter is removed.

 

Apart from the 7 wounds around my stomach area and the catheter you would not know that I had had an operation and I actually feel quite good. The catheter will be removed next Friday (31/12) and a follow up chat will take place with the surgeon in 6 weeks time. He will then have the results of the histology of my removed prostate which, hopefully, will show that a) it has negative margins and b) it is the same grading as the original biopsies.

 

Finally, I would like to thank all of you that post on this forum as it has greatly assisted my prostate cancer journey and ensured that I not only had the right information but that I had the right equipment for my post-surgery recovery.

Edited by member 23 Dec 2021 at 17:03  | Reason: Not specified

User
Posted 22 Dec 2021 at 23:27
Delighted your operation went smoothly. Congrats !! Wishing you a speedy recovery and a Merry Christmas with lots of rest !!! Fingers crossed for the TWOC on 31/12. Sounds like you will be fine and your full report will be reassuring for others about to undergo the same procedure.
User
Posted 23 Dec 2021 at 12:17

Sounds like everything went very well. Hoping your recovery is smooth. 
Enjoy Christmas now.

 

Ido4

User
Posted 23 Dec 2021 at 14:10

Post- surgery update

I meant to mention in my last posting the medicines that I have been given to take. These are:

Fragmin 0.2 ml injected daily into the stomach area for 28 days ( To prevent blood clots). I must admit I thought I would have a problem injecting myself but the needles are very thin and quite short and by injecting into a "fat" area and pinching the skin where you are going to inject  has proved not to be a problem at all.

Senna 2 X 7.5 mg tablets each night for 14 days (To prevent constipation)

Lactulose 40 ml a day for 28 days (To prevent constipation)

Ciprofloxacin one 500 mg tablet on 29/12 ( A strong antibiotic)

Tadalafil one 5 mg tablet a day from 01/01 (after catheter has been removed) to assist in the repair of nerve damage and for erectile dysfunction. These are to be taken as and when needed.

Post surgery observations:

Fitting my night urine bag to my day bag is easy and using a large bucket to put the night bag in works fine. At the moment the night bag is around half full after 5 hours and when I notice it is, and if I am awake, I empty it. Quite straightforward and, as yet, no accidents. There is some leakage from the tip of the penis but this is easily soaked up by the Tena pad that I have secured to the area where the tube comes out of the penis.

I find it more comfortable and easier to not wear underwear with the catheter in and  let my member just dangle down. I have a long dressing gown and wear that to save any embarrassment if a neighbour or delivery driver should knock on my door.

Though I am not suffering any real pain the area where my 7 puncture wounds are does feel tight and uncomfortable and I am now taking paracetamols to help with this. I assume that the heavy pain killers that were injected into me prior to surgery are now out of my system.

I have not  done a No. 2 for at least 4 days, but am passing loads of wind. Hopefully, the laxatives I am taking will shortly enable me to discharge a load.

 

Edited by member 23 Dec 2021 at 14:18  | Reason: Not specified

User
Posted 23 Dec 2021 at 20:16
Were you definitely only prescribed One Ciprofloxacin 500mg tablet a day, as I was prescribed Two each day for 5 days but perhaps this varies with perceived risk?
Barry
User
Posted 23 Dec 2021 at 20:37

Hello Barry

Yes, the paperwork says to only take one 500 mg Ciprofloxacin on 29/12, although the box I have been given with them in has 10 in and there is a label attached to it which says "Take one tablet twice a day for (blank) days". The paperwork says "500 mg tablet, start taking on 29/12, Take one tablet as a single dose for 1 dose". Now that to me reads just take one tablet on 29/12 and no more. But, perhaps, it means take one 500 mg tablet each day until used up

Based on what you have said, I think I will clarify with Addenbrookes exactly what the state of play is.

 

Thanks

User
Posted 23 Dec 2021 at 21:53

Hello Barry

 

Further to my earlier response, I messaged Addenbrookes for clarification and have received the following response:

 

"Hope you are recovering well.You are not a nuisance,it seems the information little confusing,
You only need antibiotics on the day of catheter removal in the morning as a single dose. I think there may have some supply issues with one tablet on its own hence given a full pack.
I apologise for the confusion caused"

 

So,  it has been confirmed that I just take a single dose of the tablet. Thanks for highlighting what could have been a potential issue.

 

Ivan

User
Posted 23 Dec 2021 at 22:47
OK, as well to have checked. I also had the pack of 10, 500mg and was told twice daily starting immediately for the 5 day course. As the catheter recommendation in my case of 7-10 days for catheter removal (done on the 8th day), my antibiotic course ended before it was removed. So different thinking.

Hope things progress well for you.

Barry
User
Posted 24 Dec 2021 at 20:55

Good to read your detailed run through of the operation Ivan. Very similar for Rob although he wasn’t given anything to clear his bowels and was allowed a light breakfast before 7am. He was booked in for 11am and surgery took place around 2:30pm.

Rob also wasn’t prescribed any of the antibiotic tablets 🤷🏻‍♀️ he just came back with his injections, paracetamol, ibuprofen and codeine (he hasn’t needed the codeine though). If I read that correctly is the tablet for before you get catheter removed? I wonder if rob will be given that when he had his clips removed and he will have an extra week with the catheter?

Hope you’re feeling well enough to enjoy a bit of Christmas. Hope your recovery continues to be good. Take care and all the best x

User
Posted 24 Dec 2021 at 21:30

Evening Elaine

My understanding is that you take the Ciprofloxacin prior to having your catheter removed to prevent a urinary tract infection. Taking it prior to removal of the catheter makes sense as  some of the urine that has bypassed the tube and just dribbled out over the last 8 or so days could be left in the shaft and pressed up against the tube. I guess that after a number of days the urine is not as "pure" as it once was and could cause an infection. I would certainly ask your hospital whether they intend to give Rob antibiotics to take prior to removal of the catheter. You don't want a perfect operation ruined by a urinary tract infection.

I have now had my catheter removal day bought forward one day ( to 30/12- Yipee!)  and was told by the specialist nurse assigned to me that, ideally, they like to remove the catheter 8 days after it has been inserted. So, strictly speaking my catheter should have been scheduled for removal on Wednesday (29/12), but it was delayed by 2 days (now one day) because of staff shortages. I have also now been told to take two 500 mg Ciprofloxacin tablets on 29/12 (one in the morning and one in the afternoon) and one 500 mg tablet after the catheter has been removed.

 

Yes, I am feeling a little better as each day passes and have now got my appetite back. Christmas lunch is now back on! Hopefully, Rob is also feeling better as each day passes and you are both able to enjoy good Christmas day and Boxing day lunches.

 

Ivan

User
Posted 24 Dec 2021 at 21:59

Thanks Ivan.

We should be in next week to have his clips removed so will ask them then. Robs catheter is in for 2 weeks just because of the bladder neck reconstruction so not booked in for that until the 4th Jan.

Yes he’s feeling pretty good, mainly resting so snoozing quite a bit….he’s still got prostap in his system though aswell so possibly some tiredness from that. I’m going to attempt a Christmas lunch for the two of us tomorrow and just see how he goes with it….got soup on hand if needed x

User
Posted 24 Dec 2021 at 23:15
Not all hospitals give antibiotics post-op or for catheter removal. Self-injecting isn't always required either.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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