Surgery or RT-very confused

User

Posted 17 May 2019 at 07:09

Good Morning,

My dad has been diagnosed with prostate cancer. It is Gleason 4+3, and in both lobes, all biopsies show cancer cells. PSA 15.5. Thankfully we are told it is contained within the prostate.

We have now seen the surgeon and oncologist but are very confused at which route to take. I know that this is a personal decision but it would be lovely to hear from anyone who has been in a similar situation.

The Oncologist recommended hormone therapy, then RT (external beam then brachytherapy) as he feels it may be needed anyway if Dad has surgery as the cancer is in both lobes. However, the surgeon is also saying surgery is a good option. My dad is moving more towards surgery but we have no information on the stats of the surgeons as the hospital only started offering Robotic assisted about at year ago (this is the only surgery type they offer). BAUS only has data to 2017, which also means no up to date data on surgeons at other hospitals as we also have the option of Guys & St Thomas's.

So very confusing as the side effects are always going to be an unknown whichever route but we feel were lacking enough information to make such a huge decision. Any advice would be very much appreciated. Thank you so much !

User

Posted 17 May 2019 at 10:36

Generally, though not always, statistically, the older a man is the greater the chance is that he will be treated with HT/RT which is kinder than surgery but can still have some side effects and risk of initiating other cancer years on or still potentially permit regrowth of s tumour within the prostate. There is also a greater risk of incontinence with surgery. However, RT can in need be given after surgery but surgery after RT is very problematical and few surgeons will do it. In Dad's situation I would want to know where the cancer is and how confident the surgeon is that s/he is that it can all be removed. The views of an independent second opinion who would need to see Dad's histology and scans could be helpful. A mans age, fitness and attitude towards risk and side affects is for consideration, so it's not just a question of whether surgery or RT is better because each broadly has similar success rates but what the situation in a specific case and accepting potential unknown side effects. If you download or obtain a copy of the 'Toolkit' from the publications section of this charity it will supply a lot more information but it is down to the affected man to decide which treatment he prefers.

Guys has a good reputation for surgery but not all their surgeons will be highly experienced with the robot and generally more experience provides better results.

Brachytherapy with external beam is becoming increasingly favoured way of administering RT where this is appropriate.

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Barry

User

Posted 17 May 2019 at 11:09

Well, you have asked the $64,000 question to which there is no answer!

If you click on my pen-name above; ‘Bollinge’, you can see my story (and anyone else’s), and I am cancer free.

However, two friends of mine had surgery within the last year like me, but unfortunately they both have recurrence. They now have to undergo hormone therapy and radiation treatment anyway. I wonder if they rue they day they chose the wrong pathway, but of course they took advice from professionals.

Best of luck however it pans out.

Cheers, John.

User

Posted 18 May 2019 at 02:12

Hi Nicha,

Following my surgery, and being one year cancer-free, the latest prognostications from the Memorial Sloane Kettering Hospital nomogram (look it up) in my particular case are as follows:

Chance of recurrence (the bugger’s back): 2 yrs 26%, 5 yrs 59%, 7 yrs 68%, 10 yrs 76%. It also says I have a 98% chance of surviving the disease for 15 years, by which time I might have died of something else. I take them with a pinch of salt and joke I might as well get a palm reading from Gypsy Petulengro on the Golden Mile in Blackpool.

The nomogram is science based, with the ten year result balanced against recent improvements in treatment and longevity.

Am I bovvered? Nah!

Cheers, John.

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User

Posted 17 May 2019 at 10:36

Barry

User

Posted 17 May 2019 at 11:09

User

Posted 17 May 2019 at 20:57

Thank you Barry that's very helpful information. Just so much to consider. I will definately take a look at the tool kit.

User

Posted 17 May 2019 at 21:31

Thank you John. What wonderful news you are cancer free! . I have read your story and also your account of the days following your surgery. We've not been told that even with surgery there is a 37%change of recurrence within 5 years! I thought the percentage would be much lower. We were only told that surgery had a lower risk of recurrence than RT/HT but no figures.

My dad's biggest side effect concern is incontinence, which we understand is a greater risk with surgery but there is also that chance that surgery will cure avoiding months of treatment.

Thanks again

Nicha

User

Posted 17 May 2019 at 22:33

hi nicha

welcome. have a look at my profile.

my brother was offered surgery and decided on RT.

Barry and Bollinge really sum it up succinctly. other issues can come into play 're. is dad employed ? how old etc etc . sexual activity importance.

I'm unclear if you are son or daughter.

Thanks to forum I'm far more informed than I was back in 2014 at my dx.

hope this helps.

User

Posted 18 May 2019 at 00:47

Originally Posted by: Online Community Member

We've not been told that even with surgery there is a 37%change of recurrence within 5 years! I thought the percentage would be much lower. We were only told that surgery had a lower risk of recurrence than RT/HT but no figures.

That will have been the % chance of recurrence for Bollinge; your dad’s %risk will be different. My husband was 50, with PSA of 3.1 and a T1 cancer allegedly too small to even be seen on the scan but the diagnostic letter from surgeon stated that he had a 55% chance of recurrence. They use a range of data to work it out for each person. That might help your decision making, to ask the urologist or your nurse specialist (if one has been allocated) what the % chance of recurrence will be if he opts for surgery. The chance of recurrence will be lower with brachy/IMRT because the nerve bundles and seminal vesicles are zapped along with the prostate. The other thing to clarify is whether the surgeon intends to offer nerve sparing or whether s/he has already determined that it will be non nerve sparing.

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

User

Posted 18 May 2019 at 02:12

User

Posted 18 May 2019 at 19:10

Thank you everyone.

The nurse specialist is due to call dad so I think we'll have more questions that they can hopefully help with.

We've been provided a lot of booklets by the hospital on PC and treatment options. It just seems a vast array of side effects for each treatment. I guess it is going to be come down to looking at the worst case scenario of each and dad deciding what he would be able to live with.

I'm wondering if the nurse specialist can get some information on the surgeon we met with as there are no stats for him on BAUS......

User

Posted 19 May 2019 at 00:15

Hi, Mine was 4+3 but after the op they looked at it and it was 4+4. Not unusual to be upgraded.

It was 13mm on one side near the apex and close to the edge of the prostate. That made me think it needed early action and was away from the bladder so might be removed cleanly. Although I asked the surgeon if the sphincter could have some spread, he said not usually, he wasn't a man of many words but did the job. He took the nerves on the side it was on. I've no regrets as things haven't been too bad right from the moment I woke from the op. I'll not be confident for years and greet each psa test with the same concern. I have about 50% ED but have no big continence concerns. Although there are small issues that people don't often mention but do happen, like leaking a bit if you get aroused. To me the psa test is 90% and everything else within the last 10%. Whereas some people believe other things like their sex lives and continence are much bigger. Maybe it would be if it was a big problem, but not in the scheme of things.

I used to think having it cut out was the obvious solution but now realise radiotherapy might get things that are outside the prostate. Although having hormones and then 30 days RT and hormones again and not knowing the outcome for around 18 months isn't as clean cut as going to sleep and waking up then getting a full pathology report and psa test result within 6 weeks. There are side effects for both. I'm glad I was very focussed on having it cut out, it got a quick operation that might have made a difference.

Edited by member 19 May 2019 at 00:17 | Reason: Not specified

User

Posted 20 May 2019 at 13:32

Thank you again for all of your help and information so far, it is very much appreciated!

My next question I'm posting on behalf of my Dad. Dad is still considering treatment options and would find it really helpful to hear from those of you who have chosen the HT/RT route over surgery. How did you get on/how are you finding it? Did you experience side effects? how did these impact you day to day? what was it like having to go to the hospital every day whilst having RT.

Dad is advised that if he decides on this route he will have first three months of HT, then see a consultant to look to start RT but 6-8 month wait. First will be external beam radiotherapy for 4-5 weeks (Mon-Fri), then soon after Brachytherapy (one off we understand). The Oncologist suggested that most people 'breezed through HT/RT and continued with their normal life day to day' but not sure how true this really is........

Thank you again for any advice/experience you are able to share to help Dad with his decision.

User

Posted 20 May 2019 at 14:00

I went down the HT/RT route. There are two sets of side-effects to consider: those of the HT and then the RT itself.

HT side-effects vary dramatically from person to person, but almost always include extreme loss of energy, complete loss of libido, and may include typically menopausal symptoms - hot flushes, mood swings, memory problems, weight gain, etc. I found my side-effects to be manageable; the one that affects me the most is the loss of energy - I feel shattered after doing the simplest physical activity. I was on HT for 6 months prior to my RT and am due to be on it for 2 years in total (now 10 months into it).

The RT side-effects weren't too bad at all. I had 30 fractions, so 6 weeks in all. The first three weeks or so were pretty much symptom-free, but in the latter part of my treatment I experienced a little diarrhoea, passing mucus from my back passage, problems with urine flow (the RT makes the prostate swell, which restricts the urethra) and increased urgency to urinate. At its worst I was having to get up every hour all night long. These are typical symptoms, and there are drugs which help a lot. Symptoms typically peak around 10-14 days after the end of RT.

You can continue with normal life during RT (being tied to the toilet aside) but it does take up a large part of your day. My daily sessions took around 4h in total with travelling, doing the prep at the hospital (drinking the right amount of water to prepare for the machine and using a micro-enema to empty the lower part of the bowel) but get into the swing of things and weeks go by. I saw my oncologist weekly during my RT to keep an eye on side-effects, etc, but I had my treatment privately and I don't know if this would be the case on the NHS.

All in all RT wasn't too bad. Within a month of the end of treatment all the side-effects, with the exception of a slightly increased need to urinate frequently, had gone away. RT is certainly nothing to worry about. I'm single and managed all the travel, etc, alone just fine.

Hope that's of some help to you,

Chris

Edited by member 20 May 2019 at 14:02 | Reason: Not specified

User

Posted 20 May 2019 at 14:18

My husband had 4 weeks of RT but arranged all of his appointments for early morning so that he could just go straight to work from the hospital. He continued with all normal activities including the gym and playing rugby and never missed a day’s work although towards the end he did nap at his desk in the afternoon a couple of times. He had none of the side effects others report, like bowel or urinary problems.

The HT was a different story - he started to grow man boobs and hated them, he really struggled with the loss of muscle tone and strength, and the hot flushes got him down. Most side effects are reversible so when he finished HT he did regain the lost muscle but the hot flushes are still a bit of a problem 7 years later.

He had surgery before the RT/HT and would tell you that the side effects of the hormones are nothing compared to the side effects of surgery which he very much regrets having. Obviously, the fact that surgery failed will be influencing his view.

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

User

Posted 21 May 2019 at 01:35

" Obviously, the fact that surgery failed will be influencing his view".

Yes, whilst it is interesting to learn what treatment men had, and how they progress, they are likely going to be biased depending on how they fared as individuals which may not accurately reflect statistical averages. So a person should not read a few profiles and cases here and assume the same result will apply to them or the person they are representing, there are just so many variables and even in what appears to be similar cases men can respond quite differently to treatment.

There is no point in looking back after treatment and where this has proved successful you are unlikely to do so. However, where further treatment becomes necessary, perhaps many of us have looked back. Based on what my surgeon representing the MDT told me, it was thought that he could not remove all the cancer seen in my scan so recommended RT instead at the outset and I went along with this. However, I had subsequent developments of regrowth of cancer within my prostate only, for which I had salvage HIFU and there is still a small tumour in my Prostate that is close to my rectum which is apparently too difficult to treat other than systemically. A PSMA scan last year and 10 years on from RT has not shown any cancer outside my prostate. So any cancer just outside my Prostate must have been dealt with by the RT I had. I have pondered whether if I had in fact had surgery first, followed by RT, whether I would not have had the need for salvage HIFU because of not having a Prostate and that would have been the end of PCa for me. The trade off may well of been more and worse side effects. Hindsight!

Barry

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