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Life v2.0

User
Posted 10 Jul 2020 at 12:32

Well it is a bit of a shock to be posting on here, but seeing that there are other people who have had, or are having, similar experiences and are kindly able to share this it is reassuring to know that it isn’t just me in this situation.

I have just been diagnosed at the age of 49 (T2c N0, Gleason 3+4; 6/6 on left, nothing on right) following a slightly raised PSA test 18 months ago through a work medical check-up, which I initiated after my dad was diagnosed and treated six months previously.  Nothing was found initially when I followed up with my GP, but subsequent 6 monthly PSA checks each showed a slight increase, and a possible something from a DRE then led to a hospital referral – the rest I am sure is something you all know.

As with many people this was a complete surprise, as other than the very recently revealed family history it seems I don’t obviously tick the other risk factors.  I am fairly fit and active (you have to be with two young children!), and a runner (mainly off-road / trail / fell) and cyclist, although neither to any great standard, mainly just for enjoyment and fitness.  The consultant has mentioned that I would be ‘an ideal candidate for surgery’, although of course in some ways I would rather not be!

So, with my diagnosis and everything going on at the moment in relation to COVID-19, it feels like someone has installed Life v2.0 without my permission, and suddenly the future looks very different to six months ago.  It is especially strange given that I have no symptoms to speak of, but am now facing a life-changing operation.

I have a couple of questions which I hope that the experiences of others who are further along this new path may be able to help with:

  • Robotic surgery seems to be the strongly recommended treatment option, but I have been wondering whether anyone in my situation has considered HIFU or cryotherapy instead?
  • The NHS have been fantastic in keeping the diagnostic process moving forwards with all the complications thrown up by the coronavirus situation, but the waiting list for surgery seems to be around 6 months in the East Midlands – is this typical for the rest of the country, and when should I start to get concerned that it is taking too long to be treated?
  • And lastly, for those runners and cyclists out there, assuming I do go for the surgery, and I appreciate that everyone is different, but just to help me have a picture in mind as to what recovery might look like, what is a typical timescale before starting to run and cycle again, and then (hopefully) to get back up to a reasonable level of fitness?

Thanks in advance for any help you can give.

MGoat

User
Posted 10 Jul 2020 at 22:20

MGoat

Welcome to the site nobody wants to be on. If not already done so down load the toolkit. 

You like many others should be to young to be here. There are guys who have had a variety treatments who may be able to help.

Thanks Chris

User
Posted 10 Jul 2020 at 22:42

You wouldn't believe how many of the diagnosed men here are cyclists, and we have an awful lot of runners, triathletes, extreme marathon runners, etc. It seems to me that to join this club, you are more likely to be fit than not.

As for your questions, others will come along with their views but mine are:-

- don't assume that robotic is best. It depends on what you mean by best ... it means a shorter hospital stay and back to work more quickly but the outcomes are still (just) slightly better with open surgery than with robotic. John was 50 at diagnosis and opted for open RP for a number of reasons; your decision making might be different.

- HIFU does not give the same chance of remission as IMRT, brachytherapy or surgery. If you want to minimise the risk of side effects and you can afford to pay for it that's fine but keep in mind that there is a high chance that you will need to have it more than once.

- cryotherapy is hard to access in the UK and does not have a great deal of data behind it yet. HIFU and cryotherapy are both more popular as salvage treatments than as primary treatments

- it is not clear from your post whether you have actually seen an oncologist yet. Surgeons will recommend surgery; oncos will recommend their specialism; that's the way of the world. But it is wise to see an onco to talk about RT / brachy before you make a final decision about the other options. I am surprised that you haven't included brachy in the options you are looking at; if it had been available to John he would have snapped their hand off but unfortunately, he wasn't suitable for it.

- 6 months waiting list for surgery is scandalous - I hope they will offer you hormone treatment in the meantime to hold it at bay? The target that hospitals are supposed to meet is 61 days from you informing them of your treatment decision but many are quicker than that.

- we have a couple of threads running on cycling post-op at the minute. Surgeons vary - some say you can get back on a bike at 6 weeks, others say longer. Our urologist was very clear that John must not cycle for at least 6 months - his words were "what's the point of me trying to save your nerves if you don't give them the best chance of recovery". He found it tough at the time but worth it in the long run. As I said on another thread, prostate cancer ruins your sex life and if J had got back on the bike sooner than recommended, I would probably have divorced him by now for not putting our relationship first.

- running - if you have robotic RP and you are lucky, you could be running again in 6-8 weeks. It isn't so much the fitness; it is about how much you are leaking. If you are continent very quickly, you are more likely to get back to normal exercise quite soon but if you are badly incontinent, it is obviously much harder to do any exercise in public. John had the op in January and was playing rugby again in the September; he was back in the gym at about 12 weeks I think, but as I said above, he had open surgery so physical recovery is much slower.

Edited by member 10 Jul 2020 at 22:43  | Reason: Not specified

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

User
Posted 11 Jul 2020 at 08:50

Hi MGoat,,

Yes, for something that is supposed to be the size of a walnut, it certainly turns your life upside down when you get that diagnosis. 

I'm no athlete or iron man like some of the guys on here, but following surgery, I eased myself back into running at two months. I started using the treadmill at the gym so as to be near a toilet. Over the following weeks I could go further and for longer. Now at 8 months, I usually get out and run up to an hour no problems.

At six months I got back on my mountain bike once a week typically doing around 20miles.

I'm not quite as fit as before, but my excuse is that the gym is shut due to covid so my exercise choices are limited. 

Good luck with your decision and treatment. Hope this helps. 

Kev.

User
Posted 11 Jul 2020 at 09:18

Sorry your here MGoat. Its not a place any of us want to be.  Have a look at my profile. I'm older but a similar diagnosis and had open RP surgery March 23rd this year. I'm a keen cyclist and was back on the bike (turbo) around week 10. I'm now clocking up 150-200 KM a week with no problem and have a trip to Mallorca booked next April. I started running about a week earlier than cycling and will be lining up some races next year. I was very worried about surgery and possible side effects but after being on AS for over 2 years and seeing things progress on the 3rd MRI I felt I needed to act. In reality I had some minor incontinence issues for a few weeks but progressively improved until I was completely dry at week 10. ED is the other big issue and although things aren't 100% back to where they were pre-op things are definitely getting there. Good luck. Hope you make the right decision on treatment for you. Ask away on here there will normally be someone who has an answer

 

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User
Posted 10 Jul 2020 at 22:20

MGoat

Welcome to the site nobody wants to be on. If not already done so down load the toolkit. 

You like many others should be to young to be here. There are guys who have had a variety treatments who may be able to help.

Thanks Chris

User
Posted 10 Jul 2020 at 22:42

You wouldn't believe how many of the diagnosed men here are cyclists, and we have an awful lot of runners, triathletes, extreme marathon runners, etc. It seems to me that to join this club, you are more likely to be fit than not.

As for your questions, others will come along with their views but mine are:-

- don't assume that robotic is best. It depends on what you mean by best ... it means a shorter hospital stay and back to work more quickly but the outcomes are still (just) slightly better with open surgery than with robotic. John was 50 at diagnosis and opted for open RP for a number of reasons; your decision making might be different.

- HIFU does not give the same chance of remission as IMRT, brachytherapy or surgery. If you want to minimise the risk of side effects and you can afford to pay for it that's fine but keep in mind that there is a high chance that you will need to have it more than once.

- cryotherapy is hard to access in the UK and does not have a great deal of data behind it yet. HIFU and cryotherapy are both more popular as salvage treatments than as primary treatments

- it is not clear from your post whether you have actually seen an oncologist yet. Surgeons will recommend surgery; oncos will recommend their specialism; that's the way of the world. But it is wise to see an onco to talk about RT / brachy before you make a final decision about the other options. I am surprised that you haven't included brachy in the options you are looking at; if it had been available to John he would have snapped their hand off but unfortunately, he wasn't suitable for it.

- 6 months waiting list for surgery is scandalous - I hope they will offer you hormone treatment in the meantime to hold it at bay? The target that hospitals are supposed to meet is 61 days from you informing them of your treatment decision but many are quicker than that.

- we have a couple of threads running on cycling post-op at the minute. Surgeons vary - some say you can get back on a bike at 6 weeks, others say longer. Our urologist was very clear that John must not cycle for at least 6 months - his words were "what's the point of me trying to save your nerves if you don't give them the best chance of recovery". He found it tough at the time but worth it in the long run. As I said on another thread, prostate cancer ruins your sex life and if J had got back on the bike sooner than recommended, I would probably have divorced him by now for not putting our relationship first.

- running - if you have robotic RP and you are lucky, you could be running again in 6-8 weeks. It isn't so much the fitness; it is about how much you are leaking. If you are continent very quickly, you are more likely to get back to normal exercise quite soon but if you are badly incontinent, it is obviously much harder to do any exercise in public. John had the op in January and was playing rugby again in the September; he was back in the gym at about 12 weeks I think, but as I said above, he had open surgery so physical recovery is much slower.

Edited by member 10 Jul 2020 at 22:43  | Reason: Not specified

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

User
Posted 11 Jul 2020 at 08:50

Hi MGoat,,

Yes, for something that is supposed to be the size of a walnut, it certainly turns your life upside down when you get that diagnosis. 

I'm no athlete or iron man like some of the guys on here, but following surgery, I eased myself back into running at two months. I started using the treadmill at the gym so as to be near a toilet. Over the following weeks I could go further and for longer. Now at 8 months, I usually get out and run up to an hour no problems.

At six months I got back on my mountain bike once a week typically doing around 20miles.

I'm not quite as fit as before, but my excuse is that the gym is shut due to covid so my exercise choices are limited. 

Good luck with your decision and treatment. Hope this helps. 

Kev.

User
Posted 11 Jul 2020 at 09:18

Sorry your here MGoat. Its not a place any of us want to be.  Have a look at my profile. I'm older but a similar diagnosis and had open RP surgery March 23rd this year. I'm a keen cyclist and was back on the bike (turbo) around week 10. I'm now clocking up 150-200 KM a week with no problem and have a trip to Mallorca booked next April. I started running about a week earlier than cycling and will be lining up some races next year. I was very worried about surgery and possible side effects but after being on AS for over 2 years and seeing things progress on the 3rd MRI I felt I needed to act. In reality I had some minor incontinence issues for a few weeks but progressively improved until I was completely dry at week 10. ED is the other big issue and although things aren't 100% back to where they were pre-op things are definitely getting there. Good luck. Hope you make the right decision on treatment for you. Ask away on here there will normally be someone who has an answer

 

User
Posted 11 Jul 2020 at 11:12

Hi MGoat, sorry to see you’ve had this awful sucker punch too. 

We (via me) have been very fortunate with this forum, as we met somebody who lives locally to us going through the same thing at more or less the same time. So much so, that he and my husband ending up having RARP at the same hospital on the same day - Day before yesterday.  So, finally got to meet in person too.

I think the factor for us when we saw the Surgeon regarding DaVinci versus open RP was not only recovery time but dexterity of the robot versus the human hand. A factor that was placed as a positive, as “he is young”.  The Surgeon wanted to minimise risks for side effects.  Our Surgeon did give a very balanced overview of all the treatment options, and we felt this was right for us. 

Obviously, it is very early days for knowing how things will pan out but, so far, husband is very happy with his choice in between the bouts of discomfort.  If we can help at all with recovery updates. Feel free to ask. 

Mel

User
Posted 14 Jul 2020 at 21:04

Thank you to everyone who's taken the time to reply to my post, and apologies for the delay in acknowledging but currently away on holiday for a much needed break. Will have another look through when back and will post if any questions. 

Thanks again

MGoat

User
Posted 28 Jul 2020 at 16:03

After a conversation with the nurse specialist at the hospital last week suggested any possible slot for surgery would be September at the earliest, had a phonecall out of the blue ysterday to offer an appointment in 3 weeks' time.  Suddenly it all seems a bit too real.

There are probably a lot of further questions I could ask, but the information on this site has been very useful in addressing many of these, along with reading about the experience of others.

But I did have one question in relation to nerve sparing, as effectively I am having to choose whether I want to opt for this on one side (although currently don't feel I have enough information to make a clear choice).  Putting aside the obvious ED side effects, does anyone have any experience or knowledge in relation to nerve sparing and possible cancer recurrence?

Thanks again

MGoat

User
Posted 28 Jul 2020 at 16:28

Lyn is our resident expert but in the meantime.

I was staged T2C after surgery ( so in theory same as you) and margins at the edge of the prostate were clear (no cancer) so the surgeon was able to remove the prostate cleanly and save nerves on both sides. As a result ( and with a bit of luck on my side) I have been able to recover pretty quickly on the ED front and its done nothing to increase my chances of recurrence

I'm guessing they are asking you to choose between saving nerves on one side or trying to save nerves on both sides with the risk that there may be some breakout or margin not clear? If that's the case then its a choice between maximising your chances of quicker ED recovery but running the risk of further treatment (because they didn't get all of the cancer or opting for nerve sparing one side only and having a better chance of not needing further treatment.

 

 

User
Posted 28 Jul 2020 at 17:10

Hi MGoat,

As I understand it is that with nerve sparing. there is a risk that, depending on how extensive the cancer is in the prostate, PCA cells can "travel" along the nerves and therefore may not be caught during surgery.  I would expect though your surgeon would be on the look out for any possibility of this when he/she performs your surgery based on the MRI info they have.

Having said this, I'd want to know why your surgeon is offering nerve sparing only to just one side. Like MikeW, although I was a T2C, Gleason 3+4 (later changed to 4+3) and had a PSA of 4.6 at DX, the margins appeared clear and so the surgeon was able to spare both. 

Flexi

 

User
Posted 28 Jul 2020 at 21:18

Hi,    My diagnosis was 4+3 on one side only.   The surgeon said he'd do nerve saving on one side but the other side would have to go.   That would likely give me a less firm recovery in 6 months with the help of tablets.  Surgeon's are often optimistic but presumably they have experience to know the average.

He had 30 years experience I wasn't going to take any risks at all by suggesting he try to keep the other side.  He gave the impression the nerve could be effected by errant cells.

It's a tough call about whether to address alternative treatments.  I didn't but am quite a bit older and can't speak for you.   Some people speak of regret but some are more decided.

Like you, I got a call with a date several weeks earlier than expected.  I was over the moon.  

All the best, Peter

 

User
Posted 28 Jul 2020 at 23:40
I am interpreting this differently to the other guys - I suspect that the surgeon is asking MGoat to choose between non-nerve-sparing or just sparing the right side - with T2c and 6 out of 6 cores on the left, those left side nerve bundles are going to be in the bucket.

It isn't an easy choice to opt for non nerve sparing - you are choosing almost certain ED that tablets like viagra will not help with. However, some men will make this choice because a) they aren't having sex anyway or b) they already have ED for other reasons or c) they are very anxious about having a cancer inside them. I suspect it is easier to go with non nerve sparing when the surgeon doesn't give you a choice. Be assured though, if you ask the surgeon to attempt nerve sparing on the right hand side, he will do whatever he can but if he sees signs of cancer on that side, he will do what he is obliged to do and remove the nerve bundles ... you aren't signing a binding agreement for him to leave the nerves behind, you are simply expressing a preference.

Whether you have nerve sparing on one or both sides doesn't seem to make a huge difference to whether you get erectile function back. Some men regain full function with only one bundle while others with both bundles spared never have an erection again.

Knowing what you now know, it is not too late to consider radiotherapy instead?

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

User
Posted 28 Jul 2020 at 23:46

Hi MGoat

All the very best. I left it to surgeon.  Mine was multifocal. Disappointed when told non nerve sparing post op.I'll never know if this was being over cautious. Had PNLD also, again didn't understand as much as I do now thanks to this forum.  I joined forum  post op +1year.

See my profile.  Over 5 yrs now, all fine. 3 yrs with ED, last 2 years ok and slowly still improving.  Packed up PDE5 meds and pump over 3 years ago.   

Regards Gordon

PS updated after reading Lynn post, which posted around same time.  

Neither  a. b. or c applied. Re. Post above.  We were laid back maybe, ideally we preferred both nerves spared.  We made our preference known.

 

 

Edited by member 29 Jul 2020 at 00:00  | Reason: Added. PS

User
Posted 29 Jul 2020 at 01:29
My intention was to communicate that a, b & c applied to men who opt for non nerve sparing, when given a choice. Some men aren't given the choice because their cancer is already known to be extending into the nerve bundles although I still don't quite understand why those men opt for surgery rather than RT. I think most men, like you and John, go into the op hoping and expecting nerve sparing but aware that the surgeon may change plans once s/he can see what they are dealing with. Recent improvements such as live biopsy are now improving this.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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