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Robotic Prostatectomy and other options

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User
Posted 05 Mar 2019 at 18:45

I persisted and saw an oncologist nurse today and she kindly gave me a print out of the analysis of my biopsy. At 3+4=7 (grade 2) With a low PSA I'm not overly concerned. However, I'm keen to communicate with others with a similar grade as to what treatment options they have been recommended or experienced. 

One option that has been suggested to me is a Da Vinci Robotic Prostatectomy which is available to me at Chelsea and Westminster. This seems to be my preferred choice at the moment. 

I'm keen to hear from others about their treatment options and hear your experiences  

Thanks 

 

User
Posted 05 Mar 2019 at 21:09
Two things mitigate against Active Surveillance in your case:

1. You're young. If you were in your 80s rather than your 50s, it would be a different story, but at your age it really needs to be treated.

2. AS is generally not recommended for someone with Gleason 3+4 cancer, because of the "4" component of it being quite aggressive.

Of course there's no rush to be treated. Your long-term survival chances would probably be the same if you did nothing for a couple of years. But there seems no benefit to that unless there's some specific reason not to be treated at the moment.

All the best,

Chris

User
Posted 08 Mar 2019 at 14:31

My husband is a little older than you , 57 and had the same scores . He had RP with nerve sparing on Jan 22nd this year .His PSA at 6 weeks is 0.04, he has erections, is dry over night, we have even begun to have regular intercourse, and experiences mild stress incontinence in the day until late afternoon when it becomes a lot worse . Every day is a bit better though. He is working full time and travels for work driving and flying long distances. He has had to adjust to stopping more often for a toilet break or getting seated nearer to loo on plane. He walks daily and is back to his work outs with weights in our cellar though is not doing the same level as pre- op. He is an optimist, we both are, but I think the stress incontinence gets him down, especially as he was so diligent with his pelvic floor exercises before op and even now. However, I have reminded him that many women, especially those like me who have delivered twins,  have some stress incontinence and wear a small pad daily. It's part of my daily routine, like it is his since his surgery, and he accepts that . I know it is not nice or particularly normal  to wet one 's pants a bit during the day, but let's not lose perspective here. I know he would rather have a good laugh and risk a wee  accident than not!

Good luck with your decision . Hope this helps!

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User
Posted 05 Mar 2019 at 20:26
RP is the standard treatment for a cancer that’s well contained within the prostate. The majority of men here have probably gone down that route.

Regards,

Chris

User
Posted 05 Mar 2019 at 20:36

Thanks Chris, my friend has the same grade of cancer but he's being supported in his "active vigilance" but my team seem to be suggesting  either BT or RP rather than "active vigilance" and three monthly PSA checks. 

User
Posted 05 Mar 2019 at 21:09
Two things mitigate against Active Surveillance in your case:

1. You're young. If you were in your 80s rather than your 50s, it would be a different story, but at your age it really needs to be treated.

2. AS is generally not recommended for someone with Gleason 3+4 cancer, because of the "4" component of it being quite aggressive.

Of course there's no rush to be treated. Your long-term survival chances would probably be the same if you did nothing for a couple of years. But there seems no benefit to that unless there's some specific reason not to be treated at the moment.

All the best,

Chris

User
Posted 05 Mar 2019 at 21:19

Thanks Chris,

I'm keen to get treatment. What's your view on  Robotic Prostatectomy?

Chelsea and Westminster are offering me BT, RT or Robotic Prostatectomy

User
Posted 05 Mar 2019 at 21:31
It is a little unusual to be sent straight to oncology rather than back to urology for the results and then a referral to oncology if you want to explore radiotherapy options. In the circumstances it might be best not to set your heart on one particular treatment until you have actually seen a specialist and been given your full diagnosis.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Mar 2019 at 21:39

Thank you Lyn

I was given the full analysis and print out to take away from the Oncology nurse today. 3+4

I was pleased she could see me before my appointment with the oncologist and then on the same day the fellow who specialises in RP.

Your quite correct, it seems odd to me and if only I did go to the original urologist to get my results it would have made things so much less stressful. To have Oncology department on the front of the letter following my biopsy is no way informing someone they have cancer. 

User
Posted 05 Mar 2019 at 22:32

I agree with you that was a terrible way to find out your diagnosis. Sometimes They just don't think do they?

We had the situation where my husband had a letter to go in for the biopsy results two weeks after it had taken place.We were seen by a specialist Macmillan nurse ( my legs nearly buckled when she showed us into the room as I fully expected the consultant to be there with the bad news) only to find out they didn't actually have the biopsy results. She was embarrassed and tried her best to waffle through the next awkward 10 minutes. We were needless to say livid as we had gone prepared to find out one way or the other. 

We had to stew for another 10 days.

Best wishes with your appointment and read up as much as you can about the various treatment options in the meantime. It's never an easy decision to make.

Ann

User
Posted 05 Mar 2019 at 23:04

Hi Chris

I was the same age as you when I was diagnosed with 3+4 and low PSA. Originally I was offered active surveillance

but could not live with the thought of the cancer in my body and what it was doing. 

After consulting a couple of specialists and considering my age and general good health I chose to have a RP.

Things went well with the operation and my PSA at last reading was 0.01, there are obviously the well read side effects but its a choice we have to make.

Everyone is different and only you can make that decision. Talking from my experience I am glad I chose RP.

Best Wishes in whatever you decide 

Rich

Edited by member 05 Mar 2019 at 23:07  | Reason: Not specified

User
Posted 05 Mar 2019 at 23:29

My initial diagnosis was 4+3 and t2a poss t3, size13mm near apex edge.  I was offered AS with a template biopsy, RP, or RT with hormones.   It's tempting to try to avoid surgery but cutting it out has a few advantages such as getting a true diagnosis, not using any of your RT or hormone allowance, and getting a quick treatment and an answer on whether it was a good job, although with no guarantees.

I could have waited longer for robotic at another hospital but the improvement isn't worth it.

  I had no doubt surgery was what I wanted and discovered my Gleason was increased to 4+4, but stage t2a, negative margins and psa undetectable. No regrets.

Sometimes RT could be better though.

As said above don't pre-guess. But be prepared.  Especially in my opinion be ready to make up your mind and then be firm about your choice once made and get the ball moving. Regards Peter

 

Edited by member 05 Mar 2019 at 23:45  | Reason: Not specified

User
Posted 05 Mar 2019 at 23:38
It's the way of the world; the NHS is understaffed at the front line and the IT system is almost obsolete. John found out he had cancer when the appointment for a bone scan arrived before the appointment for the biopsy results. You deal with it and move on to actually getting rid of the cancer :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Mar 2019 at 03:26
I have a friend in his seventies who is G3+4=7 and who has been on active surveillance for around four years. His PSA is now rising, so that party is probably over.

If you opt for surgery, do make sure you go with a high volume surgeon with good outcomes. My own surgeon said he would not send a friend or family member to any surgeon who does less than a hundred prostatectomies per annum. He himself does 300-400. Practice makes perfect!

Best of luck.

Cheers, John.

User
Posted 08 Mar 2019 at 14:31

My husband is a little older than you , 57 and had the same scores . He had RP with nerve sparing on Jan 22nd this year .His PSA at 6 weeks is 0.04, he has erections, is dry over night, we have even begun to have regular intercourse, and experiences mild stress incontinence in the day until late afternoon when it becomes a lot worse . Every day is a bit better though. He is working full time and travels for work driving and flying long distances. He has had to adjust to stopping more often for a toilet break or getting seated nearer to loo on plane. He walks daily and is back to his work outs with weights in our cellar though is not doing the same level as pre- op. He is an optimist, we both are, but I think the stress incontinence gets him down, especially as he was so diligent with his pelvic floor exercises before op and even now. However, I have reminded him that many women, especially those like me who have delivered twins,  have some stress incontinence and wear a small pad daily. It's part of my daily routine, like it is his since his surgery, and he accepts that . I know it is not nice or particularly normal  to wet one 's pants a bit during the day, but let's not lose perspective here. I know he would rather have a good laugh and risk a wee  accident than not!

Good luck with your decision . Hope this helps!

User
Posted 08 Mar 2019 at 15:01

Hi I was diagnosed at 70 with PSA 2.19 Gleason 3+4=7 and was offered radical removal by the the first specialist but asked to speak to a Brachytherapy specialist for other options as one of my friends had good results from his Brachytherapy.

I had by Brachytherapy in September 2016 and was put onto yearly PSA tests as my PSA has dropped to 0.22 in January 2019.I am very happy with the operation and followup with no great problems so far.

John.

User
Posted 08 Mar 2019 at 17:01
Thank you so much everyone.

I'm looking forward to seeing the oncologist in ten days or so now.

Could anyone tell me why they still check the PSA levels after the prostate has been removed?

I would have though no prostate no Prostate specific antigen. But clearly not.

User
Posted 08 Mar 2019 at 18:45
They check it to see if the cancer has returned. Neither RP nor RT is guaranteed of success, and cancer cells that escape the surgery or radiation can start multiplying again, which will cause your PSA to start rising again.

Cheers,

Chris

User
Posted 08 Mar 2019 at 19:33

I personally have had good results with RARP.

Same age and gleason - i know we are all individual cases - but my specialist recommended surgery due to my age. Also, with some biopsy cores at 50% and near to the bladder i wanted the prostate removed.

30% of gleason scores are upgraded after pathology...something to think about. My PCA was found to be in both sides of the prostate after removal - biopsy only found PCA in one side. 

All the best with whatever decision you make. 

User
Posted 08 Mar 2019 at 20:06

Originally Posted by: Online Community Member


Could anyone tell me why they still check the PSA levels after the prostate has been removed?
I would have though no prostate no Prostate specific antigen. But clearly not.

 

Prostate specific antigen is a misnomer and not prostate specific; very small amounts are also generated in other parts of the body. Whichever treatment you choose, they will monitor the PSA for the rest of your life as the cancer could come back at any time ... generally it is said that if you get to 5 years without recurrence that is a good sign and 10 years is the threshold for 'full remission' although as said above my dad had recurrence 13 years post-op. 

When they monitor PSA post treatment, there are two significant marking points. After RP they are looking for your PSA to remain under 0.1 while after RT / brachy / cryotherapy they are looking for a PSA of 2.0 or below (because there is still a prostate). A recent experiment at our regional cancer centre showed that the average woman had a PSA of 0.06 although older research indicated that a woman has a PSA of around 0.02 or below unless she has breast cancer, is breast feeding or has had a recent orgasm. Breast milk contains measurable levels of PSA. 

Edited by member 08 Mar 2019 at 20:15  | Reason: Not specified

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

User
Posted 09 Mar 2019 at 08:34

Thank you everyone, I greatly appreciate your response. By asking very simply questions here it will help me refine and narrow down the questions I wish to put to the surgeon next week.

So here is a very simple question that immediately comes to mind re the Robotic Prostate surgery:

Cannot there be a targeted biopsy carried out beforehand to acertain how exactly contained the cancer is in my prostate? Yes,
I had a MRI analsis and a very detailed breakdown of the 26 cores that were taken, but is it not a procedure to carry out more targeted tests beforehand?

 

User
Posted 09 Mar 2019 at 09:21
I don't understand what you're asking, Chris. They've done a biopsy and know what type of cancer you have and where it is. Now they need to get rid of it, either by surgery (RP) or radiation (RT).

Best wishes,

Chris

User
Posted 09 Mar 2019 at 09:28

Like I have said, my question might appear silly but they are helping me prepair for more accurate questions later when I see the Oncologist. I am not a medically qualified. 

I ask this question as I hear that some men have had a RP to then find that the cancer has spread...well, it makes sense to me to that more detailed and targeted tests be taken before you have such a life changing operation. It might not make sense to you Chris, but it makes perfect sense to me. 

User
Posted 09 Mar 2019 at 10:42

Chris

Not a silly question but I  don't think we have the readily available and reliable technology to do what you are asking. In years to come if we are still removing prostates there will be minature microscopes capable of seeing cancer cells as the surgeon is operating. 

Thanks Chris

User
Posted 09 Mar 2019 at 11:12

Thanks Chris, that makes perfect sense to me. 

For the last week I have consistently held the view that if after my appointment with Dr **** I feel he is confident that I stand to have a good outcome, I will most likely proceed with him operating on me. That is IF he can guarantee me that he himself will operate. 

I feel confidant by what I have seen and read about the surgeon. If I was only able to have a lesser experienced surgeon I would lean more towards radiotherapy options. 

 

 

Edited by moderator 09 Mar 2019 at 12:32  | Reason: Not specified

User
Posted 09 Mar 2019 at 11:46
You need to edit your post - we are not allowed to name medics on here.

I am still not sure why you are seeing an oncologist to discuss surgery.

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

User
Posted 09 Mar 2019 at 11:50

OK thank you Lyn. 

I shall let you know when I know. 

User
Posted 09 Mar 2019 at 13:05

Originally Posted by: Online Community Member

I ask this question as I hear that some men have had a RP to then find that the cancer has spread...well, it makes sense to me to that more detailed and targeted tests be taken before you have such a life changing operation. It might not make sense to you Chris, but it makes perfect sense to me. 

Just to clarify, Chris - I didn't say that your question didn't make sense, but that I didn't understand what you were asking, which is a shortcoming on my part, not yours smile.

Best wishes,

Chris

 

User
Posted 09 Mar 2019 at 13:34

Thanks Chris. 

I have autism (high functioning autism) so it can be  difficult for me to process and respond to information at times.

I have a couple of more questions:

 

⚫ Could the prostatectomy make the cancer spread faster if it is not all caught? If this is a real possibility I would possibly lean towards RT

⚫ After a prostatectomy could I expect to be free of having to be so overly cautious about not having to drink too much water and always be near a toilet? It would be nice to think that in some aspect the operation might actually enhance my life alongside prolonging it. 

 

 

 

User
Posted 09 Mar 2019 at 15:52
Chris,

There is a tiny risk of any invasive procedure releasing cancer cells into the blood or lymph systems which could then spread elsewhere, but this has to be balanced against the enormously higher risk of allowing the cancer to grow untreated. There are no certainties, I'm afraid. Any cancer cells that do get into the bloodstream find themselves in a very hostile environment in which they're likely to be attacked by the body's immune system, so the chance of cancer spreading elsewhere via this route is tiny.

If you're having difficulty urinating due to enlargement of the prostate, an RP will probably make things better for you.

All the best,

Chris

User
Posted 09 Mar 2019 at 19:53

Chris

Unfortunately incontinence and erectile dysfunction and the two most common adverse effects of RP and also RT. Both adverse effects can vary in there severity. Some guys are dry from day one of catheter removal, others are not so lucky. Pelvic floor exercises may aid early continence recovery. Recovery from ED can take a couple of months or several years or never but there are  various solutions to the problem. If you have not already done so download the toolkit or at least have a look through the information provided on this site regarding different treatments and thier outcomes. 

Thanks Chris

User
Posted 12 Mar 2019 at 22:38

I am exactly in the same position as u and after studying an talking to people who have had the robotic prostatectomy I have decided to go with that surgery

 

User
Posted 13 Mar 2019 at 11:05

Thanks Hughie

Let me know how you get on with the whole process. 

I'm seeing the surgeon on Monday next and will come back here and let you know exactly what he said. 

Go well until then. 

Chris 

 
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