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Decision time on our future

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User
Posted 05 Feb 2018 at 14:16

Hi. I'm Gareth (50 yrs) and my wife is Lynette (44).

Having originally being diagnosed with Gleason 7 (4:3) by a locum pathologist my cancer has since been downgraded (3:3) by two other pathologists. There are still some Gleason 4 cells evident but the primary & secondary occurrences are both Gleason 3. All cancer is located in the right side of my prostate. I've been offered the choice of Prostatecomy or Radiotheraphy. The tumour is 11mm long and is relatively close to the outside edge of the prostate. It's now decision time.

My concerns are mainly based on the side effects of each treatment. These include and are not limited to Bowel & bladder issues and erectile dysfunction. My understanding of these may not be correct and I would welcome your feedback based on your own experiences.

As I understand it, bowel side effects are more common with RT, however this often short term, and not often common with RP. Bowel issues are more common long term with RP although sometimes short term but usually short term with RT.

As for as ED goes, I understand that this is certainty post RP and often it's permanent or long term. However post RT then I could expect to suffer less with ED in the short-medium term, although this treatment would accelerate the likelihood of ED in the longer term.

Please can anyone correct me or offer any guidance to us please.

Thanks in advance.

User
Posted 05 Feb 2018 at 17:20

Hi Gareth,

The first thing you need to do is a careful research of the treatment options. As Sandra says, a good place to start is the 'Toolkit'.

It's then a good idea to list the pros and cons of the treatments and decide whether you wish to have one soon or defer treatment and potential adverse side effects and just be monitored for a time called AS for Active surveillance. In doing this you have to accept there is a small risk that your cancer has advanced faster and or more aggressively than monitoring shows. As is appears is the case your PCa is contained and treatment at this stage would provide the best chance of cure.

I assume that by radiotherapy it is meant External Beam radiation. The two forms of Brachytherapy, low and high dose are also forms of radiation and appear to be gaining ground on External Beam. For younger men such as yourself one of the forms of surgery is most frequently administered, thereby avoiding potential long term secondary cancers that can be initiated by RT. Surgery can in need be followed by RT in need but it is very rare to do it the other way round because it is much more difficult and the risk of incontinence is very high. There are pros and cons for the various types of surgery but the most important consideration is how experienced and good the surgeon is.

Barry
User
Posted 05 Feb 2018 at 20:51

One thing to clarify before you make a final decision is whether or not you would be offered nerve sparing surgery. You say the tumour is close to the edge which might mean the nerves have to go - this would make a significant difference to your chance of recovering erections.

And you correctly say that ED may only develop years later with RT but you also need to factor in possible hormone therapy. If your RT would be coupled with HT, you may be able to get erections but you would have no libido. One of the best descriptions I ever saw on here for HT related loss of libido was that looking at his wife was like looking at a lump of concrete.

Edited by member 05 Feb 2018 at 20:56  | Reason: Not specified

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

User
Posted 06 Feb 2018 at 10:49

Thanks for sharing your story Chris. It's great to have a reply based on experience that I can perhaps relate to. it keeps everything in perspective. It's very difficult to get any 'black & white' with PCa isn't it? I guess none of us can truly be confident about what is waiting for us around the corner. I hope that things go well for with your future treatment. A positive mind will get us all through whatever lays ahead. I appreciate that my journey is only just starting and that people such as you can guide me through it.

I'll keep in touch with everyone and update you with my progress. Thanks again.

User
Posted 06 Feb 2018 at 23:12

Tony,

Like many aspects of PCa, radio resistance of cancer cells is very complicated and beyond my knowledge. For example, it depends not only on the type of cell to start with but the type of radiation it is subjected to, the frequency duration and amount of radiation and the ability of cancer cells to repair damage and mutate. As a layman, it is not an area that I have studied but I first became aware of it from background notes for the study I participated in Germany in 2008 which comprised Photon IMRT and Carbon Ion boost. It stated "Prostate cancer is relatively radioresistant to conventional photon RT.........." 'Relatively' by comparison with carbon ions which have a much greater RBE (Relative Biological Effectiveness) and cause more double breaks in the DNA. After RT some surviving cancer cells can gain additional heterogeneity. Here is a link that refers to the way cancer cells can respond to RT. :- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4429645/


I did read somewhere that small cell PCa was one of the cancers that responded less well to RT but I am not sure whether this is the case.

Edited by member 06 Feb 2018 at 23:21  | Reason: Not specified

Barry
User
Posted 08 Feb 2018 at 08:58

Well good luck Taffy Tuck.

You've done your research and made your choice. It's all any of us can do.

I wish you well with the operation.

Once you have a definite date please come back and let us know, or if anything turns up out of the "teaching event" today that you feel needs any clarification from us here feel free to ask, although I think you'll be well served at the meeting.

Good luck young man.

We can't control the winds - but we can adjust our sails
User
Posted 08 Feb 2018 at 12:43
Good that you’ve made your decision. I hope all goes well for you. Best wishes, Ian.

Ido4

User
Posted 08 Feb 2018 at 14:09

I Know that having made a treatment decision can feel that at least it has lightened part of the heavy load you are burdened with after PCa diagnosis.

Hope all goes well for you.

Barry
User
Posted 12 Feb 2018 at 13:30

Thank you everyone

Barry you are quite right. Making a decision has lifted a great weight. I was very lucky to have my pre-op assessment the very next day. It's now given me a 'vacuum' in which to continue a normal life for the next few weeks.

That said, it was lifted the weight from Lynette's mind other than her knowing that I'm in a better place now. You ladies are quite remarkable, the way that you care for us and try to keep your worries & fears hidden. Well it's not good enough! You can't keep stuff from us. It's a two-way street and we're also here for you too. It's the 'couples disease' and you need looking after too.

I'll keep you all up to date as time progresses. I'm not expecting to hear anything else for a few weeks yet. Meanwhile, I'll be back on this forum as much as I can between now and then. It's time I started sharing my experiences so far with others who are in need of support.

Thanks again for all of your help and advise so far.

Gareth

p.s. I put out a post on Facebook the other day to raise awareness of this sneaky little disease. If you'd like to also share it, the link is here
http://bit.ly/2Em09ed

User
Posted 17 Feb 2018 at 23:21
A bit of both perhaps
User
Posted 04 Oct 2020 at 17:07
Great update Taffy - it will be so reassuring for newly diagnosed members to see that there can be a happy ending.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 05 Feb 2018 at 16:03

Hello Gareth and Lynette and welcome to the site.

Was it just those two treatments offered to you.

Was Active Surveillance not mentioned (or perhaps you prefer to just get rid of the cancer - some men cannot live comfortably with the thought of PC inside them)

What about Brachytherapy? No mention of that either?

With all treatments there is the potential for side effects and it would seem from the men on this site that you could get three or four men, same or similar Gleasons, having the same treatment, and they would all have different side effects, so there is no cut and dried "This will give you this or that will cause that".

Download the Toolkit from publications on this website (or approach one of the nurses and ask for hard copies)

The toolkit is a mine of information about the various treatments, how they work and their possible side effects.

You are both young, so you need to research and make sure that the treatment you choose is the right one for you long term.

Unless you have been told that the cancer is the aggressive kind, I would advocate - make haste slowly.

Hopefully you'll get other responses to your questions

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 05 Feb 2018 at 17:20

Hi Gareth,

The first thing you need to do is a careful research of the treatment options. As Sandra says, a good place to start is the 'Toolkit'.

It's then a good idea to list the pros and cons of the treatments and decide whether you wish to have one soon or defer treatment and potential adverse side effects and just be monitored for a time called AS for Active surveillance. In doing this you have to accept there is a small risk that your cancer has advanced faster and or more aggressively than monitoring shows. As is appears is the case your PCa is contained and treatment at this stage would provide the best chance of cure.

I assume that by radiotherapy it is meant External Beam radiation. The two forms of Brachytherapy, low and high dose are also forms of radiation and appear to be gaining ground on External Beam. For younger men such as yourself one of the forms of surgery is most frequently administered, thereby avoiding potential long term secondary cancers that can be initiated by RT. Surgery can in need be followed by RT in need but it is very rare to do it the other way round because it is much more difficult and the risk of incontinence is very high. There are pros and cons for the various types of surgery but the most important consideration is how experienced and good the surgeon is.

Barry
User
Posted 05 Feb 2018 at 20:17
Hi Gareth I have been on Active Surveillance now for nearly 2 years , last biopsies nearly a year ago , Geason 6 in both sides of Prostate, Urologist still recommends Surveillance and regular PSA tests , latest one today, so waiting on results ,probably Friday. It would appear that it is recommended that Gleason 6 follows the route of Active Surveillance in a lot of cases. But I can understand why some men feel they want to get rid of any cancer that invades their body. Chatting with one of the specialist nurses on the site and downloading the toolkit can give very useful advice. There are a number of choices, and finding the right one for your particular case is the issue. The more informed choices you have the better equipped you will be to tackle this problem head on . Best of luck.

Keithyboy

User
Posted 05 Feb 2018 at 20:51

One thing to clarify before you make a final decision is whether or not you would be offered nerve sparing surgery. You say the tumour is close to the edge which might mean the nerves have to go - this would make a significant difference to your chance of recovering erections.

And you correctly say that ED may only develop years later with RT but you also need to factor in possible hormone therapy. If your RT would be coupled with HT, you may be able to get erections but you would have no libido. One of the best descriptions I ever saw on here for HT related loss of libido was that looking at his wife was like looking at a lump of concrete.

Edited by member 05 Feb 2018 at 20:56  | Reason: Not specified

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

User
Posted 06 Feb 2018 at 00:27
Hi Sandra

Thanks for your reply. Active surveillance had not been offered as an option to me. When I say RT it also includes brachytherapy as an option but the radiologist told us that external beam had progressed incredibly whilst brachytherapy had not changed much in the last 10 years. He also told me that if he me, in my condition and at my age; knowing what he does now with all of the knowledge that he's accumulated, he would be looking to have surgery!

When we say infront of the surgeon and asked him his advise, based on the same criteria, he also concurred with the radiologist.

It helped somewhat but still left us with a headache as I, at the time, was leaning towards RT.

User
Posted 06 Feb 2018 at 00:29
Thanks Barry, that's great advice. Thanks also to your and to Sandra for highlighting the Toolkit. I'll take a look at that later.
User
Posted 06 Feb 2018 at 00:34
Hi Keith

I believe that due to the presence of Gleason 4 cells, albeit less than originally believe, they steered away from recommending AS.

If I'm honest, I'm concerned that I was originally 4:3 and it's now been downgraded to 3:3. What did the first pathologist see that they other two didn't?

I think that is like rid of it rather than living with it.

Thanks for sharing your story though

User
Posted 06 Feb 2018 at 00:38
Hi Lyn.

The surgeon examined me again last week and had assured me that nerves can be spared on the left side. However he can only reassure me that he'll do all possible to share them on the right side. He'll do all possible but cannot provide any guarantees.

Thanks for taking time to reply though. As always you give excellent information and advice.

User
Posted 06 Feb 2018 at 07:29

Hello click my picture and read my profile. I was 48 at surgery and utterly terrified. I was told both bundles would be saved but I believe some bits were removed at surgery. Incontinence these days seems rarer. I was dry almost immediately. ED is normally a massive battle except for the very very few , and is something you very proactively have to challenge to get recovery. Two and a half years on I am able to have normal sex anytime but only through daily Cialis and a soft penis ring. It’s hard to get to this stage. But if this cancer is all gone and you get to where I am then it’s not a bad place to be at all. Sadly my cancer had already spread and further treatment awaits which will turn things upside down again. I honestly don’t know what the best choice is though. Nobody does. Best wishes with whatever you do choose and please keep in touch

User
Posted 06 Feb 2018 at 10:49

Thanks for sharing your story Chris. It's great to have a reply based on experience that I can perhaps relate to. it keeps everything in perspective. It's very difficult to get any 'black & white' with PCa isn't it? I guess none of us can truly be confident about what is waiting for us around the corner. I hope that things go well for with your future treatment. A positive mind will get us all through whatever lays ahead. I appreciate that my journey is only just starting and that people such as you can guide me through it.

I'll keep in touch with everyone and update you with my progress. Thanks again.

User
Posted 06 Feb 2018 at 17:52

Hi Gareth - I was in a similar situation to you a year ago and after much deliberation went for Hormone therapy and external beam Radiotherapy in Cardiff. I completed this a month ago and all has been fine on my journey. Everyone is different and has varying experiences with treatment so we can only really talk from personal experience.

I can not recommend radiotherapy over surgery - this is just my experience. Whichever way you go good luck and your statement "A positive mind will get us all through whatever lays ahead" is a great way to think.

With hormone treatment I had zero libido after about 3/4 weeks and that lasted throughout the 6 month course. However when I stopped the hormone treatment it only took about 2 months for libido to return to normal. I also had hot flushes at night which interrupted my sleep. The Radiotherapy gave me awful cystisis which again interrupted my sleep.

At the risk of tempting fate or seeing through rose tinted glasses, one month after treatment has been completed I have no problems with incontinence (bowel or bladder) or erections and my libido has returned. My orgasms are pretty much similar to pre treatment - I am more or less dry on orgasm - although some ejaculate does still drip out later - but to be honest my wife and I have found this much less of an issue than others have - in fact it still feels like I'm ejaculating on orgasm even though when we check nothing has come out. I still have a slight element of cystisis but this is gradually getting better as the bladder recovers. I know other people have had much worse experiences and complications but I insist on being positive about the future and my journey has been good so far.

I would also recommend getting the toolkit and also learn about how the different treatments actually work. I thought that radiotherapy zapped the cancer like a ray gun and just killed the cells but I found out its much more complicated.

There may be others more qualified than me on this site but as I understand it Radiotherapy works like this if it is to be successful. Cells in the body including cancer cells have a lifespan and grow through reproduction. Radiotherapy effects the DNA in the cancer cells and stops them being able to reproduce so that when a cancer cell naturally dies it hasnt been able to reproduce itself. This is one reason why radiotherapy is taken over a long period like a month. Cancer cells hit by radiotherapy at the right phase in their life cannot recover the ability to reproduce.  Eventually they die without having reproduced and are reabsorbed in constituent form.  The radiotherapy also damages good non-cancer cells - however, unlike cancer cells some good cells may recover the ability to reproduce and heal.

Hope this helps

Tony

User
Posted 06 Feb 2018 at 20:22

Pretty close Tony although with some kinds of PCa the cancer cells can be radio resistant and live to fight on after RT which could become a problem even years later.

A couple of links Gareth may find interesting. The first relates to Surgery and RT compared following a study in Sweden.
The second which in my view is a very good lecture on radiation and robotic and open surgery, although it is now rather dated.

https://www.youtube.com/watch?v=nqgF-LIPJwA

https://www.youtube.com/watch?v=c6oLwxcneaY

Unfortunately, there is quite a variance between various studies so I would not take any one as being absolutely correct. One also has to remember that a particular man may do better or worse than the average of results found for men within studies. Also, some show there is little difference of mortality between surgery and radiation, although others show the latter is worse.

 

Edited by member 06 Feb 2018 at 21:06  | Reason: Not specified

Barry
User
Posted 06 Feb 2018 at 20:46

Cheers Barry - I didnt know about radio resistant PCa cells -  is that quite common ?

Tony

User
Posted 06 Feb 2018 at 23:12

Tony,

Like many aspects of PCa, radio resistance of cancer cells is very complicated and beyond my knowledge. For example, it depends not only on the type of cell to start with but the type of radiation it is subjected to, the frequency duration and amount of radiation and the ability of cancer cells to repair damage and mutate. As a layman, it is not an area that I have studied but I first became aware of it from background notes for the study I participated in Germany in 2008 which comprised Photon IMRT and Carbon Ion boost. It stated "Prostate cancer is relatively radioresistant to conventional photon RT.........." 'Relatively' by comparison with carbon ions which have a much greater RBE (Relative Biological Effectiveness) and cause more double breaks in the DNA. After RT some surviving cancer cells can gain additional heterogeneity. Here is a link that refers to the way cancer cells can respond to RT. :- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4429645/


I did read somewhere that small cell PCa was one of the cancers that responded less well to RT but I am not sure whether this is the case.

Edited by member 06 Feb 2018 at 23:21  | Reason: Not specified

Barry
User
Posted 07 Feb 2018 at 09:03
I had intraductal cancer in my Prostate in addition to adenocarcinoma. Apparently the intraductal cancer does not respond well to radiotherapy. So despite my cancer recurring after prostatectomy, the surgery was still the correct decision as the intraductal cancer would not have been dealt with by radiotherapy.

Ido4

User
Posted 07 Feb 2018 at 12:23

Thanks Barry - interesting article which adds a great deal to my knowledge of the workings of Radiotherapy. My basic bullet point description was just an overview really - I would hope that the oncologist would make the detailed decisions based on cancer cell biopsy and individuals needs as they see it.

Tony

User
Posted 08 Feb 2018 at 08:13
Yesterday I made a decision to opt for robotic prostatectomy as treatment for my Pca. This was after 4 weeks of careful consideration and after diligently looking into each of the options available. To be honest, I need the ball to begin rolling again and look forward to the next chapter - getting this disease out of my body

Thank you to everyone who gave me advise. I'll keep you updated on my progress. Today though I have a 'teaching event' at the Heath in Cardiff where I'm to learn everything that I need to know about the lead up to the op, what happens during the op, post op and the aftercare. I then have my pre-op assessment for blood pressure, ECG and done form filling. Then an approx 6 week wait.

User
Posted 08 Feb 2018 at 08:58

Well good luck Taffy Tuck.

You've done your research and made your choice. It's all any of us can do.

I wish you well with the operation.

Once you have a definite date please come back and let us know, or if anything turns up out of the "teaching event" today that you feel needs any clarification from us here feel free to ask, although I think you'll be well served at the meeting.

Good luck young man.

We can't control the winds - but we can adjust our sails
User
Posted 08 Feb 2018 at 12:43
Good that you’ve made your decision. I hope all goes well for you. Best wishes, Ian.

Ido4

User
Posted 08 Feb 2018 at 12:48

Good man. You can get through this with belief and guidance and support. Tonnes of it here ok

User
Posted 08 Feb 2018 at 14:09

I Know that having made a treatment decision can feel that at least it has lightened part of the heavy load you are burdened with after PCa diagnosis.

Hope all goes well for you.

Barry
User
Posted 12 Feb 2018 at 13:30

Thank you everyone

Barry you are quite right. Making a decision has lifted a great weight. I was very lucky to have my pre-op assessment the very next day. It's now given me a 'vacuum' in which to continue a normal life for the next few weeks.

That said, it was lifted the weight from Lynette's mind other than her knowing that I'm in a better place now. You ladies are quite remarkable, the way that you care for us and try to keep your worries & fears hidden. Well it's not good enough! You can't keep stuff from us. It's a two-way street and we're also here for you too. It's the 'couples disease' and you need looking after too.

I'll keep you all up to date as time progresses. I'm not expecting to hear anything else for a few weeks yet. Meanwhile, I'll be back on this forum as much as I can between now and then. It's time I started sharing my experiences so far with others who are in need of support.

Thanks again for all of your help and advise so far.

Gareth

p.s. I put out a post on Facebook the other day to raise awareness of this sneaky little disease. If you'd like to also share it, the link is here
http://bit.ly/2Em09ed

User
Posted 12 Feb 2018 at 15:39

Sometimes Taffy it's B*ood* hard work looking after our men believe me, especially the strong silent types!!

But.... We wear 'em down in the end!! (or wear them out,not sure which it is really)

We can't control the winds - but we can adjust our sails
User
Posted 17 Feb 2018 at 23:21
A bit of both perhaps
User
Posted 18 Feb 2018 at 11:08
Hi Gareth. If you want a really positive thread to read ( and humourous ) I would recommend reading all of Steve's posts from last year. He really does give a great insight into the " process" and feelings of undergoing a Prostatectomy together with a great outcome. You will find him under Steve-Rutland on the members list.

Best regards

Ann

User
Posted 04 Oct 2020 at 10:10

Hi All

Despite all best intentions, life build up momentum and somethings get left by the wayside.

Despite having the most amazing support from you all on this site, I simply forgot to come back and update you all. I've now done this by updating my bio.

Thanks once again, we're eternally grateful x

User
Posted 04 Oct 2020 at 17:07
Great update Taffy - it will be so reassuring for newly diagnosed members to see that there can be a happy ending.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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