Locally Advanced Prostate Cancer T3 (N1, M0) Advise

User

Posted 03 Mar 2022 at 14:42

Hi Every One,

My name is Grigor Watt ( Age 55) i was diagnosed with T3 (N1, M0) (Gleason score 4+5= 9 ) prostate cancer on 30th December 2021 initially PSA 88.6 which has now dropped to 9.2 after 6 weeks on hormone injections.

It would be great if i could get everyone's views on the following options/discussions i have had with my Urologist.

He has recommended the following treatments as i am young and fit enough - Radiotherapy ( Approx. 4 weeks treatment with hormone treatment for up to 3 years ) or Prostatectomy Surgery to remove prostate, lymph node and tissue around prostate.

I was veering down the road of surgery till my last discussion with urologist who implied/mentioned the higher risk of the surgery ( as more complicated than just prostate removal ) and potentially will still have to have radiotherapy if the cancer has not been totally removed. ( and why would i put my self through 2 major procedures as seemingly both will have the same outcome.) ( my initial thoughts is if i had the surgery which didn't get all the cancer i then can get radiotherapy ??)

I have a appointment with the surgeon to discuss the Prostatectomy ( They will also asses if the surgery is the way forward/implications/success etc )( if they agree to carry out the surgery) and i have to ask them what the benefits the surgery is over the Radiotherapy with all the risks involved.

All your thoughts/input/advise would be greatly appreciated.

Thanks

User

Posted 03 Mar 2022 at 21:24

Originally Posted by: Online Community Member

my initial thoughts is if I had the surgery which didn't get all the cancer i then can get radiotherapy ??

I think that is a common thought but it may be flawed - if the radical (first) treatment fails, your chance of full remission is seriously reduced anyway, regardless of whether you have RP or RT first. A better way to approach the decision might be:

- which radical treatment gives me the best chance of remission? (your urologist or the MDT may already have put your stats into a nomogram to calculate this for you)

- can I live with the known side effects and potential side effects?

- if not, which is the next best treatment for me in terms of % chance of remission and has side effects that I think I can live with?

Some men end up choosing a treatment with lower risk of side effects, knowing that in all likelihood they will have to have more treatment in the future. Others will go all in for the brutal side effects because there is a really high chance of it being successful.

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

User

Posted 03 Mar 2022 at 21:53

This is the treatment choice that most men have to make with a similar diagnosis and without other contraindications. You therefore need to understand the pros and cons of both treatments before making your individual decision. A good place to start is the 'Tool Kit', which you can download or order a free copy of it from this Charity. It not only provides information about the disease but gives unbiased details of treatments. https://shop.prostatecanceruk.org//our-publications/all-publications/tool-kit?limit=100

Edited by member 03 Mar 2022 at 21:56 | Reason: to highlight link

Barry

User

Posted 04 Mar 2022 at 00:18

Hi Grigor,

Very similar to my husbands details, although his psa was lower. He had surgery knowing he was going to need radiotherapy afterwards. After surgery his tumour was downgraded to T2, they took 14 lymph nodes (1 was infected) so they said lymphoedema shouldn't be a problem. We also have now been told there is a slight chance further treatment won’t be needed…it’s just a waiting game now. More info on my profile if interested.

Elaine

User

Posted 12 Mar 2022 at 10:16

Thanks for the reply and your comments, if okay with you if i have any further queries/info i will contact you.

Its all a bit confusing at the moment i have a further scan and meeting with the surgeon to discuss that route then ill have to make the decision of radiotherapy of surgery ( with potential RT )

Cheers

Grigor

User

Posted 06 Apr 2022 at 10:08

LynEyre, Good advice. I also would like to get information about potential RT after surgery looks like. It was explained to me that one of the benefits of the surgery is that in the longer term the source for further spread is removed which leads to better outcomes. And this was recommended by the MDT given the results of all the various tests. But as you say, there are life changing side effects and both options may be viable.

Sounds like progress Grigor. My surgery is pencilled in for the end of April and I have not been put on HT prior to that. Good luck with your various scans and meetings so that you can come to a decision.

User

Posted 07 Apr 2022 at 14:56

Hi Grigor/Jellies

Sorry to hear of your plights...

I was diagnosed around Christmas time with similar stats although a lower psa.

Psa 22.2 T3a N0 Gleason 4+5.

I have opted for EBRT with HT. (Zoladex for last 3 months)

Just got my latest psa yesterday which is 0.4.

Had Fiducial markers last week and planning CT this Tuesday.

Expect RT to start early May because of Easter etc.

Will keep you posted. ...

Blessings

Snowwy

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User

Posted 03 Mar 2022 at 21:24

Originally Posted by: Online Community Member

my initial thoughts is if I had the surgery which didn't get all the cancer i then can get radiotherapy ??

- which radical treatment gives me the best chance of remission? (your urologist or the MDT may already have put your stats into a nomogram to calculate this for you)

- can I live with the known side effects and potential side effects?

- if not, which is the next best treatment for me in terms of % chance of remission and has side effects that I think I can live with?

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

User

Posted 03 Mar 2022 at 21:26

You also need to consider the very real risk of lymphodema and how that might impact on your quality of life ... although you are not certain to develop that problem.

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

User

Posted 03 Mar 2022 at 21:53

Edited by member 03 Mar 2022 at 21:56 | Reason: to highlight link

Barry

User

Posted 04 Mar 2022 at 00:18

Hi Grigor,

Elaine

User

Posted 12 Mar 2022 at 10:16

Thanks for the reply and your comments, if okay with you if i have any further queries/info i will contact you.

Its all a bit confusing at the moment i have a further scan and meeting with the surgeon to discuss that route then ill have to make the decision of radiotherapy of surgery ( with potential RT )

Cheers

Grigor

User

Posted 15 Mar 2022 at 09:46

Morning,

Just a quick couple of questions if that's okay

I've been on hormone injections and prostate tablets to reduce prostate size since end of december.

I've been doing diy projects and am finding my bones are aching especially knuckles, wrists and one shoulder which i hurt earlier and in the morning joints feel stiff. - Is this one of the normal side effects.

Also i am still finding i am getting up 3/4 times a night to pee like before i started the HT etc - Again Is this one of the normal side effects. ( Could it be to do with to much caffeine intake ?? )

Your help is much appreciated

Cheers

Grigor

User

Posted 04 Apr 2022 at 12:08

Hi Grigor

I think I have a similar situation as yourself.

Age 50, PSA 76, Gleeson 4+3, Bone scan and CT scan clear. Am also scheduled for PSMA scan. Diagnosed last week.

Urologist recommended non-nerve sparing surgery (prostate plus lymph nodes etc.). He also said further treatment would likely be necessary.

Right now my thinking is to proceed with the surgery and then see what else is needed after that. At a relatively young age for PC I want to be as aggressive as possible now to maximise the chances of longer terms survival and allow for other treatment options.

Still getting my head around it all and have more questions for my consultant about the follow up treatment. Good luck with your decision and outcome.

User

Posted 04 Apr 2022 at 19:13

Originally Posted by: Online Community Member

Urologist recommended non-nerve sparing surgery (prostate plus lymph nodes etc.). He also said further treatment would likely be necessary.

Still getting my head around it all and have more questions for my consultant about the follow up treatment. Good luck with your decision and outcome.

Jellies, have you seen an oncologist yet? Don't make a decision until you have seen one! My question would be what is the point of going through non nerve-sparing surgery with all its known and potential side effects if it is already known that it is unlikely to be successful and you are going to have to go through the side effects of ART / HT anyway? In most cases, a man in your situation will do better going straight to RT/HT possibly with brachytherapy boost. Only by meeting an oncologist and a urologist and talking it through will you have all the data needed to make an informed decision.

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

User

Posted 04 Apr 2022 at 20:09

Hi Jellies

Thanks for the contacting me

Really sorry to here you have been diagnosed with the same PC as me.( It takes a while to get your head around the situation and information )

I have had a further more detailed CT/PET scan so that i can have a meeting with surgeon to discuss a possible operation to remove the prostate, lymph nodes etc.

And from there i will have to make the decision of surgery ( with possible radiotherapy afterwards ) or Radiotherapy (4/5 weeks)

I am the same as you trying to give myself as much options as possible.

I have been on hormone therapy since the beginning of January.

Before HT my PSA was 88 and after 1 month it dropped to 9.2.

I had another blood test today so hopefully dropped further ( i will let you know )

All the best for moving forward and i will keep in touch with updates etc

Cheers

Grigor

User

Posted 05 Apr 2022 at 13:43

Afternoon,

I had a further blood test yesterday and my PSA came back at 2.6 which is very reassuring.

I assume this means that the HT is doing its job and stopping the cancer growing ??

Any input would be much appreciated

Cheers

Grigor

User

Posted 05 Apr 2022 at 14:41

Sounds great mate. It’s such a relief isn’t it ? And yes it basically means the cancer is subdued and being held at bay. My psa has been reacting very nicely over 15 months from 990+ down to 1.3. Still waiting on 2 scan results though. Good luck

User

Posted 06 Apr 2022 at 10:08

User

Posted 06 Apr 2022 at 10:37

Thanks Jellies,

That's good that your booked in for your surgery so quickly, hopefully if i go down that road i will have the same short wait.

All the best moving forward.

Cheers

Grigor

User

Posted 07 Apr 2022 at 14:56

Hi Grigor/Jellies

Sorry to hear of your plights...

I was diagnosed around Christmas time with similar stats although a lower psa.

Psa 22.2 T3a N0 Gleason 4+5.

I have opted for EBRT with HT. (Zoladex for last 3 months)

Just got my latest psa yesterday which is 0.4.

Had Fiducial markers last week and planning CT this Tuesday.

Expect RT to start early May because of Easter etc.

Will keep you posted. ...

Blessings

Snowwy

User

Posted 08 Apr 2022 at 09:08

Morning Snowwy,

Thanks for the post and sorry to here about your diagnosis.
That's good your plan is in place and your PSA is down at 0.4
Keep strong and yes keep me posted.
Cheers
Grigor

User

Posted 13 Apr 2022 at 10:03

Morning All,

Just had a discussion with my urologist yesterday where she confirmed that the surgeon team had reviewed my case and decided that surgery was not an option as the several lymph nodes were spread out within the pelvic area and it was their conclusion that the surgery would not be successful ( Not Curable ) and higher risk of side effects.

I now have an appointment with the radiologist to discuss the Radiotherapy route and he will explain the way forward.

My diagnosis is T3 (N1, M0) (Gleason score 4+5= 9 ) Several lymph nodes within pelvic area ( spread out ) and PSA now 2.6.

If theirs anybody out there with a similar journey would it be possible to share your storey going down the same route.

thanks

Grigor

User

Posted 13 Apr 2022 at 10:46

Morning Grigor,

Sorry to hear your options are limited...

Not in the same predicament as you but I am going down the RT route as we speak.

Had my planning CT scan yesterday with the famous tattoos!
My RT starts 5th May, 37 treatments (fractions) and then continued HT for 2 years.

There may be others on the forum who have a better understanding of where you are and can comment with more insight.

Stay positive!

Every blessing,

Snowwy

User

Posted 13 Apr 2022 at 11:53

Hi Grigor. Sorry that your options have been reduced. On the other hand you can now focus on the RT/HT route

I was diagnosed Jan 2020. T3a in the end (N0 M0). Evidence from MRI that PCa was on the very edge of the prostate. Surgery June 2020. Positive margins and post op PSA 0.2, which rose to 0.5 after 3 months.

Started HT early Dec 2020, then SRT from late Dec through Jan 2021. Obviously my prostate had been removed prior to this treatment and I don't know if that makes a difference. But I have found the treatment path pretty easy. Don't get me wrong, my bladder and bowel have been affected a bit, with much more frequency. I have also had lots of bother with hot flushes and fatigue, but in the grand scheme of things it has been okay.

Take care and wishing you the very best.

Jim 🤗

User

Posted 14 Apr 2022 at 01:26

Originally Posted by: Online Community Member

My diagnosis isT3 (N1, M0) (Gleason score 4 5= 9 ) Several lymph nodes within pelvic area ( spread out ) and PSA now 2.6.

Similar diagnosis to mine, though I'm 75 now. The question I'd like to have an answer to in your position is, will the RT be able to include the lymph nodes? If not, what do your Drs suggest?

On Zoladex, I've had problems with sleep [needs careful management], minor hot flushes but no probs with bowel or bladder, other than increased frequency of urination.

Jules

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