Decisions decisions!

User

Posted 26 Feb 2015 at 11:27

Hi all. Well I've just arrived at a place I didn't really want to be. Following my participation in the PROMIS trial I was diagnosed 3+4. It seemed to be an easy decision (for me at least), and surgery was the obvious choice. However, after the multi-disciplinary team had looked at my results more closely, they decided (or were not able to decided) that my PCa was borderline T3 or early T3. My options are now surgery with the "possibility" of radiotherapy after, or radiotherapy alone. Seeing Oncologist next to discuss radiotherapy option further. Anyone else had to make this decision?

User

Posted 26 Feb 2015 at 18:42

Hi Keith,

It's a blow when they upgrade figures. My staging was originally T2a but was upgraded to T3A following MRI. Surgeon told me he would remove Prostate if I wished but doubted he could remove all cancer so suggested I have RT instead which I did. Now it happens that a friend of mine was in a similar position. He opted for surgery and perhaps unusually had rather a bad time with it including losing quite a lot of blood and needing a transfusion. His PSA continued to increase and he was put on HT followed by RT. About 8 years on his PSA is stable and very low. With the benefit of hindsight he wishes he had skipped surgery and just had HT/RT but would his PSA have been so low and his outcome been so good if this had been the case? HT/RT seemed for several years to keep my PSA low and to have eradicated the cancer in my prostate. However, I still have a prostate and cancer has started to grow in it again. Should I have had surgery followed by HT/RT for maybe longer lasting success albeit with the risk of more side effects like my friend? I now think perhaps yes but that is with the benefit of hindsight and several years on. If asked the question say 2 years after RT when results looked good I would have said No. Of course, every man has to make a decision at the time and without the benefit of a crystal ball!

Barry

User

Posted 26 Feb 2015 at 19:36

Hi Keith,

I have not had to make the decision you are looking at, sorry.

And I am no expert, so take what I say with a pinch.

If your original choice was surgery, and your secondary option is surgery backed up with a support treatment then not a lot seems to have changed for you? The only difference is that surgery might not get everything, but that applies to all of us who opt for the knife, or the Robot. And we might all need a second zap at the beast later.

I was told when I had to choose that surgery would only be the first option, and if I opted for any other intervention first then surgery was off the table thereon in. Apparently, maybe recently, maybe then as well, some surgeons will look at surgery as a secondary option?

You will know more after your next meeting.

dave

User

Posted 26 Feb 2015 at 19:55

I opted for surgery, but it was explained before I made my final decision that there was always a chance that some PCa cells may be 'bouncing around' microscopically outside of the prostate and so more treatment ( RT ) may be needed.

Having said that my clinical staging before surgery was T2b......later uprated post surgery to pT2c...

I've been fortunate up to now as no further treatment has been required to date... had I been staged at T3 before surgery I would still have taken the same route as I just wanted my prostate out.

I appreciate that not everyone thinks the way I do, it's very much an individual decision at the end of the day.

Wishing you all the best whichever route you decide on.

Luther

Edited by member 26 Feb 2015 at 19:55 | Reason: Not specified

User

Posted 26 Feb 2015 at 22:01

Keith

I was gleeson 4+3 T3a. I had the choice of robotic surgery or RT, like many, rightly or wrongly I was swayed by the surgery with the option of RT if PCa returned. Like Dave it was suggested that surgery after RT unlikely. I looked at a few options but never saw an oncologist, I had confidence in my surgeon and despite a few issues, 10 months post op life is almost back to normal PSA 0.03 with the thought that RT is still an option should it be needed.

Thanks Chris

User

Posted 26 Feb 2015 at 22:02

John's view is that the side effects of surgery have been pretty devastating and if he had known that he would end up with salvage RT/HT he could have saved himself a lot of angst. There again, hindsight is a wonderful thing.

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

User

Posted 01 Mar 2015 at 20:47

Thanks guys for your thoughts and experiences. I'll let you know how my visit goes and if and how it effected my decision. Thanks again.
Keith

User

Posted 02 Mar 2015 at 16:34

Originally Posted by: Online Community Member

Hi Lyn, is there any guarantee that he John not had an operation first, that RT/HT alone would have done any better? Not to do with side effects, but on long term outcome or prognosis?

Edited to add, that I thought that my side effects were bad at the time, especially with my extended stay in hospital, the lack of continence, the issue with the catheter, loss of ED for several months. The depression. Although, I now know that a lot of that was down to circumstances other than the treatment.

dave

Edited by member 02 Mar 2015 at 16:40 | Reason: Not specified

User

Posted 16 Mar 2015 at 10:47

I have to say I'm getting a bit impatient! When my surgeon encouraged me to talk with Oncologist to better understand radio therapy I thought it would happen quite quickly. Wrong. My appointment is in eight weeks time! I thought the whole idea of cancer treatment was "get it early, treat it quickly". I'm losing confidence in my local hospital and think I might have a chat with my GP to see if I can get referred to another hospital. Am I being a "dick"?

User

Posted 16 Mar 2015 at 11:00

I do not think you are being a dick at all, you are in the process of making one of the most important decisions in your life, the fact that surgeons and Oncologists each have their own "ideal world" does not help. I think you could try talking to your GP to say that you believe it is much more urgent than an eight week wait to just talk to someone about RT. People on this forum can give you the benefit of their own experiences and be supportive but someone in your medical team should be helping you through all this.

Have you been assigned a clinical nurse specialist (CNS) if so call them and say that you just cannot wait 8 weeks they may be able to get you a quicker consult with the Radiology consultant rather than oncology.

I am not sure being referred to a different NHS facility would make that much difference.

If you could afford it or have medical cover you could ask for a consult with a private Oncologist/Urologist specialising in PCa .

If it were me I would be banging on doors so to speak

I wish you all the best

xx
Mo

User

Posted 16 Mar 2015 at 16:27

Hi Keith i was in a similar situation to you and went for surgery and had made my mind up before seeing oncologist as appointment was quiet a wait , had my op in December first PSA after undetectable but offered early RT as margins found or wait to see if PSA rises , have decided for early RT CT tomorrow ,unlike Lyns husband I found the operation free from any side effects , catheter was a pain, down to only 1 pad a day which is pretty dry 3 months on . Hard choice for you all the best Andy

User

Posted 16 Mar 2015 at 20:39

Hi Keith

I'm not a medic and just referring to my own experience

Personally I think an eight week wait to see the oncologist is unacceptable.

They have informed you that you possibly have a T3 grading. Based upon my experience I would not be fobbed off with any talk of a slow growing cancer...you need a decision on the treatment path sooner rather than later as the cancer has or is potentially in danger of breeching the gland (based on your staging)

Regarding which treatment to go for I have also realised with hindsight that you shouldn't necessarily make your decision based upon the chance of follow up treatment. You need to consider, with medical advice, which radical treatment is going to offer you the best outcomes and that includes considering side effects.

As Mo says I would be banging on doors.

Another possible option, if you have to wait to see the oncologist, is to ask to start HT to keep the Pca in check while having to wait

One thing for sure Keith your have to beproactive....its your life

Bri

Edited by member 16 Mar 2015 at 20:41 | Reason: Not specified

User

Posted 19 Mar 2015 at 16:08

Thanks for replies. Went to see my GP today to talk things through. He was very helpful and explained that the concern with my diagnosis is that surgery might (probably will) result in spreading the cancer rather than eradicating it, hence the radiotherapy route. With that in mind I think I've accepted his advise and will have consultation with radiotherapist and park the surgery option. Feeling calmer and less impatient now.

User

Posted 23 Apr 2015 at 23:32

So, met with radiotherapist on Monday. His view was very similar to the surgeon. In my case, surgery or radiotherapy will be equally as affective. It was totally my call. So the way I looked at it was if it was T3 (which they could not tell either way from the MRI image) surgery would be a higher risk route. Radiotherapist explained that the whole prostate plus a margin around the gland was toasted (my word not his). Any reoccurrence would be as a result of microscopic PCa cells floating around outside the prostate which would not be addressed by surgery either. So I've decided to pursue the radiotherapy route and start hormone therapy in 2 weeks. Watch this space.

User

Posted 23 Apr 2015 at 23:38

Good luck with your treatment, Keith. Hope it works out for you.

Paul

Stay Calm And Carry On.

User

Posted 24 Apr 2015 at 09:01

Hi Keith

Good luck with your treatment, I've had 37 sessions of RT and continuing with HT. so far so good with very little side effects from either. Have a look at my profile which I hope will encourage you.

Arthur

User

Posted 24 Apr 2015 at 10:22

Hi Keith, pleased that you were given the information you needed and have now been able to make a decision. Good luck!

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

User

Posted 24 Apr 2015 at 21:06

Good Luck Keith, my choice also. Had first 2 months of a year's HT, start 4 weeks RT on Monday.

User

Posted 24 Apr 2015 at 23:12

Thanks guys for the helpful replies. Good luck Hugh too. I get my first jab in 2 weeks so am not far behind you. We'll have to compare notes. I'll be attending Queen Alexander hospital Portsmouth. Only been there once so far but I guess I'll get know it better in the not too distant future.

Edited by member 24 Apr 2015 at 23:13 | Reason: Not specified

User

Posted 25 Apr 2015 at 18:31

Hi Keith & Hugh,

Good luck with your treatment, I've also had 37 sessions of RT and continuing with HT and also with very little side effects from either. Have a look at my profile along with Arthur's and hopefully they will give you both lots of encouragement and confidence.

Best wishes to you both,

Gerry.

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