Radio Therapy or Surgery??

User

Posted 30 Aug 2023 at 19:18

Mark, in the meantime you’d probably be put on HT. I was told I would be on it for life if it came back, but I’m not just going to accept that if it happens, I will be searching around for a second opinion.

Hope you get your scan result soon, things might become clearer then.

Derek

User

Posted 30 Aug 2023 at 19:32

Originally Posted by: Online Community Member

I’m struggling with the oncologist saying that after the initial RT I can’t have any more RT if the cancer returns. Or would have to wait 5/6 years for the area to rejuvenate.

What happens in tbe mean time??

Sounds like it's time to realise you're not immortal. The great philosopher Lemmy Kilmister wrote a treatise on this topic called "The Ace of Spades" which he set to music.

https://m.youtube.com/watch?v=PMavhk16FJU&feature=shared

If you can't hear the words.

https://genius.com/Motorhead-ace-of-spades-lyrics

Dave

User

Posted 30 Aug 2023 at 20:06

Thanks Derek.

This waiting is awful .. I’ve got so much love and support around me but it’s still a lonely place. I’ve been advised that I may need something to help me deal with the anxiety.

Any recommendations as I’m all over the place!

Regards

Mark

User

Posted 30 Aug 2023 at 22:34

Originally Posted by: Online Community Member

Thank you both for your views.
I’m struggling with the oncologist saying that after the initial RT I can’t have any more RT if the cancer returns. Or would have to wait 5/6 years for the area to rejuvenate.

Try to be more positive that the treatment will work Mark. I know it can be difficult but there’s really no reason why your primary treatment won’t.

We’ve made some positive lifestyle changes too, this helps us focus on how to generally be healthier and keep feeling well. Life can still continue and be good even when living with cancer….you just have to believe it and try to enforce it. (I know it’s easy for me to say but I take this stance with rob)

I honestly think you’ll feel better when you get the scan results. If you’re struggling maybe try and contact them to tell them this and hopefully they could get the results to you asap 🤞🏼

Keep strong, things will be ok x

User

Posted 30 Aug 2023 at 23:05

Hi Mark,

When I started HT it brought on dreadful anxiety …I just couldn’t function at all. It got better as the day went on but I was in a really bad way. I remember a trip to Arran with my son and 2 lovely grandsons and they just couldn’t understand why I wasn’t able to join in the fun….it was one of the saddest days of my life so I decided to do something about it. I had heard sertraline had helped various members on here and my sister-in-law has also been taking it for anxiety. I contacted my GP who put me on a low dose…it takes a few weeks to get into your system but it has made a HUGE difference to me…I can now deal with most things that are thrown at me on this journey. I do still have a few ‘down’ moments but generally am able to get on with my life. I would normally try and stay away from anti-depressants but I thought to myself ‘I’ve got at least 3 years of this treatment and I want to have some QOL’ ….Sertraline has certainly given me this.

Oh, and Maggies has also been such a help to me, I always feel better when I come away from meeting the other guys there.

Im sure once you have your results and made your treatment choice you will start to feel better…you are right, the waiting is the worst….I was like a bear with a sore head waiting on the results of my last PSA test…it was so important to me as it was the first following RT.

All the best…and stay strong💪💪💪

Derek

User

Posted 30 Aug 2023 at 23:32

Hi Derek,

Thank you so much for the reply. Two friends have mentions this drug and my wife has encouraged me

Ask the Doc for some.

I get so down in the mornings I can’t get out of bed.

When I read things on the internet it completely depresses then I get in a very dark place. I know I’m putting pressure on my family too when I’m like this because they worry about me more.

I will try and get some from the Doc and hopefully it will help.

Thanks again Derek.

Replies are so much appreciated

Take care

Mark

User

Posted 31 Aug 2023 at 13:31

Hi all,

Just had results back from PSMA scan and it’s all clear.. no metastatic disease so I’m so relieved.

Just need to choose my treatment path now.

Will keep the feed updated!

Keep well everyone

Mark

User

Posted 31 Aug 2023 at 13:40

That's fantastic news Mark and hopefully gives you a sense of relief.

Now you just need to decide which treatment is best for you. I know what I would choose but every decision has to be a personal one, taken with the input and support of your family members.

Best of luck with whatever you decide and know that we are here to support you and many of us are walking the same path.

Steve

User

Posted 31 Aug 2023 at 22:05

Great news indeed Mark and I suspect you have already decided which treatment is best for you. I look forward to hearing what your decision is…once you’ve made it you will feel much better and can start to plan for the future.

all the best with your decision.

Derek

User

Posted 01 Sep 2023 at 00:47

Excellent news Mark. You can breather easier now as you move on to the next bit.

Jules

User

Posted 05 Sep 2023 at 17:04

Hi everyone,

Just on way back home from another oncology consultation.

The oncologist who was extremely nice and informative has recommended HR, Brachytherapy then high dose of external RT.

So not sure what I do.. surgery or the above..

All thoughts gratefully received

Hope everyone is staying positive and strong unlike me!!!💪

Mark

User

Posted 05 Sep 2023 at 17:58

Hi Mark,

Glad it went well. The only advice I can give you is to find someone neutral to speak to who can help you rationalise the options and allow YOU to make your own decision.Your Clinical Nurse Specialist(CNS) would be my first port of call, or one of the Specialist Nurses on here, or find a support Organisation such as Maggies.

In Scotland you wouldn’t be given the option of surgery but that doesn’t mean you shouldn’t choose that route.

Once you’ve made your decision it will be easier, but don’t look back and wonder if you’ve done the right thing, look to the future and getting this disease knocked on the head!

Good Luck!

Derek

User

Posted 05 Sep 2023 at 18:11

Hi Mark, I had the same treatment, all good so far. Would you also have HT with the brachy? I had two years of HT, I was OK with that, but there are plenty on here that don't like it.

Dave

User

Posted 05 Sep 2023 at 18:23

Did you discuss RP with the oncologist or did you just ask for their recommendation? Did they discount it or was it that they preferred the RT route?

I don't think there is any 'right' answer - my biopsy result was G7 but ended up on the lab bench as the same as yours G9 (actually 4+5 rather than 5+4) T3bN0M0 and my post surgery PSA was <0.01 but I am on 3 month PSA tests. I don't know what advice I would have received if I had had the G9 diagnosis before the surgery.

Mentally I am happy to have had the mothership out of me - but as to what happens in the future, I don't know although there are still plenty of RT/HT options.

The RP side effects are well documented so you should be fully aware of them before you make any decision.

The best of luck moving forward!

User

Posted 05 Sep 2023 at 19:24

Thanks Guys,

Oncologist didn’t dismiss the surgery but was more keen on his treatment path.

The brachytherapy wold be HDR so would like to hear from anyone who’s had this.

Yes I would have HT first before the Brachytherapy.

It’s very confusing now as I was all set for surgery!

Best wishes

Mark

User

Posted 05 Sep 2023 at 19:27

Dave,

What brachytherapy did you have?

What was your staging and G score?

Mark

User

Posted 05 Sep 2023 at 19:37

I’m looking for a plan b if the first attempt fails.

Onco told me if I have surgery then radiation for SRT isn’t as powerful due to the surgery.

What if there are micro mets in my body and I have surgery?

What happens when the HT stops working or I have relapse after the ratio therapy route?? What are the option? Is that it??

User

Posted 05 Sep 2023 at 19:47

If you decide to go for RP make sure that the consultant has had a lot of experience. I don't know about other treatments but in my case, because I had private health insurance, I was able to pick a top guy who had performed about 60 robotic procedures (that was a lot in in 2011). In my case the surgery turned out to be rather complex and difficult, lasting over 6 hours. However I did come through with very good outcome. That was 12 years ago. You are in a good position, whichever route you take; there is a lot more experienced consultants out there. Good luck.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 05 Sep 2023 at 19:50

I was started on HT for two years. Six months in I had one session of HDR brachy with a general anaesthetic, then 15 fraction of EBRT starting a week later.

Aged 53, I was diagnosed G4+5, T3 Extra capsular extension, PSA 25.

Surgeons were not interested in treating me, if I had a relapse it would have upset their statistics. I don't think anyone keeps statistics on radiotherapists so they were happy to have a go.

Very few treatments are possible post RT, however as HDR is confined to the prostate and doesn't do much damage outside the prostate and the EBRT is only given at half strength, it maybe possible to have more RT (I have no evidence for this).

Old Barry had HIFU many years after RT. This would only be possible if the new tumour was in exactly the right position.

Five years on my PSA is <0.1, but as discussed on another thread, you need to look at statistics not just one person's good or bad luck.

Dave

User

Posted 05 Sep 2023 at 19:59

Both your staging and your Gleason are high risk. With this, micro-mets (mets too small to show on scans) in the area around the prostate, seminal vesicals, and lymph nodes must be a possibility too. I would be looking to hit it hard first time.

If your hospital offers HDR boost, I would ask if they think it's suitable. This is a radiotherapy combination where about half the dose is given using HDR brachytherapy to prostate and seminal vesicles, and the other half is given using external beam radiotherapy to same areas, but also including area around prostate and pelvic lymph nodes at a lower dose. This puts a higher dose into the prostate than can be achieved with external beam radiotherapy alone (prostates handle high doses well), but also aims to mop up any micro-mets in the most likely places, i.e. just around the prostate and in the pelvic lymph nodes (at a lower prophylactic dose). This will come with a period on hormone therapy too, probably at least 2 years. Although this hits the cancer hard, the side effect profile is not usually excessive.

I had this treatment although my diagnosis wasn't as high as yours. I'm very happy with the outcome, but there are no guarantees of course.

Edited by member 05 Sep 2023 at 20:05 | Reason: Not specified

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