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HRT & RADIOTHERAPY

User
Posted 23 Apr 2015 at 21:04
At least I think it's localised cancer - haven't a clue! On 31st March my husband, Danny, was told by the oncologist that because his PSA had risen (over 9 years on W & W from 6 -to 19.5) that treatment was now necessary and that he recommended 3 months on Casodex followed by 10 sessions of Radiotherapy. A few words from the nurse and we left with a prescription in hand.

A few weeks on and I'm thinking 'hang on a minute', no further tests were done to find out how far the cancer had spread or was stage it was at. The date for the pre RT CT scan came today, 29th May. I would love to get some opinions as to whether this is how things are done. Should we ask for more information? More tests?

User
Posted 23 Apr 2015 at 23:47

My dad (86) was on AS for years, and is now on HT.  He has responded well to it in the last 2 years.  I am sure others with more experience will give you good advice.

 

Paul

Stay Calm And Carry On.
User
Posted 24 Apr 2015 at 15:14

Thanks for your reply 6ff2. Did dad go on to have radiotherapy?

User
Posted 25 Apr 2015 at 15:09

I think it is surprising that your husband has not had a biopsy or MRI scan as I always understood that the treatment offered was dependent on the Gleason score and the stage of the cancer. Hormone treatment followed by radio-therapy was my treatment for locally advanced cancer and a Gleason score of 7.

I think you should find out the reasoning behind the treatment being offered and if that is the only treatment option. Perhaps one of the PCUK specialist nurses could offer some advice.

User
Posted 26 Apr 2015 at 15:19

Thanks Tom. It's been worrying me more and more. Danny is very much a head in the sand person and always thinks the doctor knows best, even though he has two failed knee replacements!

I shall take your advice and phone his oncology nurse tomorrow. I can't think that it is right to be going ahead with a treatment that can have severe side effects without carrying out new tests to determine the current state of play other than a raised PSA.

User
Posted 28 Apr 2015 at 00:01

The CT scan will show the extent and position of the cancer. As you've discovered, the purpose of the CT scan is to plan RT. If Danny has RT this would mean that surgery would become impossible. So, the oncologist has ruled out the option of referral to a surgeon. Question 1: why hasn't surgery been discussed with Danny. Q2 Another is the type of RT. From what you say it seems that External Beam RT (EBRT) is planned. There are variants of RT - Intensity Modulated (IMRT) with image guidance is now widely available and is definitely preferable to the older conformal beam RT. Q3 Another question is whether brachytherapy is a possibility. Q4 Also ask whether hormone therapy is planned to continue after RT. This decision depends on the nature and extent of the disease.

I know someone who has recently gone on AS with a low risk cancer: Gleason 6 and early staging, T1c. He has been told that PSA will be monitored for some months, than another MRI followed by some months later another biopsy. Dependent on the results of those tests - spread over about 18 months - treatment would be discussed.

Most importantly, doctors recommend treatment, but patients decide. Remember that "Knowledge Empowers". Without knowledge Danny may take the wrong decision.

User
Posted 28 Apr 2015 at 01:18

Peggy, i am going to disagree a little with some of my colleagues above. At the age of 76 and with other medical problems I can quite see why the hospital is recommending radiotherapy rather than surgery - to be honest, I think the side effects of surgery combined with the aftermath of failed knee replacements (which presumably affects his mobility) would be intolerable for him. Brachytherapy is usually limited to men with a pSA of less than 10 so Danny is way over that.

I would be asking the hospital to clarify the planned radiotherapy for you - you say here 10 sessions but on your other thread you mentioned 4 weeks. Both of these are unusual - it is more commonly 7 1/2 weeks (37 sessions) so it would be useful for you to know why it is different in your case. It is possible that Danny is on a trial which is attempting fewer treatments at a higher dose than usual - this trial is usually offered to fit men and has had good results so far in that the side effects seem to be fewer but they need to explain to you exactly what is being offered and why that is their recommendation.

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

User
Posted 28 Apr 2015 at 08:32

Peggy

Apologies, I've only just seen your question. My dad has not had any treatment other than HT. He is a fit 86, but as far as I am aware, he was not offered RT. I will ask next time I get the opportunity.

Paul

Stay Calm And Carry On.
User
Posted 28 Apr 2015 at 16:51
Just seen these remarks. Thank you all so much. I couldn't immediately get through to his local nurse so phoned the helpline and spoke to a lovely woman who more or less said exactly the same as you Lynn. Not a good candidate for surgery because of prevailing health issues and age. I don't know where I got 10 sessions of RT from, definitely 20 over 4 weeks. I'm grateful for the additional knowledge about number of treatments. I shall definitely make more enquiries. The nurse also explained that the CT scan would show how far the cancer had spread, so there could be some adjustments to be made then.

I did ask about the two kinds of RT, EBRT and IMRT but my brain is on a go slow and I can't remember the answer! I'll ask again and take notes.

Thanks again, I really appreciate you taking the time to reply to me.

User
Posted 28 Apr 2015 at 17:00

Hi Peggy

I had 4 weeks RT. It was 3DRT which is more focused than EBRT but less than IMRT.
Plus Hormone Therapy.

Still here 10 years plus.

Ray

User
Posted 28 Apr 2015 at 17:08

Hi Peggy,

If you have a problem remembering all that is said on the phone, why not record the conversations? You can tell the other person what you are doing and why, to help you recall later what was said.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 29 Apr 2015 at 09:00
Blimey! I must start making a lIst of all these acronyms and their meaning. LOL.

Good tip on recording Dave.

So pleased to hear you are still alive and kicking, Ray. All very encouraging.

User
Posted 29 Apr 2015 at 09:35

Originally Posted by: Online Community Member
Blimey! I must start making a lIst of all these acronyms and their meaning. LOL.

Good tip on recording Dave.

So pleased to hear you are still alive and kicking, Ray. All very encouraging.

 

There was a thread or at least a post on the old site listing the common acronyms, not sure how to dig it up?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 29 Apr 2015 at 16:02

Hi Peggy,

Maybe I can help you with the acronymns.

EBRT stands for External Beam Radiotherapy and IMRT i.e Intensity Modulated Radiotherapy is one form of EBRT. 3D conformal radiotherapy is an older technique but is still a form of EBRT.

The latest type of EBRT is Image Guided Radiotherapy (IGRT) but I'm not sure how widely available this is. With IGRT doctors can target the radiotherapy treatment very accurately. This can mean that the treatment works better and can also reduce the risk of side effects.

You can read about the different forms of EBRT on this website if you follow this link.

I had 20 sessions of IMRT spread over 5 weeks - I was given every wednesday off. Since Danny is having 20 sessions I would guess that he is having IMRT which I think is now more or less the standard treatment.

 

Tom

User
Posted 29 Apr 2015 at 20:00
Great link, thank you Tom.
User
Posted 01 May 2015 at 16:42
Since starting Bicautamide on 1st April, PSA has come down from 19.5 to 13.22.

I asked the nurse about the 4 weeks instead of 7 and, yes, it is a stronger dose. Thanks for that info Lynn.

 
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