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Surgery or radiotherapy????

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User

Posted 11 Dec 2018 at 22:57

This is my Dad’s post. He has to make a decision by Friday as to which route to take and he is still unsure. I have been faced with the worst pain staking decision myself and all I can say is go for the least worst option.

Has anyone chosen HT and RT with Gleason 8 prostate cancer? What percentage chose either option do you know?

If anyone has any advice or has had a similar diagnosis then please let us know.

Thank you in advance for your help.

User

Posted 11 Dec 2018 at 23:27

Hi, I don't know how many choose what but I had the op with Gleason 4+3, post op it was 4+4.

I chose the op for a few reasons. The tumour was said to be near the apex edge which is well away from the bladder. I wanted it fully removed asap. I believed the risk of side effects were far lower priority than removing it quickly.

RT seemed a less interventionist choice that would avoid surgery which I didn't really want to have, but I'd still have the tumour for 3 more months. 4+4 is a high grade.

Post op the consultant I saw said spontaneously with the upgraded Gleason it was definitely the right decision. Also the diagnosing consultant said after I'd chosen it I'd made the decision he'd have made.

I don't really want to influence too much as your fathers case will be different. For example if it was near the bladder there could be a good case for having RT that will hit surrounding areas. Even so you could say you'd like it out asap.

RT is given to people who are unfit, overweight or elderly as well as medical reasons as it's not as strenuous as the op which puts you on a 30 degree tilt head down. It's just a couple of hours if you're thin and perhaps half an hour longer if you're not.

I don't know if it influenced things but I was so up for the op the surgeon fitted me in only 10 days later.

Edited by member 11 Dec 2018 at 23:31 | Reason: Not specified

User

Posted 12 Dec 2018 at 07:16

At 67 it's tough decision, personally I would opt for surgery (and did!) But this was based on the advice of 2 Urologists (one of whom did not do prostatectomies) and personal experience: my dad died if PCA and had Radio therapy, my father in law (now X!!) had the op and died of something else BUT he was plagued with incontinence issues as a result of the op.

With what I know now my father in law was probably over treated and my dad was doomed as he had left it too late (ignored symptoms for many years).

So probably best to take the advice of your medics on this one!!!

User

Posted 12 Dec 2018 at 07:23

I have a Gleason of 7 4+3. I opted for RT because of possible side effects I think I can cope with from treatment. Check out my profile and my post “My Journey”

It is not an easy decision.

Bob

User

Posted 12 Dec 2018 at 11:30

This person has come to the forum for help and support - personal rants on the merits or not of the nhs and quoting out of date figures doesn’t help this person at all - success rates in the uk for treatment of contained prostate cancer are 90-95% irrespective of whether you opt for nhs or not.

Thank you Tony. You are right, the original poster asked for help. I posted information that was intended to be helpful and was attacked for it.

The data on the web site I referred to is updated continuously. It should be obvious that it is impossible to track outcomes at 10 years unless treatment was 10 years ago. That is not out of date data.

Quoting data for "contained prostate cancer" is also not helpful unless you know (I did not) whether Dark Lane is Low, Intermediate or High risk, since it could be misleading.

What do you define as success? Median Overall survival, if so at what interval? Disease free progression- if so at what interval? Freedom from Biological recurrence - if so at what interval?

My observations - intended to be helpful to the original poster - are that it is actually quite difficult to get clear and unambiguous information about prostate cancer therapies since there are many variables involved and there are policies of limited disclosure in operation.

My advice and support to the original poster - intended to be helpful - is get as much good and reliable information as you can. I stand by that.

I personally do not think that offering bland assurances that "all therapies are similar in terms of outcomes" to someone facing a very difficult and potentially life changing decision is helpful in the least.

User

Posted 12 Dec 2018 at 20:43

Notabene- Apologies if you thought my positive outlook was just bland assurances. Maybe someone like myself that had a great experience with their nhs PC treatment is not the type of person this forum needs.

The original poster said everything pointed towards his PC being contained hence my figures on successful treatment for contained. 90-95% Successful means latest accepted figures for 15 years free of cancer after treatment specifically using RP or RT (about 2% difference between them). Obviously these are based on people having treatment 15 years ago so the general consensus is that 15 year rates today will be even higher with the improvement in both treatments.

I am one year cancer and side effects free but stayed posting on this forum because I thought a rare positive view would form a good balance for those just diagnosed and worried - however I am leaving this forum now.

tony

User

Posted 13 Dec 2018 at 09:38

Notabene- Apologies if you thought my positive outlook was just bland assurances.

Tony, I did not refer to you, but the post to which I originally responded.

The data to which you refer can be criticised and as happened with my first post on this thread, one could ask for the source. But that is not my point and I am not much interested in "my data is better than yours" debate.

My point is and remains that, being positive and supportive, it is in all of our interests, whatever our stage and condition, to try and inform ourselves as best we can.

I hope you will not leave the forum. I believe the forum serves an invaluable purpose in bringing people together to share their experiences. Your experience is thus worth as much as anyone's including mine.

I am glad to hear that you are cancer free and I wish you all the very best.

User

Posted 13 Dec 2018 at 09:59

In case it is of interest, it might be worth noting that not all forms of external beam radiation therapy are the same. Proton therapy can be much more targeted and thus may do far less damage to sensitive and important tissue surrounding the tumour if it is localised. Proton therapy is not offered by the NHS for prostate cancer but it is available in several European countries as well as the US. The cost is not covered due to our EU membership, so unless one has private insurance, which may not cover it anyway, one has to pay. The cost will vary according to the extent of the therapy required, that is the number of rounds of treatment.

The Proton Therapy Centre in Prague is extremely modern and up to date. It cannot give 5 or 10 year outcome statistics because it has not been offering prostate cancer treatment for longer than that. It is equipped with the best equipment in the world provided by a company called IBA in Belgium.

For a localised tumour the treatment is likely to be about 5 daily sessions, thus completed in a week. At the time of writing I believe they have never had disease recurrence in the treated area for any prostate patient (obviously no one knows if this will remain true longer term).

Further information about the PTC is here:

https://ukprotontherapy.co.uk

I do not work for nor receive any benefits from the PTC in Prague. I did receive treatment there. I have had no recurrence in the area treated. The side effects were not difficult. I have fewer and less severe long term side effects than have been described in this thread, but there are consequences to having one's prostate irradiated than cannot be ignored.

I am not arguing in favour of this form of therapy compared with others. I am simply offering information and my own experience. I wish anyone facing these very difficult decisions all the very best.

User

Posted 13 Dec 2018 at 10:14

Another option could be Brachytherapy - implanting small seeds of radioactive material on a temporary (inserted and then removed) or permanent (implanted and left) basis. This is offered by the NHS and has many of the same advantages over conventional radiotherapy as proton therapy, i.e. the impact on healthy tissue is minimised.

See:

https://www.macmillan.org.uk/information-and-support/treating/radiotherapy/internal-radiotherapy-explained/brachytherapy.html

User

Posted 13 Dec 2018 at 11:24

Thanks for your information. Do you know if you have to take H T with brachytherapy?

Thanks

Dark lane

User

Posted 13 Dec 2018 at 14:29

Hello Dark Lane

You don't have to take Hormone Therapy at all. I don't but that is my personal decision, which is because as far as I can see Androgen Deprivation has no curative effect. Many doctors will violently disagree with this statement but so far none have been able to point me to clear evidence to the contrary. There are also significant risks with HT which are not so frequently disclosed.

However if you decide you would like to take Hormone Therapy (Androgen deprivation) as far as I am aware there is no conflict with Brachytherapy.

When I was diagnosed and searching for information to help me I was very interested in brachytherapy. It was proposed with a course of HT before and after. In the end I only chose another option because of the timescales.

Also please allow me to suggest that you should not be pushed into making a decision in a matter of days or weeks, if you do not feel ready to. Waiting for months is probably not advisable, but I doubt a delay of a week or two on any treatment option would make a difference to the outcome. You being happy with your choice matters more.

Best wishes

User

Posted 13 Dec 2018 at 15:01

Hi Dark Lane

At the risk of being contentious - I don't intend to make recommendations, but perhaps a suggestion for how you can arrive at a decision that you feel comfortable with.

On the web site I gave a reference to https://prostatecancerfree.org there are visual tools which compare various treatment outcomes. This data is collected from 1000s of peer reviewed medical publications worldwide. It is not intended to prove to you (or anyone) which treatment is best for you. It is intended to help you have an informed conversation with your clinicians about your choices.

To that end, and just to see whether it might be helpful, I went to the site and compared the options of Brachytherapy or as they call it Seeds or HDR, with or without HT (or ADT as it is labelled) and surgery, both Intermediate

https://prostatecancerfree.org/compare-prostate-cancer-treatments-intermediate-risk/

and High Risk categories. (I am not sure which you might be in but your Gleason score was 7-8 as I recall).

https://prostatecancerfree.org/compare-prostate-cancer-treatments-intermediate-risk/

There is information on the web site about how to interpret the graphical information and each dot represents an individual published paper which you or your doctor can retrieve and refer to if it is helpful.

The idea is that you can select, compare and then print the graphical information and use it to have an informed discussion with your oncologist or urologist. I saved these comparisons and could send them to you if you wish.

I hope this is helpful.

Best wishes

User

Posted 01 Mar 2019 at 16:13

Hello lyn,

would you think that i should still have pain in the penis and rectum area 6.5 weeks after prostate removed ?

thanks dark lane .

User

Posted 08 Mar 2019 at 15:10

My husband sees doctors at Mayo clinic for monitoring (we are in US) there philosophy is consider the size of the prostate (not sure if and how this applies to you). If you have a large prostate you are more likely to experience significant damage to other organs (bladder etc..) with radiation so surgery is better. If your prostate is relatively small or average sized then the choice is probably preference. I am sure your doctors have already advised you about this though. It seems like mostly a personal choice.

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