Confused.

Confused.

User

Posted 02 Nov 2017 at 19:46

Hi everyone.
My name is Carol. My husband was diagnosed in August this year.
He has a Gleeson score of 3+3 and a Psa of 12.
We have seen all the specialists & today we saw the Surgeon about Bracytherepy.
We are now confused as one Dr says this is the right treatment for my Husband & today the urologist has told him if he has this treatment that there is a 25% chance the cancer will return. & he has advised him to have the Prostate removed. My Husband is 54yrs.
We know there is side affects to both treatments but what we are confused about is different Dr's have advised us on different operations.
My Husbands biopsy were all positive. 12 out of 12.
We have just lost his Sister to this file illness...she was 50 yrs old & as you can imagine we are still so upset from this. All this confusion isn't helping. Please can someone tell us if they have been in the same situation.
TIA
Carol.

User

Posted 13 Nov 2017 at 13:16

Hi Carol - Alison's reply was a good one. The two doctors are giving different opinions not because they are confused what to do but because there are genuinely different choices here with very similar success rates. The urologist (surgeon) may prefer to advise the operation because surgery is their speciality and, on the whole, they don’t like to do the operation after any radiotherapy (although it can be done). Radiotherapy (whether it be brachy or external beam) is the oncologists speciality and they may recommend this to you - possibly with a course of hormone therapy as well. Given a level playing field and early diagnosis they have very similar success rates (which are very high) so they are allowing you to decide for yourselves. The Tool Kit is a great place to start and I have found this community is always helpful - although always remember with this and other internet sites, when people get better and have relatively few problems or side effects they tend not to post on forums as much as those with problems. I was in exactly your situation about 6 months ago and I took my time to decide and eventually opted for external beam radiotherapy with hormone treatment (brachy was not available due to my cancer being close to the margin (edge) of the prostate) however I could just as easily opted for the operation. Take your time and weigh up the possible side effects and impact on your lives that each treatment may have but above all remain positive - the outlook if your cancer is contained and after the treatment you choose is very good .

User

Posted 02 Nov 2017 at 23:06

Hello Carol and a belated welcome to the site.

What Brachytherapy was originall offered as there are two kinds.
Permanent Seed Brachytherapy and High Dose Radiotherapy which is a one off.

My husband has been told that his seed brachytherapy has exactly the same chance of cure as an operation and he had the procedure over 3 years ago. He is however, a lot older than your husband.

With any of these treatments there is potential for side effects, some of which can be long term. Obviously all men are different in their reactions to treatments and it may be that your husbnad, which ever route he takes, will be one of he lucky ones but you should be aware of them and research as much as you can.

Unless your husband has been advised that he has to make an urgent decision as to treatment then I would personally advise that he takes his time.

Go to publications on this website and download the Toolkit. There are also nurses on here you can speak to, but remember
nobody can advise as to actual treatment choice. That is for your husband to decide (with your help of course)

If Brachytherapy is undertaken first then there is little likelihood that surgery could follow later as the prostate will have been "fried"

Just make sure that whatever route he takes he feels it is his best option and not one chosen for him by a doctor who specialises in a particular treatment.

Best Wishes in your research

Sandra

Hopefully there will be others along soon to offer their own opinions.

We can't control the winds - but we can adjust our sails

User

Posted 03 Nov 2017 at 00:41

This seems a bit confused - you wouldn't see a surgeon to talk about brachytherapy as it is an oncologist that does brachy and other kinds of radiotherapy.

If your appointment today was with the brachy specialist and his/her advice was that it has only a 75% chance of success, you need to choose one of the other options that you have already seen doctors about. If the doctor today was a surgeon that is a different matter.

It doesn't really surprise me that your husband may not be suitable for brachytherapy. The general guidelines are that the prostate should not be enlarged, the tumour should be quite a small area, PSA should be less than 10 and Gleason of 7 or less. Since your OH had 12 cores positive out of 12 this sounds like not a small tumour at all and his PSA is over 10.

Do you know what T score has been given? (T1, T2, T3, T4 and is sometimes broken down further to a score like T1a, T2a, etc)

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

User

Posted 09 Nov 2017 at 23:12

Hi Carol,

My husband was also diagnosed with Gleason 6. It was a surprise to us too that we had choice. ( Not everyone does of course,but it did feel strange!)

We were offered:

Active surveillance
Surgery
RT ( probably brachy)
HIFU
FLA ( overseas and private)

Those with choice have very different views ... The risks of incontinence and ED for us made surgery on a low risk Gleason 6 diagnosis feel like a probable over treatment but others with a G6 just want it taken out ASAP... Everyone is different and nothing comes with guarantees.

Really feel for you .. A shock to be diagnosed then decisions to be made with different consultants recommending different things .. Tough times but the diagnosis could be a load worse.

Good luck with it all

Clare

User

Posted 10 Nov 2017 at 08:59

Dear Carol

It is such a shock to get the cancer diagnosis and then when you are at a point of despair, you are given a choice of treatments. It is so difficult to take it all in and this is a position that a lot of us on here have found themselves in.

We see the Consultant and expect him or her to TELL us what to do.

It seems in prostate cancer that this is not the case as there are several options of treatment ( which is good news really!) but you have to weigh up the pros and cons of each depending upon your own personal circumstances including the stage of the illness, the likelihood of successful treatment, your husbands age and overall health, his family history and the thought of how he will deal with the side effects.

There is so much to read on each treatment you should start with the toolkit on this site or ring one of the nurses to talk through the options.

I know that you want someone to tell you what to do! All we can do is advise as to what we all did, but every man is different.

Lots of things to think about:

Could your husband cope with a major operation? Is he fit and well enough generally.
Is he working - how will this be organized around treatment?
Do you have grandchildren? ( with certain treatments like brachy children can't sit on your knee as it MAY affect the child)
Has Radiotherapy been offered?

So much to co spider, I don't want to confuse you more.

The good news is that treatment is available, and there are options. Try to see this as a positive and set some time aside to do your research. The tool kit I mentioned is a great start.

You can get it on this site online or ask them to send it to you via the post.

All the best

Alison

User

Posted 14 Nov 2017 at 19:07

Thankyou everyone.
I feel a lot better about it all now & my Hubby has decided to go for Bracy.
We are trying to be positive & we are talking about it all the time.
Thankyou all again for the kind words
👍🏼😊

Show Most Thanked Posts

User

Posted 02 Nov 2017 at 23:06

Hello Carol and a belated welcome to the site.

What Brachytherapy was originall offered as there are two kinds.
Permanent Seed Brachytherapy and High Dose Radiotherapy which is a one off.

My husband has been told that his seed brachytherapy has exactly the same chance of cure as an operation and he had the procedure over 3 years ago. He is however, a lot older than your husband.

Unless your husband has been advised that he has to make an urgent decision as to treatment then I would personally advise that he takes his time.

If Brachytherapy is undertaken first then there is little likelihood that surgery could follow later as the prostate will have been "fried"

Just make sure that whatever route he takes he feels it is his best option and not one chosen for him by a doctor who specialises in a particular treatment.

Best Wishes in your research

Sandra

Hopefully there will be others along soon to offer their own opinions.

We can't control the winds - but we can adjust our sails

User

Posted 03 Nov 2017 at 00:41

This seems a bit confused - you wouldn't see a surgeon to talk about brachytherapy as it is an oncologist that does brachy and other kinds of radiotherapy.

Do you know what T score has been given? (T1, T2, T3, T4 and is sometimes broken down further to a score like T1a, T2a, etc)

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

User

Posted 09 Nov 2017 at 18:49

We did see a Surgeon that did the Bracytherapy op.
The Oncolagist said my husband was a good candidate for the op but the DR we had seen is a Uroligist & he is the one who has told my Husband to have the prostate removed. This is why we are confused.
Gleeson score 3+3 ....12 viopsies were taken & all 12 came back as positive.
T2 also.
I'm confused still because why would one Dr say one thing & another say another thing....???
We have talked & talked about all the options but still we don't understand why different Dr's say different things.

User

Posted 09 Nov 2017 at 18:53

Also it's the permanent seed Bracytherepy he is thinking about.

User

Posted 09 Nov 2017 at 23:12

Hi Carol,

My husband was also diagnosed with Gleason 6. It was a surprise to us too that we had choice. ( Not everyone does of course,but it did feel strange!)

We were offered:

Active surveillance
Surgery
RT ( probably brachy)
HIFU
FLA ( overseas and private)

Really feel for you .. A shock to be diagnosed then decisions to be made with different consultants recommending different things .. Tough times but the diagnosis could be a load worse.

Good luck with it all

Clare

User

Posted 10 Nov 2017 at 08:59

User

Posted 10 Nov 2017 at 13:22

Hi Carol,

I was diagnosed with PCa a couple of years ago (at the age of 41) and was offered both permanent seed bracytherapy or surgery. I was able to speak with both the consultant onocologist and the surgeon, fortunately for me they both agreed with each other - in my case they felt either treatment offered an equal chance of a cure but advised against radiotherapy treatments due to the risk of secondary cancers from the treatment given my age. I appreciate I'm a little younger than your husband but I would have thought this should still be a factor in his decision given his age.

I had surgery (davinci robotic) and am very pleased with the outcome but obviously there's no saying what particular side effects your husband would experience with either option. At the time, the removal of my prostate was the last thing I wanted but going for surgery saved me from having to have hormone therapy (which I dreaded the side effects of) and my follow up blood tests are now a very clear indicator of if I have any on-going prostate cancer or not. So overall I'm sure I made the choice that was right for me.

As an aside, on the morning of my operation my surgeon operated on someone who had unsuccessfully been treated with bracytherapy (we met in the corridor the next morning and exchanged notes!) so there are some surgeons who will operate after treatment in the right circumstances.

I hope this helps in some way,

Andrew.

User

Posted 13 Nov 2017 at 13:16

User

Posted 14 Nov 2017 at 19:07

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