In A State Of Shock

In A State Of Shock

User

Posted 16 Feb 2016 at 21:59

Hello

I have just had confirmation today that I have prostate cancer, pretty upsetting even though I kinder expected it. I was feeling tired at the back end of last year and had a private medical, which actually did not include a PSA check, everything came back fine apart from the usual losing weight. Over the Christmas period I felt even more shattered and decided to see my GP and get a ECG done and mentioned to him about a PSA check as my father had died as a result of having it.

Really didn't give the matter much thought until a call came through to make a routine appointment with the GP to discuss my results. I did this and he said my PSA level was a bit high at 10.1and he would arrange for a biopsy within two weeks. Now the worry started as the GP is not a great communicater and I was struggling to understand going from a blood test to a biopsy in one jump, no examination. I managed to arrange an appointment privately as I wanted to understand exactly what was going on, the consultant gave me a DRE and anothe PSA test, He said the DRE felt a little firm and the 2nd PSA test came 12.5, he was not unduly concerned about the change in level as he said different laborities did things slightly differently which could account for the level change.

I had read that having an MRI scan before a biopsy is becoming more common place, so I asked the consultant if this could be my next step, this he arranged and it came back clear of any spread but confirmed 3 areas of concern on the prostate. I then had a biopsy last week under sedation as I was a complete wreck and today had the news that the Gleason score was 3+4 on both sides.

I need to wait a couple of weeks to be scheduled in for surgery, I think getting it out is my best option? Or is it?

Actually having a bone scan while I am waiting for the op rather than afterwards, hopefully will give me comfort that the issue is comfined to the prostate only, well fingers crossed it is.

Pretty stressed out, probably thinking the worst, any feedback on what I have said would be welcome.

Thanks Ian

User

Posted 17 Feb 2016 at 00:54

Hi Ian,
yes you sound a bit stressed out and hopefully over the next few days things will settle down a bit - I would be enormously concerned about you rushing into surgery so soon after diagnosis. Bone scans are usually done before treatment not after - there would be no point having radical treatment and then discovering there was no point! Having said that, not all hospitals do routine bone scans so at least you will have some extra reassurance.

If you were my brother or friend, i would encourage you to seek an appointment with an oncologist before you decide on surgery - get all the information about all the treatments available to you. Generally speaking, if a man is diagnosed early enough for radical treatment, urologists recommend surgery and oncologists recommend one or more of the different radiotherapies. In some areas, they wait until all your results are in and then a multi-disciplinary team get together and discuss which treatments might be suitable / recommended for your particular situation.

While you are waiting for the scan, download the toolkit from this website and start reading up on all the possible side effects of the various treatments. Only you can decide which side effects are or are not acceptable to you, and with the help of your specialists you can then discuss how likely they will be to affect you.

One last thought - the best side effect of successful treatment is to be alive :-)

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

User

Posted 17 Feb 2016 at 01:30

Hi Ian,

Similar situation to me 12 months ago. Please feel free to click on my picture and check my profile. As Lynn says there is time to consider your options. I had biopsy folowed by MRI and Bone Scan. When this information was given to me I had a clear choice between Surgery or radiotherapy. The only option I that was ruled out was brachitherapy.

Please PM me if you need any clarification on my decision making.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 19 Feb 2016 at 12:37

From one Barry to another,

Hope your treatment did indeed completely eradicate your cancer though it must still be regarded as early days. My cancer was 0,06 some two years after RT but subsequently came back and this can happen years later as with our late very missed friend Barry 'Topgun' . This applies not only to RT but to other treatments. So be happy but wary. May I suggest in passing that you consider changing or removing your surname if it is your real name as these posts are now generally available on the internet and may attract unwelcome attention if you are identified.

My original diagnosis was originally given as T2A but was restaged to T3A after MRI. With the more advanced staging it is less likely that surgery alone will be successful.

For Ian,
Good advice to wait for a complete diagnosis before making a treatment decision but meanwhile carefully study Pros a Cons of different treatments. My experience of this was the consultant said he was glad I had done this because he needed to spend less time explaining and it was less for me to grasp during the consultation.

Barry

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User

Posted 17 Feb 2016 at 00:54

One last thought - the best side effect of successful treatment is to be alive :-)

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

User

Posted 17 Feb 2016 at 01:30

Hi Ian,

Please PM me if you need any clarification on my decision making.

Paul

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 17 Feb 2016 at 03:16

Hi Soren

Thanks for your thoughts, as you can tell with me answering this message at 3am I am having trouble sleeping. I will have a good think.

Thanks

User

Posted 17 Feb 2016 at 03:23

Hi Paul

You sound like you are turning the corner, that's great. I would have messaged you but I am not allowed evidently so early in joining.

You went for removal, I guess nothing had spread?

My consultant only does the open surgery, maybe I should ask about thel laparoscopic as there seems to be benefits from what I have read.

I did not understand today about the bone scan, but I think if that came back with a problem then the prostate removal is like shutting the stable door after the horse has bolted I guess.

Thanks

User

Posted 17 Feb 2016 at 07:35

Hello Ian,

I too was 57 when diagnosed with T3a Psa 33.5 Gleason 7/7 on left.
As the cancer had started to spread to locally advanced stage ,surgery was not an option for me.

I had 2 Mri scans, nuc med scan and biopsy. It was only after the biopsy that the final decision for HT/RT was offered.
No alternative was available.

I know it's an unsettling time for you but just wait and see what happens at your appointments.
It's possibly best not to have too fixed an idea of what you want at this moment.

Wishing you well.

John

User

Posted 17 Feb 2016 at 07:44

Hi
Yes as the others have said , do get all the info you can and don't rush down the surgery path before you have read the toolkit and options available. All curative treatments involve potentially life changing side effects , so you need to decide what is or isn't acceptable to you.
Best of luck and post anytime ok
Chris

User

Posted 17 Feb 2016 at 08:58

Hello Ian and welcome from me too.

I think like the others, try not to rush into any particular course of action at this stage but stop and take a big breath.

The cancer isn't going anywhere and leaving decision making for a while so you can suss out your options isn't going to make a massive difference to the tumour for now.

What will make a massive difference is panic and opting for the first thing that a lot of men think "Let's get it out"

That may well be the best option for you in the long run but as Chris and the others have said, all treatments have effects, some for only the short term, the others you may live with for the rest of your life so a week now, taking a step back from this initial panic, will serve you in the future.

Weighing up the pros and cons of all the treatments (via help from the Toolkit) will mean that in the future you made an informed choice, that was best for you.

IF you have queries about anything then ask somebody, either on here or ring the specialist nurses on 0800 074 8383 and I'm sure they will be happy to help if they can.

All the best
Sandra

Edited by member 17 Feb 2016 at 08:59 | Reason: Not specified

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

User

Posted 17 Feb 2016 at 09:01

It isn't as simple as laparoscopic is better than open - they have different things going for them.

Laparoscopic - shorter time in hospital afterwards, less blood loss, wounds much smaller, surgeon can see what's in there
Open - less time under general anaesthetic, surgeon can feel what is in there, longer stay in hospital

But in terms of outcomes, both seem almost identical - there is slightly less chance of needing salvage treatment after open, and more chance of regaining continence. But most men are back at work much quicker after laparoscopic. Bear in mind there are two types of laparoscopic RP - hand held and robotic (da Vinci).

There are also some weird local differences - in our area, any suspect lymph nodes are not removed in da Vinci, only open, although I know there are other hospitals where the lymph nodes can be removed during LRP. Also, things like a heart problem might rule out da Vinci (you are tipped head down feet up for a number of hours which can put pressure on the heart) or previous abdominal surgery if the scar tissue is in the line of the RP. My husband chose open for a number of reasons although da Vinci was available to him from the same surgeon.

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

User

Posted 17 Feb 2016 at 10:52

Hi Ian,

Good advice / info given in the previous posts, nothing much more I can add to that.

All I will say is when you have your full medical picture consider all your options carefully.

All types of radical treatment will undoubtedly come with side effects to some degree or another.... As Lyn says one of the biggest and most important side effect to consider is life itself!

With the help and guidance of your MDT team try to choose the type of treatment that they with your input feel will give you the best chance of a successful outcome first time around and to hopefully avoid any adjunctive or salvage treatment later on.

Once you have made your decision don't look back, just concentrate on the road ahead.....

Not sure if you are aware but you can check members profiles by clicking on them. Most give quite a comprehensive history of their respective PCa journeys..... This may help you get an insight into the various treatments available first hand....

Best wishes
Luther

Edited by member 17 Feb 2016 at 10:59 | Reason: Not specified

User

Posted 17 Feb 2016 at 13:06

Ian,

I forgot to mention that following my first appointment at the hospital which included a DRE, I received a letter from the urologist.

In it he stated that in his opinion, I was stage T2b.

For a few months whilst undergoing scans etc. I believed that was the stage of my cancer and I would be facing surgery.

It was only when I saw the Onco for the first time that I was told it was T3a and I'd be on the HT/RT route.

My wife recalls the look of shock on my face. She also said that she had never seen me look so miserable before.

So wait until you have all the info and then you'll know where you are and what can be offered.

Best wishes

John

User

Posted 19 Feb 2016 at 10:03

Hi Ian,

It is a shock to get a diagnosis of cancer and I understand what you are going through. As the others say, don't make any quick decisions. I was diagnosed in June 2015 at the age of 61. I had a PSA of 16 with a biopsy showing 6 of 12 samples positive. The Gleason score was 8 with a T3a tumour. The bone scan was clear and hormone therapy / radio therapy was advised. That all finished 2 months ago and I now have an unmeasurable PSA level (<0.1) I am now off all drugs and therapies and have no side effects that are of any concern. The hormone therapy was not fun, although it was only for 6 months. The outcome however has been great. Being diagnosed with prostate cancer doesn't have to be the end of life as we know it, though it seems that way at the time.

My journey is hopefully now over and in my case, I think I had a relatively easy trip considering the diagnosis. The choice of hormone and radio therapies was the best for me, being less invasive with less lasting side effects. However, do rush into anything without considering all treatments. I found talking to the Protate Cancer UK nurses extremely useful. I found it very easy to talk to them about all aspects of PC including the more delicate issues.

Barry

User

Posted 19 Feb 2016 at 12:37

From one Barry to another,

My original diagnosis was originally given as T2A but was restaged to T3A after MRI. With the more advanced staging it is less likely that surgery alone will be successful.

Barry

User

Posted 19 Feb 2016 at 13:35

Hi Barry,

I am very aware that it is very early days for me. I have a friend who had surgery 10 years ago who has just been diagnosed with metastases in his bones.

I found when I was diagnosed that most of what I was reading on the internet was very negative. I even found that the McMillan and PCUK booklets didn't offer me much consolation. It is important to keep a positive state of mind in these times so I am looking at the good side, which there hasn't been much of for me until recently. One thing that having this disease has taught me is to be positive and make the most of every day. I have just returned from 2 weeks skiing in the Canadian Rockies and have every intention of living a long and busy life from now on!

Barry

User

Posted 19 Feb 2016 at 17:08

Barry ( man with PC one ),

I'm glad you replied as you have ,as I was truly amazed by the first Barry's post.

I think it is possibly a treatment record ?

I was dx'd in summer 14 and am still receiving treatment ( HT) levels at 0.2.

Now my RT friend ( call him PH) finished the day before me. We meet up every few months or so.

His first reading 4 months post RT was 0.01 - 04/15

On second reading , 6 months later it had risen to 0.1 - 10/15 ( sorry Chris if your reading this !) .

We've both had our HT extended by a year and we will be monitored for next 4 years.

We both saw different Oncos at same clinic , but same message -

" don't count your chickens "

They are only worried if an upward trend emerges but consider any sub 0.5 Psa level as OK ( if no rise ) following RT in first year .

Obviously we don't know what our respective nadir is yet and won't for at least a year.

PH does NOT have Internet.

Nor a smart phone - didn't want hassle after retiring with " all that stuff" . He is mid sixties.

He doesn't care he can't access info as I can .

He's happy with the treatment plan offered ,as was I.

What he doesn't know can't hurt attitude etc.

And he carries on with his life until next hospital appt.

He does though want to speak with me regarding how he feels and what may happen etc.

Personally I'm glad I'm on this site.

I'm also pleased that I didn't know too much before I started treatment as well , as I've mentioned above.

John

User

Posted 19 Feb 2016 at 17:16

I am getting even more confused with the different views, I thought getting it taken out was my best option.

User

Posted 19 Feb 2016 at 19:45

It might be Ian but I don't think you can know that until you have full results and have taken advice about all the options available to you :-)

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

User

Posted 20 Feb 2016 at 00:20

Barry U,

I agree with you that it is good to remain positive about where we are. I try to adopt this attitude myself by getting on with life and enjoying it. Some are lucky and their first radical treatment permanently eradicates the cancer - great. But one can never be complacent about cancer. I have read that for some, when cancer signifies it's advance for the second time after apparent cure, it can be more devastating than when originally diagnosed. That is why I say be positive but remain wary. In my case with a T3A, I knew there was quite a strong chance that at some point cancer would again need to be tackled, so although a disappointment when this happened, it was not a great surprise. So again I had treatment, one line of defence breached but another put in place. This may or may not be successful but to my thinking it will give me more time to do the things I want to do until maybe some further form of treatment, should this prove necessary. PCa may win out in the end but until then I am not going to let it spoil my quality of life. There are still things in my bucket list to do!

Barry

User

Posted 20 Feb 2016 at 19:44

Hi Ian it is a very difficult time for you. My husband is 51 he was diagnosed Dec 2015 following a number of tests even though from Sept it was thought it was a water infection. We discussed all treatments but once the results of the biopsy came through we it was an easy decision for us surgery we knew there would be side effects but as a couple we felt we could overcome these being alive was more important. Also we have since learnt that if Paul had radiotherapy and it hadn't worked so well it was unlikely he could have surgery. Seven weeks post op incontinence improving, started on medication for this week for ed, tires easily but getting there starting back to work Mon part time. Know we still have a long way to go but feel like we've made the right decison. Hope you do too. Jayne x

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