You have PC.. you don't have PC..!

User

Posted 05 Jan 2015 at 14:02

Hi,

Wife of BicesterBoy back here.

Further to my post below (NHS or Private) we finally got in to see the consultant last week... and... he sits us down and says to my husband ''well the good news is you don't have cancer!''

Cue two dropped jaws and a lot of questions! To cut a long story short we understand it as the original tests taken by Milton Keynes hospital showed PC with a Gleeson score of 6 (biopsy) PSA just over 3 and localised. Due to my husbands age his case was referred to a group of specialists from the John Radcliff etc who re ran the tests and then had a couple of meetings about it all (hence the delay in seeing our specialist) and they couldn't find any cancer cells only PIN cells (pre cancerous).

So as their final findings found no cancer (yay!) there is nothing to treat as such.

We did ask repeatedly how there can be two different sets of results and didn't really get a conclusive answer other than it is recommended we follow the specialists findings.

So PSA checks and once yearly biopsies, plus we are improving diet and exercise to try and stay as healthy as possible.

Has anyone else had this kind of thing happen?

Hope everyone doing ok and all managed to have a good Christmas.

Lara

User

Posted 05 Jan 2015 at 15:38

Hello Lara. What a relief eh.

What a lovely New Year Gift.

Long may it continue.

All the best

Sandra

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

User

Posted 05 Jan 2015 at 15:41

Thank you Sandra :)

User

Posted 05 Jan 2015 at 15:45

Excellent news and what a way to start the New Year. You still have to question the original diagnosis - we're not experts but you wonder how such a mistake can be made and the worry you were subsequently put through.

Paul

Stay Calm And Carry On.

User

Posted 05 Jan 2015 at 16:03

Excellent news for you both!

What a relief!

Maybe the person who did the analysis and grading first of all was inexperienced and misinterpreted the results?

Mistakes do happen, and as I understand it, Gleason scoring is subject to individual interpretation to great extent.....

Best Wishes

Luther

User

Posted 05 Jan 2015 at 16:09

Thank you Paul and Luther,

That would make sense then if it is subject to interpretation rather than a machine giving out a definitive.

It has been stressful but if it has given us a bit of a wake up call with our general health and lifestyle then that's probably a good thing!

Lara

User

Posted 05 Jan 2015 at 16:30

If they are going to get to wrong that is the way to get it wrong. I do fully appreciate the fact that there has been worry and fretting.

But, fantastic news for you all.

Dave

User

Posted 05 Jan 2015 at 17:21

Great news for both of you. I had a similar experience.

I was diagnosed with PC at Milton Keynes Hospital in 2009 with Gleason scores of 4+4 and 4+5. However I was enrolled in a clinical trial at the Royal Marsden in London. The slides from my biopsy were sent there and my Gleason score was re-graded to 4+3. I know which score I prefer although the diagnosis of PC was confirmed.

As far as I understand the procedure, the slides are examined by a pathologist and he gives each core a score depending on its microscopic appearance. The boundaries between each score will not be exactly defined so the overall result will be a bit subjective and will depend on the pathologist's knowledge and experience. I keep myself happy with the hope that the the Marsden's pathologist was more experienced and had examined many more prostate biopsies than the one in MK.

User

Posted 05 Jan 2015 at 20:15

Brilliant great to have some good news

It would have been the guys at the Churchill thats the cancer hospital in Oxford often referred to as the John Radcliffe Trust though actually its now Oxford University Hospitals. While I was waiting for my treatment today I took a straw poll of where everyone was from the Churchill seems to pull people in from High Wycombe in the south Swindon in the west Warwickshire in the north and as far as Bedford in the east.

The staff were telling me that they are becoming so busy that they are going to operate all 6 Varian machines at the weekend.

User

Posted 06 Jan 2015 at 09:51

Thanks

Tombryce, interesting to hear it's not just us then, good that yours was graded down too.

TMAC sounds like the Churchill know their stuff then, whats a Varian machine?!

User

Posted 06 Jan 2015 at 16:37

Hi Bicesterboy

The Churchill uses Varian machines to deliver radiation check out the link to the video on you tube http://youtu.be/aANRNGGTxEM

I am currently 24 into 37 sessions I have to go to Oxford very day Monday to Friday 4 hours including traveling and prep time (you have to give yourself an enema every day and then drink a good litre) Full bladder Empty bowel is the order of the day.

The nurses and radiographers are a good bunch of human beings and take good care of everyone.

User

Posted 05 Mar 2015 at 11:38

Hi, Well another update.. Would you believe apparently the doctor at Christmas didn't read the report properly and he does have it after all!!!! Am so frustrated, talk about a rollercoaster of emotions, am staggered at the incompetence really!

So doctor this morning says it's showing a very small amount on one side and just PIN on the other side, he has recommended active surveillance with PSA every three months and yearly MRI. He doesn't think it best to treat it currently due to possible side effects.

My head is back spinning again..

Hope you all doing ok on your respective journeys?

Lara

User

Posted 05 Mar 2015 at 16:33

Gosh I remember your story. I guess it is not a precise science but it looks as if despite the re grading you remain on AS for now, which sounds right and does mean at least the treatment would have been the same. It is clearly innthe margins for now so hopefully it will stay that way.myou have the regular testing so any developments furthe down the line will be spotted. It's a setback but you remain in a good place to be. Hope this continues,

User

Posted 05 Mar 2015 at 18:08

Hello again Lara.What can I say.Devastated for you both. Not much consolation at present to say that at least it's in its early stages if your other half is going to be on active surveillance.Mine was on it for a year before he had to make a decision when the PSA started rising.You have plenty of time to look at future treatments if they become necessary.I'm so sorry that it has finally been confirmed but at least they have read the results thoroughly this time.Horrible thought but if you had gone along with the original diagnosis it might have been some way down the line with a nastier prognosis.All the best, chin up both.Best wishes Sandra

Edited by member 05 Mar 2015 at 18:09 | Reason: Not specified

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

User

Posted 05 Mar 2015 at 19:17

Lara

what a shocker , I am so sorry things have gone like this.

Thank goodness it seems to be slow progressing so you have some time to take stock and come back up for air.

User

Posted 05 Mar 2015 at 20:25

Lara

I'm staggered. The only consolation is that the cancer is small, and you have all options open re treatment, which gives you time to take in all that has happened.

Once you decide whether to go on AS, or treat quickly is down to you. Wish you and your OH all the best in dealing with his PCA.

Paul

Stay Calm And Carry On.

User

Posted 05 Mar 2015 at 20:46

Originally Posted by: Online Community Member

My head is back spinning again..

Hope you all doing ok on your respective journeys?

Lara

I read this this afternoon and did know what to say, apart from "oh no". Horrid news. Fortunately the cancer is apparently a slow grower, thank goodness for that, but I do wonder if it is worth you getting a second "second" opinion? And I also wonder what training or intervention will be given or has been given to the Dr who got it wrong in the first case?

dave

User

Posted 05 Mar 2015 at 22:06

Sorry that you've both been put through this and totally agree with Dave....I would want another opinion if just for reassurance

Bri

User

Posted 06 Mar 2015 at 10:09

Thanks so much everyone for your replies, it means a lot.

My husband is very laid back by nature and seems to have faith in the main doctor (rather than the one we saw at Christmas who got it wrong). I totally agree the other doctor really needs some training! Also due to him telling us that it was all clear we didn't take our opportunity to carry on with the private health cover which would have covered any treatment necessary and now it's too late to take that back out (and any new cover wouldn't cover a pre existing condition).

They do seem to think it's very small and slow growing and the panel of bigwigs were all in agreement that the potential side effects of any treatment currently out way the risks of the cancer (the figures quoted were a 20% chance of the cancer growing in the next 20 years).

So active surveillance for now, will be interesting to see what the psa from yesterday is as the one taken at Christmas was 3.5 (up 0.4 from Oct). The doctor yesterday thinks the minor increase was possibly due to the biopsy.

Thanks again

Lara

User

Posted 01 Apr 2015 at 12:31

Well we now have the results and psa gone up to 4.4!!

That's a whole percent since the Christmas one .. they had said it was non aggressive but that seems quite a jump to me. Unfortunately the urologist is away until next week and as we have been signed off from oncology due to the first doctor reading the report wrong we have to wait for him to get back before his secretary can discuss it with him.

Am feeling quite upset at the way it's all going, even simple things like getting the results takes multiple phone calls and weeks of messages before getting a response.

So I guess it might be time to start looking at those treatment options again..

Lara

User

Posted 01 Apr 2015 at 17:01

Hello, just reading your story...what a journey. Just thought I would say my other half was encouraged to do AS with a psa of 3.7 in June, by Dec it was 4.9 we both couldn't handle the worry of just being monitored, the consultant still encouraged to just monitor, (with a bigger biopsy a few months later) we had decided on brachy when needed and the consultant said he was happy to wait until the psa was up to 15 but for me the risk was too great, I thought it could spread in that time so he had the treatment in January. Hope you get it sorted soon.

User

Posted 02 Apr 2015 at 12:37

Thank you for your reply, it is indeed a journey! Have just booked a doctors apt for next week to repeat the PSA test and check it wasn't an anomaly then will go back to the urologist. It seems to me they encourage monitoring but like you I worry about it spreading whilst we sit watching! I hope your husband makes a full recovery soon, has he had his psa tested since January?

User

Posted 02 Apr 2015 at 15:49

Hello, yes he had a psa 6 weeks after brachy, it was 4.9 pre brachy and he thought it was 2.9 but he got confused a few days later and said 3.9 but it had gone down. It can go up after brachy due to the trauma to the prostate, but had gone down a bit. Takes at least a year after brachy to settle.

Good luck with your psa test.

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