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Situation at 6 week appointment

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User
Posted 30 Jul 2019 at 23:24

My PSa was 11.4. Gleason 4+3. Biopsy showed cancer only in one half of prostate. I had RP on 17 June.

Today was told 2 22mm tumours were removed and had not breached the prostate. 33 lymph nodes were removed and all were clear. My PSA is undetectable.

However, bone scan showed a lump on pelvis. Radiologist thinks could be cancer. Surgeon is remaining positive that it isn’t, given all my other data, especially the PSA.

Had bloods done today for ultra sensitive PSA and been referred to oncologist with possibility of SABR, Cyberknife, treatment if necessary. So has left me slightly confused.

User
Posted 18 Sep 2019 at 16:54

Just thought I ought to let you all know that I had to go for a PET scan. Fortunately this has come back clear, the mark on my pelvis is benign. So they’ve told me I am clear.

First review is due the week before Xmas.

Such a relief.

 

Rob

User
Posted 31 Jul 2019 at 11:53

I think you need to lodge a complaint with the hospital.

The way your diagnosis and treatment have been handled is appalling, with the most basic of mistakes. You might have gone down completely the wrong treatment path (although you don't yet know if that's the case, and it might not be). I would want to be referred to somewhere else for the rest of my treatment after such a basic cock-up. Others here might have a view on how to do that, if you want to.

User
Posted 01 Aug 2019 at 09:07

There is a theory that having the main tumour removed can improve outlook.  My own wish was to have surgery even if the bone scan was positive although it was probably unlikely.  That they properly analysed your prostate and removed lymph nodes is good.  Also it is possible for you to still have RT.

Although you're naturally worried it might not be as bad as you think.

It does look like the bone scan has been badly managed but you may be better waiting for the outcome of further tests and making the hospital feel they owe you something rather than creating hostility.  It might also be that the bone mark appeared late and would not have been found earlier.

User
Posted 18 Sep 2019 at 18:04

That's really good news.

User
Posted 18 Sep 2019 at 19:02
Great news, Rob!

Best wishes,

Chris

User
Posted 19 Sep 2019 at 18:52

Good news Sub, wish you well.

Late in the day I was told I had a positive from my bone scan in my right eyebrow.... I had walked into a door 2 weeks before and it was inflammation!

 

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User
Posted 31 Jul 2019 at 08:07

A couple of points...

The bone scan should have been done and analysed before you were offered any treatment. What was the sequence of events?

To identify cancer in bones, it's normally first identified as new growth in a whole body nuclear bone scan, and then the suspicious area X-rayed to see if the growth looks cancerous (unless there's multiple sites, which also confirms cancer). Have you had that done?

It does sound unlikely to be prostate cancer from what you've said, but that wouldn't rule out a different cancer, so they're right to be checking it out. I don't understand how it's only come to light after your radical treatment though - it should have been picked up beforehand, and factored in to your treatment options.

User
Posted 31 Jul 2019 at 09:50

Andy, you’re right and I had to laugh when I read your comment! On diagnosis day consultant told me I needed a bone scan. After a few weeks still no appointment. Followed it up and local hospital had decommissioned the scanner. So I had to go to another trust for it. On day scheduled for surgery report had still not arrived so consultant, based on other results decided to go ahead with surgery. The day after surgery I asked junior doctor if the results had arrived, he said ‘yes, it was all clear’. Happy days. On discharge day the same junior dr came running to see me after the Drs rounds, and said, ‘we found a couple of lesions in the bone scan, you’ll get the results in the 6 week check’. You can imagine how I felt. The consultant came back to see me, it turned out all they had was a written report from the other trust, no images. He was furious with his junior.

Consultant believed and still does that the bone scan will be non cancerous, given my other data. I believe that he is being so cautious now because of the above and that’s why I am seeing more people, but I may be wrong.

User
Posted 31 Jul 2019 at 11:53

I think you need to lodge a complaint with the hospital.

The way your diagnosis and treatment have been handled is appalling, with the most basic of mistakes. You might have gone down completely the wrong treatment path (although you don't yet know if that's the case, and it might not be). I would want to be referred to somewhere else for the rest of my treatment after such a basic cock-up. Others here might have a view on how to do that, if you want to.

User
Posted 01 Aug 2019 at 09:07

There is a theory that having the main tumour removed can improve outlook.  My own wish was to have surgery even if the bone scan was positive although it was probably unlikely.  That they properly analysed your prostate and removed lymph nodes is good.  Also it is possible for you to still have RT.

Although you're naturally worried it might not be as bad as you think.

It does look like the bone scan has been badly managed but you may be better waiting for the outcome of further tests and making the hospital feel they owe you something rather than creating hostility.  It might also be that the bone mark appeared late and would not have been found earlier.

User
Posted 01 Aug 2019 at 10:40

Pete and Andy

Many thanks both for your replies. I shall probably adopt a wait and see approach. Although I am assured that making a complaint does not affect treatment I remain to be convinced.

 I do wish to make the Trust aware of certain communication issues anyway so I shall see what develops in the next few weeks. As Pete says, it could be useful having the Trust think they owe me something.

Rob

User
Posted 05 Aug 2019 at 07:17

I have my oncology appointment next week and I have to admit it’s really messing my head up. Because I have always been told that I have localised cancer I decided to read up on advanced , and I wish I hadn’t. I wasn’t really overly nervous when I went for my initial diagnosis because I ‘knew’ I had cancer, I was more nervous going to my six week follow up. I am far more on edge now as I have no idea what to expect.

Going to be a long week.

User
Posted 05 Aug 2019 at 17:05
Many of us experts on worrying after doing research. It is natural and you just have to ride through the fears and rely on the actual results.

As for the hospital failures might be worth having a casual chat with one of your assigned onco nurses to sound them out.

User
Posted 18 Sep 2019 at 16:54

Just thought I ought to let you all know that I had to go for a PET scan. Fortunately this has come back clear, the mark on my pelvis is benign. So they’ve told me I am clear.

First review is due the week before Xmas.

Such a relief.

 

Rob

User
Posted 18 Sep 2019 at 18:04

That's really good news.

User
Posted 18 Sep 2019 at 19:02
Great news, Rob!

Best wishes,

Chris

User
Posted 19 Sep 2019 at 18:52

Good news Sub, wish you well.

Late in the day I was told I had a positive from my bone scan in my right eyebrow.... I had walked into a door 2 weeks before and it was inflammation!

 

User
Posted 20 Sep 2019 at 21:44

Great news, I'm sure you are a very relieved guy.

I'm booked in for a 2nd MRI on Monday, had  1st MRI early August which showed  PI-RADS level 4 lesion, TRUS biopsies gave Gleason 3+3 left side, 2 5mm cores OK, 4+5 right side 6 9mm cores 60% overall coverage with PNI. Follow up bone scan at end of which had to have neck X rays. Got the results on Thursday 12th September, there are lesions on my Cervical spine which need urgent investigation, hence the MRI on Monday.I've got a longstanding neck injury so I'm hoping it's just that showing up but should know one way or another. At the moment, surgery is "off the table" apt expression! & I am trying to move Hospitals to be nearer home for ongoing treatment, this is proving to be a right pain in the proverbials as it's different PCT's (or whatever), so far it's been about a month to establish who should make the referral ( it's actually  the Consultant who has to make the referral if the patient is already receiving treatment should anyone need this information). So roll on next week.

Cheers Steve

User
Posted 20 Sep 2019 at 22:41

Good luck Steve. Yes I was very relieved indeed. I sincerely hope it’s your old injury showing up. They’ve just put mine down to a benign mark which I could have had for years.

Best of luck moving hospital, I’ll be thinking of you. I’m going to make the most of the next  three months before all the old feelings well up again with the PSA test before Xmas.

 
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