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Starting to worry a bit now!

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User
Posted 28 Mar 2019 at 15:28

Hi Everyone,

Age:52 No symptoms at all, PSA done as part of 'Well man' check up. 28th Jan 

26th Feb PSA 8.2, DRE by consultant right lobe moderately enlarged, felt irregular but not typical of cancer. Being sent for MRI

MRI 21st March

Results: Phone call by consultant last night, said right side needs looking at so come in for a biopsy 2nd April also an anal lymph node needs looking at!! and would I be ok with a bowel specialist giving her a second opinion regards the node.

After looking through these posts I was ready mentally for a prostate cancer outcome if it came to it but now that the consultant has mentioned an abnormal lymph node and the need to see another consultant I am getting a bit worried!

My partner was crying her eyes out last night and I was being my usual pragmatic self saying don't worry, it will all be fine etc but inside I'm a little worried.

Has anyone else had no symptom's at all then had other doctors have to look at lymph nodes etc?

Like I said I only went for a PSA test because I thought I might as well, totally fit, no history in the family, BMI 21 etc I was shocked to say the least!  

I'm planning on the worst but hoping for the best  next week.

Edited by member 28 Mar 2019 at 15:44  | Reason: Not specified

User
Posted 01 May 2019 at 17:35
The Choline pet scan tracer has to be bought in from someone with a cyclotron who is not too far away from your hospital as it has a short half life. It is specifically produced for an individual, I think, determined by the body weight of the person. It frequently fails to meet the required standard, (as in my case) but fortunately it was early enough in the day that a replacement was able to be made and staff stayed on to administer mine and operate the scanner. Very few hospital have a cyclotron. The Christie has one at Manchester but whether they would use it for supplying other hospitals is doubtful.

A similar situation applies with the tracer for the 68 Gallium PSMA scan which also has a short half life although it is produced by generator rather than a cyclotron. The machine that was used to supply the London Hospitals that offer this scan broke down immediately before my first scheduled PSMA scan which had to be rearranged on another day so all the London hospitals could not perform the scan during the affected period.

These costly producers of the tracers can only make limited amounts of tracer each day, so it is likely that in general one hospital gets it's supply from the supplier on a Monday, another on a Tuesday and so on. So hospitals can only in the main provide the scan on the day of allocation, hence they only regularly do the scans on their agreed day.

In Australia a leading Professor said that there they only used the Choline scan for abouts six months before abandoning it for the much better 68 Gallium PSMA one. It seems to me that we should be doing the same and have some strategically located generators provided at or close to major UK hospitals in the large towns that would also provide reciprocal back up for those hospitals but apart from other considerations, this would be very costly. Then having said that, there is another scan developed in the USA which looks like it will be even better than the PSMA one but this needs a cyclotron!

I trust this goes some way to explain delays and why scans at your hospital are generally limited and done on a certain day, something that is beyond the control of your hospital.

Barry
User
Posted 28 Mar 2019 at 17:28
Think of it as an “MOT test” for the body. It’s pretty common for entirely unrelated conditions to be found during prostate cancer checks. That’s a good thing - they’re far better found than not. In my own case, for example, like you I had a random PSA test last May (no symptoms of any sort) and the various scans found not only localised prostate cancer but also unrelated localised kidney cancer and an arterial aneurysm, either of which could have very well killed me had they not been accidentally found. Here I am 10 months later with everything (hopefully!) fixed. So whatever your tests may or may not find, be thankful if they are indeed found!

Cheers,

Chris

User
Posted 12 Apr 2019 at 17:53
The normal reason for recommending RT is when there’s doubt that surgery can remove all the cancer. For surgery to be successful there needs to be what’s called a “negative surgical margin”; that is, tissue that’s completely free of cancer surrounding the cancerous tissue that’s removed. Without a high probability of achieving this, a surgeon will be reluctant to operate and RT (which can treat a wider area) will be recommended.

Cheers,

Chris

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User
Posted 28 Mar 2019 at 17:28
Think of it as an “MOT test” for the body. It’s pretty common for entirely unrelated conditions to be found during prostate cancer checks. That’s a good thing - they’re far better found than not. In my own case, for example, like you I had a random PSA test last May (no symptoms of any sort) and the various scans found not only localised prostate cancer but also unrelated localised kidney cancer and an arterial aneurysm, either of which could have very well killed me had they not been accidentally found. Here I am 10 months later with everything (hopefully!) fixed. So whatever your tests may or may not find, be thankful if they are indeed found!

Cheers,

Chris

User
Posted 28 Mar 2019 at 18:44

To be fair that's a very good way to look at it.

 

User
Posted 02 Apr 2019 at 13:30

Had the Trus biopsy this morning, no problems with the procedure, a little sore now the anesthetic is wearing off. I asked the consultant about the MRI and she said Pi Rad was between 4 and 5 so not sure if that definitely means I have cancer or not. Still on urgent bowel referral to check lymph node near bowel so just got to see what they say.

Prostate height 28mm

Volume 22.4 - is that big? Or normal?

Am I right in thinking that if my prostate is normal size and have 8.2 PSA then probably it is cancer producing high PSA?

Still hoping for the best but not looking good!

Edited by member 02 Apr 2019 at 16:30  | Reason: Not specified

User
Posted 02 Apr 2019 at 17:48
A PIRAD score of 4 to 5 means that the radiologist has seen what looks very like cancer on the MRI scan. The biopsy will confirm it - the only way to be certain is to actually see the cancer cells under a microscope - and will also deteriorate how aggressive it is (the "Gleason score").

Try not to worry about it too much. Localised prostate cancer is eminently treatable and from the sound of it it's probably been detected at an early stage.

You may be referred for a bone scan. That's purely precautionary and just to check that any cancer hasn't spread elsewhere.

All the best,

Chris

User
Posted 02 Apr 2019 at 18:24

Originally Posted by: Online Community Member

 

Prostate height 28mm

Volume 22.4 - is that big? Or normal?

 

If anything, your prostate is a bit on the small side. Bodes well for you - there are some treatment options that are less likely to be offered to men with a very large prostate - having a small one means that hopefully, all treatments will be available to you. 

 

Re PI-RADs risk matrix:

  • PI-RADS 1: very low (clinically significant cancer is highly unlikely to be present)

  • PI-RADS 2: low (clinically significant cancer is unlikely to be present)

  • PI-RADS 3: intermediate (the presence of clinically significant cancer is equivocal)

  • PI-RADS 4: high (clinically significant cancer is likely to be present)

  • PI-RADS 5: very high (clinically significant cancer is highly likely to be present)

 

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

User
Posted 02 Apr 2019 at 20:55

Thanks for that, I must be the only person on here with a small prostate! Lol gives me some hope https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-smile.gif

User
Posted 02 Apr 2019 at 21:08
It’s a real benefit. I have quite a large prostate, and any treatment that makes the prostate swell up (such as a biopsy and subsequent radiotherapy) has caused me significant problems as it’s severely restricted urine flow.

Cheers,

Chris

User
Posted 02 Apr 2019 at 21:11
John's prostate was 22cc at diagnosis
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Apr 2019 at 21:28

My urologist said to me 30cc is what they regard as typical after puberty, but as prostates often start slowly growing again from around age 25, they see prostates up to 120cc depending how fast any given person's prostate grows and how old they are.

User
Posted 02 Apr 2019 at 21:29

Mine was 70cc https://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-smile.gif - hence the problems!

 

User
Posted 02 Apr 2019 at 22:30

94cc here at diagnosis.

I didn't get the impression size itself is any indication of anything much, except it pushes into the bladder and can make you feel like you need to pee more often. I could see it pushing in to my bladder when they did a flexible cycstoscopy during my original one-stop visit and I was looking at the inside of my bladder on a monitor - the urologist commented it was large, but size wasn't known at that point. However, I didn't suffer any urgency or need to pee frequently, although any new consultant I see always asks that when they see my details, presuming the answer is likely to be yes. The other thing is that 'normal' PSA level is usually scaled for prostate size.

I had another MRI recently (whole body) after 6 months on HT, but unfortunately they didn't specify the size in that report. I might ask.

Edited by member 02 Apr 2019 at 22:33  | Reason: Not specified

User
Posted 11 Apr 2019 at 12:57

Had an appointment with the consultant today regards my results.

Not the best to be honest, Gleason 7 and bulging out ( but not necessarily broken through) on right side. Bowel specialist reckons the node may be from protate cancer as it's on right and nothing to do with bowel.

She has booked me in for a PET scan to see if the node or even more nodes are spread cancer or something else.

Also told my treatment would be hormones, radiation and chemotherapy if nodes are cancerous. Told MDT says operation was not an option!! nor brachytherapy because of how cancer is. I do trust her and asked if it was you sat in my chair would you be happy with this treatment and she looked me in the eye and said absolutely.

Well hoping the PET scan is clear! 

User
Posted 11 Apr 2019 at 13:17
Sounds as if you're in good hands. Don't worry too much about the bone scan - it's entirely routine and with a PSA as low as yours the cancer is unlikely to have spread to the bones.

I've been on the HT+RT route myself: HT started last August and I completed RT a fortnight ago. It wasn't nearly as bad as I was anticipating - relatively mild side effects.

Very best of luck with your treatment.

Chris

User
Posted 11 Apr 2019 at 13:33
I think the question you asked the lady urologist if she would be happy with the suggested treatment, is slightly inappropriate as she shouldn’t have a prostate, like me (now), but who can tell with all this transgendering these days?😉

She has however put you on absolutely the right course with a PET scan for possible metastases. A Choline scan, I suppose? There was newspaper talk this week of Choline shortages, Brexit maybe? No, factory maintenance........

I hope your scan comes through soon and your hope is fulfilled.

Best of luck for the future.

Cheers, John

User
Posted 12 Apr 2019 at 16:49

Just out of interest, what are the usual reasons for an MDT saying HT/RT is your only choice? I asked about RP / Brach and was in no uncertain terms told they were not an option!

Is it age, bulge, small prostate 22mm, only on one side? Because this course of treatment was without them seeing the letter from bowl specialist saying that my 'hot' node was probably to do with prostate cancer not bowel.

It's amazing what you wish you had asked at the appointment!

User
Posted 12 Apr 2019 at 17:53
The normal reason for recommending RT is when there’s doubt that surgery can remove all the cancer. For surgery to be successful there needs to be what’s called a “negative surgical margin”; that is, tissue that’s completely free of cancer surrounding the cancerous tissue that’s removed. Without a high probability of achieving this, a surgeon will be reluctant to operate and RT (which can treat a wider area) will be recommended.

Cheers,

Chris

User
Posted 30 Apr 2019 at 16:59

Just a rant :  I cannot believe it, my PET scan at Nott City Hosp has been cancelled for the second time on the day! First one was 7th then today both same excuses that machine that makes radioactive isotope in London has failed. I'm really pi$$ed off because my treatment cannot start until this scan is done and there seems no back up plan each time there's a cancellation! What if the machine breaks again? I get cancelled and my treatment gets set back another 2 weeks. I'm already 4 weeks behind starting diagnosis of Pca and no curative treatment at all.  Rang In Health complaints line who run it for NHS and they said 'nothing to do with them' because they cannot find me as a patient  ( Its their PET team that keep ringing to cancel) I have to complain to PET scan team. I dont fancy complaining to the staff who are going to do a medical procedure on me! 

It's also the fact I keep taking time off work and preparing for it.

Edited by member 30 Apr 2019 at 17:01  | Reason: Not specified

User
Posted 30 Apr 2019 at 17:17
Sadly this is very very common. It took me 3 attempts to get a Choline PET at Oxford and 3 attempts to get my PSMA PET in London. It really isn’t their fault but annoying nonetheless. I racked up quite some bill in train fares , hotels , parking , petrol etc.

If life gives you lemons , then make lemonade

User
Posted 30 Apr 2019 at 17:51
The fact is, producing the tracers that are used in these PET scans is very difficult and they have a very short shelf life so if it goes wrong, that is everyone's scan cancelled for that day.

Presumably your onco has already got you on HT so it's not that you are getting no treatment while you wait.

Third time lucky?

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

 
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