Starting to worry a bit now!

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 18:35

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 18:53

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

Show Most Thanked Posts

User

Posted 28 Mar 2019 at 17:28

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 14:30

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 17:30 | Reason: Not specified

User

Posted 02 Apr 2019 at 18:48

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 19:24

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 21:55

Thanks for that, I must be the only person on here with a small prostate! Lol gives me some hope

User

Posted 02 Apr 2019 at 22:08

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 22:11

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 22:28

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 22:29

Mine was 70cc - hence the problems!

User

Posted 02 Apr 2019 at 23:30

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 23:33 | Reason: Not specified

User

Posted 11 Apr 2019 at 13:57

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 14:17

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 14:33

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 17:49

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 18:53

Cheers,

Chris

User

Posted 30 Apr 2019 at 17:59

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 18:01 | Reason: Not specified

User

Posted 30 Apr 2019 at 18:17

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.

User

Posted 30 Apr 2019 at 18:51

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

User

Posted 30 Apr 2019 at 19:46

Not on any treatment at all Lyn!, told no hormones until PET scan done in case it makes scan miss nodes that have shrunk etc. That's why I'm getting so mad, I was diagnosed start of the month, no treatment and keep getting cancelled, if I was on hormones it wouldn't be so bad waiting because I know they stop growth.

User

Posted 30 Apr 2019 at 19:48

Originally Posted by: Online Community Member

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

If you have a Macmillan nurse, contact them and ask.

I have even asked them to create another consultant appointment when I had a lot of detailed questions, and they did that (and it caused my case to discussed again in the MDT beforehand, which is a good thing).

I try to make sure I ask everything by writing down a list of questions, and all the consultants have been fine with that. My current onco even takes the list and writes the answers on it. However, if a consultation starts off with some result I wasn't expecting, then I won't have the right questions, and only think of the right questions afterwards.

User

Posted 01 May 2019 at 11:42

Rung the PET scan team today at Notts City Hosp and explained my frustration at being cancelled twice on the day + that I was not being put on any treatment at all until this scan was done + what if any was the back up plan if I'm cancelled again. She was really nice to be fair and said I was booked in for 10th now, I asked if I could be bumped up the priority from any general scans and she said that 10th was earliest as they only scan on certain days! She said I was on a standby short notice list as I said I would come at anytime. As for any backup plan.......there is none!!!

So 29 days after being told I have local advanced PCa and PET referral I MAY get a scan if the tracer arrives if not I just have to wait again!

Like I said to Lyn I am on NO treatment atm not even hormones because they need to see what the PET scan results are to tailor my treatment.

You couldn't make it up!

Edited by member 01 May 2019 at 13:07 | Reason: Not specified

User

Posted 01 May 2019 at 12:23

I was already on HT when they decided to do a PET scan, so I wonder how much that matters?

The scan never happened in the end because long term nonavailability of the isotope, and they switched me to have a full body MRI scan instead.

User

Posted 01 May 2019 at 15:41

I was supposed to start hormone therapy in October 2016 but my oncologist wanted a PET scan done to see what was going on. Promised me it would be within a couple of weeks. Like you he wouldn’t allow HT to start as the scan wouldn’t pick things upon I was on HT.

I didn’t get a scheduled scan appointment until 20/12/16 and had to wait until 21/12/16 as the tracer failed on the 20th.

I had gotten so wound up I had the bicalutamide at the ready to take when I got home from the scan.

When I saw the oncologist he said he hadn’t realised they only scan 2 or 3 prostate cancer patients once a month and apologised about the delay!

It is beyond stressful and I don’t think my oncologist realised how much. Hope you get your scan over and done with on the 10th. Telephone to see if they can prescribe HT to start after your scan on the 10th.

Best wishes.

Ido4

User

Posted 01 May 2019 at 16:07

I'm not mad at the PET team at Notts City Hospital they were very good over the phone its the In Health policy of no contingency planning, every other company has a contingency plan in case of a critical failure. I sent the following email today to the complaints Dept of In Health Group, NHS England complaints and my consultant.

" Dear In Health,

I would like to make a formal complaint regards the delay in my treatment by your company. I was referred for a PET scan on the 11th April and booked in for a scan on the 17th, this was cancelled on the day, rebooked for the 30th April ( told that was the absolute earliest slot). I was rung 3 hours before scan and told it was cancelled again, same excuse that machine producing tracer broke/failed!? I have rung this morning to explain that I am not happy with the delay and told earliest slot is 10th May 19. I asked what the back up plan was if it 'fails' again and I was told that I would just be cancelled again there's nothing they can do! I find it absolutely amazing that In Health has no back up plan, I would like to know if the building had a fire and could not produce tracer for 2 months what would be your plan?

I have been told I have local advanced prostate cancer and advised not to have any treatment at all until this scan comes back so that my treatment can be tailored to my needs so you can understand my frustration and anxiety that 29 days after my referral and 2 x on the day cancelations I 'may' get a scan if I'm on a lucky day and the machine works!

In fairness to your staff at the PET scan unit they have been nothing but understanding and helpful, it is In Health who this is directed at because you are paid a lot of money for your contract with the NHS and you are not delivering a robust service.

If my unchecked cancer has spread more then it had from when I had my MRI scan because of your delay in my treatment due to no back up procedures I will take this further."

I received this back:

"I am writing to acknowledge receipt of a copy of the complaint you raised via email to our Complaints mailbox on 1st May regarding the cancellations of your PET-CT scans.

I am sorry to hear you have had reason to complain and would like to reassure you that I have asked our Head of PET-CT, to conduct a thorough investigation into the events. In line with our complaints policy, we will investigate the issues you have raised and hope to be in a position to respond to you in full within 20 working days. If we are unable to complete our investigations within the above timeframe we will write to you and explain the reasons for this and inform you of our expected completion date.

Please find attached a copy of our complaints leaflet which I hope will help address any questions you may have in regard to this process.

If you have any further queries, please do not hesitate to contact me and I will gladly assist you.

Yours sincerely,"

I will post any updates, the PET scan system sucks and if I can make any part of the system better for others then I will be happy.

User

Posted 01 May 2019 at 18:35

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 02 May 2019 at 10:04

Thanks Barry,

This gives me some good background knowledge for when In Health PET Scan boss communicates with me. At least I will sound like I know what I'm on about and he wont be able to fob me off so easy 😌

User

Posted 02 May 2019 at 13:16

As I forewarned you earlier, radioactive isotopes ☢️ are notoriously difficult to manufacture, due to their necessarily short half-lives of a few hours or less. You wouldn’t want the likes of Thorium 232 pumping round your bloodstream which has a half-life of over 14 billion years!

However, there seems to be no shortage of Uranium-235 or Plutonium-239 when required for nuclear weapons, so I guess it’s just a question of lack of money invested in the production of these tracers, together with a 20% increase in population and commensurate increase in demand for NHS services.

Why doesn’t the multi-billion pound NHS invest in their own cyclotrons or whatever, (and proton beam machines for that matter), rather than outsourcing them to private companies?

This nuclear medicine, as it is called, is at the cutting edge of technology.

Anyway, I was diagnosed with G7 cancer in January 2018, and I explored all my options until my prostatectomy in June 2018. They say PCa is often slow-growing, and yours probably is, so a few weeks here or there are unlikely to affect your prognosis, but not your nerves!

Best of luck, once again.

Cheers, John.

User

Posted 02 May 2019 at 15:43

Well......just got off the phone with the PET scan UK operating officer for In Health, very nice bloke, apologetic and spent 10 mins explaining about why things get cancelled and future options to make their service more robust etc. Glad I had all your guys input regarding Cyclotrons etc as I found it useful when asking why they had no contingency planning and risk assessments of procedures etc. He asked me if I was available tomorrow afternoon ( pulled forward 1 week early ) and he would have extra tracer made for me and fit me into their schedule. Result! 😄

If it gets cancelled I bet they will be pulling straws on who has to ring and tell me lol

User

Posted 02 May 2019 at 18:15

Couldn't be more pleased. If you don’t ask you don't get!

I have found the NHS to be brilliant in my case and with others, but I find you have to be completely proactive to get things done satisfactorily. A phone call to the consultant’s secretary is usually the first port of call.

Best of luck tomorrow, and if successful, the scan will give you and your medics more idea of where you stand.

Cheers, John.

User

Posted 12 Jun 2019 at 16:36

First appointment with chemo onco today. Starting 6 x 3week chemo sessions 27th June then the plan is scan then radiotherapy Nov time. Hormones dont seem to be giving me too many problems, libido diminished but not disappeared, ED clinic booked for 24th Aug as my erections are not as hard anymore, tried some cialis and that helped.

Anyone had any major probs with the chemo?

User

Posted 12 Jun 2019 at 17:50

So, Wart,

You have had a positive diagnosis of PCa?

If you amend your profile to include all your results, the good people here will be better informed to tell you what’s what in their experience as to how it’s likely to pan out going forward.

Best of luck with your treatment.

Cheers John.

Notification

Join the online community now.