MSCC but no more scans?

Hello PolK 

A warm welcome to the forum - although I am so sorry to find you here.

I think the answer is COST!  The NHS aren't worried about your feelings or anxiety but are worried about the cost.

I think I would be penning an e-mail to the consultant telling them of your anxiety and worry and that you need to know if things are getting better or worse. 

I do hope that you get somewhere with that - you can only but try.

Best wishes - Brian

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Hi PolK .

I have read your previous posts and see that they have thrown the kitchen sink at your cancer and the greatly reduced PSA has shown that it has been successful so far. You are the only person who also has lesions on the adrenal glands apart from my husband that I have come across - he has recently had these treated with SBRT and we will find out how well it has worked when he has an MRI in a couple of weeks. If you still have rods in your back then this might preclude the MRI but I think you should still be able to have a CT scan to check on progress. Even better would be a PSMA PET CT scan but only when your PSA is above 0.2, but more accurate above 0.4. As Brian says, push for a scan and say the not knowing is affecting your mental health.

On another thread you have said that you would have liked to have had a Gleason score but did not have a prostate biopsy. The fact that all your mets have been diagnosed as being of prostate origin would indicate an aggressive form but they would probably have looked at biopsy material when you had the MSCC treated and this would give them the information.

My husband has a rare aggressive form of prostate cancer which means that recurrences happen fairly frequently, as confirmed by a scan, so I can fully understand your need to know what is happening and how well the treatment is working. The first thing the doctors ask is 'how are you feeling' but to me that is no indication of a recurrence. The one reassurance is that they keep saying that they have plenty more tools in the toolbox, one of which relies on whether he has the right genes so maybe a question for your doctors to make sure you have had a gene test as results can take a while.

I hope that you continue to improve. Please come back with any questions as hubby and I are now almost 4 years down the line since initial diagnosis and were initially given a very poor prognosis. He is still going strong with a good quality of life in between treatment cycles.

Hello PolK

i’m sorry to hear that you have had such a tough time with your prostate cancer journey - both mentally and physically.

I would like to add to Brian’s ( Millibob) reply by saying that not offering an MRI might also be due to insufficient resources all around ( staff , scanners etc) to meet demand ( ever more patients needing to acccess the resources)

But that does not solve the problem for you!  So, I wondered too about the possibility of getting a second opinion. I did a ‘Google’ to see what our rights are for getting a second opinion within the NHS. We actually don’t have any rights but what I did find was that different hospital Trusts do publish their policy for patients on getting a second opinion - with most I looked at saying they will permit this. Might this be something you could pursue?

Also, please don’t forget your hospital PALS ( patient advice and liaison sometimes called patient advice and information PILS) team. They should be able to advise and support you.

My next thoughts are, if you had a repeat scan, would it make any difference to the treatment you are receiving? Also, what are the risks of the various scans to your general health? ( I don’t know the answer to these, I’m afraid)

I don’t think doctors always consider the mental impact of a cancer diagnosis on patients and their families and some are far less sensitive to mental health needs than they should be.  

I do hope you can get some resolution and that any scan you do receive will prove that the treatment you have received to date is controlling this darned cancer that affects so many men and their loved ones.

Hi PolK.

Good morning it's great to have you here in our prostate cancer family sorry mind you that we have meet under these circumstances.

Yes my journey started just over 12mnts now and from day one I was put on to HT. My PSA was 1000+ to start with!!!

The HT has worked really well as my PSA is now down to 0.9 which is fantastic news. At the initial consultation we were told that I wasn't "Currable but I was Treatable"

We were told that chemo would be the next step for me but the consultant was concerned that I wouldn't be strong enough!!

To be honest I don't feel much different as I was pre diagnosis which is great news but we are no experts to question this currently.

I can already see that you have started to get some replies from some of our other members and hopefully you should get more over the coming days.

Please please come back to me if there's anything that I can help you with???

Prostate Worrier.

Hi Worriedwife .

Just to pick up on the issue of multiple CT scans, I think the consensus is that there is very little risk for most adults and my personal opinion is that the benefits of repeated scans is that they can act as an early warning system for the development of mets, particularly for high risk patients and those who are low secreters. As you say, cancer should be treated as a physical and mental illness and knowing what is going on and how effective a particular treatment is has a massive impact on mental health and thus quality of life.

So far my husband has had 3 CT scans, 2 PSMA PET CT scans, 1 nuclear scan and over 20 MRI'S without tracer and he still doesn't glow in the dark.

https://www.radiologyinfo.org/en/info/safety-hiw_08

Hello my hubby was diagnosed in April 23 with a PSA of 59.9. he had a bone scan, biopsy and MRI . After he completed his chemo in November I asked about another scan and the oncologist said no they only do a PSA as this is reliable when you have been diagnosed. He would not budge on his decision. He said prostate cancer is the only cancer where they don't re scan as there is no need. Our only option would be to have it done privately. What I don't understand, and I told the oncologist this, is that if the PSA is known to be unreliable how come it suddenly becomes relatable once diagnosed. No answer was given

Hi Shar

you echo my thoughts entirely!!!!

Hi AH , thanks for the clarification. I haven’t followed your link yet but I think some types of scans use a contrast which can negatively impact on the kidneys?

I also know that my husband was told to keep away from our grandchildren for some time ( can’t remember how long) after his bone scan.

Hubby redacted badly to tracers when he had his first scans. He then developed CKD during EBRT and lost some function in one kidney. Theoretically his eGFR has recovered to a level where they say he can have the tracer but as it is not essential I always opt him out of using them with the CT or MRI. The PSMA PET CT can use different tracers which, like the bone scan, mean that you should avoid pregnant women and children for a few hours until it has been flushed down the toilet.