Questions to ask regarding MRI test results

Hi Maleda and welcome 

I always think that as regards the MRI the most important points are.

Number of tumours, hopefully just one though 

Size in mm of tumour/s

Location within gland IE is it near to the capsule edge.

Do u have any PSA results?

Best wishes 

Steve 

Thanks for your reply Steve, will make sure to include those on the phone call.

Last PSA was 4.3, my partner is early fifties.

Ok , so low PSa,  probably  within the gland, easily treatable 

Good luck

Steve 

Thanks Steve, keeping everything crossed.

Hello Maleda 

Another warm welcome to the Macmillan Online Prostate Cancer Community although I am so sorry you have had to join us.

I think to tell you the MRI has flagged something and not to tell you what it is is very poor practice from your NHS team and I would be bringing this point up on Friday.

Grundo  has made some valid points in his post and I would be asking if it's just the Prostate that has been flagged up by the MRI. You will of course have a much better idea of what is going on from the Prostate biopsy.

At the start of a Cancer journey it's a good idea to ask your NHS team to copy you in on all meeting notes and to have copies of all letters sent from Consultant to GP. If you live in England I would also advise you to download the NHS app if you don't already have it and ask for FULL access to your records on the app. That way you can keep track on all test results and much more.

I hope the above helps - feel free to ask any questions, however trivial you think they are.

Best wishes - Brian.

Hi Brian

Yes, I was quite surprised at the lack of information my husband was given. It was simply that they have seen something on the MRI and a biopsy was required.

He asked if they could send across a copy of results as we were both at work and so he could relay the info to me, and he was refused? Is this normal?

We're in Scotland and unfortunately don't have the app.

Thanks for getting back to me x

Hello Maleda 

Ah Scotland - I love the Country, not the different rules!!

You are entitled to see a copy of the MRI scan but you may have to go via your GP and make a Subject Access Request (SAR) for your records, you may have to take proof of your identity including one with a photograph and it may take up to 28 days for the request to be satisfied.

You never know if you say please and ask nicely they may let you have a copy!! (I always thought it was the NATIONAL Health Service!!).

I hope this helps.

Best wishes - Brian.

Thanks again Brian, hopefully asking nicely will produce the results x

Hello Maleda

The starting point of the journey and getting through the diagnostics is the hardest part. Once you know the full picture, things do settle down and this, in turn, allows the emotions to settle.

The one thing, in addition, to the replies you have received, I would suggest is to ask what sort of biopsy they plan to give. There are two types and I will elaborate:

1. TRUSS biopsy - this is the older form of biopsy in which the needle is passed through the back passage to obtain the biopsies. The down side of this is that they might miss the tumour sites, they can introduce infection with a risk of sepsis and they can't reach all of the prostate. It is usually accompanied by antibiotic cover. I'm not sure whether they use local anaesthetic?

2. Template biopsy. This was just being introduced at our local hospital when my husband was going through the diagnostics 2 years ago. For this they are guided by scans and go through the perineum . The procedure is done under local anaesthetic unless the patient finds it too intolerable when he can request they stop and have a general anaesthetic. They can collect more samples this way and cover the whole prostate and so less likely to miss any cancerous areas and obtain more reliable results. My husband said it was not as bad as it sounds but he would not want to do it every day of the week!!! My husband was given antibiotic cover but the last tie I heard, they were wondering whether they really need to give antibiotic cover as they are not going through the back passage. People who have gone through this more recently might be able to advise.

When you get the biopsy results you will be given a Gleason score which tells how aggressive (or not) the cancer is. From then, your husband is likely to have to undergo at least one scan to make sure the cancer has not spread around the body.

I found the whole diagnostic process very stressful - mostly because our urology department was so badly organised. We had to monitor my husband's progress along the diagnostic pathway with delays at every point. What I learned was that we had to challenge (politely) things like a 3 month appointment postponement!!! We got through it all more quickly by saying we were prepared to drop everything and take any last minute cancelled appointment. I kept a diary of everyone we spoke to, what they said, their names and their direct contact details. This was really useful because, as we went further down the line everything became one big blur.

We learned, too, that it was essential to do our own research and compile a list of questions together before every appointment. I always went with my husband to support, advocate, challenge and try to remember every word that was said. Others here have said they have requested permission to record their consultations.

I hope this helps and I hope all goes well for you both

Hi worriedwife, thanks for taking the time to provide details of you and your husbands experience, that's been extremely helpful!

I definitely feel more prepared as to what to ask on Friday and I will be keeping a diary as suggested