58yrs, details in my bio.
I was diagnosed with PCa the week of 23rd Sept ‘24. I’ve just had SPECT-CT bone scan which has unexpectedly shown a hot spot on my L1 vertebra. If it’s not a false positive and is a true met, that would be incredibly rare for my histology and grade.
Oncology registrar explained yesterday that the next step is an MRI. I asked if it would be better to do PSMA PET scan as it’s more specific for PSA secreting mets. He just said they do MRIs first. Not sure if they have a PSMA scanner at the hospital, or if there is just a long wait for it, so considering it privately. May cost around £2.5k but hey, ho.
Has anyone else had this dilemma? I have emailed CNS assigned to me who is excellent and am awaiting a reply.
Thanks
Hello Mr. Birder
A warm welcome to the Macmillan Online Prostate Community - i see you have been "stalking us" prior to joining so you know the score.
I think your Oncology registrar is following the normal diagnostic path by requesting an MRI first before the next course of action. I agree a PSMA-PET scan is the ultimate answer but as you say cost and availability enter the equation here. The thinking being Gleason 7 T2c - slow growing we have time on our hands.
A couple of questions, if you don't mind, have you started treatment yet? and what is your latest PSA?
IF you just have the one "hot spot" where the cancer has gone "walkabout" it should be an easy fix (I have been wrong before) to zap it with a good dose of radiation.
Just a word of warning before "going private" - check with your NHS team first - some don't take too kindly to people going "off grid" and I have seen cases where once back in the NHS system they have been further down the treatment list.
I can't off hand think of any Community members with such a low staging with a met, but I have been wrong before!!
Best wishes - Brian.
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Hi Brian,
Thanks for replying. I have complete faith in my NHS cancer centre, it was just if I needed to expedite the result faster.
The excellent CNS called me back to explain. She said the an MRI can differentiate what the lesion is better then a PSMA scan, which will only show bone cell activity. So if it is a haemangioma, a met or whatever, an MRI is better at identifying it. I have a haemangioma in my thoracic spine, incidentally picked up last year from another MRI for a different matter.
She was very reassuring. An MRI wait time is up to a week whereas a PSMA wait is 3-4 weeks, so I'm happy with that, even though I'm due to see the surgeon before it happens. I saw the oncologist yesterday who went through the non-surgical options for treatment. I'm inclined to opt for RARP, probably late November / early December.
Much appreciated.
Hello Again Mr. Birder
Well that's a pretty comprehensive reply and everything looks like it's been taken into account. I wish you well with your scan results.
Moving forward surgery or HT/RT is a very personal choice and you need to take into account all the potential side and lasting effects as they would affect you. (I didn't have a choice it was HT/RT - I am a wimp so surgery would have been out anyway).
Best of luck and keep us posted as to how you progress.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi Mr. Birder welcome to our club. I am not medically trained but your CT result sounded odd to me and the explanation of something benign sounds much more realistic. Hopefully an MRI will put your mind at rest. Unless you plan to go the whole hog with private I personally wouldn’t go down that route, unless you really do hit an NHS brick wall. I started going private and it cost me time to get back into the NHS. My private urologist suggested I get back and in his words ‘the NHS are better at this than we are’ unless funding is no problem. Good luck, David
Hello Mr. Birder .
My husband has had 2 PSMA PET scans to date to help in identifying where his soft tissue mets, including the lymph nodes, were located as well as confirming that he had no bone mets. The tracer attached to the PSA protein wherever it is located in the body and picked up mets which the MRI's had failed to find.
https://www.cancer.gov/news-events/cancer-currents-blog/2020/prostate-cancer-psma-pet-ct-metastasis
This article indicates that the PSMA PET would pick up a hemangioma in the spine if present.
Thank you, I put that in an email to the CNS who forwarded it to the oncologist. Bit concerned that LNs may have micro-mets so PSMA would pick them up and direct the RARP about which LNs to remove. Let’s wait for the oncology reply.
But thank you all for your reassurance.
Wow interesting, thank you. Confirms MRI is the right thing to do. I’m being discussed at MDT on Tuesday morning, surgeon appt the same afternoon. MRI in the next week but fairly sure it’s nothing to worry about after this discussion and some reading.
Hi Mr. Birder .
The choice of treatment is a very personal one. Get as much information as you can about surgery and the different types of radiotherapy, along with possible focal therapies and balance the possible side effects against what is important to you. Don't be rushed into making a decision and ask as many questions as you like.
All the best for the MRI and the meeting with the surgeon.
Thank you all for your help and guidance.
I met with the surgeon on Tuesday and we discussed RARP. They stopped taking out lymph nodes 5 yrs ago as their data showed an increase in surgical complications (eg lymphoedema) with no significant recurrence reduction. The MRI the following day (yesterday) showed it to be a harmless haemangioma So I am now relieved and happy to go ahead with the prostatectomy. Funny thing to be pleased about, but strange times. Thanks for being here.
Well that is good news that you just have a hemangioma - I like this statistic
Only 0.9-1.2 % of all vertebral hemangiomas expand and become symptomatic
but keep an eye on any new aches and pains, tingling in the limbs or lumps on the spine.
Once you have all the information from scans and biopsy I would suggest that you explore all treatments available before you make your final decision and we have many members who have detailed their own journeys with different routes such as JohnyBoy for surgery and Alpine Wanderer for Brachytherapy boost. My husband had EBRT 4 years ago which remains successful with very few side effects. If you decide on the surgical route then explore the type of surgery offered and the experience of the surgeon as these factors can affect the success of the procedure.
Interesting comment about the lymph nodes and recurrence rate - I am presuming it was in association with low risk tumours. Now the nerd in me is going to have to find the evidence.
Please come back with any questions and feel free to join in any of the discussions.
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