Bone met biopsy - what to expect?

[spw1]

We are driving to London to have an MRI scan to check eligibility for phase 1 trials. My husband was told that if the scan shows an active met that is accessible, they will biopsy the met for analysis. What should we expect? The drive home is over 5 hours. I will be driving him but we need to plan and need to understand if he will be able to cope with the drive home as a passenger or not. Should we look to stay nearby to the hospital for a few days? How painful will the episode be? Thanks

[Seasid]

I would book into a backpacker. You will have some change and that is a good thing. You may find a section with a free food. All backpackers have it.

[spw1 in reply to Seasid]

Thanks. Is backpacker like a hotel?

[Seasid in reply to spw1]

I was living in Sydney in a YHA (youth hosteling Australia) called Sydney harbour YHA. I assume they exist in UK also. It is like a chain and they don't discriminate against race, faith and age. You should see yourself, this is only a possibility and idea. Everything should be worked out on the field. The best would be to book online or contact them directly.

Good to know. They may even have private double rooms if you want one.

[spw1 in reply to Seasid]

Ah ok. We used to use YHA when we did long walking holidays. We have friends in London too. It will all work out, I am sure. I wish that the PCa itself was easy to work out.

[Tall_Allen]

It depends on location, but most guys I know who've had one didn't feel much pain. It's just an 18 gauge needle, like when they did a prostate biopsy.

[spw1]

Thank you.

[EdBacon]

I went through one. They give you some good local and IV meds so you are not completely out and can move around when they need you to. I was a bit sore after the meds wore off and had some swelling, but that's about it. I wouldn't drive afterward, but think you should be able to go home.

[spw1 in reply to EdBacon]

Thank you. That is very helpful.

[cesces]

Phase 1 is basically a test for toxicity and side effects. You won't even get the proper dose, and it's effectiveness at this stage is at best speculative.

If you didn't already know this, you should promptly part ways with anyone who led you to believe otherwise.

Unless you are hopeless, you need a much better treatment plan than this.

"The purpose of Phase 1 is to ensure that the treatment is safe in humans and to determine how and where it distributes within the body. This testing normally takes place with a small group of healthy volunteers. The trial sponsor monitors for potential “serious adverse events”— that is, any toxic, undesirable, or unwanted effect that causes death or danger to health, like a disability or permanent damage, birth defect, heart attack, or other serious medical condition."

[spw1 in reply to cesces]

Thank you. I agree with you about the risks. At the moment Docetaxel has not shown any success. The NHS MO in the local hospital has been reluctant to switch to Cabazitaxel and Carboplatin combo that T_A suggested. We were told that there was no clinical progression (not true as symptoms are getting worse) and that unless we sign another piece of paper in the hospital it could not be done (that they avoided by giving us a telephone appointment 4 days before the infusion was due).

We are preparing to check eligibility for trials at this time only with a view to having something in case Cabazitaxel is offered alone (and does not work) and going by the last PSMA scan there was not a huge amount of PSMA expression and so Lu177 does not work (or India is a step too far to go for it due to symptoms). The trial gives us hope and, at this time, also further investigations. They are doing better imaging and blood tests. The local MO has now done a bone scan which shows progression of the mets bilaterally into the femur and possibly tibial plateau. But there is no CT scan done at the same time so we do not know about soft tissues. If he were to suggest RA223 based on bone scan alone, we might be working out a treatment plan on inadequate evidence.

The trial team was very considerate and have the funds to do investigations. At least we might know what, if anything, are our realistic options. Nothing specific will be offered until after these investigations.

[cesces]

I'm not familiar with the NHS, but if you can't switch Docs, you really need to find an alternative.

If in fact you are being treated in the dishonest way you say you are, there is likely worse treatment of you that you are unable to rule out.

Maybe try US, Canada or Australia for BAT therapy. It needn't be to expensive beyond the initial visit. And you really need another set of eyes to look at you in any event.

[spw1 in reply to cesces]

Dishonesty is not quite it at an individual level. I put it more at a level of systemic failure and incompetence. The system is not set up to succeed but to manage budgets and within those constraints several hospitals have protocols not to give up on Docetaxel until it is tried 4 times. Cabazitaxel is patented and expensive. If Docetaxel is not working, there is no point in expecting a different result by repeating for the few patients for whom it does not work, but there may not be discretion available to individual MOs. We are talking to the MO on Tuesday as 5th Docetaxel is planned for this Saturday. Hopefully they will change to Cabazitaxel. BAT was advised against so far in Canada and the UK. We are also in touch with various experts in India as we will be able to afford to go there privately.

[NickJoy in reply to spw1]

This seems to be a constant theme with NHS which is a shame with so many good people working within it. I hope that you can find some good advice in London. Very best of luck.

[spw1 in reply to NickJoy]

Thank you. The Royal Marsden team were impressive.

[NickJoy]

Would you mind letting us know which trial you decide on? I'm always looking for options. Thank you.

[spw1 in reply to NickJoy]

I will post something when we know what is offered.

[Seasid in reply to NickJoy]

But better not a phase I clinical trial.

[NickJoy]

Thank you.

[Seasid]

How can an MRI scan show an active bone met? I always thought that only the PSMA PET scan can detect a cancer? I am confused because I repeatedly ask my MO for an MRI scan but he always refused to order one for me? He wanted me to have only nuclear medicine bone scans plus CT scans even when my PSA was under 0.2 for years with Firmagon injections alone. Did your husband had also other scans in order to pinpoint the active mets?

I always believed that the CT scan can't definitely differentiate between cancer and normal tissue.

Therefore MRI scan can pinpoint the active mets in the bone? Is it true? What did they say about that?

[spw1 in reply to Seasid]

A new met, I am presuming, will be then available for a fresh biopsy if it is in an accessible area.

[spw1]

I do not know if MRI will show an active bone met or not. Bone and CT scans have not, in the past, been clear about what they show either. The team doing trials is expert in reading MRIs and it maybe that they are not relying on the scan to show activity but to show something new from the previous scans.

[Seasid in reply to spw1]

I assume that it is not your first MRI scan, otherwise how they can compare the scans between CT scan and MRI or nuclear medicine bone scan? You can't compare different scans?

[spw1 in reply to Seasid]

This will be a full body MRI for the first time. We did an F18 PSMA scan in India in June which is the best full body scan we have along with its comparing CT scan. We gave the Indian CDs to the hospital and so they have earlier information. All will be revealed when we get there as we are going by what little we are told. Normally MRI scans are difficult to read but the purpose of our scan is not treatment based - it is to determine the eligibility for trials. The investigations may reveal stuff that is useful but our treatment remains at the local hospital for now and they have only ordered a bone scan.

[Seasid in reply to spw1]

Well, i am confused about the MRI scan. It is definitely good to have. I believe MRI scans are great but take 3 hour to complete. Good for you. There is no radiation.

[Seasid]

Was the CT scan also full body? Was the head also included?

[spw1 in reply to Seasid]

yes

[andrew61]

I’ve recently had 2 bone biopsies. Both pain free and uneventful. Don’t shower for 24 hours.

[spw1 in reply to andrew61]

Thank you. That is good to hear.

[bandgeek]

I had a bone biopsy from my pelvis as part of my diagnosis. Painless procedure and virtually no recovery or pain post biop. Went home and laid on the couch for the rest of the day.