Hello hellodolly, There seems to have been a lot of activity in this group recently so I’m just answering your post to bump it back to the top in the hope that it will be noticed and someone can reply with the experience your looking for. It may help if you say a little more about what your wanting to hear about and to introduce yourself maybe, as there is a great new champ that recently started helping in this group. (I’m just popping in from my usual group as I hate to see an unanswered post, as cancer hard enough isn’t it)
welcome to the Prostate Cancer group. Sorry to hear of this case which I assume is secondary prostate cancer which has spread to the bone of the skull.
I didn't respond to your post earlier becuase I have no expereince of this nor do I know anyone who has. I believe it must be quite rare, though of course it is possible.
If you could just give some more detail of who this is actually affecting, the history behind it what is currently happening, I will offer you what information and support I can.
Thanks Tim for replying. If you read my profile page you will see the journey we have been on. We were never given a report of my husbands condition and it took me 9 months to pluck up the courage to ring the cancer nurse to ask what bones it had spread to and his Gleason score.It was never mentioned that it was in the skull or ribs which I remember saying that I thought it might be in the ribs but was told no.It was only when I phoned and asked again for travel insurance purposes it was mentioned. Just really baffled.
Thanks for your reply and I have now read your profile.
It does appear as if you have hardly been given any information at all and I appreciate how difficult this has been for you.
The trouble is, the first time you’re diagnosed with cancer, you’ve not been through it before
I’m sure they probably said, “have you any questions?” but you don’t know what questions to ask!
I can give you some tips on what questions you could ask, and how you can find out more, but it is up to you, I’m afraid, to be assertive enough to ask them. I doubt anyone will take offence at you asking.
I imagine that your husband has regular appointments with the oncologist. And you can ask your questions then. I suggest you write them down and take them with you. From personal experience, I do know that when someone is diagnosed with Prostate Cancer (PCa) by a urology department, they are allocated a “key worker” usually a Clinical Nurse Specialist (CNS). I’m not sure if oncology departments do the same. This nurse is a “single point of contact”, if your husband hasn’t been allocated one, then I suggest you ask for one, it makes it really awkward if you get someone different every time.
As regards your husbands diagnosis, he would probably have had various investigations and scans. These would have been carried out to confirm the diagnosis and to see how “advanced” it was. This is referred to as “staging”. There are several staging systems, in the UK in my experience they tend to use the “TNM” system for prostate cancer.
T = tumour
N = nodes
M = metastases
Your husband would have possibly several PSA tests and a “Digital Rectal Examination”, which would have raised suspicions that there might be a cancer. This may have been followed by an MRI scan or a Biopsy. It is recommended that the MRI comes first, but this is still not the case everywhere. The MRI would indicate if there was something suspicious and locate where it was, the biopsy would confirm that it was cancer.
The biopsy gives the Gleason score, you say this was 4 + 4 = 8. I don’t know if you were told exactly what this means, but it does mean that the cancer is “High risk” or “Aggressive”
You should have been told what proportion of the prostate gland was affected by the tumour and whether it had broken through the prostate capsule. However, this is now largely a matter of interest rather than anything else.
Your husband would have had a bone scan and possibly a CT scan. Bone scans are good for identifying abnormalities in bones and CT scans abnormalities in soft tissues e.g. muscles and organs.
After all these a TNM score is given It doesn’t sound as if you were told what this was. So this is something that you might like to ask. You might also like to have it explained to you.
The bone scan would have identified any spread of the cancer to any bone and it should say where exactly. You might like to ask for clarification of that.
If there was a CT scan, you might like to ask what that showed.
You can click here for a web page, where, if you wish, you can download a booklet called "Having tests", which explains the tests and the staging.
I think it’s bad enough being diagnosed without then not really having enough information about what’s going on.
Further than that, you might like to ask what’s the aim of the treatment your husband is being given and what the outcome of it might be.
If your husband's cancer has spread to his bones then he has advanced (metastatic) prostate cancer.
If you click here this will take you to a page giving information about this.
It does sound as if your husband is responding well to treatment with a very low PSA.
There is another booklet, on Advanced (metastatic) prostate cancer, but it doesn’t appear to be available at the moment. If you call the Macmillan helpline on 0808 80 00 00, they should be able to arrange to send you a copy.
I’m glad that painkillers are working, don’t hesitate to let them know if the pain gets out of control. There are other things that can be done.
If you have any questions I can help you with or anything else you wish to discuss, please let me know.
