Just a rant/offloading - no need to read or reply if you don't want to!

Hi Jo - of course it's OK to reply and thank you for doing so. Nice to *meet* you although I wish it were under different circumstances. Thank you for telling me about your experience with the Zometa. I didn't quite hear what he said but I thought at the time it sounded like "Dennis"  which made me lean towards it being Denosumab. Your side effects sound fairly easy to live with though, so that's reassuring. 

I have another phone appointment with him this week so I shall ask him for more information and ask again where the mets are. I have never had my limbs or head scanned. I do get random strange pains in one shinbone and one lower arm - I'm wondering if there are mets there - of course they wouldn't know this if they haven't looked. 

I am going to ask him again on Friday where they are and if he doesn't tell me this time then there IS going to be trouble!  I'm hoping he just decided to let me get over the shock of finding out that they existed in the first place before giving me the full picture which I can understand but I like to get all the bad news at once and then rationalise it in my own way. 

With it being kept from me, it has made me begin to catastrophise again about every little pain and I don't need that.  I don't want to turn every little explainable pain (eg: this headache. is it in my brain or is it the bottle of red wine I drank last night?)  into something major and for that reason alone I think I should be given the full picture. Grrr - I'm getting angry all over again now! So furious that this was kept from me for 18 months!

On the bright side, I did manage to secure a dental checkup which the onc said was needed before I could start these injections. On the down side, I have a dentist appointment next week haha!

Hi MooCoo

I have monthly denosimab injections and have had for nearly 3 years ( with break of 4 months over lockdown). I have had no problems with it, although the list of side effects is long.The injection is simple and I have it in belly, so no pain. When I was told I had bone mets, I asked where and the consultant mentioned sternum, hip and "numerous" other micro lesions which were too numerous to mention - basically saying the cells are widespread but mainly  in very small  areas. Since then CTs have shown stability in the bone mets, it was liver which was more concerning last Nov and why chemo stopped as it was clearly no longer working. Since then I have been on targeted therapy of ribociclib and letrazol. The bone mets have so far stayed stable and the calcium tablets along with denosimab hopefully keep my bones strong enough. So good luck with your meeting, and hope you get treatment plan sorted.

Hi ownedbystaffies - thank you so much for the first hand perspective and so glad to hear you have some stability. I think I'm definitely going to go for it, should the dental checkup permit it. We have to take every chance we're given, don't we? 

I just hope he'll both tell me where the mets are and tell me how my liver is doing. I feel I need to know. 

Hi MooCoo,

I'm struggling to read the thread at the moment so I don't know if you have been advised that you are entitled to see your reports and correspondence to your GP.

I have advised them in advance that I always want copies of my CT scan reports and my blood test results as well as copies of the letters sent to my GP.

These reports and results are the ones that your oncologist receives so whilst they might be difficult for you to untangle the technical language at time it can inform the questions that you want to ask.

You can even get copies of your CT scan on a computer disc but you may have to pay for this.  I did this once 5 years ago when is cost me £10 but i haven't bothered since as i struggled to understand what i was seeing.

When i attend my oncology appointments the oncologist discusses my results before i get my copy of the report so that i get the update from him Then as i leave the nurse gives me my copies and i can study them at my leisure and either e mail them if i have an immediate concern or write down my questions for my next appointment.

It reassures me that I have all the information available.

If you have the contact details for your cancer care nurse I would contact them and advise them that you would like these the next time you attend.

Wishing you all the best,

Gragon x

Hi Gragon and thanks for the reply. Yes, I do know I'm entitled to reports/letters. I have received just one copy of a CT report and a treatment plan and that's it.  I have queried this with the oncology secretary last week and she told me they have never provided copies. I distinctly remember receiving a folder from the same hospital where it was clearly stated that I was entitled to all copies of such. I think I will ring them again tomorrow and try again - I just need to find that folder to back up what I'm saying, though why they don't seem to know this, I have no idea. As it's taken them 18 months to even tell me I have bone mets, I'm still not confident that I have the full story. I really want to know if that's it or if there's anything else they forgot to tell me. 

I'd raise this with the cancer care nurse but I don't have one, unfortunately. 

I just want the full picture of my health/location of mets -- sadly it seems it's not something I'm entitled to. 

Hi MooCoo,

If you have no joy you could always try having a word with Macmillan.  At the hospitals I attend they have drop in centres where you can go for advice although I don't know how they are working with the current covid restrictions.  I'm sure if you rang the hospital switchboard they would be able to put you through.  If they are not available then the helpline could give you some advice.

As far as I can see if the oncology team wont give them to you then you can access them via the hospital data controller although you might have to contact them after each new report or result comes in.  I cant see why they are making it so difficult for you.  The reports are pretty technical and it took me a while to be able to interpret mine.  However the oncologist and nurse were always happy to explain it to me.

The reports are very specific in focusing on the cancer and if something is spotted that is not cancer related they will mention it but will not go into great detail.  I presume if it was anything serious they would advise your GP when they write to them.  I had an oedema in my abdomen but as it was identified as non cancer related it was not measured or mentioned in any subsequent reports.  When I specifically asked about it prior to my second scan after it had been identified I was advised that the scan indicated that it had drained away over the intervening 6 months.  I was left feeling that it was a case of "Not cancer, not interested".

Good luck with your phone call tomorrow,

All the best,

Gragon x

Thank you for your reply and the good luck wishes. I rang the hospital's Macmillan people today but they didn't really know what to suggest other than contacting PALS. So I have sent  a long email to PALS asking for their suggestions and will have to wait and see what they say now, I suppose. 

I don't have any worries about being able to interpret the reports - it's just getting hold of them in the first place! 

I am just waiting for tomorrow's phone call now - I have written a list of the torso bones down so I don't have to try to write  them down quickly and then spend hours deciphering my own scribble - I can just tick off any he mentions - that is, if I manage to persuade him to tell me! 

Well, I'm still none the wiser. I asked again "which bones" but he said again "multiple". I told him that I wanted to know for my own peace of mind, but then he told me he doesn't know.  The report just says "multiple sites". 

He did  however confirm that there appears to be more bone density, suggesting that the treatment is working. I asked him about my liver and the mets are shrinking there too. 

Had to remind him that he'd said I could try Denusomab - he agreed and so the current plan is CT scan in three months, when I will also sign a consent form for the Denusomab.

So it looks like I am going to have to try to get hold of the scans and reports myself.  No reply as of yet from the email I sent to PALS asking how to do this but I only sent it yesterday so that's understandable. 

Hi there moocoo well at least you have some positive news to shout about with your liver and having more bone density with the treatment working on those areas however I am puzzled when you asked about which bones and he doesn't know!!!!!surely he would have that information in front of him is it in your arms or legs or somewhere else saying multiple is not clear in my book and I would want to know where exactly in the bones I am being attacked so if I had pain in my arm and was told it was in my arm then I would know that's why I have pain in my arm in my way of thinking of you know what I mean in my usual waffling way to try and explain I really do hope you can find out as I would want to know and me personally couldn't wait for another 3 months for the result of the next scan i would try phoning up the hospital again to try and book an appointment to discuss this issue take care xxx

Hi MooCoo

I agree with my good friend Popgate that he should know or at least find out which bones are involved. I think (and this phrase was around when I was growing up in Belfast in the 60s and 70s) he's a dead loss!!!

It seems like you're having a DIY cancer treatment, hinting at what he should do next.

Tvman xx

PS this is my second posting, the first one I had to edit it then when I clicked on reply, nothing happened. So I clicked again and there were 2 replies. The first one, and the edited one. I then went back to the first one and deleted it, and I'm sure you can guess, yep! They both disappeared!!!

Doesn't this site get on your wick?

Tvman xx