Well after a delay of 4 weeks to actuall manage to get my CT scan today was the appointment with onc for the results - or so i thought.
My appointment wasn’t until 4.20pm so I had all day to work myself up about it. Then when I evenually went into to see her she said that she had the scan results from the last scan but did not have the previous one to compare it to. In fact the one that they had compared it to was June 2008, when I had one in June this year. As if that wasn’t bad enough she actually did start to discuss the fact that my liver had got worse 16 months ago - which is hardy surprising since I have triple negative and am on constant treatment and everytime they change the chemo it has progressed.
The end result was that one of the tumours in my liver is now 8 and half cms, but she had no idea how much that had grown since the previous scan. Even if it has grown substantially she still needed to see the other scan to compare it with before making a decision on what to do next. It really was waste of time, other that letting me know that the tumour is pretty piggin big I haven’t found out anything.
I’m going on holiday on Thursday too, she said she will phone me on my mobile and let me know if I have to continue with the current treatment or if she wants to change the treatment. I’m in two minds anyway my gut feeling is that the current treatment isn’t working very well because of all the bother with my blood I haven’t even being getting half of what I should be and really don’t want to spend the next 12 week worrying about it not working a growing even bigger. So maybe i am just as well moving on.
I feel really cheesed off at the moment, but I know I just have to get on with it. It’s just that everytime I have a pain now I’m going to know that it’s that horrible big tumour that is doing it.
Oh she did say although my liver function wasn’t perfect it was pretty good. Lastly I’ve been on steriods for the last 3 months due to the pain in my liver which is inflamation, the registar told me not to take nurofen under any circumstances due to my low platelets. The steriods have hadm me up all night, now when I see her she says take nurofen - I feel like the right hand doesn’t know what the left hand is doing. I really am beginning to lose confidence with these people!
Sorry but I needed to let of steam! If there are words not making sense in this it’s because my keyboard isn’t working right and it keeps missing out letters.
My good ness - how awful. Reading your post - I just felt I had to reply. At least you know you have people thinking about you. I hope you enjoy your holiday, then when you get back you will have the energy to get things sorted out.
Take care. God bless.
Liz
What a shower - you would think 4 weeks after your scan they would have results and a plan of action - no wonder you are fuming you have every right.
I hope you can relax for a few days on your holiday and that the hospital get their act together and give you some better support. Failing that is there an alternative hospital that you can get a second opinion from?
When I come back my holiday I am going to go to a private specialist and get a second opinion. My friends and family have done a great deal of fundraising on my behalf just in case I needed to pay for drugs licensed but not available on the NHS and I think it’s time to explore this option, although I’m worried that the size of the tumour on my liver is now a major issue with any future treatment.
I’m sorry to hear of this fiasco, Diane. Is there a BCN or someone you can talk to, about the basic conflicting advice over pain relief at least? Good news though, that your liver function is holding up well. I hope you manage to enjoy a good holiday and come back ready for a fight - maybe try and get a second opinion at the Marsden?
I would love to get a second opinion at the Marsden but I live in Scotland so my Hubby Eddie is on the case today to see what he can find out, maybe we will be able to go on holiday at least feeling that we are heading in the right direction - if there is such a thing.
I’m pretty hyper today and have just had words with my Dad, in fact I’ve lost the head with him. He means well and starts talking about an article in the newspaper about radiotherapy. Sometimes I am so involved with worrying about how they are coping it’s not easy when I’m not coping myself. I just wanted scream, do yo think I don’t know what’s available, do you think I can just waltz in with a paper and demand the treatment (which probably won’t be available for 5 years).
I know you all know what it’s like I’m just having one of these days when I feel lonely, that there isn’t an appreciation with how I feel and how I am coping. I know that’s not true and that I bring a lot of it on myself with the front I put on.
All I can say is thank god for you guys! Make me get a grip for my holidays.
I can’t believe the terrible time you are having my heart goes out go you. I attend Raigmore hospital in Inverness and scans never take that long for results, four weeks it outrageous and the lack of concern by your onc is a disgrace. As Jenny suggested is it worth talking to your bcn?
I am just back from holiday and had a bit of a nightmare before I went but I must say my onc and radiography team pulled out all the stops to let me go and Diane it was so good to get away, relax, lie back and forget all this bc shit for a few weeks. I do hope you can do exactly the same it will do you the world of good.
Hi Diane,
well I am not surprised at your frustration we are all with you.I would think you can go to the Marsden for a second opinion so good luck with that. You say you are worried about the size of the tumour and I know we are all different but mine was 12cm and another 7cm at the same time plus lots of smaller ones and they shrank right back once on taxol.
I think your main complaint is that they have kept you waiting 4 weeks so they are wasting time and need to get sorting your treatment out.
When I hve my scans I always ask for a printout so make sure from now on you get that but I think you need to ring onc sec and say you want another word with her and can see ring you at home so you can get the ball rolling.
Thinking of you and your family.
Love Debsxxx
Sorry I missed this last night had my chemo and had to leave live chat as I was falling asleep!
So sorry to hear about the appallingly sloppy way your oncologist has dealt with your case. You do right to get a second opinion and hope you can get something in place before your hols. I blame my secondary diagnosis to NHS inefficiency (won’t bore you with the details) and now see an Oncologist at the Northern Centre for Cancer and even though its a further 1 hrs drive I am much happier and confident with my treatment. My last ct scan was done on a friday and I got the results on the monday, my Onc says the results go straight on the computer so how come your oncologist couldn’t get your previous results off her computer?
Oh Dianne - so sorry you are having such a tough time - I wish the medical professionals realised how much results day means to us - all that emotional energy " hoping for the best and fearing the worst" I am not at all surprised it has left you feeling angry and frustrated - I agree with what others have said here - they can access full scan and get back to you with some answers - even if they gave to do this on the phone - it happened to me last time they had an 'ambigious ’ scan report so had to access actual scan - but they phoned me - maybe you could get on to bc nurse or onc or someone and say you need to know - good luck and i hope you get some answers -
But i also hope you feel ok to enjoy your holiday - and hold on to what you do know that may be a bit re-assuring - like ok liver function - have you got a task ( or the energy) to let out some of your frustrations ??? I pruned an ugly bush in garden when i felt like screaming and made a real hash of it but it took my full pent up anger when i felt i could not talk to family ( who were into denial) if you have no energy this could be hard - Dianne - thinking of you , take care , jayne x
Thanks for all your posts, I am feeling much better now. Debs it’s good to know that your tumours were of a similar size and that the chemo strank them because that was concerning me (not that there is much i can do about it except for accept it).
I explained how frustrated and annoyed I was with the onc and the fact that the results weren’t there. However she says that she doesn’t meet with the rest of the team in Edinburgh until this Thursday so will not be able to let me know whether the treatment I am on will continue or whether to put me on something else. I suspect I will be put on so0mething else, which to be honest i’m not unhappy with as I really don’t think this chemo is working it has had a really bad effect on my blood and the onc pointed out I really am only managing to take a very small fraction of what they would like to give me.
The thought that they might to decide to keep me on this for another 9 - 12 week and then be told that the tumour has grown at a fast rate again doesn’t bear thinking about.
I have been on the phone to organise a couple of things for when i get back, maybe see if SIRT is a option although my tumours may be too big it might be worth asking about. I am going to go and get a second opinion and take it from there. That in itself has made me feel better as I have something to focus on and although I might get the same answers etc I will be going on holiday with the hope that i can get soemthing sorted out.
I really hope I can enjoy a drink on holiday. If i do i don’t mind telling you all I will not be considering my stinking liver in anyway. If it can take the chemo it’s getting thrown at it then it can take the wine and cocktails I intend to through at it. If i feel well enough to give it a good old fashioned pickle then I will. When i say well enough I do feel ok I really mean I hope i have the taste for it because sometimes the thought of drink gives me the boak.
Anyway here’s hoping I can be a bit of a lush this week and let my hair down for a while (short as it is)
Thanks everyone, I feel bad that I am off on holiday when some you are not well enough to anywhre at the moment. I;m just crushing the holidays in while I still can because I know they won’t last forever and it’s important to me to create these little memories for my kids even though I certainly not materialistic.
Debs/Jane
I hope you are on the up or at least start to feel a little more functional on your treatments. I will seriously be thinking of you all and will find out whats being going on in a week when I get back.
Thats the one adavantage of not being able to sleep I am usually on this site at abouy 5 or 6 in the morning finding out how you all are - before the kids and the hubby get up.
Just wanted to wish you a very happy holiday, Diane - hope you manage to enjoy a drink or two (or three!) and really relax, so that you feel ready to face whatever the next treatment might be. Let me know if you want any more info about SIRT.
I am going to see a liver specialist a week on Tuesday, however I trying not to get my hopes up as it could be that he won’t be able to do anything. The process sounds pretty grim but if does the job like it seems to have done with you then i would have thought it was worth it. Is there a chance that you could have went through this procedure and it not worked or was it always going to work - just a case of different people it will work for different times.
I did have a great holiday and felt great, however now ack to normality. I got a new chemo on Friday, well when I say new I had it at my primary diagnosis it’s epirubicen. My onc says that because of the amount of chemo I have had my bone marrow can’t cope with a 3 weekly cycle so I am getting it every week. She oes say it doesn’t change how effective it is I’ve just to get smaller doses. So I will have to see how this one goes - back to the wig!
Glad you had a good holiday Diane and I do hope that the liver specialist comes up with something. I too travel over an hour to see medics that i have faith and confidence in - and it’s been worth it.
My results are also instantly computerised, and most oncs can read these, they havn’t been fully reported on my radiologists, but as i say these pictures can still be read by most.
I don’t think SIRT works for everyone (they also apply fairly strict selection criteria, so presumably screen out those it’s unlikely to work for). It also varies in how effective it is - don’t think that is as predictable.
I do hope though that your liver specialist can come up with some sort of plan for you - be it SIRT or something else.
Well I haven’t been well for a couple of weeks and eventually they have put it to the dreaded swine flu. I must say I have felt really unwell since I stepped of the plane.
On top of that they don’t think that the epirubicin is working so they might have to stop my treatment - my liver function is not right. Although they can’t rule out the fact that they gave me antibiotics for a chest infection that i ended up not having which could be the reason for the results but I doubt it because they were slightly out the week before.
I’ve to go for a blood test and Monday or get someone in if I still have a cough and go for my treatment on Friday - I suspect I wn’t get it and be summons to my oncologists.
I’m a bit worried every chemo is going to act the same as my body doesn’t seem to be able to take it, has anybody else been told that they need to get weekly treatment because its easier on their body ect