So sorry to hear about all the faf you're coping with right now -- can't remember who you see at Christie's but my onc there is wonderful -- will send you an e-mail with details. Thinking of you and sending many hugs.
Yes I did, admittedly at an earlier stage of treatment.
Would you want to move hospital or just Consultant?
If within the hospital, I would just see the BCN, explain and ask to see someone else.A second opinion is an entitlement.
If you wish to move hospital, just go to your GP, explain why and ask to be referred somewhere else urgently!!
Has anyone ever changed their onc. through choice and how easy was it?
It's not that I think my onc. is rubbish at his job, I just don't think he's right for me....
Not surprised your downhearted who wouldn't be. I'm glad you are able to voice your concerns and needs to the onc and not be overwhelmed by it all, that takes something. I hope you have got friends and family around you to support you
I called Christies - they didn't discuss my progression OR the soft tissue involvement.... apparently the non-cancerous, non-threatening tumour on my ovary was more important.
P@?$ed RIGHT off.
I have an appt. with my onc next week, to discuss everything. They want to remove the growth, so I'l just tell them I want an oompherectomy instead. Get rid of my ovaries and the BIG F'sking tumour attached to it thank you very much.
I'm just so downhearted about the whole thing.
So Sorry about results - hate hearing of anyone going thro cr*p results as know how distraught i was in Dec learning of secondries -that was hideous enough but to be told there's more progression - it just seems so unfair to hit that roller coaster again. And then to be given the run around by the hospital on top! thats inexcusable - bearing in mind we are not exactly talking about the management of an ingrown toenail!!
2 things re: hospital situation
1) - do you have a BC nurse? often much more understanding - mine is great - always busy - but when you are in a crisis she stops everything and gives you time - also she will have a lot more influence than the consultants secretary on slotting you into clinic - i remember mine wanted me in 2 days after my scans to get the results - the secretary said it was overbooked by a mile - she just smiled nicely and said that it would be overbooked by one more then! and that was that!
2) if no joy there go to the PALS service (Patient Advocacy and Liaison service) they will basically submit your complaint for you and ensure a reply from the individuals -
Hope this isn't telling you how to suck eggs!
Best of luck with everything - hope you get some answers soon
I can't believe they admitted to that- I think it is grossly incompetent and inconsiderate of them to do that to you and as for the reason? Ridiculous.
Like others have said letter from your GP wouldn't go amiss. Hope it gets sorted asap for you.
Steph, having had a similarly tourtuous route to my diagnosis of BC that had spread to my tum and bones, I can only empathise.
As if things aren't painful enough, to be messed around just multiplies the angst many-fold.
Take care both of you xx
I was told by a gastroenterologist on 21st April that my symptoms were due to secondary cancer, but it took over 4 weeks after that, during which I had 2 biopsies, and a variety of mdt meetings were held, for me to be told that I was being referred to a breast cancer oncologist. I was then told she was on leave and I had to wait for her to come back and read the papers before an appointment could be made to see her.
At which point I had been waiting over 4 months since I first went to the GP dreading and fearing liver mets only to be reassured and brushed off, and I finally lost my temper. (I'm not normally shy of losing my temper to defend my rights.)
I saw the onc and received my treatment plan within 4 days.
So your delay isn't unique, but I must say the excuse 'there wasn't enough time....' seems more than pathetic for someone in your position.
I hope you hear soon.
I'm so sorry you are upset. I would be too. Do you get on with your GP? If yes you might want to ask him/her to intervene on your behalf.
I've taken out formal complaints myself and sometimes that is the way to go, but it can also make the whole situation more stressful and difficult.
I'm sorry your having to wait,from recent experience,hospitals seem to jump when they find you have put a complaint in.id recommend you do that,its a disgrace making you wait as they dont have time.not good enough !
Good luck and try not to think too much xxx
Poannie, so sorry to hear that you have another week to wait. I always find waiting for any kind of news (results, change of treatment etc) so stressful. I have had to wait a fair time on several occasions but only for really understandable reasons - never because they just haven't had time to "discuss" me.
Will keep my fingers crossed that things will go smoothly once you do hear what the next stage of treatment is.
I am so upset. Apparently they didn't have time to discuss my case at this week's MDT meeting, so I'm going to be talked about next week. I have another week of stressing.
I had my scan on 20 May and they had my results the week after. So almost a month of knowing that I have progression of my cancer, they seem to have no urgency about sorting a treatment plan out. I feel like it's 'well, you're terminal anyway so there's no rush'
Has anyone else experienced something similar?
Thank you all for your comments - thank you for your support.
My MDT meeting is this Thursday morning. My oncologist's secretary said 'I'll type up the results for you on Friday morning, so you should get your letter on Monday' I replied with 'I'll be rinigng you on Thursday afternoon thank you very much'
I think that they will probably biopsy the soft tissue cells, to see if I have a primary there (with my genetic position this can occur) and I reckon I'll be having radiotherapy on my illium too.
Fingers crossed there's no more bad news eh?
Hi Poannie, sorry about the crappy news, I hope there is a plan in place now and you have had a few of the promised hugs to help you deal with it all.
Thinking of you
Damn and drat to put it mildly. As if going for the scans and waiting for the results isn't bad enough. I really really feel sad to hear your news - can't wait to see you monday and give you a big but gentle hug.
Hi again J.
BCC session on Monday starts at 10.00 with "welcome & refreshments", with first item on at 10.15. See you v. soon.
Oh man - I'm so sorry. It seems a long time to wait for your treatment plan - I assume that they are going to discuss your case at a multi-disciplinary team meeting. Hang on in there, lets hope they ome up with something positive.
Take good care sport
Really sorry poannie...know what you mean about keeping the phone off.
Do you know what the next treatment plan might be?
Hard time for you.
So sorry to read your results are not good. Think we all dread getting bad news after scans. Thinking of you and sending lots of hugs.
I am so so sorry to hear of your news- it just isn't fair ever, but for you girl especially, it makes me really angry.
After my dodgy scan result last week, i too have been having to calm myself down a bit. Started treatment yesterday and that always helps me feel that something is happening, so I hope the onc doesn't take too long in coming up with a plan for you. Try and get some rest and keep in touch.
really sorry to hear your scan results are s..t. It is always the news we dread after a scan.
Thank you for your comments..... they do help.
I think Lea was going to arrange to meet up with Carrie on Sunday evening when she gets here, will email everyone and see what's happening.
Is it 9am again at the MacDonald?
Hi J. hun
So sorry to hear about progression, & horrible that you have to wait so long for a "new plan". Do hope you'll feel able to come to the BCC session on Monday -- we'll all need to give you plenty of hugs.
I was thinking about cupcakes and you and then I saw your post. Its the news we all we know we are going to get but its so hard....
Hope you got some sleep, sending you love.
See you on Monday
So sorry the scan results were crap, something we all dread when we've got secondaries. I don't suppose you will feel any better about it today so I don't really know what to say other than 'beat the uggers'. I hope you get more info when you next see your onc and the treatment plan is sorted and this helps.
Like Lily really sorry bowt your results, keep that fone off havea good bawl and then deal with what tomorrow brings and hopefully the options will be more positive than you anticipate, im not sure what it means when its in soft tissue, but if you are like me mind goes into overdrive no matter what people say.
hope you get some positive news from Onc xx
I just saw your post by chance and know it is usually really quiet on here at this time. Didn't want you to have to wait too long for a post back. What b c..p news to get. Had a lot of c..p news this week myself about friends with BC.
Sending you a big hug and if I could I would come round and finish off a few bottles with you to get through tonight. Hang in there and see what the onc has planned.
There is now progression of the cancer area on my left illium (pelvis) and now there is soft tissue involvement along the illium wing. Pissed off. Have to wait a couple of weeks for them to decide treatment/surgery options. Phone is switched off. Not really in chatty mode.
It's not the bone thing that scares me, I already knew it was there.... it's the soft tissue part that worries me..