Long delays in treatment for secondary BC

I can’t believe how long it has taken from first suspecting I had a problem to actually having anything done about it. I have a tumour that was described as large back in June when it was established what was making me ill ( that had taken long enough ) Had to have an op to relieve a problem it was causing and then waited ages to get referred by them to the oncologist. All the time I can literally feel this lump getting bigger. Hormone treatment didn’t seem to have any effect so now waiting to start on taxol. I feel it’s all just too late to help much and feel totally let down by the NHS - I could have been at this stage of getting some help months ago with a bit of joined up thinking. It’s as if secondary BC is only of secondary importance.
Probably no one will relate to this or even read this but it has helped me to have a good moan!!
Sarcath

Sorry to hear you are having delays - makes me feel fortunate with my prompt responses to secondaries over the last 18 months… have you contacted a breast care nurse to raise your concerns and to get support? You should have support of this type.
Thinking of you
take care
Fran

I do so hope that now things have been finally sorted for you, that everything goes well. I second your point about lack of joined up thinking-we know when something is just not right-get sent to all kinds of departments for ‘tests’-but it seems no central place that collates everything together.

Hi
It does seem to vary from hospital to hospital unfortunately. Maybe if you feel you are not being seen or treated quickly enough you could seek a second opinion and move to a team you have trust in? Since my dx in 2008 I’ve been very well looked after and secondaries seem to be as important as primaries.
Carry on moaning though - this is the place to come to when we all get frustrated and angry :slight_smile:
Nicky

Dear Sarcath,I agree that is sometimes takes months to get things going but once they have al the information to hand I usually find that things can move very quickly.
You were wrong. we did read your post and we care too. It is good to moan and being secondary patients ourselves we know just what you are talking about. Let us know how you are feeling today and if ou have any more news to share with us. Val

Hi
So sorry you are feeling let down at the moment.I was dx with secondaries from day one(no sign of a primary) and had a large mass under my arm.I went through all the usual tests ct.bone,hormone.It all seemed to take ages and then had to wait for appointment with onc at a different hospital.I too was put on to hormone therapy which did not work.It does seem to be standard proceedure to try hormone therapy before offering chemo.I then had 3 FEC and 6 Docetaxol which caused the mass to reduce slightly and the 30 rads which caused it to shrink further.
It may well not be too late to start treatment.tax is usually sucessfuil for most people and if not there are other treatments.The waiting is the worse but I am sure there is a suitable treatment for you.If things seem to be dragging then contact your BC nurse and maybe she can speed things up for you.I also found the onc’s secretary a useful source of information.
Just hang in there and take care of yourself.Once you have a proper treatment plan in place I am sure things will seem better.
L XX

Thank you to all the ladies who did read my moan - it raised my spirits just reading them! I don’t feel too bad in myself it’s just that lump there growing away - hard to overlook it literally! Assessment next week for the chemo so hopefully it won’t be too long - it is just so annoying that, in my case, this could all have happened two months ago if mistakes had not been made.
I would feel a lot better if only I could get a good night’s sleep - I guess that’s pretty common with so much uncertainty and probably affects you all too.
Good luck to all of you with your treatments and thanks again
Sarcath

Hi there, I can relate to your situation totally sarcath. I had a few months delay as they thought I had pancreatic cancer with secondary in the liver…if so I would have been dead by the time they got round to it!
Lucky for me, with all the tooing and froing I was gathered up by my old oncologist who when the tests came back that it was secondary breast cancer and there was nothing in my pancreas, she went straight into action. It was a very worrying 2 months delay as I got worse and worse, health wise and was almost unable to walk and had lost nearly 3 stone. Part of it, I am convinced was they were pushing my case from department to department to see who would end up paying for all my scans and biopsys. Cynical, mayb but thats how it seemed to me.
I was rushed through for my chemo reveiw and the lovely nurse just put a hault on it for a few days as I was in such a bad way, mentally as well as physically. She went through everything very carefully , made me get the correct medication sorted with my GP and then I was in a better frame of mind to start.
Wishing you well, hope you get sorted and have your mind put at rest, to some degree and focus forward now as it makes it much easier to cope with what is to come.
Clare x

Hi Clare
Sounds a similar situation to mine. After lots mistakes by A&E and Gps I was finally admitted to hospital after about five weeks of eating next to nothing, constantly vomiting, including blood and having lost two stone. Amazingly noone had thought of a blockage in the stomach which is what it turned out to be. This was caused by a tumor. It was assumed gastric until they did a biopsy and they said it was secondary breast cancer which also involved the pancreas. I was in hospital nearly a month while they built me up with intravenous feeding and finally operated to bypass the tumor. Only after all this did they pass me on to the breast onc and that’s where I have been for 5 weeks. Chemo should start soon - he did say asap.
Sounds as if you were even weaker than I was. Are you on the chemo now? If so I hope it is going well and that you are feeling better.
Best wishes to you Clare

Hi there, my goodness you sound like you have been through a nightmare, I feel for you…
I am not on chemo, at present, enjoying an enforced break as my body only tollerated chemo for 4 cycles because my bloods went down too low, all of them and were very slow to recover. I spent many happy days in hospital (ha ha) with infection after infection, chemo was delayed several times as bloods hadn’t recovered enough and doses were reduced, which still made me end up in hospital. Scarely my oncologist said I must give my body a rest and stop chemo, I was pleased in so many ways but worried out my mind. I am on Tamoxifen now and have been for 2 months and I am nearly back to normal, still get tired but not like chemo tiredness and have had such a wonderful quality of life with my kids over the summer, its a shame it has to end. I am being scaned at the end of the month and have an appointment with the oncologist on the 10th of October to hear what has been happening with the tumours while I’ve been enjoying myself lol. If all has not moved and my bloods are stable I may get another reprieve, but I doubt it, who knows. The next chemo for me is capecitabine (Xeloda)so we shall see.
Good luck with your treatment, hope the SE’s aren’t too bad and you get a bit of a breather inbetween cycles.
Take care
Clare x

Hi Clare - you haven’t exactly had a party either, have you? I merrily say I am starting chemo soon but have had no blood test yet so do not know if I’ll be fit enough. I have had problems gaining weight - my stomach is so small now I can’t eat enough. And this tumour is growing fast and taking up more room. My chemo should be 18 weeks weekly taxol - just hope the SEs aren’t as bad as with my previous experiences!
I’m glad you were able to have a good summer with your kids. I’m sort of hoping for the same over Christmas when kids plus granchildren want to come - don’t know if it’ll be too much.
I hope things go well with you in October - of course we know we have to do the chemo. Love to hear how you go on.
Take care. It’s a gorgeous day here at present so must get out and enjoy.

Hi Clare I see it’s nearly time for your appointment and I would like to wish you all the very best for some good results.
I have had 2 taxols, next one Monday - SEs not too bad so far — just very tired and a bit dizzy.
Sarcath