struggling for support

Hi folks I have posted on this forum before under core biopsy but i have not had much replies i realy am struggling here. Thot if i could get support it would be from some of you guys!! I am at my wits end i had my core biopsy 2 weeks ago and have stil had no results i know that my pathhology is ready as my GP phoned for result but they said that they don’t work that way i have to go and get it from my consultant. I phoned today FRIDAY over 2 weeks after my biopsy and i stil have no date to go and get my result, the secretary promised my that she woudl phone lme doday before 3.30 with some news of an appointment but ho hum she didn’t. I wonder how she would feel if it was her who was waiting for results. Now i am hoping that no news is good news but until i hear it for myself i realy am in limbo. I realy am at my wits end! anybody else like me and waiting this log for results!! x

hello Lol2705,

I’m really sorry that you haven’t had many replies to your posts,but i’m sure someone will be along shortly and help you. I see this post was written in the early hours which might explain why no-ones replied yet,but i will try to do my best in the meantime.

I had a fine needle biopsy which i’m not sure if thats the same as a core biopsy. Anyway i had it done on the 3rd of June and the doctor was able to tell me right there that it was a tumour,however he couldn’t say if it was cancerous or benign at that stage. I had to make an appointment whilst i was there to get the results,which were given to me on the 6th June when it was confirmed that it was cancerous.

I think you are perfectly within your rights to phone the secretary again on Monday and be more firmer with her. She has not done what she said she would,and i think 2 weeks,when they have your results sitting there is cruel.

If i were you i would be on the phone to secretary,doctor whoever until i had an appointment. You have been more patient than a lot of people would be in this situation,and sometimes you have to make a fuss to make a difference.

Wishing you all the best,and that you get an appointment date on Monday.

Tracey

hi lol i have had 2 cores the first time i had to wait 6 days the second time i persuaded the bcn to phone me with results and she did it takes 5 days for results to come through but it is the appointment to discuss results that can take forever hope this helps bablicious

Hi Lol

I can see that you have received support here from your fellow users. I am sorry to read that you are going through such a worrying time. Please call our helpline for further support, it is open mon-Fri 9-5 and Sat 9-2, the staff are there to offer a ‘listening ear’ and support.

Best wishes
Lucy

Lol

You must be at your wits end. Call the secretary on Monday, explain that you are not hanging up until you have an appointment for the results and thats that. You are right to think - how long would she wait? - not very I suspect. You have perhaps got caught up between GP and Hospital over who was going to give you the results but right now you just need the results so that you know where you stand. Do NOT put the phone down on Monday until you have that appointment, preferrably for Monday afternoon. You need to know.

Best of luck, expect a post from you on Monday telling us you have your appointment!

(((((((()))))))))))) Ostrich, x

Hi Lol275,

Sorry to hear that you are going through this wait. I had a similar problem.

Breakthough Breast Cancer publishes a treatment guidelines pdf/leaflet called
“The Best Treatment” you can find it via their website.

Has anyone else seen it? I found it when I was first diagnosed and it was a great help to me. It’s fairly general, but I was able to make some informed choices about my treatment after reading it.

Page 10 speaks about waiting for test results:
“You should be given the results of your tests as soon as possible after they have been carried out. Some units may be able to give you the results on the same day that you have your tests.
Most women want to know as soon as possible. The doctor should give you the results when you are ready to hear them – you may want to have your partner or a friend with you if you think this will help. No one should have to wait longer than a week for their results.”

Maybe you could use this as a bit of ammunition when you speak to them on Monday? It might shame them into treating you a bit better.

I wish you all the best,

Lomalinda

XXX

Hi

I had two core biopsys done and i had to wait about three weeks for the results even then they didnt know what it was they still dont know have told them if they cant tell me what it is and they just said thery dont know i have asked them to take what ever it is out i dont want it in there im still waiting to get it sorted out and this has been since july don`t think its going to be done now before christmas oh well hope you find out very soon the worst is all the waiting you have to try and keep your mind off it all i know its very hard but try to keep your chin up wish you all the best hope it turns out well sending you a hug to help. take care

Tracy xx

Any news Lol? ((((((((((((_)))))))))))))))))) xxxxxxxxxxx

Dear lol, I had core biopsies taken and I think the dr. who did them knew straight away they were ‘bad’, 'cos they gave me an appointment for the results for a week’s time. I’m sure if yours was ‘bad’ they wouldn’t have kept you waiting this long. But when you ring “BLAST 'EM!” as politely as possible, of course! Good luck. Jackie.

Jackie, most results are back in a week. The doctors don’t know what the results are and wont say until they are sure. A week is normal whether good or bad (I had a core biopsy 3 and a half years ago and got the good news a week later and then another core biopsy 3 months ago and the bad news a week later). Dont panick yourself into thinking too much.

Thank you so much for your comments folks. Well i phoned and guess what it was an answering machine left a message and kept on trying to get somebody to answer up until 1pm as i had to go to my work. Tried from my work and stil on answer machine. They have my mobile and home phone numbers and nobody has bothered to phone me. No appointment through in the post today either. I phoned the hospital to get a number for the bc nurse and lo and behold she is off on holiday until 2nd December. AAARRRGGG!!! People keep saying that no news must be good news and as much as i want to think that until i am told i realy am in limbo. My mam n dad are at their wits end too and think that it is mental cruelty what we are all going through. You see my sister died from BC and they are so worried that they will have to go through it again with me. It was 17 years ago and there are so much advance in treatment i know but all we can see is what my sister went through. My neice (my sisters daughter) is in such a state and txt’s me every day to see if there is any news. My own 3 son’s just want to get the results and know what is going on. My youngest son who is 14 has been sleeping with me and although i have tried to protect him as much as i can until there realy is something to tell him he is also upset, it realy is the not knowing. Me and my eldest son were watching the Soul Diva’s on tv last night for the BCC and were both in tears by the end of the show. This realy is an awful way to treat somebody, and they say that you should avoid stress!!!
I am on a training course tomorrow until 4pm but will try phoning again and I am going to see if i can get a number so that i can put in an official complaint.
Thanks again folks i realy do appreciate the support. My friends keep saying that they KNOW that all is going to be fine but they haven’t been through this and beleive me i will NEVER say that to anybody i know who is waiting for results. I will keep you posted. xXx

Lol, my thoughts are with you, can’t think what else to say except your treatment sucks. I would phone the PALS office at the hospital tomorrow if you dont get immediate joy when you call. I am keeping fingers crossed for you that after all this you will have good news, xx

Oh thanks for that ostrich what is PALS? x

PALS is the Patient Advice Liaison Service run by all hospitals - they should be your first point of call to make a complaint. They are not, as far as I am aware, NHS employees (may be volunteers) and have a fair bit of clout. If you start mentioning PALS let alone the standards of care mentioned by Lomalinda you should start seeing results.

xx

Thanks i will try and get in touch with them tomorrow. x

Well i got hold of a BC nurse today and she said that she had spoken to my consultant who just said to tell me that she is dealing with my results and that i will get a letter sent in post shortly. When i asked if it would be my results that i would get through the post the nurse said that it would depend on what the result was!! So i said that if it is good news it will be in form of a letter but if not i wil be asked into the clinic to which she replied yes my god if i get asked into the clinic i am going to know that it’s not good news. Surley this can’t be good practice. It will be 3 weeks on Thursday since i had my core biopsy and still not news. I am absolutely furious and will be making a formal complaint. In fact i am so angry that i have no energy for tears. Well actually i am full of the cold and have laryngitis so am a bit low at the minute. Away to my bed with a hot water bottle, hot toddie vicks rubbed over my throat and chest bed socks and thick pj’s not a pretty sight. Will phone and see if i can speak to somebody from PALS tomorrow as i realy think that this is dreadful. Nite x

Hey Lol,

What? Not even a token apology? That stinks if you don’t mind my saying so…
I’m really sorry that you have to contend with this when you’re stressed and not feeling well physically. You should go the PALS route as Ostrich has suggested.
Good luck, I really think that you have waited long enough. And do get any explanations you might need about the info you get out of them.

Lomalinda

XXX

Hi,
so sorry to hear this bad time has been made even worse with unnecessary waits. You could get results that are inconclusive, which might not necessarily mean you have it, but would still mean you get called to expain it or to do further test to recheck. Did you say you had just one biopsy? Many units do 3 or 4 or even more to check various areas.
The only other thing I think to try to help is that we were advised to go and pay the secreatry a visit by finding out beforehand when her hours were. Apparently some just pick up answerphone messages to save talking time! Is this a possibilty for you?They are not so brave face to face.
Lots of luck with everything, hoping you will be lucky
Lily x

Hi,
I am shocked at the way that anyone ,consultants especially could think that this is an appropriate way to deal with a patients results.
Definitely put in a complaint to PALS at your hospital and explain you have tried to resolve this issue but your calls are not returned and that the wait has been unacceptable.
(don’t blame the sec as she has just relayed the message from the consultant!)
Might be worth asking your GP to complain too!
Good luck
Dot
x

Lol,

Have just logged on and have to say I am horrified at the way things have gone for you. How did you get on with speaking to PALS today? xxx