Frustration at waiting

Public Archive
1

Hi everyone

I have been reading the posts on here with amazement and awe at the strength of so many women facing so many difficult things.

I feel like a bit of a fraudster for posting on here but not too sure where else to go at the moment.

I am 37 and have been having pain in my right boob for a few months and dont have a lump as such but things are lumpy and to me there feels to be like a ridge of tissue along the side which has got worse. The pain is like a burning ache and then I will get acute stabbing pains on and off, sometimes it is just a stab and then it eases and other times it lasts and quite takes my breath away. I have also had a green/yellow discharge which isnt there all the time, only when squeezed…

God you have no idea how hard it is for me even to write this down. Sorry.

It took me a long time to go to my GP, stupid really considering I work in cancer research and my Mum was diagnosed 6 years ago (post menopausal). However, I have almost phobia feelings about doctors and being examined. I forced myself however to go once the pain became as bad/constant as I have described (about 3 weeks ago).

She couldnt feel a lump but did agree that maybe things didnt feel right. She thought it might be an infection so we tried antibiotics but they didnt change anything. She then said that she would refer me to the breast clinic and we chose the one in our area that had the shortest waiting time. She did say that she wasnt going to fast track me as there was no lump to feel as such.

I went away with my choose and book password and booked an appointment for Feb 26th. She had said to me that they would probably do an ultrasound at that appointment and I shouldnt have to wait for results. I did some internet searches and confirmed that the breast clinic was a one stop clinic so felt ok that i was waiting nearly 4 weeks as at least i would have some answers on that day.

However, today I started to wonder if i was indeed going to a one stop clinic as my appointment is early afternoon. So, i took some initiative and phoned the clinic. Sure enough as i havent been fasttracked i am not in that clinic and the appt is merely to see a consultant. IF they decide to do an ultrasound they will call me back in a further 2-3 weeks and then i would have to go back again a week or so later to get the results.

I just cant do that. I cant cope with the stress.

They advised that I phoned my GP to see if they could change the referral to fasttrack, but i am not sure if they can do that without a specific lump being found.??? Anyway, i phoned only to be told that my GP is not in until Wednesday so i will have to phone back then. ARGHHHHHHHHHHHHHHHHHHHHHHHHH

Sorry for the long post and sorry for getting worked up over something that is nothing compared to what most of you are facing.

I just want to know one way or the other. I know that 9 out of 10 are ok and I know that pain is supposedly a good sign but I really cant stop thinking about the 1 in 10 that isnt ok.

Again, sorry for the waffle.

Hannah2

2

Hi Hannah,

Welcome to the Breast Cancer Care forums, you have come to the right place for support and advice as I am sure you will find from the many informed users of this site.

I am sorry you are so worried and concerned about your wait for a referral to the breast clinic, perhaps you might like to give our helpline a call and have a chat in confidence about your concerns to the staff here. The telephone calls to the helpline are free, the number to call is 0808 800 6000 the lines being open Monday to Friday 9am - 5pm and Saturdays 9am - 2 pm.

Hope this helps. Kind regards,
Jo, Facilitator

3

Hi Hannah

Please don’t feel like a fraduster - the forum is here for you to find help and advice - and that’s what you’re doing so you’re not a fraud!!

I’m so glad you took the initiative and wnt to your GP - I’m much the same - hate going to GP’s (though I’ve been more in the last 3 months than in my entire lifetime! - and I’m 46!). It is important that you get these things checked out, though hopefully you will have nothing to worry about.

I’m sorry you are having to wait so long for your appt. Is there no other GP within your practice that you could speak to before Wednesday, to explain your concerns? There are guidelines for referral, depending on the symptoms that are presenting - I can’t remember all the details but you can check if you google NICE (in England) or SIGN (in Scotland) guidelines for breast cancer.

As you will see from many posts on the forum, for most people the waiting is by far the worst time. I was fortunate (if fortunate is the right word !) in that I had appt within 2 days and it was at a one stop clinic, so I also had results within 30 minutes of all the tests. Not the results I wanted unfortunately - but that’s another story lol!

You don’t have to apologise for the long post - believe me there are times I’ve written what feels like War and Peace on here - and as for getting worked up - well we’ve all been there - we’ve all screamed, ranted, cried and yes, sometimes even laughed. The good thing is, there will always be someone here to share it with you, who knows exactly what you are going through.

I would definitely try to speak to someone else in the surgery, or as Jo has suggested, speak to one of the counsellors here. I hope you get through this ok - please keep posting and let us know how you get on. If nothing else we can hopefully help you to vent any frustrations etc while you have to wait.

take care

Margaret x

4

Hi Jo and Margaret and thank you for your replies.

I am not sure if I could talk to someone on the phone, somehow typing is easier. Now that sounds stupid!

Margaret, I did ask if I could speak to someone else at the surgery but was told that only the GP that referred me could change the referral, plus, if i did go to someone else they would have to examine me and go through the whole thing again. Nightmare. Plus they had no appointments available !!! Dont you just love the NHS sometimes!

I will check to see if i can find the guidelines for referral but I was readinig some posts on here about women who had similar to me, no identifiable lump by GP but referred to breast clinic within 2 weeks and it was onestop so it must be possible somehow somewhere.

I suppose the anxiety is the worst… I didnt sleep much last night, just couldnt stop going over things in my head. Added stress being that my work contract finishes in May and I should be manically applying for jobs right now, anywhere in the UK really, but how can I do that if I dont know if I will be able to work in May…if the worst happens and I do need treatment I wont be able to start a new job… how can i focus on applying for one??? How would I afford my mortgage if I dont have a job etc etc etc. My current boss is lovely and she knows my situation but there is no money to keep me here at the moment (research funded by fixed term scientific grants). The problem is that I am under a lot of pressure to get as much done and get as many results as possible before I have to leave. Lack of sleep and stress is not conducive to this! I am sure that you all know that and have more experience of that than me.

Hey ho. I cant do anything until I ring my GP tomorrow but I am stressed that she wont change anything and keep telling me that everything suggests it will not be serious, however that is not deffinite and I dont know how I will cope if things stay the same.

Thanks again for “listening” it is greatly appreciated as I dont have anyone here to talk to who understands, they just keep saying “oh i am sure it will be fine” “keep positive and it will all be ok” Mmmmm wonder how they would react if it was them in this situation. Sorry, waffling again.

Will post back when I know what is going on.

Thanks

Hannah2

5

Hi Hannah
Couldn’t help but reply to this post, I’ve been dx twice 8 years apart. Bilateral last year & just had 1st part of reconstruction last week.
There are specific guidelines (NICE guidelines) that your gp should follow, I’m not all clued up, but some on the site are. Your gp must send you for an appointment & you must be seen within two weeks, If i remember correctly a triple assessment should be given, examination, mammo or ultrasound or both, then if something is found or suspicious a core biopsy or fine needle aspiration should be taken & then there is a time limit for results. Please ring your gp back & shout at them down the phone, it may be nothing but do you want that worry for nearly a month, they have a responsibility to follow the guidelines, make sure they do.
Please take care
Louise xx

6

Hi Marylou, good of you to reply, thank you.

I am sorry to hear of your dx but hope things are going ok and you are recovering from the reconstruction well.

I have had a look at the NICE guidelines and as far as I can see there is only a need to fasttrack if a lump has been found. As I explained I dont have a distinct lump, just a ridge/lumpy area. I guess she has classed me as being non-urgent hence not fasttracking me. However, I do believe that she thought that I would have the ultrasound on the day of the appointment so I am hoping that once I point this out she will be able to re-refer me.

As far as i believe, and the way i am looking at it is if there is a risk that it is breast cancer then I deserve to be treated the same as someone who has found a lump that might not be cancer… does that make sense. I dont mean that in a nasty way. It is just going to be extrememly difficult to go to my appointment and have to wait for an ultrasound when I know that people in the next room will be sent for their ultrasound straight away.

I suppose the whole thing comes down to her classing it as non-urgent.

Well, I will speak to her tomorrow and throw in all the other stuff, stress, lack of sleep etc etc etc and see what she says.

If she wont change the appointment that I will ask her if I can be referred for a private assessment/scan. It will be tough to pay for but if it sets my mind at rest then it will be money well spent…maybe she will see then how serious i am.

Thanks and fingers crossed that I (a) get to speak to her tomorrow, receptionist depending and (b) that she will change the referral.

Hannah x

7

Hi hannah
i wasfirst dx at 29, 2 young children, my gp said i was to young to have breast cancer although i had a clear lump! i pushed for a refferal & it was 8mm tumour. I have a family history of cancers so i was aware of thr risks, for me personnally i do not believe gp’s don’t know enough about the symptoms that present themselves as cancer to be qualified to diagnose, as there are many symptoms and every one is individual. There are many types of breast cancer that are undetectable to touch or the human eye, i believe we all know our bodies & we should go with our instincts, my last dx last year was picked upon a mammo, dcis, 4 ops later & 2 tumours, i had a bilateral masectmy (someone made a mistake, but thats a long story) i hope you get a quick refferal to put your mind at rest & let me know how you get on.
Louise xx

8

Hi Louise

I dont know what to say in typed words that can compare with what you have been through. I am in awe of how you and others on this site have dealt with everything, from diagnosis to treatment to reconstruction etc. I only hope that if I ever have to go through anything approaching it that I have even the tinyest bit of that courage to face what would lie ahead.

Anyhow, for now I am trying to remain positive and will do my utmost tomorrow to push for my appointment to be changed. I know that something is wrong/different, whether it is cancer or not I need to know what it is so that i can concentrate on getting the rest of my life into order (job etc).

I will of course come back tomorrow and let you know what happens… can I set you onto my GP instead of me !!!

Take care and look after yourself Louise.

Hannah2 x

9

Well, I am not a happy bunny at the moment. I telephoned my GP surgery today as I was told to do so and was told that i couldnt speak to my GP but they would leave a note on her peg (???) and she would phone me back.

That was at 10am.

At 2pm I hadnt heard anything so phoned again. Got a receptionist that obviously couldnt care less, she told me the notes were still on her peg but that she (GP) was around all day so would ring me before the end of the day.

Guess what… NO PHONECALL

to say I am miffed is an understatement.

I didnt sleep much last night and just couldnt function at work today.

I am not going into work in the morning, i am going to go to the surgery and push to see the GP. If i cant i will ask to wait at the end of surgery to see her. ARGHHHHHHHH.

I have a feeling she will not fasttrack me and i will be wasting my time but i cant function like this, the idea of a really long wait to get tests/results is just hanging over me… its that not knowing feeling that is getting to me.

I will let you know how i get on tomorrow.

Hannah x

10

Oh heavens Hannah - I am so sorry that you have been treated like this. It would have been just common courtesy for the GP to ring you back - they have time scheduled in their working day for this.

I don’t blame you for going into surgery - I think I would too - I so hope you get something sorted.

take care

Margaret x

11

Thanks Margaret, knowing other people would do the same does help.

I am just so stressed at the moment, what I havent added is that I have another consultants appointment next week for test results as they think that i have an autoimmune syndromme. This just adds to it all, one thing after another hey!?

fingers crossed for tomorrow.

Hannah2 x

12

My fingers are crossed for you too - I had a quick look at the Sign guidelines (I’m in Scotland so these apply here not the NICE ones) - going by those, and the symptoms you have described in your first post - I imagine your GP is treating you as ‘manageable in a primary care setting’ rather than fast tracking you through the referral system. Which I know doesn’t help you - I really think you need to explain your worries, I assume your GP is aware of your family history, and how this will be affecting your thinking?

Have to say I can’t imagine going through all that hanging about. As I said earlier - mine was very quick - appt with GP on Tuesday, One stop clinic on Thursday - results within 30 mins - Grade 3 tumour, 30 mm, bone/liver scans folloing week and mastectomy after that, followed by chemo 15 days later! In fact my chemo commenced 27 days after my original diagnosis - so much of a whirl I didn’t have any time to think about it at all (thankfully) - I’ve now just finished the last cycle of this chemo, start radiotherapy in 2 weeks, then more chemo…

Let’s just hope that your GP has made the right call and you have nothing to worry about !

best wishes
Margaret x

13

Hi Hannah
Hope you have seen your gp & got the appointment fast tracked!
Same as Margaret said, she should have at least had the courtesy to ring you back.
If you are seeing a consultant next week why don’t you mention it to them, i know it is for something completely different but they may be able to ring & get you an instant referral! just a thought.
you take care
Louise xx

14

Hi Louise, dont have much confidence in the other consultant…wrong tests ordered, most important blood tests missed off orders, cancelled my appointments 3 times to go on holiday etc etc etc. Usually seen by registrar not consultant and on one occasion students that scared me as they got things totally wrong and got told off in front of me…not fun!

Anyhoo, been to GP surgery… she hadnt even picked up her messages from yesterday…not just mine!!!

Have an appointment with her at 11.30 so will see what happens then. Not sure if she will change appt though. Fingers crossed.

H x

15

Hiya Hannah

Don’t know what area you are from, but I have seen many instances of women here (Essex) go private for the initial checks, mammo, ultrasound, aspiration etc. I wouldn’t know how much cash is involved, but I do know that its possible, then when you have the results you can opt to go to NHS if you so wish.

A few years back, a friend of mine did this and it cost her around £400 - her results were good, and as she says, it was worth it for peace of mind for the cost of a holiday or a car service.

In an ideal world you shouldn’t need to do this, but it is an option. All the very best.

Cheers
Anne x

16

Hi Guys

I tried to post earlier this afternoon but I think the site might have been down??? either that or my computer was having a blip.

Anyway, went to the GP surgery this morning, spoke to a lovely receptionist who went off and came back to tell me that her notes were all still there from yesterday so she hadnt seen the message. ARGHHHHHH

She made me an appointment for later in the morning and said she would make sure my note was passed on before the appointment.

So, in I went to the appointment to an annoyed GP, i do hope she doesnt read these forums.

Anyway, she said she didnt consider me high risk as no distinct lump and as I had pain. She said that the problem is if they are caught referring too many patients to the urgent clinic and it turns out not to be cancer then they end up with egg on their faces ??? Personally I would rather they had egg on their faces and I have the knowledge that in fact my worrying was for nothing … than the opposite.

However, she said she did not like being forced to refer people, in fact she fought against it but she did say she could see i was really stressed and understood about my appointments next week to my other clinic. Added to that my work problems (not having any after May at the moment) so she said that it was up to me ???

DERRRR what did she think i was going to say??? Of course i was going to ask her to change the referral, thats why i was there.

So, she reluctantly has referred me. She said she is sure it will turn out to be nothing.

Not sure how she is going to be with me if that is the case but i suppose that is something i will deal with for the sake of a bit of sanity now.

My appointment is on Tuesday 12th… what a relief.

Anne, you are so right, that was my next approach if she woudnt change my referral, in fact it was on the note left for her so i dont know if that affected her decision. It would not have been easy to pay for but as you say, peace of mind has no price.

Margret, that sounds like such a whirlwind of diagnosis and treatment. Your head must have been all over the place. I hope that your chemo has not been too traumatic and wish you all the best for your radiotherapy. My Mum didnt have chemo but did have radiotherapy, it made her very tired but she coped amazingly well. I guess all the travelling everyday doesnt help with the tiredness.

Anyway, all the best to everyone. I am sure i will be back before Tuesday … being able to post here has really really helped, it is hard to get others to understand.

Thank you all for your support,

Hannah2 x

17

Hi Hannah

I’m so glad you have managed to sort this - well done you for persevering!

You are right that my head was all over the place - it wasn’t till I was going through the chemo and had so much tme on my hansds that it really dawned on what had happened. The chemo was manageable (now I look back lol) - the radiotherapy I am hoping won’t be too bad. I won’t have any travelling as such - my own health board don’t do radiotherapy, the nearest radiotherapy unit is 100 miles away so I have to live away from home Mon - Fri for 4 weeks !! not exactly what you want but hey ho.

All the very best for next Tuesday - let’s hope your GP is right. I am sure the only thing she ‘will be with you’ if she is right - is a tad smug!!! I’m sure you can live with that for your peace of mind!

Margaret x

18

Hi Margaret

Now that I have the appointment sorted, at the moment anyway, I am ok and not too stressed about what might be. Whether I will feel the same on Tuesday or not i dont know! I think i am more stressed about being examined, proded poked, being undressed in front of people which is extremely traumatic for me (silly i know), than i am about what might or might not be found.

I know what you mean, dealing with a smug GP will be a sinch compared to the stress that was taken off my shoulders today. Athough i probably wont feel like that when i have to see her again.

I have the breast clinic appointment on Tuesday and then my MaxFax appointment on Wednesday so hoping for negative results for both appointments! The Max Fax clinic (maxillofacial) is due to salivary gland/ear problems, looks like i might have Sjogrens sydrome, an autoimmune disease. Not too bad to deal with at the moment but it depends how it develops.

I am sorry to hear that you have to stay away during your radiotherapy…not sure what is worse, lots of travelling but you get to be at home, or staying away near the hospital. Where do you get to stay?? Do they have a special house where you get your own room or do you have to stay in hospital? or…do you have to sort your own accommodation out? Sorry for being clueless.

Anyway, thanks again.

Hannah2

19

Lol - I was clueless too once haha!

They have a hostel where you get your own room, situated within the hospital itself - if a room isn’t available, then you get put on the ward - I soooo want a room of my own!!

Margaret

20

Hi Margaret

I will keep my fingers crossed for you that you get a room of your own.

I can understand how much you would want this, but I suppose everybody would be the same as well!

I slept properly (without wine to induce it!) for the first time in ages last night. Feel so much better for it.

looking on Tuesday as a positive thing. I fought for it so I am going to face it as a really positive thing to be lucky enough to have the appointment.

Ooooh the trials that life throw up hey, mind you, mine is nothing (so far) compared with most of you on here.

Hugs to all today and thanks so much for being here to support those of us that need it.

Hannah2 x