After seeing my GP on May 6th with a lump I was told he would refer me to the breast clinic, not really given an idea of timescales for this, but I know from reading around the subject that the normal guidelines state 2 weeks. I have been phoning and chasing up both the GP and the hospital since then, and not getting very far. anyway, spoke to the hospital today who told me they had only received my referral last week(3 weeks later) and that my appointment would take another six weeks??!! I got off the phone in disbelief, I’d managed to convince myself that although I had been waiting 4 weeks already, an appointment was bound to come in the post and it would hopefully mean I would be seen in the next few weeks. How wrong I was!! Anyway, I rang my Mum, (crying at my desk was not a good look so I went outside!!) and she went mad. I should point out that I am thirty at this point!! Anyway, she got on the phone and played hell with the hospital, and the outcome is that she is waiting for a call back in the morning from someone who has hopefully arranged an ‘urgent’ appointment for me.
I’m so grateful to my Mum for fighting my corner, I’m too much of an emotional wreck at the minute to be able to stand up for myself properly, and thanks to my Mum’s 20 odd years experience of working in the NHS, I feel like she really knew the way to argue my case, and exactly what to do to elicit some kind of response. It really does worry me though that other people without such support would just be left to worry themselves sick for ten weeks before being seen. (I’m touching wood here as I haven’t had the appointment yet and anything could happen between now and tomorrow morning!!)
Anyway, if you got this far, thanks for reading
A speechless and worn out Jo
x
Hiya Jo,
What a nightmare! Do you loan your mum out? She sounds brill!
Everyone keeps saying on here that the waiting is the worst bit so to subject people to this much waiting is really unforgivable. Has there been any explanations for why the GP took 3 weeks to put a referral in?
I am not surprised you are worn out! You replied to my own post earlier so you will know that I was just at my GP today. When I got home tonight DH was suggesting that we pay to have the tests done privately as speed may be of the essence for us. Just as we were talking my GP called as he was just faxing off my referral and he had forgotton to ask me about contraception. I mentioned the whole private thing to him and he assured me to stick with the NHS that I would be seen asap - privately would only have me seen a day or two earlier.
We are in it together Jo, hope you get the news you need tomorrow and that your waiting will come to an end soon - with the best possible news of course!
Angela
Hi there ladies,
The waiting is the worse bit! I know it will be eight weeks on Wednesday when I get to find out whether I have Cancer or not!
Regarding the appointment referral. The only time that you have to been seen within two weeks is if the doctor is really worried that it might be cancer. My friend who has been seen twice before at the breast clinic for a lump, had yet another one and waited 8 weeks. This being because the doctor didnt consider it to be urgent. My original referral appointment was scheduled for four weeks after the doctor referred me. I only got seen within two weeks because there was a mix up and the appointment got cancelled and because I was so fed up they gave me an earlier one. The reason there is only a two week guideline for URGENT appointments is they have so many referrals and it would not be humanly possible to see every patient within two weeks, so judge it on urgency. I agree having to wait along time is the pits, but thats the under funded NHS for you!
So there are no guidelines saying everyone has too been seen within two weeks, only when a doctor feels there is a strong suspicion of Cancer.
Hi HelloKitty and Jules,
As we all know knowledge is power.
If you have a palpable lump and you are aged 30 and above you need to be referred urgently. I can say this because I have read the NICE Guidelines. These can be found at nice.org.uk/nicemedia/pdf/Improving_outcomes_breastcancer_manual.pdf
The Guidelines state:
Urgent referral (within two weeks):
• Patients aged 30 or over (the precise age criterion to be agreed
by each network) with a discrete lump in the breast.
• Patients with breast signs or symptoms which are highly
suggestive of cancer. These include:
• Ulceration
• Skin nodule
• Skin distortion
• Nipple eczema
• Recent nipple retraction or distortion (< 3 months)
• Unilateral nipple discharge which stains clothes
Conditions that require referral, not necessarily urgent:
• Breast lumps in the following patients, or of the following types:
• Discrete lump in a younger woman (age < 30 years)
• Asymmetrical nodularity that persists at review after
menstruation
• Abscess
• Persistently refilling or recurrent cyst
• Intractable pain which does not respond to simple measures
such as wearing a well-fitting bra and using over-the-counter
analgesics such as paracetamol.
• Nipple discharge:
• Bilateral discharge sufficient to stain clothes in patients
aged < 50 years.
• Bloodstained discharge in patients aged < 50 years (urgent
referral required if discharge is unilateral).
• Any nipple discharge in patients over 50 years of age.
Read this out to the relevant GP or breast clinic and let them know that they need to refer you within two weeks. If the local breast clinic cannot take you in this timescale then ask them to send you to another breast clinic.
In the meantime don’t panic. The majority of breast lumps are benign.
Good luck.
Sue
It is so annoying and more to the point, very worrying about how the system lets people down. My follow up appointment has been lost/overlooked/forgotten. I waited patiently for an appointment, but nothing. Then I ring the clinic, spoke to receptionist who puts me through to someone else, who is not there and only voice mail. As a clincian in the NHS, I thought to hell with this and went straight through to the oncologist’s secretary, who got me an appointment booked for two weeks time. She did this within a few hours. It was the last resort having to pester some poor secretary but I needed to get an appointment. I am not suggesting that we all thump desks and bombard secretaries with call,s but we need to get much tougher with this kind of poor system. Trouble is when we are worried and vulnerable, we dont have the strength to do this. All this talk about the NHS being a two tiered system is right - not necessarily for those with more money, but those who know the short cuts and are determined to be listened to.
the guidance is helpful but I think it depends on your GP sometimes and individual circs - I was 49, had an inverted nipple and not much else, no lump at the time … nothing the GP could feel but he prefers to refer - saying that it is not his field of experience - so i fit the criteria above… and was sent on 2 week referral.
While i am grateful that happened and I am doing treatment, I think that GPs should take the poss of bc more seriously in young women and all men. early diagnosis and treatment gives better outcomes.
I am so sorry that you have to wait but i hope to see you postign saying it was one of those things… benign!
Best of luck j xx
Your right the guidelines are helpful, but it depends on your gp. I am 44 and my lump was palpable. It says it in the letter sent to my doctor from the clinic which she let me have a copy of. I was told at the end of the day its down to the doctors decision sadly. Hence I had the reasons to be given an urgent appointment but infact was originally given an appointment four weeks after being referred. It was only after my appointment got cancelled in error that the receptionist at the breast clinic offered me a cancellation as she could see I was upset at being messed about.
thanks for all your posts
Ladylumps, I will be here to chat if you want to vent!
Supersue I do fit that two week criteria, my dr must just have taken it upon himself to conclude my lump/nipple eczema are not urgent!
Jules1964, really hope you get good news x
Everyoen else, thanks for the info/input, it all helps
Mum rang me yesterday to let me know she has got me an appointment for Monday morning - such a relief to finally have one!!
Take care everyone x
Hi Jo,
Glad to hear you have the date for an appointment. I came home last night and was disappointed to see no answer machine message with a date to go in. Unrealistic and unreasonable I know but hey ho. I finished work early today as was at meeting near home and instead of driving past my house to my mums to collect the kids I popped home in case there is a message on the machine. If course there isn’t (they only got the referral letter on Modnay night or Tuesday) but still annoyed though I know I am being daft.
The thing that I am getting worked up about is I am not sure about the appropriate level of worry… When I am stresssing I think that I am going to end up feeling daft if it is nothing and if I am being laid back about it there is a wee voice in my head telling me not to carry one with my plans for moving overseas at the moment cause you never know!! I came home to find a raft of boxes from Crown had been delivered to my garage for us to start packing but I know I cannot do anything till I have had this appoinment in case it is tempting fate (and I don’t even believe in fate!!!)
How are you feeling? Have you told anyone apart from your mum? One of the reasons I am hanging abotu typing this rather tahn going down to get the kids early is that I know my mum is going to pick up on the fact that something is stressing me out and I don’t want to say anything to her jsut now. She is a total worry merchant and will be in bits for me until she knows something. I might tell her when I get a date though… not sure.
Angela x
I actually feel the same as you, not wanting to ignore the lump so I won’t be hit with a massive shock if it turns out to be cancer, but also feeling a bit self indulgent for even worrying about it at all because it will probably be nothing, and then I’ve stressed other people out as well as myself, for no good reason. Even feel daft about posting on here, when you think what other women have gone through, but I suppose there has to be an outlet for our anxiety somewhere!
I’ve told a few friends, but not all of them, one is 3 months pg with her first so don’t want her to worry. I did struggle with telling my mum but she is basically my best friend and I always end up telling her everything, so thought it was wise to just get it over with. She is also a walking medical dictionary (sometimes helpful, sometimes not!!) so I knew she would reassure me about the statistics etc.
I know it probably seems impossible but try and put the idea of moving out of your mind for the minute, I hope you get seen very soon and that everything is ok for you. How old are your kids? My daughter is 2 this month,think it just makes it that much more of a worry when we have little people who are dependent on us. My biggest fear has always been leaving my daughter without a mum, I would honestly kill for her, and the thought of not being here to protect her is terrifying
Jo
x
Hi Jo,
My daughter is next week and my son is almost 4, I was 32 last week. I am working from home this morning and expecting a call (on Skype) from Manila from my new employers as I emailed them a couple of days ago to let them know what is happening as the school is due to break for summer holidays after today and I wanted to check that I have alternative email addresses for all the relevant people in case I have to give them some bad news and need to work stuff out. Going to try to keep positive when I am talking to them as really don’t know how things are going to be yet.
Was thinking last night that I know 8/9 out of 10 lumps are benign but wonder how that statistic changes after referral to Breast Clinic? Many lumps must be ruled out at the GP stage I reckon…
Ax
wow, I really feel for you, so much to sort out. Think you are doing all you can to keep them informed though, which must be a good thing. I don’t know about the stats, after going a bit internet crazy last night I’m scared to look up any more stuff!! My stepmum is Filipino, what made you decide to go for such a radical move? It will be amazing for you all though, your kids will get such a new and varied view of the world x
Don’t know why the 5 key didn’t work last time but DD is 5 next week. We are going to work in an International school over there. Talked to the school today who are being patient and supportive but not sure how they will be if I give them less than good news. They pay for all health insurance you see and I am worried about any diagnosis that means I will be ‘expensive’ to keep. Very very excited but apprehensive about the potential impacts of all this just now.
Ax
Hi Jo,
Good luck with your appointment today. Please, please come back and let us know how you get on. Wil be thinking about you this morning. Hope it is all good.
Angela
I went to see my GP at 4.30 on a Thurs aft (14th Feb) and as soon as I said I had found a lump in my breast that I was concerned about he filled in a form and faxed it to the hospital while I was sat there. At this point he hadn’t even examined me but because I had said that my sister and mother had already had breast cancer he said he didn’t want to waste any time. As I was leaving the surgery he said to give him a ring if I hadn’t heard from the hospital by 3pm the following day and he would chase it up. I did hear from the hospital the next day and got an appointment the following Tuesday. After being dx I had my op on 8th March. I did have the op privately as I was covered by healthcare at work but had already been offered a slot with the NHS for 12th March - a difference of only 4 days. I was persuaded to go privately by my OH who said that if I went private somebody else could have my NHS slot so it made sense. Obviously GP’s do make a difference in determining whether a case is urgent or not - I might add that after my GP examined me he didn’t think my lump was cancer and said he didn’t think I should worry unduly.
When I visited him again after my op he was quite shocked that it had turned out to be cancerous but said that was why he always listened to his patients and acted on
what they thought as they invariably knew their body better than him.
Hi Jo,
Hope you got on okay today. I have been thinking of your lots. Do let us know how you are.
A
Hi Ladylumps! The lump is a cyst, sooo relieved, the dr found some other lumps in my armpit, but they were just lymph nodes.
thanks for your support, i hope tomorrow goes well, and I will be on here to check xx
BRILLIANT news!!!I am soooo opleased for you, you must be so relieved. I will post tomorrow night to let you know how I get on. What did they do?
Ax
Hi Hello Kitty - glad to hear that your lump was a cyst. I’m always delighted to read that BC has not got another one.
thanks both
they examined me, then I had an ultrasound and then went back in to see the dr again. All very painless xx