Hi - I have an appointment this week at a breast clinic (2cm lumps). My GP seemed deliberately neutral.
Since then I’ve been very stressed as it uncovered an error in my records. (Even my GP practice said it was bizarre but the problem was with the hospital. Not worth me explaining here). I’ve been pretty stressed trying to sort that problem which has taken my attention away from psyching myself up for the actual appointment.
The stress has masked my anxiety and I’ve suddenly realised the appointment is soon. I have some specific questions which I haven’t seen answers to elsewhere.
My mum has seen how stressed I am and is saying she’ll come with me, but I’m not sure about this.
Do they ask you questions about your sexual history and smear test history? (It’s just never anything I’ve discussed with my mum?)
If she comes into the room(s) with me will they have a curtain for privacy between us? She’s offered to just sit in a waiting room.
Will they take blood pressure etc? I get dreadful white coat syndrome and am always very anxious in a clinical setting (fine BP at home), so this makes me extra worried on top of feeling anxious about the lumps.
Will they know I’ve already had contact with PALS? (…before I’ve even made it to an appointment). I might need to ask a clinic administrator re my records error (My GPs advised my error may be at department level) but have no idea how easy this will be & if I’d be seen as difficult on a day when I’d rather focus on my health.
I’m also convinced I’ve missed an information leaflet - the appointment letter was so sparse on information - no mention of US, mammogram or biopsies - I’m assuming it is a one stop shop and I need to go prepared. Any tips? I think I’ve read you shouldn’t use deodorant…? I have visions that 5 weeks on from requesting a GP appointment, I’ll find it’s not even scans…
Oh so sorry you are in this situation - I can hear through your words how panicked you are and I can say it’s totally normal. My first message to this forum was a similar panicked call for help and I never ever thought I’d be where I am now.
First of all - know and believe that you will get through this, you are in the worst time, waiting for appointments and any diagnosis and it’s just fear of the unknown that is the worst.
I would recommend calling the Breast Cancer Now helpline tomorrow when they open, the number is on the main page. I phoned and could barely speak I was so distressed and the lovely nurse talked me down ‘from the ledge’.
On your specific questions, I can think of no reason why any breast consultant or nurse would be asking about your sexual history or smear tests.
I was examined behind a curtain and it was my husband there but he was still on the other side.
No blood pressure was ever taken from me and again, I can’t think of any reason this would happen.
I work in a hospital and whether or not the team know of any PAlS complaint, it will make no difference to your care.
I would imagine they would do mammogram, ultrasound and examination at your appointment. I didn’t get any info leaflets and went with deodorant and they just wiped the mammogram plates, so wasn’t a huge issue.
Please know we are thinking of you and you will get through this. xx
So sorry that you have been dealing with a problem and yes it sounds like your anxiety over one thing has masked your anxiety over the other . Firstly your Mum doesn’t have to come in with you when you are examined / have your history taken etc. She could wait in the waiting room. You do not need have anyone with you if you would rather not - I went in lockdown and was on my own as that is what they asked us to do. A friend dropped me off then went to have a socially distanced visit with another friend and picked me up again after. A few ladies did bring partners but the partners stayed in the waiting room. What tends to happen is that you go in have an examination and your history taken ( they didn’t do my BP or other observations but they do make allowances for white coat syndrome if they do take it ) .
I can’t remember them asking about my sexual history but I’m of a certain age and they did ask if I knew my menopausal status. If you are in any doubt about this from personal experience I would advise getting a test at your surgery to find out but if there’s not much time before your appointment it could wait until later.
They will ask you about familial history of cancer , I doubt they will go into detail about your sexual history but they might ask about smear tests and any operations or problems with periods as hormonal issues can affect both your periods / reproductive health and your breasts .
I didn’t get any leaflets - just a letter as you say that advised me to allow up to 2 hours for the appointment and not to wear deodorant . No details of what the tests might be . Until they have an idea what’s going on they won’t give out leaflets but I saw some ladies being given them after they had had their tests.
I had an examination of both breasts and history taken by a BCN followed by mammogram , then ultrasound scan of breast and lymph nodes , biopsy then another mammogram .
After that I was called back in by the BCN who explained the findings and gave me an appointment date for results .If you didn’t want your Mum to come in initially but decided you wanted her to come in at the end I think that would be fine. Sometimes it’s helpful to have someone with you but it depends on who they are. If you have any questions you want to ask or think of any on the run up to your appointment then write them down and take them with you. There will be an opportunity to ask but your mind can go blank so if you write them down now then you won’t forget.
As regards PALS - I don’t know whether they would know or not. However as there has been an error with your records and you have been trying to get it put right I think that you should be up front about that if only to be sure that it doesn’t happen again. I’m an NHS Nurse but we are also all of us patients as well and we all know that it’s in the interests of all parties not just individual patients that medical records are accurate . You should not be labelled a difficult patient just for bringing this error to light .
Hi flamingo7. Sorry you are going through this.
I was never asked about sexual history / smears. I only had blood pressure taken at my pre op (and obviously on the day of surgery).
There will be a curtain in examination rooms and will be closed wether your Mum goes in with you or not. Perhaps have a chat with your mum and come to an agreement that she goes to the waiting room if you feel it would be preferable. I am sure she will understand. Having someone close by could be reassuring for you. I did not get any leaflets until my diagnosis 2 weeks after all my test results came back.
I am not familiar with PALS but it should not have any effect on your standard of care or treatment.
Best of luck with everything x
Don’t worry they won’t have any knowledge or concern about PALS involvement. It is a separate issue, not relevant to your appointment and dealt with separately to any clincal care.
Thank you all so much for your replies. I felt quite emotional reading them, which I hadn’t expected - I really appreciate having a forum like this (and especially the patience and kindness of others who’ve been there before).
My Mum’s preference is to keep me company in the waiting room but has left it up to me. I get very nervous in a clinical environment. I’ll probably go in on my own first and see how things seem to be going. I’ve also noted down some home BP readings I can take with me.
The irony is I’ve only tried PALS because my hospital trust doesn’t like to give out contact details apart from their bookings line, so no other option -I don’t actually want to complain just resolve. (Incidentally, those who work in the NHS, do you know if hospitals have a records department?)
I’m glad you mentioned hormonal changes and how they can relate to breast changes. I thought I’d seen something about things they might ask, hence my questions - makes more sense now.
Always grateful for any help. Thank you very much for your replies.
Unlikely that they will know about PALS. Don’t worry about any sexual history questions, it is totally irrelevant to having breast cancer, so will not be asked. I volunteered up that my mother had BC ( 17 years ago, still going strong at 80). Told them I was premenopausal despite being 52 - relevant as to being given tamoxifen rather than letrozole - also that have had a diagnosis of PCOS, which the seemed of interest, and have since read that it can be a risk factor for BC due to higher hormones, as is late menopause ( my mother was 58 by the time she’d not had a period for a year).
You are overthinking it a tad maybe, you don’t need proof of PCOS to take. Whatever causes increased risk isn’t really relevant to the treatment plan. It could be handy just for future data collection about risk factors, but won’t affect anything. The meeting will be about the treatment advised, that will be their only focus. I didn’t need to mention it, I think when you have BC it naturally causes you to focus on the why, tbf, why is not important to them.
I don’t think they will need your blood pressure readings - I doubt they will take it. The room that I was in I didn’t even see the equipment to take it. You could ask about the PCOS if it would make you feel happier - make it one of your questions . There is a medical records Dept. but you might be better approaching them via a liaison service like PALS . I’m thinking that you are wanting to take your reports and readings in as proof because as there’s been an error somewhere you now don’t trust the system which is understandable though sad. Xx
Thank you both. I probably am overthinking it a bit.
I don’t have PCOS but a previous breast consultant ordered additional scans, and as it was private back then and years ago (just appointment and US) I wasn’t sure they’d have that history.
I have huge respect for anyone working in the NHS though a clinical environment triggers me feeling very nervous. I suspect my way of coping is to think things through in advance.
PALS drew a blank (it looks like a simple problem but everyone says it’s someone else’s problem ie GPs blame hospital, hospital says not us etc). I decided to let it go for now and focus on the breast clinic. I’m feeling more positive today and I’ll be glad to put any waiting behind me.
I wanted to say thank you again for all the replies. I had my appointment at the breast clinic and am relieved they didn’t find anything (despite the doctor saying on examination that he’d found something in the other breast he really didn’t like and would be adding more scans). It felt scary (the anxiety, not the actual tests!) and I’m very glad I went. I’m also humbled by the fact that others don’t get positive news and touched by the kindness of those going through cancer who’ve taken the time to reply to me.
I just thought I’d add some thoughts in case there’s someone else like me looking at this forum and trying to work out whether to get checked and what it’s like. (Please get checked if you’re concerned).
I waited in a waiting room for an hour before being seen and the environment felt respectful (you couldn’t tell who was getting positive or negative news). I was surprised the demographic seemed younger than I expected. After seeing a doctor for an examination it all moved very quickly to mammogram, ultrasound and seeing the doctor again. Questions, as others have suggested, were straightforward: family history, your own health history, period status. No mention of any of the additional queries I’d been worried about beforehand.
The mammogram felt fine and each time the plates apply pressure it’s literally about 2 seconds. (They told me to breathe in and hold my breath so it really was that quick). The ultrasound only scanned the particular areas of my breasts the doctor had indicated and was very quick. The radiologist felt able to feed back to me during this, but I guess that depends on things like breast density. At no point did I put on a hospital robe either (simply put my top back on in between each bit).
Other slightly random thoughts in case it helps:
I’d previously had a private breast appointment 10-20 years ago and they were glad to see the ultrasound report I took with me (said they wouldn’t have it).
I wished I’d tied my hair back when I was having the mammogram (but it really doesn’t matter) though I was asked to do so for the ultrasound.
I panicked and despite months of finding the lump daily (and my GP saying it was 2cm), I couldn’t find the lump to show the doctor. If there’s a next time, I’d actually mark it in biro in advance. He said it didn’t matter because it would be scanned anyway. I wasn’t expecting the doctor to find something else in the other breast but it shows they’re thorough. I showed him the lump I’d had scanned years ago and asked if I could sit up to find it (they then marked it to check again) so if you can only find something in one position do tell them.
I whipped out my phone and took a photo of the form the doctor had marked up for radiology before handing this over. I’m glad I did this because it shows on a diagram where they were checking (far more places than I’d gone about). One of the lumps I hadn’t felt before but have since tried to find so that I don’t worry about it in future.
It’s so easy to reach for dr google but another lesson I learnt - despite having lumps that doctors can feel, it turns out you can have lumps that are simply breast tissue, not cysts or a named something else. I’d convinced myself I’d be having biopsies or something drained. This isn’t always necessary.
I was very impressed by the NHS one stop clinic experience - once I was seen, it moved very swiftly from doctor to scans to results within a few hours. I actually preferred this to it being drawn out over a week to find out if I’d need biopsies, as it was when I went private many years ago. I’m also glad they now have scans on file for me should anything change in future.
Oh I’m so glad that it worked out well for you and that you found it to be a helpful and positive experience . Some great tips there as well @flamingo7 . Xx
