I found my lump on the 30th Sept and was formally diagnosed on the 24th Oct. I had my lumpectomy and 2 lymph nodes removed as a precaution as ultra sound was clear on the 31st Oct…I’m 47. I went back to see my consultant last Fri and was told I have G2 cancer, clear margins and wasn’t in need of the Herceptiin drug however one of my 2 nodes had shown a trace of 2.4 mm…I’m now facing another op on Wed this week to remove all my lymph nodes.
I’ve finally plucked up the courage to join this site as I feel terrified and alone despite having wonderful family and friends support. I am known as a very strong woman and in a lot of ways I am when it comes to all around me but not when it comes to myself. I suffer very badly with white coat syndrome which no one gets and laughs at but it’s adding to my fear and anxiety. I’ve not been able to sleep since diagnosed and not only dreading having another operation on Wed but what the next results will reveal…Despite my consultant telling me my results were majority good news I can’t focus on anything but one of my nodes having a trace and therefore now having to have them removed as another precaution.
I feel alone with my heightened fear of the unknown and my white coat syndrome escalating this…
Is there anyone else going through similar anxieties?
Hello and welcome to the forum where you willl get loads of help and support from the wonderful ladies on here who will completely understand and have experienced what you are going through.
With regard to the white coat syndrome, you are not alone, I am terrible, as soon as a medical person comes near me my bp goes through the roof and I have to keep explaining the reason why. Once I am at home doing my own bp readings they are totally fine. You would be surprised how many people actually have the same problem so you are not alone my dear.
Just take a deep breath and deal with each stage one at a time, so for now it is preparing yourself for the op on Wednesday and then deal with the results after that, try not to second guess the outcome as that is only going to make your stress and anxiety worse.
Come on here whenever you want or need to and we will get you through this, there is always someone on here who will be abe to support you.
I think most of us have gone through anxieties, especially during the early days of diagnosis & sometimes the whole thing can feel somewhat irrational at times.
Yes, it is daunting to have further surgery, but try & hold onto what the surgeon said about it being mainly good news. Node involvement is very common, but what is reassuring is that recent research has shown that minor node involvement as you describe, does not make a lot of difference in terms of outomes & the surgery will reduce the risk further.
I can relate to white coat syndrome & I work in the NHS! I only have to go into the clinic situation & my blood pressure shoots up. I now do my bp at home & yes, it’s fine.
Anyway, feeling anxiety when going through this is quite normal, so be kind to yourself.
Thanks Ann for your kind words.
I know so little about having my nodes removed and have been given a booklet to read on Lymphodema which has added to my worries.
Do you have any tips on reducing the panic that comes with white coat and in particular how I can calm down when in the recovery room and then the regular BP checks they have to do post op?
Xx
Hi JDW,
It is a common problem. The nurse I saw for my pre-op check was quite reassuring, she told me not to worry & that they expect people to be anxious when going through this. Ironically, on the day of the op itself, I was so relieved it was going ahead, my bp went down a bit.
Try not to worry about it, they are measuring a stressed bp, not a resting bp, so it will likely to be at it’s highest in that situation.
I decided to do it myself, following seeing my GP about my tamoxifen prescription. My heart sank when he said ‘lets just check your bp’ then he wished he hadn’t!
Once I had desensitised myself to doing it myself, my bp is just fine, as I knew it was & my GPs happy!
ann x
I am another with white coat syndrome, stems from having pre eclampsia when I was pregnant many years ago! Left me with a fear of having my BP taken so its through the roof before I’ve even rolled my sleeves up! Had a monitor on at home before to get an accurate reading and its always within an acceptable range, bizarrely after my lumpectomy it dropped quite low which made us laugh after all these years of it being high!
Its natural to feel anxious and also perfectly normal to focus on the one minute bit of negative news even when the rest was so positive, we all do it.
Plenty of ladies here to talk to at all hours of the day and night so you are never on your own Xx Jo
JD-W, just wanted to say hi and welcome and echo what the others have said. I think the clinical environment is not conducive to relaxation and whilst the uniform is a necessary part of hygiene and professional presentation, it doesn’t put you at ease. A consultant came to see me when I was in isolation during chemo due to risk of infection and he was putting on a blue plastic apron as he approached me, I said “what are you going to do to me?” with a rather worried look on my face and he replied “I’m going to shake your hand!” the apron was to prevent germs being transferred whilst he chatted to me. :smileylol: I had all of my lymph nodes cleared on one side as mine were full of cancer and I’m doing fine one year on since surgery, no signs of lymphodema or recurrence (fingers crossed). There is research which is showing that if you stay fit and healthy your risks may be reduced. I’m glad you found us here where we understand how you feel and I hope you continue to recover well from your surgery. The mental recovery takes a bit longer. Sending hugs. xxx
Hi I am in exactly the same place as you. Had mammoplasty on 29th October, 2 nodes removed, one positive so now waiting for axillary clearance booked for 29th Nov. Wish I didnt have to wait so long. Also 3 margins were not clear so they will open up wound and remove more. I have been told grade 2 also ER pos HER neg. I am also terrified and cant focus on anything but positive node. Imaging all kinds of scenarios now. I am also known to be a very strong women but feel like a baby at the moment. My consultant says it is early breast cancer but how can it be early when it has already spread. I am a looker after of everyone else. Good luck for Wednesday. Please let me know how you get on. We can do this
Hi JD and ladies - looks like quite a few of us have white coat syndrome. As some of you other ladies said, my blood pressure shoots up the minute the machine comes out - but no good even if I do it myself at home! After my mastectomy the night nurses were popping in every 2 hours to take it so it was impossible to sleep. Just as I finally dropped off they came in again and I woke with a jump - BP rocketed and the nurses called their supervisor and I had a little group of nurses at the end of my bed muttering to each other about whether they should call in a doctor. Unsurprisingly that didn’t help! Had to go in for another op to remove more lymphs when sentinel node unexpectedly had spot of cancer. I begged the surgeon to let me go home afterwards and not stay in overnight as I couldn’t face that again, and he did. So, at the end of that ramble, JD you’re not on your own! By the way, I’m 3 years on and doing fine, as you will be too. Xx
Hi Debbie,
Thanks for posting.
You are the only other person I’ve come across that also can’t take it at home…that’s the same as me ?
Have you done anything about it? Xxx
Many thanks for replying it means such a lot to know I’m not on my own with this.
As you can imagine I’m feeling super anxious right now as due to have my 2nd op later today ??
Just thought I’d give you an update as I’ve had my 2nd op and managed to get home last night ??
Thank you all for your advice on dealing with this with white coat syndrome ?
I spoke with my wonderful consultant and my BC nurse beforehand and explained how bad my anxiety had got.
My consultant then pulled all the teams together (ward nurses and theatre staff) and briefed them fully.
My BC nurse came down to the anesthetic room with me, my theatre nurse stayed with me for the full time in the recovery room and my consultant authorized the constant BP monitor to be removed and just do the one whilst in there.
Once up in the ward she had also advised to keep the BP monitoring to a min with reassurance throughout ?