Hi all, I had my lumpectomy and sentinel node biopsy on 11th December. Was told 4 to 6 weeks wait for the results. Just over 4 weeks gone and I get an appointment message on the NHS app, 20th January.
I felt so encouraged by this. I thought well if I needed another surgery they would have called and booked me in for that. There’s no way id have to wait for another appointment just to be told they need to book more surgery. They wouldnt waste time like that surely? I felt so good I called the breast care team hoping they would tell me over the phone, clear margins and no spread, that the next appointment will go into future detail about the next step. Instead the nurse said she couldnt give me any info and that it would be discussed at the next meeting
I wish I hadn’t called them. Thinking the worst again now. They don’t give bad news over the phone do they
I’m a fellow BC patient, recently retired NHS consultant and complete catastrophiser!!
Try not to worry- probably doesn’t mean anything. All the results have to go through the MDT meeting prior to the follow- up appointment and they probably haven’t had that meeting yet for your results with the delays over Christmas/ New Year / doctor’s strikes etc etc. Try to stay positive. The surgical team will have done their very best to remove all the cancer and they’ll be very experienced at doing just that! The person answering the phone to you may not know your case at all and is just giving a standard reply as most likely they have to field these types of enquiries all the time! The results will come from the surgeon generally!
They will ensure you get the best possible care and go on to get to the other side of this with the best treatment for you!
Stay strong and you’ll soon have all this in the rear view mirror!
Thank you for your reply. It makes sense that they might not have discussed things yet. I forgot about those Friday meetings.
I am fully over thinking things and panicking again. A habit I hoped I had under control. I go from thinking that it’s a good sign to not be asked in asap to maybe its all gone wrong and they have to start completely from the begining again
Please try not to panic. I had a haematoma thingy in my boob after lumpectomy and went and had it drained by the surgeon. This was a couple of days before I had my results appointment scheduled. There’s no way they didn’t know the results then (they even hinted saying it would be a “nice appointment”) but categorically refused to give me the results when I asked saying I had to wait for the appointment. It doesn’t necessarily mean the worst. x
Overthinking things at this stage is completely normal. Waiting for results is the most difficult and stressful stage of the whole BC journey. It’s a journey no- one wants to find themselves on! I tried to rationalise each day by thinking “ OK, no- one is going to tell me any bad news today so I’m going to have a good day and go for a walk, shop etc etc”
Don’t forget that for the clinical team all this is completely routine and their everyday work. Doctors may not realise what it’s like to be on the other side and have your world fall apart ( believe me, I know!)
The MDT meeting will discuss your surgical results with pathology, oncology etc and decide on the next steps and nowadays nothing happens without a MDT!
I had to go in to see them in person as well. The surgeon wanted to check that healing was happening well. By then, they will have lab reports back so they can give you an update on where you’re at. It doesn’t necessarily mean bad news at this point.
It’s so hard not to panic! I would have reacted the same way. As other people have replied, it just is most likely hospital policy to not give any results over the phone as they’re still waiting on the MDT. Fingers crossed for you
You didn’t do anything wrong, you were advocating for yourself.
I’m sorry it’s caught your nerves, but it is natural and also remember you are cancer free until they tell you otherwise.
One appointment I went to with my husband was two minutes and could have been done over the phone. But it is their policy to see people in person.
Thank you everyone. You helped talk me off my panic shelf. If the results came in monday and their meetings are on fridays then my doctor might not have even seen them yet. All my worries… Where’s the proof?
This has been a strong reminder to me that however calm we are on the surface during all these waiting days, our baseline might still be that scared anxious person from day 1. It’s a realisation of how much energy and effort we put in to getting on with our days as normal. I hope I remember this and remember how strong I/we all are
My MDT are a Monday, I have been to clinic and seen my surgeon both on a Tuesday and a Thursday. ??? What she does on a Friday. She did my surgery last Wednesday. I assume she sticks to this schedule weekly…. So as you said they might not even have seen them. But hoping my breaking down what I know from mine helps even more. Cause I’ll sure need reminding of it in a few weeks.
You have done the right thing and reaching out helps all of us too that are behind you in the line for results. We are human and experiencing so much in such a long feeling but actually short time frame.
@foxgem So sorry you have had a few days/weeks of extra worrying. Your mind really does play tricks on you, you start finding yourself thinking something’s not right etc whilst waiting, one day it’s fine and you are just over thinking things and other days you begin to think they are not telling you things because it’s bad news. I know my hospital don’t give results over the phone at all, even if they are positive but I do understand the worry it causes, we all do.
I would just like to say though, although it’s more likely to be good news, if it isn’t, it really isn’t that bad. It’s frustrating that it hasn’t all gone and you have to go back in for an operation but honestly, when I had to go back in to clear the margins, the operation was fine, they used the same scar they used before and by the time I got home I just felt it was like a hiccup, It took me back a couple of days with recovery but that was all. So no matter what your results are, please try to remain positive, easier said than done I know, you’d much rather them be certain that they have got it all wouldn’t you❤️
Please be kind to yourself and take one day at a time. Try to keep busy or even do puzzles etc, I do colouring, I find it relaxes me.
Please come back and tell us your results. Sending loads of hugs .
It’s understandable try to figure out our outcomes out of desperation to try to gain certainty and therefore relieve our anxiety. In fact though, the more we try to do that, the more uncertain we become and the more anxiety we feel. Think about how much itchier chicken pox gets once you start scratching it!
Thank you @SueDerb my mum keeps saying, what can they tell you now that’s worse than “You’ve got breast cancer” Ive already had that news. Anything else is just part of the process. I will try to see another surgery as a hiccup thank you. I did it before, I can do it again. All my catastrophizing thoughts are just so dramatic haha I have a therapy session tomorrow, the first since my op so that’s going to help.
Today I feel like I’ve been hit by a truck. Just half a day spent tense and negative and the result is this! I’ve got to repack all my positive tools and get back to it. The sun is out so I’m off for a walk. Blow the cobwebs away
My goodness, I can relate to the never ending waiting.
I had a lumpectomy, flap reconstruction and sentinel node biopsy on 20-Nov. My surgeon rang with the news that they didn’t get clear margins so I didn’t have to wait for an appt and she could get the ball rolling for the next surgery (30-Dec). That seemed to go well and I should have had an appointment on 14-Jan for results but it was rescheduled for 21-Jan as results weren’t available. Still waiting to know if I’m in the 5% or so who need a third surgery!
Still waiting. My next appointment in next tues 20th.
I had a therapy session today which was lovely. A good reminder to be kind to myself, to allow myself to feel what I feel and stop trying to be strong all the time.
And also whilst in this limbo period to try and stay present
@foxgem did you get therapy through the breast nurses or gp I think it’s something I need to do as feeling very overwhelmed with treatment just wondering who I go to for a referral xx hope your doing ok
I’m so sorry @foxgem , I have no idea why I had it in my head your results were today. I can’t even remember mine at the moment so I have no idea why I would trust my foggy brain to remember yours .
I hope you are feeling a little better after your appointment today then. Don’t be too harsh on yourself, what you describe is what most of us are going through. I’m really glad you are getting support for it though.
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