Playing the waiting game but should I be???

Hi I was diagnosed on 22nd Sept, op on 13th Oct WLE and lymph removal (not sure how many but I have a huge smiley face scab on my arm)been told I won’t get my results until 10th November, this seems like forever!
Some of my ‘virtual friends’ on here are saying that this is way too long, 1 of the ladies is getting her results Monday and our dates are exactly the same apart from result day.
I want to complain but I need to be able to back it up with facts does anyone know whether the hossie is right keeping me waiting this long? Are there any deadlines they have to follow?
All the bc nurses say is well we won’t know until then but if we do we will contact you grrrrrr! going slightly crazy here!
thanks for listening to my rant :slight_smile:

Hey Sunflower

That sounds a bit much to me. I had my WLE & SNLB on 12th Oct and I get my results on Tuesday 25th Oct.

I would question 10th Nov - its unreasonable to have you waiting that long - they surely know the wait has to be one of the most anxious times.

Try the BCN team first or speak with your GP to call and chase.

Hi

I would question this - ring and tell them you are anxious and that you really want to know sooner what the outcome was. I knew before I left hospital. That may eb because I was private but still that date seems a little long in the tooth.
Good luck

Ginge x

Hi Sunflower,

I have had two ops now and each time I got my results 2 weeks to the day. After the second op I received an appointment through the post for results 3 weeks later. I got straight on the phone to BCN and said I thought it should be two weeks. She said I was quite right, leave it with me and then received a call back saying it had been changed to the two week deadline. A month does sound rather a long time to me. I would chase it up again, even if you think you are being a nuisance.

Best of luck x

Hi

If it is just standard tests this seem like a long time. However if your tumour is borderline her2+ then it may need a FISH test that can take much longer to get back. Worth investigating though.

Dx

thank you all for your replies, I will go and see my doctor next week got to see him anyway because not ready to go back to work yet.
It really does feel like there is only me who has to wait a month, I hate kicking up a stink and normally I wouldn’t but I really can’t cope with waiting that long especially as it seems like there is no need.
I have called the 2 different bc nurses and they have both said no I have to wait. They said you can’t start any treatment until the wounds are headed i.e. app on 10th november to discuss this, I acknowledged this but asked for the results to be given separately but apparently this is how they do things and it is just procedural!!!
There may be a reason for the delay if they explain that to me then fair enough but so far they haven’t come up with anything, not happy.

Hi Sunflowwer

A month is a long time to wait isn’t it? I had my op on 13th last week and go on 25th to see a nurse specialist or a member of the clinical team. Maybe it depends on where you are in the uk, I don’t really know but a month is a long time, we are anxious enough as it is!!! M

Hi M you are right it is way too long, I am on it on Monday! good luck with your results hope the news is what you are hoping for. How sick will we feel walking in to get those results, I keep playing it out in my mind feels strange that we have no control over this.

Hi Sunflower,

Oh sorry you are in this absolutely awful predicament! I was a bit similar to you recently, in that I’d got a tiny area on my mx scar which I was so worried was a local recurrence. They biopsied it n gave me an appt for the following week for the results. But that appt was cancelled by the appts clerk and she said there were no results as yet, so I would have to go back to clinic the following week.

Anyway, I phoned the bcn who explained the biopsy results had come back and looked ok, but that they’d sent it for further testing just to double check, because I’d said it looked like my previous Paget’s disease. Ok… I know your bcn hasn’t given you any explanation like this, but read on please Sunflower, cos the following day I had to go to my gp for an unrelated matter, and she pulled my biopsy results from the hospital on her computer screen. She read off the full report to me, and I got to know far more from her than from even the bcn, who had reassured me anyway, without this further info from the dr.

So, I’m telling you this, cos when you go to your gp next week, maybe you could do similar, and hopefully they might be able to say to you that it’s gone off for extra testing which will take longer - just like Midge has suggested.

When I actually got into clinic, they told me my results were benign condition, and that not only had I been discussed at breast MDT but also skin MDT. I was really thrilled at how carefully they’d investigated for me, but I must admit that the week before when my hospital appt was cancelled I was upset and very annoyed, until I knew what was happening.

So, my heart goes out to you with you having to wait so much longer than others who are so obviously similar to you, and I just wanted to post this to you in the hope that you’re similar to me, and have had furthr testing done and that’s why you’ve to wait longer. The waiting is horrible, but I know what you mean about if you know the reason why, you’d feel a bit better about waiting.

Take care of yourself, and I do hope you find out something from the bcn team or your gp next week.

With much love,
Shelley xxx

Poor you It does seem a long time. Perhaps they need further tests that have to be sent away like a Her fish test . They eould not be able to give you a definitive treatment plan until it was back. Or they only have a couple of Histopathologists and one might be on holiday or on a course. This is no excuse but can and does happen, they rarely would have cover and there are only so many hours in a day. They might have already put you on line for an oncology session when you are healed. But that diesn’t help you and your wait. The BCN might be able to tell you the basics but the whole case would have to be discussed at the MDTMeeting
In sympathy
Caclkes.

It seems like absolutely ages that I posted this feels like a lifetime ago at least next Friday I will be sat here with a plan, being stuck in this ‘waiting room’ not knowing how good or bad things are is just dreadful

Sending best wishes to all the ladies out there like me who are waiting for their results