Still waiting…

I posted a few weeks ago following a biopsy on a lump which was described as having irregular margins and 9.5mm. I waited and waited and received an appointment for yesterday which I thought was my result appointment. Both me and my partner took time off work and attended only to be told is was a scan on my other breast on a possible lump ( this had been previously scanned and was fine) so in floods of tears and upset, the staff told me that my case had already been heard and a scan was ordered which is what I had and now my case is being heard on Thursday with an appointment possibly on Tuesday with my dr. I feel I have been waiting a long time ( since 1st November) if I am going to be told it’s all clear, considering they have had my results for 2 weeks!!! I know not all areas are the same but this is driving me mad and making me think it’s bc or they would have just said that is all clear but we just need to confirm the other breast for any lumps. My weeks are being ruined with worry!! I haven’t made a complaint but I do feel that when I am told either way I will be offering some feedback! Anyone else have long waiting periods?

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Dear Noodles111,

Thinking of you, the waiting game is so unfair. anxiety takes such a toll on us no one can help with cancer, but we can with emotions. I wish I could take your pain away.

Take one day at a time, and don’t forget to makes lots of notes it will help with your consultation.

I wish you health and happiness going forward, please post again when you’re feeling up to it letting us know how you’re doing.

Biggest hugs by brave lady Tili :rainbow::pray::rainbow::pray:

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Hi Noodles111,
I completely understand. My process started beginning of October and its been a waiting game. Now, having had a lumpectomy and sentinel node biopsy on 20th November, I was told I would have my follow up to discuss results etc on 10th January!!!
I’ve read on her that women are waiting 2-3 weeks so effectively at least double that! So I spoke with one of the Breast Cancer Now nurses and even she said that was unacceptable and that I should speak to PALS at the hospital. They have intervened and I am now being told that if my results are back sooner, they will see me - they will not “sit on them”. I decided to call the pathology department myself (at the hospital 10 miles away) that processes the biopsy results etc. I was told there are no delays and the results should be back at the breast clinic by the 5th December! Sometimes you just have to shout to be heard. I would suggest if you’re not being heard - just speak to PALS at your hospital.
As a result, I will be calling the Breast clinic on the 6th to check and ask when my appointment will be!
Really hope you get the answers soon - its so awful and unnecessary having to be subjected to these wait times.
Wishing you the best outcomes X

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Alex2 that is unbelievable! I only waited 9 days for my lumpectomy/SNB results! Admittedly have now got v long wait for radiotherapy though! Really hope they don’t make you wait that long…that is really cruel x

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Hi Blue80,
Can I ask what area you’re in, South East, North West?? You seem to have gone through your process quite quickly, up until your Radio wait.:heart:

I am Yorkshire x

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I think this is the frustrating part, no two hospitals or trusts are doing the same. I think the guidelines help but means nothing in the scheme of things.
What we do have in common is that the waiting is so hard, sending love to those fellow waiters in this no man’s land xx

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Hello Noodles 111

On my first biopsy in 2019 I also waited three weeks, in May of this year awaiting the biopsy of my lung, I waited three weeks again.
Sadly it takes as long as it takes.

In 2021 I took part in a project run by Salford Royal hospital, it was a new thing they are developing under research. Part of this process was to actually attend the Pathology lab and listen to the consultant explain that each sample taken from a person, may consist of up to 50 or 60 slides, each slide is looked at by Pathology researchers then co read by consultants . Each slide viewing can be up to an hour.

What I learned that day was the work done behind the scenes on determining an outcome is long and arduous process, done by professionals. Yet they are under so much pressure due to the volumes of samples by increasing numbers of patients daily.

As I said at the time, if as a patient we were aware of the process and time restraints we would understand the wait better. More so we would be more mindful of the detail and hard work they themselves were doing…I was that humbled whilst there i cried…

Hopefully your wait will soon be over, and :pray:t2::pray:t2:. That you get a non cancer diagnosis

Take care of YOU

D

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Hi @PHBF64

I agree - the waiting is awful on us but we don’t know what’s going on behind the scenes and I think if we did it would be easier rather than feeling that we’ve been forgotten about .

I had an awful extended wait for the result of a check mammogram following a procedure that I knew had failed ( so already knew I would need surgery) . I later found out that not 1 but 2 Radiologists had to check the results and unfortunately they didn’t agree so my films then had to go to someone else to check. I can’t say that it would have made me happy to know that but I would have been happy to know that they were dealing with my case and taking such a lot of care to get it right .

That sounds like a really good project
Joanne.

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Hi, I completely understand your concerns. The constant waiting for results is a complete nightmare and difficult to function until you know. It was 2 weeks after my initial mammogram and ultrasound biopsy I received the result of my breast cancer at an appt on 7/12/2021 albeit from a nervous registrar rather than my consultant which I thought was wrong at such an important time. I was advised an MRI was required. Results 21/12 the MRI picked up other questions meaning more biopsies. My biggest concern was all this delaying treatment but they quickly started chemo on 7th January 2022 with various biopsies and MRI scans etc proceeding concurrently. Personally I think you should have been given your initial diagnosis after 2 weeks and advised that they also needed a scan (MRI?) to check your other breast. Always 2 wks between tests and results is awful plus waiting 1 to 2 hours at the clinic for results. I finished my treatments in January this year. You will be stressed out and your life is in turmoil, I took one step at a time but the 2 wks wait for results were indescribable and the stress off the scale. My heart goes out to you, my only advice is to question anything you’re not happy with or don’t understand. I hope you don’t have to go down this path. My very best wishes to you. xx

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Dear Noodles 111,

I feel for you and totally get where you are coming from, waiting for results can be agony and each hospital trust can be different. I have also experienced long wait times in the past both when I have waiting for the results of a biopsy (I got lost in the system) and also when having a routine mammogram after my cancer treatment. Sometimes you just have to contact the hospital team to encourage them to speed up things and get an update. It does sound though that your team are on top of things and are being very thorough so wishing you all the best when your appointment does finally happen.