Is anyone else in my situation? Waiting for more test results....

Hi, I’m just wondering if there is anyone else either in my situation or who has experienced something similar?
I had an ultrasound and a punch biopsy last week after I noticed changes to my left nipple which has been ongoing for over a year but was checked oto last year and I was told it was more than likely eczema.
i returned today to see the doctor and he told me that the biopsy results aren’t complete yet but that he’s 90% certain I have Paget’s which is a rare form of breast cancer of the nipple. He then sent me for a mammogram which showed abnormalities around the lymph area and I also had another ultrasound in the same area. This apparently shows chalk/calcifications which also require further testing so I’m now booked in for a vaccum assisted biopsy next Tuesday which will mean yet more waiting for results.
I also saw a Macmillan nurse today who explained that the doctor wouldn’t have asked her to speak to me unless he was pretty certain I have breast cancer. She was really nice and she’s going to ring me on Thursday which is when the original biopsy results should be known.
I’m concerned because its very likely I have Pagets but does it mean I also have another type of breast cancer since they’ve also found another area of concern? It’s the waiting that’s the hardest, I expected to know exactly what I’m dealing with today but now I’ve got at least another 2 week wait!
I know having read up on it that Paget’s is very rare so I would love to hear from anyone else who is either awaiting results or has been diagnosed.

Hi LozaB

Welcome to the BCC discussion forums, you’ve come to the right place for some good, honest support from the many informed users of this site.

While you are waiting for replies, could I suggest you give our helpline team here a ring and have a chat with the staff, they’re here to support you through this. Calls are free 0808 800 6000, lines open Mon-Fri 9-5 and Sat 10-2

Also, I see you say you have read up on Pagets, but in case you haven’t read the BCC publication, I’ve put the link for you below.

Take care,

Jo, Moderator

Hi LozaB
I don’t have the same situation as you, but there are similarities. I know I have at least 2 spots of microcalcifications that are near the chest wall and difficult to see (and biopsy) under a mammogram. The breast surgeon saw another type of lump elsewhere in same breast that does not show up on MRI but does on ultrasound. I am having an MRI guided biopsy tomorrow on “everything they can see” with quite possibly another later under ultrasound guidance (if it is not found on the MRI). I also wonder if that means 2 types of cancer… Unlike you I have not been given any info - just the comment that they cannot make a diagnosis until they know for sure. That is fair enough as I have enough speculation of my own mind to contend with. I don’t want the breast surgeons to add theirs too!
I am sorry that I cannot share more experiences with you. I don’t have any symptoms and mine is not likely to be Paget’s. But I did feel to respond to your post and let you know you are not alone. I am sure someone with more wisdom and experience will come along soon and be able to put your mind more at ease…

Hi ThinLizzie,
Thank you for replying it is nice to know I’m not alone as I’m sure it is for you. It’s the waiting & not knowing that I’m finding the hardest.
Since my first post I’ve now been told that I definitely have Paget’s of the breast on my left nipple but as ‘suspicious’ calcifications were found on my mammogram in another area of the same breast I’m due to have a vacuum assisted biopsy which I think is similar to what you’re due to have but guided via mammogram.
I wasn’t overly surprised with the Paget’s diagnosis to be honest since the used the dreaded google beforehand & all my symptoms matched. The only reason I am a bit shocked is because I’m only 33 & the average age of being diagnosed with this type of breast cancer is 67! I feel very unlucky! I’m just hoping the second biopsy doesn’t show a secondary cancer however I know this is likely as most cases of Paget’s also have a secondary cancer in the same breasts.
What symptoms did you have if you don’t mind me asking? Could you feel a lump or has that only been discovered after scans?
How did your MRI guided biopsy go? Was it painful & how long have they said you’ll have to wait for your results? I hope you’re not worrying about it too much, this is definitely the worst part, the waiting! Once I was told my definite diagnosis, although shocked I actually felt a bit better as it was a relief to know what the problem was & that I’ll now be getting the treatment I need.
Good luck with everything, I hope it’s good news when you do get your results & that you’re not waiting too long & thank you again for answering my post.
LozaB x x