I’m new here so firstly would like to say hello to everyone :womantongue:
A few weeks ago I noticed my right nipple was cracked and I kept getting this sporadic burning sensation in the nipple and areola. I made an appointment to see my GP planned to tell my husband that night but then he came home with the awful news that his mum had found a lump. I felt like I couldn’t say anything to him and went along to my appointment without anyone knowing. Long story short, my mother in law was diagnosed last Friday and her op is scheduled for Wednesday. My GP referred me (after initially giving me some steroid cream foe eczema) and I had my appointment at the clinic yesterday.
In the end I had to tell my husband, as I felt terrible keeping it from him but equally awful adding to his worry about his mum. I kept telling myself I would rather wait until I had some news rather than add to his worries and if it turned out to be nothing, then no-one would be any the wiser and no harm done. As it turned out my appointment was early evening and, as we have two young children, there is no way I would be able to disappear for an hour or more without everyone wondering where I was - so I told hubby, who has been wonderful but we decided it best not to tell anyone else for now (we had to come up with a cover story for our absence, as my in laws very kindly agreed to have out boys until we got home).
At the clinic the consultant couldn’t find any trace of any problem with my nipple but sent me for a mammogram and ultrasound. Mammogram was normal but the ultrasound showed a lump of 9mm (and was extrememly painful) and I knew something was up as the way the nurses treated me changed very quickly - from lighthearted chat to worried expressions. I then had a biopsy which I gather is routine if a lump is found.
The consultant also acted very differently towards me when I went back in and said the scans are graded from 1- 5 with 5 being the most suspicious and that my mammogram was a 1 but the ultrasound was a 5. There was also a breast cancer nurse present at this point and I was given a little card with a contact number on. Am I correct in thinking that they only gave me this because they are pretty much certain it is cancer?
I also had a further fine needle biopsy of my nipple and the consultant spoke about Paget’s disease which I gather is a breast cancer affecting the nipple. I wasn’t entirely surprised at the outcome because I could tell there was something not right with the breast but it did shock me how quickly I went from being a “we’ll just check it out to be sure case” to a pretty much dead cert within a few minutes.
I get the results next Thursday but I don’t hold much hope for good news - not from the reaction I got at the clinic. Also I asked the breast nurse what else it could be if it isn’t cancer and she (whilst being very nice and kind) didn’t really give me much of an answer.
Hubby and I have decided to wait for his mum to have her op before telling her but I have to admit I am finding it hard. Obviously I am scared stiff but quietly resigned to fighting whatever comes my way now. I am 38 and wonder if there are others around my age with Pagets - as the consultant did say I would be very young to have it.
Sorry for the looooooong post. I meant to keep everything to the point but got carried away!
Hi and welcome to the forum we don’t want to be on but is a huge support through this awful time!
I am so sorry to hear you have been referred and having to deal with your mother in law going through it too. I don’t know much about pagets disease but a friend of mines mother in law had it and after minor surgery and radiotherapy is doing fine. Fingers crossed you get good news though.
There is a lot of support out there if you do get diagnosed and you will find strength you didn’t know you had. I have a diagnosis of bilateral bc. I had a mastectomy on right and lumpectomy on left and have just been told that I need another mastectomy on left plus full lymph clearance and chemo. If you had told me 3 months ago I would be facing all this and somehow getting through it I wouldn’t have believed it!
This forum is a mine of great advice and support and has helped me so much.
fingers crossed for good news and that your m in law is ok too.
Got my results yesterday and am more relieved than I can say.
Apparently it’s not BC and is a fibroadonema but my consultant is sending me for a vaccuum assisted core biopsy just to be absolutely certain, as my ultrasound result was a level 5. She says my results are odd because the mammogram was a 1 so no abnormality there, but because the ultrasound result was so strong, she was practially convinced of my diagnosis before the biopsy results came back. She said the whole breast care team had a meeting about me and what to do for the best and apparently they all agreed that they would have given the ultrasound a 5 too.
I know I shouldn’t be worrying still, but I can’t get my head around it. Over the last week, I’d pretty much come to terms with having BC and now they are saying all is well and good. I don’t want to sound like I am trivialising anything that anyone else here is suffering with, and I really don’t want to sound like I am attention seeking, but this time last week I was being told it was a higher than 95% certainty. I believed them and tried to accept it (I even went out and bought post surgery bras in anticipation). Now I’m being told that I’m ok and I just don’t know what to believe. I know it sounds silly to still be worrying over nothing but my head can’t get around the sudden change.
Has anyone else been through a similar exerience?
My consultant says she will remove the fibroaodema if I want her to, but I don’t want to have unecessary surgery, although I feel like it would be for the best just to get it out to put my mind at rest and just in case they are wrong in their diagnosis.
On top of all this, my mother in law was recently diagnosed (as I mentioned in my first post) and underwent surgery two days ago. She’s (fingers crossed) doing ok and her consultant says it all went well, but I can’t help feeling guilty. We still haven’t told her about my concerns, as we don’t want to add to her worry, but keeping it secret is proving tough.
Thank you for your replies and I am so sorry to hear both of your stories. I hope you are both staying strong and positve and wish you all the best.
I had the VACB last week. It wasn’t very pleasant but it’s done now and I have to wait until the 10th December for the results. I am keeping my fingers crossed for good news and am trying to focus on the positives. I will definitely have the fibroadonema taken out, as I don’t think I will ever be entirely happy until it is.