I’ve been snooping in the background for the past week & now feel ready to say hi.
I’m 33 and have recently been diagnosed with Paget’s Disease. It’s all come as bit of a shock having first been seen at the clinic in November and told it was likely eczema. I had an ultrasound and was sent on my way to try out cream with a follow up call in January.
The nipple didn’t heal & I was asked to come in for a biopsy. I was told I would get my results over the phone as it was probably nothing. I received my call last Tuesday to come in on the Wednesday for the results. I knew straight from then it wasn’t great.
I think I’ve been through every emotion & right now I feel okay. I’m keeping my head busy and taking advice to stay off of google! One thing I’m having an issue with is telling people. Right now I only want my close family and a few trusted friends to know but so far I’ve only managed to tell my sister. I physically cannot get the words out of my mouth to tell people and as time goes on it’s making me more anxious.
I know my mum will be devastated that I’ve been holding off telling her but I’m struggling knowing that I’m going to cause upset by revealing the news.
It’s been so comforting to read about the amazing support this community is giving to everyone!
Hi brox, sorry about your diagnosis. There is no rule who you tell and when you tell them. I told my boss first. I then burst in to tears when I told my mum and dad. I think that was the hardest part. I only told a select few after that, until I got my treatment plan sorted. Almost 2 years later, there are still a few distant friends that dont know.
You will have a great team looking after you and great support on here too.
Best wishes, let us know how you get on xx
@brox
This brings tears to my eyes remembering how difficult it was to tell my family about my diagnosis. I just didn’t want to bring this diagnosis and all the things involved to their lives. Maybe by not saying it I could kid on it wasn’t true? I knew it would make my family sad, worried, hurt and I didn’t want to be the cause of that. I had always been a strong person, looking after everyone, protecting my children (that was my job!)…but I had ‘failed in my eyes’. But I also knew I had to tell some key people.
I called my husband who was away and asked if he would be able to come home. Of course he wanted to know why and through tears, I said I didn’t really want to tell him on the phone. By this time of course he knew it wasn’t good, and started to ask if our children had been in accidents. Compared to that, my breast cancer diagnosis didn’t seem as bad so I told him and we both cried over the phone.
I managed to tell my eldest daughter whilst out walking and I remember just apologising again and again for the changes this would bring to our family/our lives.
My dad visited for 3 days a week later and I kept putting off telling him unable to get the words out until eventually my eldest daughter told him.
I hadn’t told my youngest daughter because she was doing uni exams and when she came home to see grandad, he got the job of telling her (on his birthday) as again I just couldn’t get the words out through my tears. I explained why she was last to know and thankfully understood.
I guess what I am trying to say is I don’t think there is just one way to give this news, or an easier way. Whichever you do will probably involve tears and false starts. Some people may be harder to tell, some may be told after others and some you may prefer not to tell at all.
Since your sister knows, could she be with you when telling your mum so she can support you both? She could also help by saying ‘Mum, Brox has something to tell you’ so you can’t bow out, or maybe help with the words if you just can’t.
As you say, as time goes on, it gets harder.
You sound a wonderful daughter that your mum will be really proud of - caring, considerate, strong (sounds like you have done all of this up until now on your own) and your mum will be upset but she will be most upset thinking you were going through this on your own. I think (and hope) you will feel better having her to comfort and support you through the next steps.
Good Luck and Big hugs.
x
Welcome to the forum. I’m sorry to hear of your diagnosis.
We’ve all found it difficult to tell our family, friends and work colleagues about our diagnosis. As you have told your sister, could you ask her to sit with you when you tell your Mum? As far as telling anyone else outside your close circle that is up to you, you have to do what is right for you.
Do you have a treatment plan? I was wondering so I can signpost you to areas that might help.
I have added the following links that may be helpful.
Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.
