Hi, I'm reaching out I suppose to just lighten the weight in my head. It's been a whirlwind over the last few weeks. I have BRCA 1 gene, I was offered a risk reduction mastectomy 10 years ago but refused. Over the last year, I had so many mammograms and biopsies.I definitely became complacent with my frequent new lumps. It's only when my skin changed on my breast that I panicked and took up the offer of the double mastectomy with reconstruction. That was on 30th April. Three weeks later, I was told there was cancer in my breast tissue and was sent for a PET scan and ultrasound on lymph nodes. My lymph nodes looked 'exemplary' considering I had surgery only 3 weeks before, they weren't even swollen. I was optimistic attending the clinic on Tuesday for the results of my PET. I learned that I have HER +3 cancer which has spread to my liver and a spot also found on my pelvic bone. Was told it's incurable but manageable with treatment. I'm devastated. I don't see the oncologist until next week. I'm so, so, scared. I have zero symptoms of any nature. Then yesterday all I felt was sick, tired and the need to rest. Now crazy thoughts going through my head that the cancer is rapidly spreading throughout and I'm not going to survive. My husband and adult children are stepping on eggshells around me. I'm putting on a show for them when in reality I am so scared. Keep saying to myself, wait for oncology. I just feel trapped in my body. The surgical bra isn't helping either, I feel strapped up. Just wondering if anyone has any tips that can get me through to Wednesday for oncology appointment.
Hi Emma12 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community, and I know how scary it is when you're first diagnosed.
The online community is divided into different support groups so I'm going to recommend that you join the secondary breast cancer group, where you'll connect with others who have the same type of cancer as you, and also the living with incurable cancer group where you can share your worries and emotions with others who are living with an incurable diagnosis.
To join, just click on the links I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
Sending virtual (((hugs)))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
