Hi lovely peeps, I posted briefly back in august/september last year (2023), when having found an area of thickened tissue and a bit of dimpling i had just been diagnosed with grade 2 stage 2 er+8 pr+8 her2- bc. 2 tumours in my left breast with a large area of dcis connecting them. I was panicky then but fairly hopeful as there appeared to be nothing in my lymph nodes and was just waiting for my mastectomy date… Move forward to october 23rd and i have surgery with slnb and sent home next day. All the usual stuff, a biggish seroma, numb skin etc but the site healed fine. Biopsy results come back and its grade 3 not 2 with a micrometasteses in one lymph node but other 3 clear, so referred to oncology with suggested rads to axilla and hormone therapy. Not great but still nothing to bad.
Anyhoo I had been having trouble with my back for about 18months prior to finding the dimpling, which i thought was me pulling muscles. I run a pub and the job can be quite physical sometimes so never thought anything about it. Had codeine based painkillers for degenerative disc disease in my lower back so just carried on. Fast forward to December 15th, I slip on ice and wrench my left hip which was painful but i could live with it. I did, for a week.
December 22nd I have pain in my leg and back so severe that i am crying and screaming despite mixing alcohol with my codeine to try and take the edge off. My partner calls an ambulance and i’m whisked off to a&e. Sit there through most of the night just curled in a ball as they couldnt give me anything until the alcohol cleared my system. At 5am i am given oramorph and sent for a ct of my chest as they suspect a blood clot.
It’s not a clot. Around 8am a young doctor comes through to see me and without any pre-amble says i have bone involvement. I look blankly at her and she realises that i had no idea. She says she’ll send my scans up to oncology and sends me home for xmas with 2 bottles of morphine. I numbly get through xmas and new year just keeping busy. I do my research and find out what i can about pone mets. I go to my oncology appointment on 9th January (my birthday) planning to go for lunch with my mum after. Oncologist decides no, as i have numb patch on my back and peripheral neuropathy in my hand she is worried i might have cord compression so i spend the rest of my birthday being thoroughly pissed off stuck on bed rest in the oncology ward. After 3 more ct scans and an mri of my spine they send me home on the 11th to start leuprorelin injections and letrozole.
Widespread bony metastatic disease. I have a bone scan a week later and an xray of the hip that i had wrenched. I got the results 2 weeks later around 1st feb. I’m like swiss bloody cheese. All those muscle pulls in my back were actually ribs cracking, 5 vertebrae are cracked, C4, T3,T4 & T5 and L6. My pelvis is riddled with lesions, I have a couple in my sternum and 1 in my skull. My left femur was kinda thin looking so she sent the scans and xray to orthopaedics. On the 7th Feb I get a call from the ortho consultant asking if i could come in that week as they want to reinforce my leg. I said i couldn’t do that week as i needed to arrange cover but could do the following week. That is how i came to spend Valentines day on an ortho ward having had a bloody great metal rod shoved the length of my femur to prevent it snapping the next time i stepped down hard!
Moving on now I am a couple of months into hormone therapy and the side effects haven’t been too horrific. My moods are a little erratic and i can get weepy for no obvious reason, the hot flashes are generally not too bad except for the few days after the injection when I’m convinced the side effects stack and i can have wave after wave of boiling then freezing, fatigue is annoying especially coupled with insomnia but i seem to be tolerating it quite well. Yesterday i had radiotherapy to my leg to mop up any stray cells that might have been disturbed by the surgery and next week I start Palbociclib so that will be another adventure!
I take heart reading the stories of so many women on here who have been living with mets for years and years and knowing that because I hadn’t had any previous treatment the whole bag of tricks is available, and that so much research has gone into bc.
I just wish the same was true for my dad who unfortunately was diagnosed with urethral cancer 3 months before i found my 'orrible friend and has had 6 cycles of heavy chemo followed by 4 weeks of daily rads and still the damn thing has spread. He is hoping to start pembrolizumab in a couple of weeks if the bean counters give it the go ahead (he is 75).
Anyway I am signing off for now safe in the knowledge that even if positivity is hard, a low level simmering rage will keep me going.
Hugs to all my fellow bc sufferers, particularly those with de novo mets.
Lexi XXX
