Back again

 

Hi,

I seem to to have found myself here again!

My first brac1 diagnosis was in 1993 I was 24. Treatment plan, lumpectomy, chemo, Tamoxifen , and radio.

My second diagnosis was in 2004. Treatment plan, double mastectomy, chemo, radio, reconstruction no barc1 or herc2

Since my first diagnosis to left breast in 1993. After treatment I began to experience altered sensation and weakness in my left arm and hand. This left me with an appointment for a nerve conduction study, and and MRI examination to further investigation. The results in around 2006 came back showing as damage
from radiotherapy to my Brachial plexus,

In 2014 I was invited to attend the Bath Mineral Hospital that offer a two week in-house rehabilitation programmefor patients experiencing damage, pain, scycological damage due to this awful thing. So I met with an Oncologist, And a great team, who worked so hard. I mention the Oncologist. As she never seemed concerned with the gradual hardening orotund my neck.

Upon my return from the rehabilitation in bath, I came back relaxed, upbeat, and prepared to continue with the exercise plan. I thought the programme was brilliant, and still do. What I wasn’t prepared for was the aftermath that came with it when I came home. My pain levels went through the roof. I went fr being on 0 pain meds to Morpine patches, including others. I was zapped of energy, and generally felt unwell, although a bunch of bloods came back ok! How my employer kept me on is beyond me!

So skip to November 2015, I visit a pain specialist, who in turn said “as a matter of opinion” I wil reffer you to a local Oncologist. Who in turn referred me to have a CT scan, and MRI just for my own piece of mind.

Had CT scan on 28th Dec 2015. By the time I got home my mobile was calling from a Breast Care Nurse, asking me to get myself to AnE for treatment for a blood clot they have found on my neck, and that we will have you back into clinic to arrange three biopsy to be taken from the hardening of your neck,

After a consultant and junior Dr looked me up and down a few times, medicated me for the blood clot (daily jabs in tummy), we finally here them utter Acute Oncology! Thanks, the moment we knew we were back. Once on the ward a nice Oncologist was sent to see me, with the news we have a recorrunce 10x5 mass in my left neck, inoperable, branching down under my arm, pushing toward lung, also wrapped round blood vessel, and T 1 front and back. Bit to much to take in at this stage. I hear LUNG, INOPERABLE. And we were told that they were hoping that the biopsy were going to detect BRAC1, as more options open to us. We were left to take this in, and I was released NYD with sterroids, sleeping pills etc. Oh and to wait for the MRI on Sat 16th to see if I had cancer to the spine! The wait and sheer terror is the worst,

Since then I have lost a stone in weight, and taken to my bed because I don’t know what else to do. I have family who can’t understand why I am not ready to fight yet, and the simple thing is that, if I don’t yet know what cancer, stage, prognocis etc I am fighting for, is there going to be any point to a treatment plan.

I need my family to understand that there must be a certain degree of fight, positivity, support, and digniy for us all to do this, and if I can do it with dignity I will.

Thanks for reading
Tina

 

Oh Tina…i’m so sorry to read your story. I too had recurrence 2.5 yrs after original diagnosis which was misdiagnosed and left untreated for 6 months. I was then told i was in remission after my first treatment but a few weeks later developed a pulmonary embolism (6 months of daily injections) and then my skin mets returned with a vengeance. I now have them all over my chest abdomen and back and have had several failed treatments. No one realises how hard it is to keep ‘fighting’ unless they have been there…but fight you will !!..you need time to adjust and take things in and hopefully when you have a treatment plan you will start to feel better. I have found this forum invaluable to have a rant, rave, cry etc with people who really understand. Its so easy for people to say ‘stay strong’ ‘be positive’ etc bt they have no idea. I hope by posting on here we will all be able to help in some small way. Much love. xx

Hi Tina I have also just been diagnosed with secondary bc its in my liver now. I was only diagnosed last Monday 4th Janusry 2016 after spending Xmas/new year in hospital. I only finished my BC treatment in August. Like you I am absolutely petrified xx