It's interesting to see how people who seem to have basically the same diagnoses as you have so many different treatments and experiences.
The common thread running through is how awful the waiting for results is, the panic and the anxiety which no amount of discussing it with friends alleviates.
Reading about the side effects of radio therapy and having to sign up to unknown and possibly life changing late effects.
Realising that whatever treatment you have had there is no guarantee that it wont come back! A life sentence of background worry.
I have /had DCIS , 22mm , left breast ,discovered after routine mammogram. My Mum had breast cancer and died of metastatic related cancer at 90. When I used to take her to see the oncologist I never thought it would be me going there 2 years later. I am 70 and think my attitude has probably been very different to someone of 40 with small children, I have been panic stricken, how much worse it must be for those ladies.
When I went to my first meeting where the results of biopsy confirmed DCIS, the nurse told me I was lucky because if you have breast cancer, that is the best one to have! Probably true but not helpful that day. The surgeon had an ethnic accent which was difficult to understand and having to say " Sorry , what was that? I didnt quite catch it? " constantly didnt encourage me to ask enough questions as it became embarrassing asking him to repeat everything.
I had a wide excision which left a crumpled scar under my breast and a large area of puckering above the scar, my nipple now points downwards as if pulled down and tucked under the breast. I read here about careful surgeons who move the nipple higher on the breast to leave fewer scars etc. Wish my surgeon had been a bit more careful.
I then needed radiotherapy and had a wait of 11 weeks before I started my 5 sessions. As it was a left breast and I needed to do the deep inspiration too. The planning session was fine, the radio therapists very supportive. I really didnot want the treatment and was/ am convinced that I will be the one to get the dreadful late onset consequences.
I really didnt realise how anxious I was, at every visit there was a wait of at least and hour and a half before I got into the treatment room and by that time I was so stressed and wound up by the time they had got me in the right position that I physically had to restrain myself from getting off the machine and saying Right, that's it, I very had enough I cant do this! And going home. Retrospectively I wish I had said more to the staff , but they kept on saying you might have to wait and it was because the people with bladder and prostate cancer took more time.
There didnt seem to be any appreciation that people could,and were having panic attacks. Thank goodness it was only the 5 days , I couldn't have done 15!
A week after the radio therapy I have been very lucky not to have had bad skin reactions, I am absolutely shattered, have had a constant headache and ache all over, but nothing I cant deal with. My horrible puckered area under my breast has now gone hard and crinkly and makes me feel even more mutilated. My nipple is really sore because it carrys the weight and friction of my heavy breast in my bra. But I'm thankful that I've got this far and that it was discovered this early. Also I havent had to have any chemo etc. which I'm also thankful for.
My hope now is that I dont have any late effects and obviously that it doesn't come back. The scars I can live with.
Thanks for letting me unload, just needed to tell someone who would understand because they have been there.
Good luck everyone, you all deserve to get through this horrible treatment and be clear for good.
