Hi @Traynota I was diagnosed with lobular cancer 20/2/17 .I had a lumpectomy and sentinel biopsy March 2017.The lumpectomy did not have clear margins so back for a re excision 10 days later when clear margins determined.The sentinel node biopsy removed 2 nodes one of which had microstasis.I then had radiotherapy 16 rounds to mop up random and have been on hormone therapy Letrozole 8 months which is going ok.The lumpectomy/ sentinel node biopsy basically enables detailed pathology of your cancer .
In the initial stages my strongest advice is to take someone with you for medical appointments to provide a second pair of ears as your listening may be clouded for a bit with shock.I’d also highly recommend keeping a diary of treatment details - the BCNA My Journey Kit includes one which is quite useful. I also found the BCNA kit suggested questions I might ask medical staff as I tended to be a bit numb for a while and things can also be quite pacy.
I found medical staff and even non medical staff very caring and supportive during treatment so felt somewhat cocooned from fear once the ball started rolling.The hardest part for me was when when active treatment ended after radiotherapy when I felt alone and lost as I was expected to return to my former life when I was no longer my former self. That’s when this blog and local support groups became invaluable as I could share and learn from others and most importantly I learnt life does go on.
Small tip I did not know - you can blend treatment between the public and private systems which is especially relevant for radiotherapy which can have costly excess in the private system -mine was $2000 not covered by health insurance.
Radiotherapy is intense as you have daily zaps with just weekends off so can be tiring. The actual treatment is quite quick though just a lot of travelling back and forward.Creaming carefully during radiotherapy is critical - many here used Moo Goo with great success. I used Calendula cream ( which I liked )at my centre and Dermaveen at home.I am a very fair red head and my skin came thru fine but there are side effects that can linger months after radiotherapy ends.I do not recommend Sorbolene I found it a poor emollient.
Hormone Therapy so far has been ok but imo it is critical to stay active. I walk daily for an hour and do a gentle stretch and balance class twice weekly.It is not always easy to do so but find I can move thru joint pain and really feel it if I don’t.
I am happy to answer any questions if I can and talk more about what I written above.
Just remember you are not alone and there are many who have gotten thru this.Stay communicating on the blog and we will all help you thru this. XO
