I was diagnosed with grade 3 triple negative breast cancer 8 weeks ago. I am only 29 years old but have the BRCA gene so the cancer was caught early through screening. I decided to have a double mastectomy to remove the 8mm tumour having been told I would avoid any further treatment if I had the double mastectomy and it had not spread to my lymph nodes.
I’ve now been told that due to the cancer being triple negative and grade 3, I could have chemo to give me an additional 3% chance of the cancer never returning. I don’t understand how the cancer can return if there is no breast tissue left.
I get that it could have spread but my lymphs are negative so the only way it could have spread is randomly through the body. I feel like I’ve been misled having been told I wouldn’t need any further treatment so I chose the harder surgery to avoid further treatment.
The worst part is the doctors say I am in a grey area so I get to choose if I want the chemo or not - there could be a benefit to me with chemo but it’s not clear. I am confused that I now have to decide whether or not I should start chemo, which is a huge decision. Going with chemo means another 6 months with my life on hold plus all the side effects for only a 3% increase in survival rate. No chemo means I will live with worry that it could have turned down the only thing that might save my life in the future.
I know this is a very specific case but has anyone ever had to make a decision like this before?
Hi ERose
Yes, I had to make the same decision.
I had TNBC which was caught early and I only needed a lumpectomy. However, one of the sentinel lymph nodes removed was found to have micro deposits of cancer in it.
An appointment was made for me to see an oncologist who said there was a small benefit (can't remember the figure) in me having chemo and he was happy to approve it if I wanted to go ahead. I decided that I wanted to have every opportunity of preventing the cancer from coming back so agreed to have chemotherapy.
Yes, it did take another 6 months out of my life but I felt it was worth doing to try and prevent recurrence. Fortunately, I didn't struggle with side effects on chemotherapy so I was still able to get out and about, albeit I avoided crowded places and coming into contact with anyone who was ill.
You say that you don't understand how the cancer can come back if all your breast tissue has been taken away but, as I understand it, breast cancer can come back in any of your organs, eg liver, lungs, etc, as it can spread through the blood not just the lymphatic system.
Ultimately it's your decision and you just have to go with what feels right for you.
((hugs))
"Never regret a day in your life, good days give you happiness, bad days give you experience"
