I went yesterday for a check up with the oncologist. I am now 5 years on from diagnosis with 2 large tumours and 6 positive lymph nodes. I have had several scares needing Ct scans etc and was told I had a poor prognosis as some of the lymph nodes had extra capsular spread. Luckily, all scans proved clear.
I asked him about continuing to take Femara for longer than the 5 years as I am worried about a relapse when I stop the tablets.
I was really surprised when he said no and that I was now “cured”. He said the treatment had worked and there was no evidence to show that more than 5 years of aromatase inhibitors were of any benefit.
Having followed these forums for 5 years I am well aware that you are never really cured and that many others have had recurrences or developed secondaries after the 5 year period.
My family are all ecstatic and I dont want to put a dampener on their feelings , but I am feeling confused.
I am rather scared to be left on my own and keep thinking it is the tablets that have kept me healthy and what happens now.
Should I just celebrate my good luck ? I would welcome any advice from others.
Hi Alison, Just read your post and I can understand how you feel. It’s like the safety blanket has been removed. My inital dx was 18 years ago, mastectomy, chemo, rads and tamoxifen. I didn’t have any more trouble until Jan this year when I was dx with secondaries in liver and spine. So although I know you are scared, as long as you are still going to have scans and check ups, you will hopefully be well for the rest of your life. To be honest, I barely gave it a thought after the first few years.
Although I now have secondaries, I’ve had some more chemo and am now on Arimidex and Bondronat tablets on a daily basis, so hopefully that will stop the spread. I intend to live a happy life as long as I possibly can.
I suppose what I’m trying to say is enjoy your good news with your family and if you are concerned about anything, have it checked out immediately. Congratulations and I wish you all the very best for a long and happy future. Lots of love, Dianne x x x
From everything I have read on here I would suggest to put your mind at ease get a second opinion. It is v unusual for an onc to use the cured word so if you have any doubts speak to someone else. If they agree then great get on with your life. If not you can explore other options. I imagine you feel quite vulnerable at the moment and what you need is a little more peace of mind. Dx