Worried all over again

Hi. I was diagnosed with breast cancer in june. I had ct, mri and pet scans all before I got my results and treatment plan. Thankfully there was no spread and my consultant had said they were aiming to cure me. I’ve had chemo and recently surgery. But I had a telephone appointment with my consultant today. Apparently, although they managed to remove the tumour and lymph nodes (6/8 cancerous) that there was a ‘significant’ amount of active cancer cells. So she wants to put me in for another ct scan in 2-3 weeks. She has said that although she doesn’t expect there to be anything on this scan that, I am high risk for recurrence. Obviously I’m terrified now and I’m worried that something will show up on this scan. If it does, then they won’t be able to cure me. And, although I always knew there would be a chance of it coming back, but now I know it’s high risk is an awful thought. I’m really not coping now, I thought I was going to get over this but now it’s not looking likely. Its completely come as a shock 

Hi Amy

As one high-risk to another, I want to reach in and give you a big hug.  I’m now close to 2 years on from finishing my treatment and recently had to have another MRI because of an enlarged lymph node in my neck. 19 of my 21 nodes had been infected so I’m short of lymph nodes on that side now! It was nothing but an enlarged lymph node. The fact that we are high-risk doesn’t mean the cancer IS going to recur; it means there’s a stronger likelihood and our teams will watch us with an eagle eye and pounce on anything ‘just in case’ to ensure that, if it does come back, it’s caught earlier rather than later.

Your scans were clear even before your treatment. They have removed the active cells in this surgery but they will want to be absolutely sure you are clear by repeating a scan. You’re obviously in good hands with your team (although I’m surprised at the use of the word ‘cure’ which is kind of finite in a very uncertain field of medicine).

After I’d finished my treatment, I felt able to ask about my diagnosis (I really didn’t want to know anything much during treatment). My b-c nurse took me through my record and explained what everything meant and what treatment had dealt with what. There was one thing she omitted so, feeling brave, I made the ridiculous decision to google it that night. I cannot describe what that meltdown felt like when I read that my prognosis was ‘poor’. I emailed Belinda in desperation and she wrote me a reply that changed my thinking entirely. Basically the statistics are there for the experts. They inform our treatment. The same goes for the labels. You and I are ‘high risk’. We will be monitored closely. We can’t change that. But should we live in fear?

Let’s say ‘high risk’ means a 30% chance of it coming back. That terrifies me. Until I look at it the other way. There’s a 70% chance of it not coming back. I can spend all my time terrified it might come back and live to a ripe old age and die peacefully in my bed. But I will have wasted a lot of my life living in fear. Alternatively I can accept that it may come back, there’s nothing I can do about it so I’ll worry about it when/if it ever happens. I may still die peacefully at a ripe old age but I’ll have been a lot less anxious. It’s not a simple choice but, the more you think it through, the easier it gets - I’ve found (and I’m a serial panicker). Just don’t google anything!

I hope you find a way to manage your anxiety and perhaps achieve a small shift in your perspective. I don’t think we have a cure for cancer yet (maybe someone will correct me?) but we have lots of treatments to remove as much of the risk as possible - as your team are showing.

I wish you all the best with your results. If you want to see my b-c nurse’s email, just PM me and I’ll send it to you. Take good care of your emotions now.

Jan xx

Hi Amy - I am so sorry to read your message, but I hope you feel comforted by Jan’s wonderful message. I think most of us worry about recurrence and I am also going ask Jan if she could share the message from her BCN with me too. 

I am trying to think if there is anything at all I could add - but I don’t think there is. Except to say it isn’t always easy to put all this great advice into practice. Sometimes you need to just keep chatting away, even if you say the same thing over and over - in that case, we are here to listen and chat with you, any time.

Sending you love and hugs, Evie xx

Hi Amy

out of interest are you her negative or positive ?