0-4 in 4 weeks….

Hi Tangle123

I hope you are recovering ok from the surgery and that you post op pathology comes back soon.

It must have been a shock to be told that there may be some mets to your lungs. 

How are you doing? Do give the Support Line a call if you need to talk it through with someone.

Remember also your CNS is there to support you and may well be able to give an idea of what may happen next with treatment. 

I am sorry that you have had this news today. 

Jane

Thanks Jane - it’s just odd and scarey to think I wouldn’t have known except for an unrelated cough prompting the CT Scan; and makes me wonder where else it might be

I emailed my CNS and she said no meeting until 2/10 at earliest - just that, no offer of a call, support, put more context on it - just a one  liner. Feels like they have written me off

I'm sorry to hear this and it must be such a worrying time for you. I'm sure they haven't written you off. I've had lung mets on and off for 3 years. They come and go depending which treatment I'm on. The first treatment I had was Provera which worked on the lung mets but not the other mets I had so they took me off it. The second treatment was an immunotherapy called Lenvatinib which I took with Keytruda an infusion. That worked perfectly and made my mets stable and no further progression. Unfortunately my kidneys didn't like it, so after 18months I was taken off that treatment in January this year. Further scans show slight progression and return of the lung mets. I am well and they don't bother me, growing at around 1mm a month. At the moment I am trying Letrozole which is an estrogen blocker to see if that does anything. My next scan is at the end of October. Fingers crossed for you and I hope everything goes well.

Thank you - that is so helpful to hear; i cared for my sister who died of stage 4 BC earlier this year, so my experience is very dominated by her journey. 

I can understand how you feel. I think sometimes they are so used to dealing with cancer that it can be overlooked how worrying it is for non medical people to be given unexpected new like you have today. I am sure you are not being written off but I understand why you feel that way. There are several potential treatments that you may be offered that can be effective in many ladies. I see there is a lady below who has passed on some of her experience with hormone treatment and immunotherapy and hopefully others will be along too.

I would imagine that they will need to look in detail at your post op results to help decide with you the best treatment to offer. 

In the meantime, why not give the Support Line a call- if you speak to one of the nurses they would be able to talk you through the more medical side of things. 

The other thing that you could consider is talking to your GP as they would have been sent your results and I wonder if they could shed any light on it for you.