39 y/o Stage 2 now stage 4

Yes, I have. When I was first diagnosed I was told my cancer was stage 4, as they were seeing "things" on my lungs. I am actually not stage 4, but it took the better part of the year for them to find that out, and that only happened once they went into both my lungs, pulled out the "things" and pathology told them none of it had anything to do with breast cancer.

So the first thing that came to mind when I read your message was me wondering if it is possible for you to ask them to do a liver biopsy to either confirm or disprove their diagnosis.

Having the brain scan and any other scan is a good idea, in my opinion. I had all of these too, with some of them they thought they were seeing things and sent me for further investigations, all of which proved no issues in any body part other than my breast.

During the time I was supposedly stage 4 I had a lot of time to process it all and come to some conclusions. One, the statistics were a little meaningless, for two reasons: first, they include women who are much older than I am, and women who have background health issues, which I didn't. So right there, my own personal statistic/projection would have been better than the overall statistic. I believe this applies to you too, at least based on age. Two, the statistics we are looking at today are based on treatments that were given in the past. They keep coming up with new treatments all the time which some of us (me included) are already getting, and we are going to be part of a future statistic that we are not yet seeing, but which will no doubt improve even on the current statistic for all stages. Three, from conversations I have had with health care professionals, including the medical oncology team and the oncology pharmacists, I have a strong impression they are trying to turn stage 4 into a chronic condition rather than a life-limiting condition, and are starting to see some success already. 

Once these three things occurred to me, I came to the conclusion that I had a good chance at beating it, and I told my oncologist. He was more than happy to go forward with that as the basis for whatever we do. (This was when we still thought we were dealing with stage 4.)

It may take a while to process it all, and your situation is unique to you, but I hope that some of what I have told you here might resonate right with you. Also, if you have any specific questions, go ahead, we are all listening.

Ahh thank you for replying. It’s encouraging to know that it could potentially be something else. Although I know everyone’s body is different.

I will definitely ask for the liver biopsy to be 100% sure. I think what you’re saying about it being a chronic condition is true as the oncologist compared it with diabetes etc. 

I just feel as if I can’t breathe I had prepared myself for chemo and potential mastectomy and now the goalpost has shifted and it’s just feels like I can’t seem to get a break. I only found out about the ‘new’ diagnosis yesterday. I am still trying to find some positivity but it’s proving quite difficult.

Hey 

Im sorry you have had to join here but welcome  

Im also sorry that you now have this added stress with your liver . I was dx about a month ago and a CT scan picked up spots on my liver too so I’m off for an mri next week to check them out further 

They said for sure the liver spots are also cancer ?( I know pet scans are very good but as GC says would they not have to do a biopsy to confirm ?) 

I know how you feel because I am terrified too 

Greycats reply is very hopeful though isn’t it 

sending huge hugs 

L xx

Hi L,

I hope we we both get some positive news. Keep us updated and I’ll do the same if that’s ok. I will definitely ask about the liver biopsy to be sure x 

Yea I definitely will x

Are you hormone positive as well as HER2+ ? 
hugs 

L xx

Yes mine is mine. Is yours? Xx

Yeah mine is ER + and PR0 

L xx

Fab response GreyCatsregarding quoted statistics.  Just like on this site responses always skewed for those just going for initial tests as those that hang around and respond had BC diagnosis as those given all clear leave x

I like the comparison your oncologist has made!

As for trying to find some positivity, I understand that, but I wouldn't try to force it, only do it if it feels right rather than a sense of "have to."

One of the things that helped me regain some sense of control was that I dealt with practicalities. Some of these would be common to all of us, some are different from person to person. It's probably a little early to go into details, but if ever you want to know and whenever you feel ready. Two things I would mention at this point though are: one, get the contact details for your nurse, phone number and email address if possible, as well as what days she is in, and who to contact on those days when she isn't. Two, if there is a Macmillan presence in the hospital, find them and see if there is someone there you feel you connect well with. Another organisation that I find helpful is Maggie's. They have a whole building where I am, and offer everything from one-on-one walk-in support to financial advice and practical help in getting any benefits and grants. 

Greycats, thank you for the advice and I can definitely see how it would be useful to deal with the practicalities. Any advice or help would be really useful at this stage. 
xx