Recently diagnosed IDC, possible bone mets on MRI :(

shimmy

Recently diagnosed IDC, possible bone mets on MRI

shimmy

My first post, though I've been lurking since my diagnosis. I’m 45, 3 kids 10, 19 and 21, diagnosed (needle biopsy) at the end of January with IDC of the right breast. I had a follow up Breast MRI as my original lump was not picked up on mammogram. The MRI was done at an outside facility. (I have Kaiser insurance and they do nearly everything in their own facilities)

My BS called me with the results just a few days before my scheduled lumpectomy. He said that my left breast was clear, but the right breast showed an additional 2 areas of concern. One was a tiny 3mm and near the original lump the other 8mm. He said they both had smooth edges and were probably nothing. We opted to go forward with the lumpectomy as planned and follow up with chemo/rads and test again afterward.

After the lumpectomy, I met with an oncologist to decide next steps. We considered my case borderline for chemo (and I wasn’t too keen on getting chemo) with only one .2mm micromet in the sentinel node, and my tumor only 1.5cm, and opted for the oncotype test. It came back high, I came to terms with Chemo, and was a few days away from meeting with the Onc again to finalize my regimen/trials/etc, when he called me out of the blue.

First thing he did was say that he had presented my case to the tumor board and they were questioning his decision to get the oncotype test done as they felt there should have been no question about chemo. Then he brought up the decision about not getting a biopsy on the larger of the questionable spots from the MRI— even though he said if I did, it would delay chemo. Then the kicker, he asks me “did anyone talk to you about the spot on your breast bone?”

Say what? No, nobody has mentioned it, let alone talked to me about it. From what I gather, there was some delay in the MRI images getting to my doctors and up until that point that had just been going by the original radiologists report. I had no idea that was the case. I had assumed my surgeon had actually seen the images himself, but apparently that wasn’t so. I can only guess that the original report didn’t mention it, so nobody else had said anything about it either.

He went on to say that there were also some suspicious results on my spine, but because it’s a breast MRI it’s not clear enough. So all of a sudden, chemo is on hold until I can get a bone scan and possible biopsy on the breastbone if positive. He says my treatment plan will change if I’m Stage IV— I about died when he said Stage IV. I’ve barely wrapped my head around having cancer at all. It was just a small lump with one tiny micromet. Everyone was saying how they caught it early and it's very treatable, and now two months later all of a sudden I may have bone mets and be Stage IV?

I don’t get my scan until next Wednesday, and I am struggling to stay positive. Oh and he just called again— while we’re at it, we need to schedule a C/T scan too because a bone scan isn’t good enough to guide the needle in a biopsy. It’s like he’s already sure it’s a met, but doesn’t want to say so.

Moiralf

Oh Shimmy,

Damn and double damn. 

This has been a lot for you to take on over a short time.

First, it is usual to do both a bone scan and a CT/PET scan. They sort of work together to make a clearer picture of what is happening.

Gutting for you that there was the oversight in the reading of the scans. This is hard enough to deal with at any time and to then have to listen to confusion from the med people is more than you need.

Stage 4 even being mentioned is enough to send the best of us in panic. I've been there since dx in 2007 and believe me at the time I was shattered. I was 44 and had no history of anything and a clear mammo the year before.

So, hold on until all the evidence is in and you have some straight answers from the med people.

Your onc may indeed think it is a met but then again he may be just being very cautious and not taking any chances on missing something.

To let you see how this can happen I will relate my experience.

Never mind the dx and mast, that is standard but no one thought I had mets. In fact they kept saying it was highly unlikely. My onc wanted to be sure so he ordered CT, came back suspicious for a met in a vertaba but not clear exactly. So MRI, could be something but not definite. Bone scan, hmm, spot on spine but not "hot". So that means it does not appear to be cancer. yay. Final test, lets do a biopsy to make definitely sure. Damn, stupid thing came back with cancer cells.

That did indeed change my treatment and yes I am stage 4 but over 5 years later I am here, living a very normal life and working and getting on with life. It can be done so try hard not to panic yet. 

Get those tests done so that you know what it is you are dealing with. There is very good treatment that can be very effective at dealing with cancer and it does not mean the end of things as you know it. 

Yes, life might be quite different than you thought it was going to be but it can be very good still.

At this time you still don't know and that is hell mentally and emotionally. Take deep breathes and try hard to remember than until you know the facts nothing has yet changed. One day at a time. It is doable and you will get though it.

Please let us know how things turn out and come here any time you need some support. Any time of the day or night someone is here to listen and respond.You are never alone.

Moira

shimmy

Thanks Moira, especially for sharing your own experience with mets early on.

I was in a good place mentally in dealing with everything, it wasn't great, but I felt like I knew where things were going, it was just a matter of getting through it. Then this unexpected turn of events really threw me for a loop.

After having my hopes dashed so many times in the last couple of months, it's hard to be hopeful right now. It was good to vent here though. I guess I just need to find some good distractions to get me through to Wednesday and then deal with what may come, when it comes.