I’m so worried.

Okay. Some of this seems iffy to me, especially staging from a mammogram and ultrasound, but I'll let others with far more experience respond to that.

What I do want to comment on is this: You are right to wonder about the accuracy of the doctor's comments so far. Doens't mean they're not right, just that it's too early to be sure. When I was at your stage of the nightmare (and it's the worst, you don't know much yet, you've not planned next steps yet) all the sonogram told the doctor was that it "looked concerning" and "the nodes look clear." That's it. They estimated the size, but that's all it was, an estimation. When I had the biopsy, the doctor told me she thought it was cancer for sure, but again, not confirmed till the biopsy results are back. You won't know all the details for sure until the thing is out after surgery. Even the biopsy, while mostly accurate, details may change after surgery. Mine was downgraded from a Grade 2 to a 1 for example. It was also slightly smaller than it appeared in imaging. After surgery is also when you get the actual details of what is going on and are staged. That doesn't mean you wait for surgery to have your plan in place. They recommended a plan for me based on imaging and biopsy results, and it was what we ended up doing, with surgery as the first step. Each case is different, though often similar depending on the details of your cancer diagnosis, if it's confirmed.

Also, I particularly want you to know that after I knew it was cancer and before the surgery I had pains all over the place. I too thought "OMG it's spreading." I have a friend who is an oncologist and tells me many of her patients experience this. Sure enough, once it was out and I had answers, the pains were gone.

It's sooooooooooooooo hard, but try not to worry too much right now until you have more concrete answers. At least do not drive yourself crazy with so little information to go on. The anxiety is awful, I get it, I do.

Hi Boobicles,

We just wanted to drop by and welcome you to our amazing Community. As you can already see, this space is the best place to find answers, advice, and most importantly, support -- we're all here for you!

We're sending positive thoughts your way that you get some concrete answers soon and get a plan in place. You're sure to start feeling a little more at ease once you know more and start treatment. We know the waiting is the absolute worst -- just know we're here waiting with you. Please keep us posted with how things go on Thursday!

--The Mods

odd he told you stage 2 already - I’d figure the oncologist would go over that. I didn’t get my staging till after my pet scan once I had a positive node come back. Hard to know a stage without some sort of body imaging (as far as I know - I was stage 4 from the get go )

I do understand very well the anxiety that comes with a diagnosis and thinking it’s spreading. Been there done that. I’m NED and every little weird pain or illness gives me anxiety. My radiation oncologist said “remember , you’re gonna get the same things you did before cancer “

Fingers crossed for tig

are you NED you said?

a radiologist can tell you the stage by looking at your mamo and ultrasound? I’m confused ? I thought they had to do a pet scan for that and all that. They said I had IBC yesterday and without a biopsy. They just did the biopsy today.

A Radiologist cannot diagnose based on imaging. He/she might feel that that the imaging indicates the presence of cancer, but there is always a chance that the assessment is wrong. A diagnosis of cancer can only be made from a biopsy, when the suspicious breast has been examined under a microscope and the presence of cancer cells has been confirmed.

Staging most certainly cannot be determined from imaging. Imaging might suggest that the tumor is a certain size, but the size could easily be larger or smaller - that happens a lot. And imaging might indicate positive nodes or negative nodes, but here again could easily be wrong. A Radiologist should never offer an opinion on Staging based on imaging because they really have no idea at all what the final pathology will find or not find.

BAP your cancer was matastized but you are now NED

Boobicles,

There is Clinical Staging and Pathological Staging. Clinical staging is done based on pathology results and imaging. Pathological staging is based on the surgical pathology.

Clinical staging i relevant in situations where, based on the Clinical Stage, it's determined that chemo will be given prior to surgery. In those cases, the Pathological Stage might be difficult to assess because the chemo has hopefully reduced the size of the tumor.

In other situations, when surgery is done prior to any other treatment, the Pathological Stage is most accurate and most relevant and overrides the Clinical stage.

The Clinical Stage is in effect an estimate based on limited information; the Pathological Stage is the final determination based on all the information. From my own experience and from what I've seen on this board, most often surgeons don't get into staging, clinical or otherwise, and leave that to the Medical Oncologist.

Thinking of you today Boobicles.....

Hi Boobicles,

I'm so sorry you're going through this. As anyone can tell you, not knowing is the worst. You're sort of floating out there with nothing to anchor you. While you wait, though, I highly recommend reading through the main site of https://www.breastcancer.org/ It's got tons and tons of basic information about diagnosis, staging, treatment, and all that stuff. I read practically the whole site while I waited between getting the initial diagnosis of IDC and seeing the breast surgeon when I got the full pathology report after biopsy. By then I had a lot of questions I knew to ask the surgeon and felt quite prepared to evaluate what she told me. That was very comforting to me. I'm hopeful that it can be for you.

Hoping for the best news for you!

Anne

I'm sorry Boobicles, this time is the worst. I agree with Piper, I spent this time reading anything I could get my hands on and getting educated. In addition to this site, I recommend The Breast Book by Dr. Susan Love and Just Get Me Through This by Deborah Cohen. Also excellent is Anti-Cancer by Dr Servan-Schreiber. The smarter you get, the more in control you feel

Hi,

So sorry you had to join us but glad you found us. You will get through this once all is in place and come out the other side. Take care of yourself during this time too...talk, don't talk, cry, laugh, whatever helps you through. It sucks for sure..but you do eventually think of more of the day to day things than what you went through. A little at a time. Hugs..

Boobicles, Sassa is right that Herceptin and Perjeta are miracle drugs for those of us with HER2+ tumors. Some of the women who were literally near death when they were given the trial drug Herceptin (Trastuzumab) are still alive, and this was over 25 years ago. My MO treats one of the women in the Phase II trial who was considered to be hours away from death and here she is alive after all these years. Now, that's a miracle drug. I tell you all this because you have reason to have good hope for yourself AND for those four children you love! Boobicles, miracle drugs or not, I wish you had never found yourself here.

Sassa, thank you for stopping by to remind the rest of us who aren't that much farther ahead than Boobicles that we all took that same miracle drug (finished my last Herceptin Wednesday). Thirteen years and NED is wonderful!

Sassa thank you for talking this newbie off a ledge. 💖