Diagnosis Frustration

Sd2906

Hi everyone,

First off, I am new to the community but very impressed and grateful with all the responses and information the site offers. You women are the backbone of this site and I am so thankful this exists.

Now onto my frustration.

My wife was diagnosed in August with a 2.6cm mass, IDC, grade 3, ER 50%+, PR -, HER2-neg, BRCA neg, no lymph nodes or LVI. We had a mastectomy done and we are waiting on the pathology results. I guess my frustration here is I feel we don't have much color today than we did a month ago. The MRI remeasured it at 3.1cm, but candidly, it's unclear the MRI is accurate. My wife was breastfeeding and has dense breasts and honestly, MRIs are just not great tools for her breasts.

I wish I just had more color and I realize it's coming soon. However, I feel the only things we can trust right now are the three biopsies that were done (breast, node, sentinel node). It seems staging and treatment can't really come until we have the answers from the lab.

Well, thanks for reading. There's no question here. I am just venting that we have don't have more 7 weeks into this nightmare. I guess they are coming.

MTwoman

I am so sorry that you and your wife and going through this difficult journey! I guess I'm a bit confused about the "color" statements? ("I guess my frustration here is I feel we don't have much color today than we did a month ago") I'd certainly like to help, but am at a bit of a loss. Hoping answers are coming your way soon!

Sd2906

oh thank you for the response. I don't really have a question. It's just frustrating that staging and real answers come after the final pathology report. Right now, just living in the dark on some key questions is tough. I really want to understand how far it's spread and what the final size is. Right now, these are just estimates based on an MRI and imprecise measurements.

MTwoman

yes, that is frustrating to everyone! Do you have an estimate of when your wife's final pathology results will be in?

Sd2906

I believe it should be this week. Her surgery was last Monday. She was treated at MSK in NYC so I hope they move fast. They've been fast on other reports.

The problem is an MRI for a women with BC and one that breast feeds can look very similar. The biopsy is really the only data that I think you can trust.

Thank you for the response.

MTwoman

pathology always has the last say over imaging. Hoping you get good news soon!

Sd2906

thanks again

Batw128428

The most hectic, debilitating, emotional part of my experience was before I started treatment. I had a 4.5 cm BRCA 1- Triple Negative tumor. With all the testing and research and fear, not to mention I'd just had a baby via c section I was all over the place. Now that I've started treatment I feel tremendously better. I'm not even 100% sure on my staging. Please know it gets better. I was crying on the floor outside or in the shower at one point. It will get better. The tests do suck with milk, mine did too. Just focus on creating a vitamin regimen that includes AHCC. Because despite my tumors size I had no metastasis not even to lymph nodes. It gets better

Wildplaces

Hi Sd,

It's a journey no person wants to take - and I can feel your frustration through the thread.

My understanding is that ultrasound may underestimate a lesion and MRI may overestimate it - it's not so much the radiology guys get it wrong as it is the imaging technique has boundaries. So if the ultrasound says 2.6 and MRI 3.1 I think you are getting good reports on both - and unless there is low grade DCIS not accounted for, you'll see at the final report - that is all it is.

I am assuming you have the numbers on the histology from a biopsy - a word of warning - there is sometimes a bit of shuffling between a biopsy and final histology ( I was grade 1 on biopsy and grade 2 on final path ) these tumours are heterogenous - they vary a bit within the tumour, the more you see of it the more precise you are,so hold tight until you have all the data.

Wishing you wife and your family all the best with this!!

Sd2906

wildplaces and batw, thank you both for your detailed responses. They were super helpful. I guess we will see and I'll keep you al updated

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