How can this be?

Thank you for asking all those questions. I'm sure others will provide more insight. In the meantime, I wanted to ask what the radiology said. How did the radiologist respond to the 1cm vs 6.5cm issue? Could another radiologist look at the images and still say they can only see 1cm?

I did have a double mastectomy, which I recovered from fairly easily. Same day surgery and came home and made dinner.
One issue that does not seem to get much attention is the potential for lymph vascular invasion , which you don’t know about until the pathology is done. My surgery had clear margins and no lymph nodes effected, but I did have some small amount of lympho vascular invasion and was told that it was a positive thing that all the tissue was removed. Very surprising that your tests were so far off. Lots to consider, good luck with decisions.

It was suggested by 3 surgeons I take the small step route with a lumpectomy to treat my stage 1 IDC. I chose double mastectomy regardless of their suggestions. Reasoning, I am as young and healthy and fit as I will ever be…now is the time to face the Cancer beast. Take all measures I can now when I am my strongest (mentally and physically). I did not want to think about more mammos and more lumpectomies. I also had dense breast tissue and mammo did not find my tumor, I found it. So I got rid of all that dense breast tissue and started anew! I just had my new implants placed Friday…on the road to recovery with new breasts and very little anxiety about what is going on in that area! 😉

Wow! We all hope we can rely on the experts. At the very least you should be able to understand a comprehensive list of what your options are. Have you considered a second opinion where you might be able to get a clearer understanding of options.

@whyme2023 was any of the pathology specimen invasive cancer or was it all DCIS? Are you having an Oncotype DCIS done?

The doctor and tumor board would seem to be concerned that your breast density tends to hide cancer on the various imaging, since so much of yours did not show up on mammogram or MRI. Since mammo and MRI are the methods for following up on your DCIS over time, I can see that it might make them nervous. And it might make you nervous over time.

"Treatable" still includes mastectomy. But docs initially thought it was 1cm and 6.5cm is a big change in diagnosis. It has gone from T1 to T3 in staging.
https://www.medicalnewstoday.com/articles/325669#tumor-sizes
You might feel better getting a second opinion (I got 4 opinions despite a tumor board recommendation). Keep going until you feel sure. But the recommendation for mastectomy would seem to make sense and a tumor board includes the opinions of several experts. Is your oncologist willing to discuss lumpectomy with radiation instead?

Thanks for the suggestion - I will ask this question.

I am going to start the process to obtain a second opinion. Thanks for the suggestion.

❤️👍🏻❤️

At this point, there has been no mention of the change in staging - I had two “spots” removed - initially it was thought to to be one measuring .5 - 1.0cm - the two spots were removed and the increase in size is due to the FULL amount that was removed (6.5cm) the two spots plus the distance between them - one measured 3.5cm and the other 2.2cm
The original plan was lumpectomy, radiation and then hormone blocker or endocrine therapy based on if I’m in menopause or not. I meet with the oncologist on 6/28 and will ask if the approach has changed based on the latest finding. Thanks for your feedback and suggestion.

I wonder if it is all DCIS and if they are doing an Oncotype Dx. Since chemo is not at issue, maybe not. It is a tough decision but if the tumor board thinks a mastectomy is needed, it seems like something to consider. I am older and divorced, and didn't have any concerns about mastectomies but understand how others might feel. I also wanted to avoid radiation. Good luck next week!