Waiting and in the Driver's Seat

Momof6littles

LCIS was found in early March. MRI found another spot that is a lymph node in the same area as the biopsied lesion . I was told it looks normal. The radiologist was annoyed when I questioned the absolute truth of that statement. He acted like he is a pathologist. I was also told any surgical intervention with LCIS is not typical because it's not really cancer and does become invasive like DCIS.

So then I decided to get in drivers seat. I started doing lots of research, asking lots of questions. It turns out that they just haven't seen LCIS where I'm at in the local clinics. The pathology report doesn't say anything other than LCIS because that's all they have experience with. Sub classification is something they don't know about. The oncologist can't answer my questions and won't ask the pathologist any questions because he said it's not his job to tell him how to do his job. The surgeon was fighting me on any surgery. He was waiting to see my genetic test results. If they come back negative, he doesn't even want to do a lumpectomy to see if there is anything invasive left behind.

But I had a long talk with the surgeon, a discussion about LCIS as a precursor tumor, about dense breasts and imaging, family history, pathology. He finally agreed that, yes, a lumpectomy to excise the region of the tumor makes sense, so does the removal and look at pathology of the intramammary lymph node.

I also had a short and discouraging talk with the oncologist. But he agreed that a referral to university of Chicago for pathology and consult is not a bad idea. I finally got the docs to admit that they don't see LCIS or much lobular at all.

Still waiting for genetic testing results (hopefully in another week). My appointment at u of c is on the 25th of April. (And I had to intervene to get an appointment with an oncologist that is a breast specialist. They were going to send me to someone with a specially in prostate and pancreatic because "that's who they always use.")

So, much waiting ahead. But asking questions and doing my own research changed the course from watch and wait to a closer look to make sure we are not missing anything.

Don't be afraid to ask the difficult questions.

dtad

Agreed! W have to be our own advocates and make our own informed decisions!

Momof6littles

I don't know if it's just where I'm at, but it seems like I have to call to confirm that everything is being done correctly, every time...tests being read, referrals, getting the right appointments. It's exhausting, but if I didn't call, I'd be sitting here with incomplete reports, bills that insurance won't pay, and referrals to the wrong doctors.