Just when I thought I was inches away from the starting line of my treatment, I get another wave of information — including differing interpretations of the results from my latest biopsy — that will require some more patience and fact-finding.

As emotionally draining as this waiting game is, the second opinion appointment Sean and I had at Seattle Cancer Care Alliance today was an amazingly insightful experience. We met with three top notch breast cancer specialists (a surgeon, a medical oncologist and a radiation oncologist), who carefully analyzed every piece of available evidence about my cancer, then met with us individually to discuss it all in great detail.

A pathologist and radiologist also reviewed my case. The pathologist recommended that slides from my latest biopsy — one of a second mass in my left breast — be re-stained to determine if it’s Ductal Carcinoma In Situ (a smallish cancerous tumor in the milk duct near my larger invasive tumor) or Lobular Carcinoma In Situ (abnormal cells that aren’t cancer but are indicators of higher cancer risk).

Group Health thinks my second left-breast tumor is LCIS. Seattle Cancer Care Alliance isn’t so sure.

I got Group Health’s LCIS diagnosis as I was gearing up to head into my second opinion appointment. I won’t lie — it took the wind out of my sails. I cried. I thought it meant that no matter what I do to get rid of the cancer I have now, I’d face a significantly elevated risk of getting cancer again in the future. Turns out it’s not that simple. Really, all that LCIS means is that I had an elevated risk for cancer, which we knew already because I have cancer. (Get it?)

If that lesion is LCIS, my SCCA surgeon said I could get a lumpectomy and at the same time have the LCIS excised along with enough tissue around it to find out if there’s any actual cancer there. If so, I’d need a mastectomy after chemo. If not, a lumpectomy would do the trick, and I’d move on to chemo.

If the lesion is DCIS, SCCA recommends a mastectomy, because the area that would need to be removed is at the outer edge of what they consider doable for a lumpectomy. And there’d be a risk that itsy bitsy cancer cells that don’t show up in x-rays, ultrasounds or MRIs could be hiding elsewhere in that same milk duct. (Little fuckers.)

Good golly, cancer is complicated. I’ve only scratched the surface of the new and developing information that we’re weighing as we zero in on what will be the most effective treatment plan. Here’s a hodgepodge of other considerations, bulleted to reduce the risk of your eyes glazing over and/or criss-crossing:

• The second tumor in my right breast is benign — yay!

• There don’t appear to be any funky lymph nodes on my right side.

• My SCCA docs recommend surgery before chemo, since my cancer is not the type that tends to shrink very much (if at all) in response to chemo. Also, finding out as much as possible about the extent of my cancer (especially exactly how many lymph nodes are cancerous) would be helpful in determining which chemo recipe(s) would be most effective for me.

• My SCCA medical oncologist recommends a PET/CT scan to determine if the cancer that’s in at least one of my lymph nodes has spread to any other areas of my body.

• SCCA is also recommending I seek a more comprehensive panel of genetic tests to determine if my cancer might be caused by any other mutations (aside from the BRCA1 and BRCA2 mutations that I don’t have). Apparently, BRCA mutations make only about a quarter of hereditary cancers.

• The benefit to that additional genetic testing is that there are specific therapies that could target specific genetic mutations, if I have them. More avenues of attack would be a good thing, though I’d still hope that there is no hereditary component to my cancer; I don’t want anyone else in my family to face a higher risk of cancer just because of their DNA.

• If I get a lumpectomy, my treatment would wrap up with radiation. If I get a mastectomy, I may or may not need radiation, depending on whether they think any cancer is lingering on my chest wall.

Lots (and lots and lots) of things to consider in the coming days. It’s doubtful that Group Health and/or SCCA can answer all the open questions in time for me to go ahead with my surgery on July 21, as originally scheduled. But the goal is to figure out which surgery is right for me and get it done as soon as possible.

And to think that this morning, going into this process, I had declared myself 99% certain I’d do chemo first to try to shrink my tumors and to get the hardest part of my treatment over with right off the bat.

Cancer: one complicated shitbird.

Now, close your eyes and picture that tagline on a billboard with me giving it the middle finger.

#CaringBridge #cancer #SCCA #BRCA #LCIS #DCIS