Test day

Now that the chemo is over the doctors have to figure out several things: did it work, how well it worked and when the operation should be scheduled.

As I see it from the inside, at this point, there are very few precise diagnostical tests available to actually pinpoint the cancer cells. Most of it is a bit of approximation and protocol: this larger, darker mess might be cancer, so let do these MRI, CT scans, or ultrasound to narrow the guessing just a bit..., but the only way to be sure seems to actually remove the cells via biopsy or actual operation and grow them.

So, in this imperfect world, I spent the entire day today, Thursday, being prodded, tested, and imaged to such an extent that could barely talk by the time it was over. From 8 am in the morning till 4:30 in the afternoon, Dana Farber was my "experimental rabbit" trial.

I had:

• numerous vials of blood drawn in preparation for the operation
• Keytruda treatment (I still have at least 4 more to go, every three weeks, I believe)
• an MRI
• a mammogram
• an ultrasound

Scheduling tests

It seems that according to the protocol there is a litany of standard tests that are done prior to finalizing the specific treatment from MRI, to bone scan to CT scan.

It turns out, I have to be the one calling to set up MRI and CT (originally I thought that the nurse would be scheduling them up, same as blood work or genetic test), but it wasn't explained up front. So I called back the hospital on Tuesday to figure out if there is anything else required from me and was asked, by the way, have you scheduled your scans?

An hour on the phone, if not more and I was still unable to schedule anything. Had to drop the call as Max was calling from school and then decided in frustration to think about it tomorrow.

That turned out a good thing. An hour later, probably because I dropped the call, a nurse called and finally got an MRI scheduled for Saturday via emergency entrance.

Now that I am on the inside of the system with the cancer diagnosis it is strange to see how the hospitals create these additional rules and requirements. The few, I think, unnecessary appointments that take up lot of wait time --- required meeting another nurse in order to just schedule a biopsy, or for genetics 101 long chromosome explanations instead of quick blood test; but no roadmap or guidelines regarding numerous scans that are important and not easily arranged, most require different infusions (iodine, radioactive solutions, etc) and have to be scheduled and managed by YOU...

Testing checklist

I now have an official diagnosis -- triple negative breast cancer that spreads faster than the other kinds. And Monday December 5 the flurry of activity finally picked up -- there are numerous tests that needed to be performed to figure out treatment options: 

genetic testing, 

MRI, 

CT scan, 

bone scan, 

numerous labs,

and even a port to implant under the skin

Finally, a bit more than a month since discovery, the rush is finally on.

Cancer Call 12/2

On Friday, 12/2, I got a 5-minute phone call from the nurse at 4:30 who hurriedly explained that based on the biopsy I have stage 3, fast growing breast cancer with metastases in lymph nodes. This breast cancer is "triple negative" and can't be easily treated with hormonal therapy (whatever that means). 

The next steps would be to do an MRI and a CT scan to see if the metastases have spread to any other part of the body. But, alas, it is Friday evening, so she plans to work with scheduling all of these tests sometime next week. 

"Have a great weekend," to be brief and to the point. 

Oh joy, what a delightful surprise to receive a cancer diagnosis at the end of Friday! It's the perfect way to end a long week, isn't it? You can just sleep it off over the weekend and wake up fresh as a daisy on Monday, ready to tackle the next step in your journey. Nothing like a little cancer to add some excitement to your life, am I right?

Good thing that I have a stable psyche and to some degree I was prepared, because of all of my self-diagnostics with Doctor Google. 

And I am off to Doctor Google to figure out what is the "triple negative cancer". This is a less common, fast-growing type of cancer, with a limited number of treatment options that occurs in 12%-15% of the population, with high likelihood of reoccurring... 

Now I will wait for the official explanation with the oncology team in a week, shouldn't just trust some Google search.