(Get yourself a little notebook immediately and start taking notes. Write down questions that hit you in the middle of the night. Write down details you come across in your own research that you'd like to bring up with your doctor. Write down what your doctor tells you. You may understand everything you read and all that's said in a meeting, but when you have two or three meetings in a day, plus errands, meals, research, and helping the kids with their school work, the information bleeds together and you'll find yourself at dinner assigning surgical plans to the radiologist and wondering why you forgot to ask about the port placement while you were at the phlebotomist. Not helpful. Even the sharpest minds need notes. This is not a sign of weakness. It's a signal of sanity. Spool up now.)
Also, get a couple of books you can read while you wait in lobbies and visiting rooms. Take a water bottle and drink, drink, drink. (Unless a test requires you not to, obviously.)
My regular doc (sports med guy - absolutely awesome, and generally unflappable) jumped through flaming hoops to not use the word cancer. I'm sure he was concerned I'd whip out a bucket of chicken, start crying and eating, and he'd never get me out of that room. (I wouldn't have, but he may have previous experiences that made him leery.) So he sent me to a surgeon to find out for sure before breaking out the ugly words.
The surgeon wanted images. Ultrasound of the cervical (neck) lymph nodes, and hey, while you're there, let's do the axillary nodes, too. And a mammogram. And a full blood work up. You're not pregnant, are you? OK, good.
Then biopsies. My surgeon opted not to do a punch biopsy because he said the results that come back from the lab are invariably, "Yes, it's lymphatic tissue. We can't tell anything more and need a larger sample." So we went straight for an excisional biopsy (where they remove a piece of tissue - in my case, a cluster of lymph nodes) so they can slice and stain and poke and prod to their heart's content without having to knock me out or poke me more than absolutely necessary. If they're doing it on the cervical nodes, expect to be put under for that.
And then, the scans start. PET scan. CT scan. MRI. These scans can show a visual representation of where the cancer is in your body. It gives you a better idea of how widespread it is, and what you're up against. Aside from the Redi-Cat liquid prep you'll need to drink (it tastes vaguely like disdain, and metallic faux chocolate), these are minimally invasive and mostly boring. The IV MRI contrast will make you feel like you may have just urinated on the table - you didn't (in case they don't warn you about that - the tech I had said that even though he warns people, most of them check reflexively anyway.) If you're claustrophobic, ask about OpenMRI.
If you have an aversion to needles, consider taking up meditation. I'm sorry I don't have better advice on that front. (My inner child sits there with me, remembering the days when it took the doctor, two nurses, the receptionist, and my own mother to hold me down just to give me a shot. She thinks I've become a complacent wimp. But the nurses I've had during this procedure, had they known of my violent youthful tendencies, would have been quite proud of me. I bought myself a milkshake for being so brave. There are perks, even if you have to make them yourself.)
If you're very lucky (OK, not really, but if you need it and you can have it, then that is sort of lucky), you'll also have a bone marrow biopsy and a spinal tap, to check for involvement in your bone marrow and Central Nervous System. I'm fairly stout-hearted, for the most part, but reading about the bone marrow biopsy made me a bit queasy. When my oncologist offered to put me out for that one, I jumped on it and considered getting a kitten to name in her honor (we're well past child-bearing, or I'd have offered to name the next one after her). Some people go through it without general anesthesia and they are fine. To be honest, the after effects were significantly less traumatic than I'd expected, and it probably would have been fine to do it awake, but I'd hit my wall at this point and needed to *not* have to face something with a stiff upper lip for a moment. So, that was nice. The spinal tap is done while you're awake. I had a magnificent doctor do that. We had a good chat. He let me watch him work. He's most definitely in my top ten favorite doctors, and the spinal tap is probably in the top five Lease Offensive Procedures I've experienced. Your experience may vary, but if you can go into these tests with an attitude of cooperation and a sense that you are on a mission, this helps. These tests, if they're ordered, are helpful tools to give you a clearer view of the path ahead.
There may be other tests, but these are all I had done.
The blood draws are frequent and copious. God bless the inventor of the Vacutainer blood collection system. One stick, all the vials you need can be filled, and you're done. Granted, by the time you're done with this whole process, that's still a lot of sticks, but it's significantly fewer than it could have been. There will forever be a place in your heart for those who can do a painless blood draw.
All of this happens very quickly. It can feel overwhelming. It's OK to take a step back from all your researching and spooling up from time to time. The information will be there after a nap, or a coffee break with a friend. Just be sure to come back.
Be encouraged,
~Dy
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