Well, I’m an “expert” now so I’m going to make some lists of random things that have or could have helped me through cancer and beyond. Maybe I’m not actually an expert but I know more than I wish I did about it. Today I’ll write up some things I verbally advise people about for early days in the diagnosis process, and then sometime soon I’ll put in one about surgery tips and how to support people with cancer. These tips are from my own experience and remember I am very, very unique (just like you!) so just consider these guidelines.
The secret reason for this post is that people give me inside info (yes, gossip) about some of the doctors in Tallahassee, and one in particular has done something so awful his patient is unlikely to recover, even though his cancer was initially curable. But the other day I ran into someone who sees him and I found it really difficult to hold my tongue. I did, primarily because she’s almost done with treatment so it would have just been gossip. But it got me thinking that maybe I could help people be aware of ways to prevent awful situations like that.
Cancer and health problems are scary, so I hate the idea of adding fuel to anyone’s fears. But I know of lots of horror stories, and my own could have been one. Very narrowly missed being one. So for the few people whose fears become reality here are a few tips starting with diagnosis:
1. Do your monthly self-exam ALL the time. By the time you can feel a lump (which is called being “palpable”), it’s well-developed. If any women in your family have had breast cancer, you could be eligible to get early mammograms. My doctors recommend having my girls get screened 10 years before my diagnosis. That’s when they’re 22 years old. I am BRCA1 positive and thus can get them tested via blood test for that when they are 18. If you can’t demonstrate a genetic or other cause for early mammograms, your doctor will recommend them starting at either age 40 or 50, there is some debate on this. Remember that mammograms are not enough–I know someone who had a clear one last year and this year was diagnosed at Stage 4.
2. If you have a lump of any sort, don’t panic! Pray and repeat important Bible verses, like Ps 56:3, “When I am afraid I will trust in you.” Don’t let your mind wander or worry. Just call your doctor immediately (general practitioner or gynocologist will be fine) and get in right away. If he won’t find a way for someone to see you within a business day he’s not a good doctor. You might think I’m kidding. I’m not. (There might be an exception if you freak out about everything, because then they might not take you seriously. Not sure how to fix that, but try!)
3. Most lumps are nothing. Almost all of them, actually. The younger you are and the less family links to cancer make it more and more unlikely to be cancerous. Still, there are tons of stories about misdiagnosis, etc. My general practitioner sent me for an ultrasound and scheduled a mammogram, but the ultrasound technician misdiagnosed me then canceled my mammogram. So, no matter what they say it is (a cyst, galactocele, fibroid, adenoma, etc.), I would say pray about it (of course), but at least consider demanding a biopsy. The biopsy is a tangible way to determine what a lump is, whereas the others require more human interpretation and thus mistakes.
4. So, you still don’t panic, whether your tests come back as clear, abnormal, or cancerous. Just keep praying. There are a few types of biopsy (needles are not intrusive, surgery is). I had a fine needle one and core needle one. Neither hurts, it’s just a mental issue. Just feel like a shot. My fine needle one came back as abnormal, which is again, very frequently NOT cancer. I saw Dr. Crooms (my general surgeon) after that, and he could have chosen to do a surgical removal (lumpectomy probably), but decided on a core needle biopsy first. That is a really, really big deal. If I had gone to a bad general surgeon, he might have skipped the second needle biopsy and done a surgical one instead. It happens all the time. That mistake can kill you! If you have a lot of cancer you often need chemo BEFORE surgery. If you have surgery first it slows you down because you have to recover before treatment. Sometimes they cut you open and can’t even get all the cancer, so you have tons of extra stress and trauma.
The point? Always, always, always get personal recommendations for your surgeon and doctors, AND a second opinion or hard evidence before surgery. In my case Dr. Crooms chose to get the evidence* before recommending surgery. I’ll talk about that below, but it definitively showed it was cancer so he ordered a PET/CT scan and brain MRI to see if it had spread BEFORE surgery. Good move!!!!! Great move!!! I didn’t get a second surgical opinion, but the oncologists I saw all agreed with that decision.
*Abnormal biopsy results are not always cancerous, especially as I was also breast feeding which can confuse cells. That first biopsy could have come back as conclusively cancerous then there wouldn’t have been a need for another biopsy. So the second biopsy was basically for more info. The frozen section is a way for doctors to get a quick look at the cells that were removed. They are only slightly less accurate than a permanent section and take much less time. I believe a permanent section is always done, but ask your practitioner (and insist on one) first. My frozen section came back as an adenoma even though it was cancer. So a few days after receiving “good” news, we got the call that it was actually bad.
5. Always get multiple opinions BEFORE surgery or treatment starts. If it looks bad you will be anxious to hurry up but if you start the treatment first it can be much worse to change it later. For example, many (or all?) types of chemo can only be given once in a lifetime because your body builds up immunity to it. So if you go for a few treatments then ask another doctor what he thinks, you either can’t take his advice or have to waste your chance to ever get the original treatment again down the road. And who wants to doubt that choice forever?
One trick about getting the multiple opinions is to schedule them at the same time. You don’t need to meet with one doctor then make an appointment with the next. Just call them both and schedule for ASAP. It’s your life.
When possible, try not to tell your other doctors what the original said. That way they won’t accidentally be biased by evaluating the original advice. You want independent information first, then you can ask each what they think of the other.
Take notes on EVERYTHING. Remember to get lots of doctor recommendations, but go with the one you fit with best. Some people prefer a good bedside manner over certain medical training, especially if their cancer has a relatively standard treatment.
6. If you end up with cancer you’ll probably have a medical team treating you. You still don’t panic though because God is in control. He IS!!!!! At many hospitals the cancer doctors work together so you don’t have to figure it all out. Mine don’t exactly work together so I sort of make sure they know what each other is up to as needed. My medical oncologist is (or should be) the boss though. This depends on the whole issue, but he should be very aware of surgery and radiation stuff/scheduling before you do any of it. I know of a case where a patient started radiation without his oncologist being aware, and they were supposed to be done in conjunction. That will keep your treatment from working. Boo!!!!!!!!!!
That’s all I can think of right now. If anyone has things to add, put them in the comments section. There are more details and verses about my own experiences throughout this blog, but I couldn’t explain much without including some personal details.