Tuesday, May 5, 2015

What it's like to wonder whether you have cancer...

In a nutshell, it's a mixture of feeling sick to your stomach, mixed with moments of shortness of breath, following by long deep breaths. I think that's the basic feeling.

During the first week I did a lot of research. Maybe too much, maybe not. I learned about the stages of Breast Cancer (I'd be somewhere between IA and IIA depending on lymph nodes) and looked up False Positive rates on Breast MRI ("high" but less high for someone like me who repeats it every year). I read a really terrible study that said survival rates were lower for young women than older women, ostensibly because there are different mechanisms behind cancers that appear that early and most research has been targeted toward older women. Luckily I got a really great blog comment from a survivor at that point and I stopped researching (for the most part).

My anxiety seems to peak as I get closer to appointment times. During the rest of the week, I go between forgetting about it and vague worry.

The hardest part is waiting.

One weird thing is that I haven't really told anyone. Just my husband, mom, sister, and my best friend (whom I almost didn't tell). With IVF and all that ensued, I shared left and right. This feels different. Also, I don't really know anything yet.

Here's my timeline so far:

  • April 24 - Breast MRI (at Hospital B)
    • This freaking appointment was at 6:15am! And DH was out of town so the nanny had to come super early. Then they weren't ready for me and I was sitting and fuming. I had also warned them that I can be a hard stick so I was extremely upset to learn the tech would be starting my IV and I even asked him if he was good and said if he wasn't, I wanted to reschedule (it's unlike me to speak up that much). He did a really good job of joking with me and relieving the tension. AND he got my vein quickly and easily. Bonus points. I chose to listen to "Pitch Perfect" on Pandora during the breaks in the MRI where you can actually hear the music. I call the rest a mix between being inside of a washing machine and an electric dance party. It's really weird and loud, but the only part that really bothers me is laying on my face for that long. Sometimes it begins to really hurt, but you can't move. It's also really cold in there. (Wear yoga pants if you ever need to have one because you can keep on any bottoms that don't have metal. I forgot at this appointment.)
    • Later that day I got a follow-up call from my Breast Specialist saying they found a "suspicious" lesion in my left breast at 6 o'clock. She explained the rest of the process and I scheduled follow-up appointments that day.
  • April 30 - Diagnostic Mammogram and Ultrasound
    • Because my lesion was detected on a Breast MRI, the most sensitive type of imaging, I definitely needed a biopsy. Ultrasound is the simplest method of biopsy, they see it, they biopsy it right there. Mammogram is next easiest. They image it, they mark the coordinates, you go (later) to get a biopsy of those coordinates.
But of course neither of these methods worked for me. There is a bright side. The lesion is very small. That is better no matter what. And I can still slightly hope that it just doesn't show up when I go back to MRI. But no matter what, I had the major anxiety leading up to this appointment and then no answers and more waiting.
  • May 1 - Call back from my Breast Specialist
    • She ordered my MRI Guided Biopsy (requires referral to different hospital).
    • I call the Referral Coordinator at my hospital who says to call the other hospital on Monday and to call her back if they don't have the referral by Tuesday.
  • May 3 - Schedule MRI with Hospital B
    • I was very pleasantly surprised to get a call from Hospital B on a Sunday to schedule my biopsy.
  • May 8 - Guided MRI Biopsy
This step hasn't happened yet, but I know somewhat what to expect. IV for contrast like a normal Breast MRI. I'll be laying still for 30-40 minutes both in and out of the tube. I still can't picture how they actually do the biopsy. Is someone on their hands and knees below me? Can they raise the table up high like a car shop? I guess they insert a small stainless steel marker at the site of the lesion to mark it for potential extraction later. That seems pretty weird to me too.

I imagine I'll have results early the next week. That's when the conversations will get much more interesting...


  1. I have been thinking about you nonstop since this news. Several months ago I started a new habit of dedicating each of my yoga practices to someone who I feel could use positive energy. You were my person last Wednesday. Sending love, strength and patience to you. xoxo

  2. Yes sometimes they move the tables up or down to get the access they need. The chip they will leave there is good though - means they can confirm on later images where they've already been. And one piece of advice about reading studies (not that you asked) but just remember: there are good studies with solid design and analysis, and then there are crappy ones based on poor design. Numbers can be tweaked and words changed to imply different things. Try not to get too hung on on random studies. There is a lot of research going on these days in all ages of women, including lots on those with the BRCA mutations. Will be thinking of you!

  3. Hi! I'm glad you posted. Have been wondering if you'd found things out yet. And that feeling really is terrible. I know what it's like and I wouldn't wish it on anyone. But, hold onto the fact that because whatever it is is small that you will be ok. It's really good they found it, because the earlier the better. I try to look at the scary follow-up exams as good things. If there is something there, I want them to find it because I swear that breast cancer can be not-a-big-deal when you catch it early. So many people have a head-in-the-sand attitude, like getting checked for it can spontaneously make it appear. It's really, really great that you have been proactive and kept an eye on it.

    And while it's true that younger woman tend to not have as good results as older ones, it's because younger people tend to have more aggressive cancers. But we've already determined that yours is either a) not cancer b) more aggressive but caught really really early or c) non-aggressive and small. All of those outcomes are great for you. Mine was weird because I was 37 when they found it and they called it "old lady cancer" - it was less usual for someone my age to have the type of cancer you see in older ladies. It's a mystery as to why it showed up at all. I have zero family history (and I was tested and am negative for the BRCA mutations). So sometimes it just happens. (Which I find disconcerting, because how am I supposed to know if I "did" anything to cause it?) I have a friend who was in her early 40s who had breast cancer after I did - hers was a much much larger tumor than either of ours and much more aggressive - and it still had not spread to her lymph nodes. She ended up doing chemo as an "in case" - but it was not something she necessarily needed to do. So again, I think you are in good shape. This sucks, it does - but I know you will be just fine and there is a good to very chance chemo won't even be on the table. And again, remember, it is almost certain to be your choice whether to do it or not.

    Re: MRIs, they did do one on my (with IV/dye) before my surgery to make sure there wasn't anything else there. They did tell me that MRIs have a high false positive rate and not to freak out. Sure enough, they had two other spots they wanted to look at via ultrasound. (And I freaked out.) One was a lymph node and the other was nothing. Something to keep in mind. And MRIs are so uncomfortable - really not fun. Sorry you have to deal with them so much.

    My comment got too long, to be continued... ;-)

  4. Part 2:

    While I didn't have an MRI guided biopsy, I did have a mammogram guided one, which had me lying on a table. It really truly wasn't bad.

    Here's what happened for me. They did mammograms first. (Presumably, they'll do an MRI on you first.) They used those images to guide the machine to do the biopsy.

    They had me lie on a table. It was pretty well padded so I'd be comfortable and be able to be still. Your breast hangs through a hole in the table. It's weird, I know. The table does get raised and my doctor was indeed under it. He shot my breast full of lidocane (and that really doesn't hurt). Lidocane is great stuff. And then basically, I held still while he made a tiny incision, and then the machine inserted a needle, took a sample, and then it's pretty standard for biopsies to put a little steel marker in where they did the biopsy. You won't feel it later, and it won't bother you. But it marks the spot for them on the imagery. So say this ends up being totally negative and not cancer. Next year when you have another MRI or mammogram, they'll see the metal marker and they'll know they already looked at that spot and know what it is. They did this on both biopsies I had - the non-laying down ultrasound one (cancer) and one I had on some benign microcalcifications. Since that was benign, I still have the little metal piece on me. It is very tiny, no big deal.

    Then after that, and they are sure they biopsied everything they need to, they'll probably just put a steri-strip and some gauze or bandaids over the little hole. It should not be big enough to need stitches. Neither of mine were. Just a little puncture. It may bleed a little later. My cancer/ultrasound one didn't, my other one did. It wasn't painful at all, just a little weird. And stressful, of course.

    I hope this was helpful. Best wishes for everything. Will be hoping for the best for you. Remember, you're going to be just fine. Hang in there.

    1. You write the best comments. Seriously. :)

    2. Aw, thank you. That made me tear up a little. It sucks so much to go through something like this and I feel like if I can do anything at all to help other people dealing with it, then that gives the experience some positive meaning. I'm sure you understand since you have this blog to help people dealing with IVF!

      Some other things I did during this phase that helped me were doing some visualizations. Like imagining a protective border around the tumor (or whatever it is) that kept anything that might be bad contained and kept my lymph nodes safe. And I also imagined thousands of tiny little pac-men going through the tissue in my breast and gobbling up any thing that looked like a damaged cell and replacing it with a healthy one. I know that sounds weird BUT it kept my mind engaged in positive and healing and protective ways, which I figured was better for me than worrying. And in a situation where you feel like you have no control, making my mind think maybe it had some was helpful. Like you I was often able to (mostly) put things out of my mind until the countdown to the dreaded appointment time. Maybe it will help take the edge off or get your mind out of the worry spin cycle if it gets stuck there. I know mine went there a lot. Good luck! Fingers and toes crossed for you. :))

  5. Thinking about you and hoping for good results. I don't think I've commented before, but I've read your blog for several years. I know it's scary; do whatever you need to to get through. (I had bilateral mastectomies last year.)

  6. I have been thinking of you. We are currently also in the waiting phase to see what fight my dad will have. Waiting in the worst.

  7. There are no good words, but I'm abiding with you and virtually holding your hand on Friday. I hope the results come back soon after, and that things turn out okay.

  8. Sending many good thoughts your way.

  9. been thinking of you this week. all week. hoping tomorrow goes smoothly and that by next tuesday-ish, you can get good and relieving news.