Playing the Waiting Game Again...UGH!!!

lanagraves

I saw my RO again this morning. It was the first time since he terrified me last week. In retrospect, he was only being honest, and I appreciate that. I don't want him to sugar coat anything, but it doesn't keep it from being upsetting. Just for a little background (I probably should have just added this to the thread I created last week as an update...hmmm.oh well, I'm already here and typing, so here it is. I was dx'd February 11 (a Saturday - surgeon was a friend and called me at home with results), had BMX on February 13 (the following Monday) - it was a whirlwind. I went from perfectly healthy (I thought) one Wednesday, to dx, BMX, and back home by the following Wednesday. When I got my final path report, I was 90% ER+, 5% PR+, HER2- (actually 1+ but considered negative), 4 lymph nodes (one with a 1.8 cm tumor in it), LVI - Stage IIIA. Waited four weeks for a PET scan to rule out mets (it was completely clear), started dose dense A/C chemo in March, Taxol in May, went for a quick getaway trip Memorial Day weekend. While there, I spent one day playing laser tag, racing go karts, agressively riding bumper cars, etc, etc - very active things. Shortly thereafter, while still taking Taxol, I began to experience some rib soreness/tenderness opposite side. MO ordered a rib detail x-ray. It showed a "possible" hairline fracture to a rib (probably from the agressive bumper cars), and an incidental "spot of mild sclerosis", which wasn't there at the time of the PET scan. MO said it was nothing to worry about. The tenderness has stayed with me, but it's never even been enough that I needed a Tylenol. Last Thursday, my RO (who is much more cautious than my MO) asked if it had gone away. I told him no - no better, no worse - still there. He ordered a repeat rib detail. The spot is still there. It has not changed or grown in any way. But my RO says it is suspicious, although he thinks it is probably benign since I have not been taking chemo for the past two and half months since the last xray and it has not changed at all. He said if a malignant spot had popped up DURING chemo, it would have had to be growing fast (not a characteristic of my original cancer), and should have continued to grow in the last two months since I have not been taking anything to prevent it from doing so. So, over the weekend, I was somewhat relieved. However, this morning, when I went for my radiation treatment, his nurse told me that he had called my MO, discussed it with him, and they both agree that a repeat PET should be done as soon as possible after finishing radiation. So, back to hypochondria for me. I keep trying to remind myself that, worst case scenario, it is a single bone met to the rib and very treatable (possibly just with the Tamoxifen I am scheduled to start next month). Oy vay - why can't I be one of those people who can just put things out of my mind and not borrow trouble from tomorrow? Am I crazy to be freaking out this way?

CoolBreeze

You aren't crazy to be freaking out. You'd be crazy not to!

But, freak out and then you will have to calm down and let it go for a bit.  Find a way to do that, something that makes you peaceful.

Hey, take it from a metster.  Doctors are always going to be super cautious from now on.  They want to be sure they are treating you correctly and even though they probably think that you are okay, they want to be SURE.  So, of course they are going to repeat the tests.  I have had a spot on my lung that they look at regularly. It has never changed and now they are all sure that it is scar tissue.  But, they had it see it unchanging for a while to feel comfortable.

And, you are right, one met on your rib is so treatable.  Not great, of course, but treatable with serious hope.  They could radiate it, kill it, and maybe it would never come back.  That would be a condition called oligometastasis and there is even hope for CURE with oligometastses.  There are women with one met who have been NED many years and counting.  So, even if it is your nightmare, your nightmare might not be a scary as you think.

Speaking as a person who has been through iffy scans and has learned to parse doctor speak, I can assure you that even though it's mental torture for you, the thing looks good.  Trust me, oncologists are very rarely optimistic out loud and they rarely assure people that it is benign.  Yours is doing that and being really positive - almost lawsuit bait.  So, that is good news.  

FYI:  It is just compleltely normal to do another scan after a treatment.

So, how do you calm yourself down?  Well, people can't live in a high level of anxiety forever so you'll calm down on your own.  In the meantime, ativan at night to help you sleep, books you enjoy, getting out of the house, getting away from worry opportunities and stay OFF the internet trying to figure it out!  The internet is ONLy good for knowing what it is, it's a horrible diagnostician.

Big hugs to you, sweetie.  You are a lovely lady and I am wishing the best for you.  I know that even if it did come back mets (it won't) you'd be okay.  Try not to worry to much, everything looks really promising.

lanagraves

Thanks, Ann. You're absolutely right. I am so completely OCD about figuring things out. Sometimes that is good and sometimes it is bad. In this case, I think I have had to play out my worst case scenario and convince myself that I can handle that. I have two really good friends who are Stage IV: one had a couple of bone mets to the spine. She came to my hospital room the morning of my BMX and said "Look at me. I am living your nightmare. I am what you're scared of, and I'm ok." And she is. Both of them are working everyday, living their lives, and doing well. So, if it turns out that way (which, hopefully it won't), I just had to convince myself that I can deal with it, I think.