PET Scan + Genetic Counseling

Wow, things are moving so quickly, and I am so wrapped up in my minute-by-minute survival, trying to make sure that I'm in the right place at the right time and my husband is in the right place at the right time, that I apparently forgot to share some big details. (I also tend to lose track of what I've shared with whom and who knows what and how.) I alluded to it in my last post, but apparently never actually mentioned that I called first thing on Monday morning to schedule surgery. I now have a lumpectomy scheduled for next Monday, May 18th, and although everything is happening so fast that it is slightly overwhelming, I'm also glad it is happening so fast. As Christine commented in my last post, 'Get that shit OUT!' My sentiments exactly. I think no matter what - i.e., regardless of the results of genetic testing (see details below) - I would proceed with the lumpectomy, even if something more major is in my future. The chances of me having one of the high-risk mutations like BRCA1 or BRCA2 are low, but even if I do, and even if I decided to have a double mastectomy, that's something I would need time to wrap my mind around. In the meantime, I am anxious to get what we can get out OUT. So far, all signs are pointing to a pretty straight-forward surgery, pending the news from the PET scan I had this morning.

Highlights of the day:

• Dr. L called me this morning to let me know that she had looked at my MRI and did not see anything remarkable, other than what we already knew. She was waiting for official results from the radiologist, but thought the MRI looked good.
• She also wanted to discuss the management of my DVT, and said that I would need to stop taking Xarelto on Thursday, and switch to Lovenox, which is the drug you have to inject into your stomach. UGH!! (Now that I think about it, I'm curious why Lovenox is okay during surgery, while Xarelto is not.) Needless to say, I'm not really happy about this, but... I'll survive (while cursing my orthopedist 1000x times over).
• I asked about the possibility of not needing to be on an anticoagulant anymore, given that my last ultrasound looked pretty good. So Dr. L pulled up the ultrasound results from February and read them aloud to me, and they actually didn't sound that good, lol. I was about to say, 'Okay, never mind,' when she said, 'Yup, sorry, not a good idea.' (Did I mention that I am cursing my orthopedist 1000x over?) (Also, the fact that he told me it was okay to stop taking Xarelto in October, and now a second doctor has told me it's not safe for me to stop SEVEN MONTHS LATER, makes me want to write a formal letter and complain about him. Seriously! But fortunately for him, I don't have the time.)
• After our conversation this morning, Dr. L sent me two e-mails - one with the official results from the MRI and one with more test results from my biopsy, showing that the tumor is negative for HER2, which is a good thing, since HER2 positive tumors tend to be more aggressive and are more likely to come back. The only potentially concerning thing about the MRI results - and I sort of knew this already - is that the tumor is right up against my chest wall. According to the report: This lesion abuts but does not definitely invade the left pectoral muscle in this region. So it doesn't necessarily spread into the muscle, but it also doesn't necessarily NOT spread into the muscle, either. And of course, there are still the PET scan results to shed more light on this. So we wait.
• Speaking of the PET scan, it was uneventful. It wasn't actually too bad compared to some of the other things I've experienced in the past month, except that it took two hours. First, I got injected with radioactive glucose and had to sit for an hour while the glucose spread. I got a lot of grading done, though, so it actually worked out well. Then the scan itself took about 45 minutes, but it was very peaceful and quiet compared to an MRI, and I was able to take a power nap.
• After the PET scan, I rushed home to relieve my husband so he could get to a lunch meeting. Both kids were home sick today (when it rains, it pours) although thankfully they both seemed fine this evening. I leaned heavily upon the electronic babysitter and let them watch movies for several hours straight, while I had a grading marathon. I got my first set of exams graded, which was a relief. One down, two to go.
• In the afternoon, my husband took my daughter to the orthodontist, my mom came to watch my son, and I went to see a genetic counselor, Melanie. I feel sort of bad because I've been super crabby with this woman, mostly just because I'm super crabby in general these days. The appointment didn't start off well when she asked me what I hoped to get out of it, and I just stared at her. Seriously, I had no idea. And I was too tired to even make something up, so I said in a fairly pissy voice that I had no clue why I was even there. Poor woman.
• However, I think I redeemed myself. Once we got going, the meeting was actually good and fairly informative. Melanie really didn't tell me much that I didn't know, but it was interesting to talk about genetics in a clinical rather than academic context. If nothing else, it will give me some good material for the cancer lecture I give my class. LOL.
• We also had a rather deep discussion about the usefulness, or lack thereof, of genetic testing in the absence of a family history. In the end, I agreed to do a full genetic analysis, which means that I will be tested for 29 different mutations known to be associated with breast and ovarian cancer. These range from BRCA1 and BRCA2 to fairly insignificant mutations that increase the risk of cancer, like, 1%. However, Melanie explained that having the results might be useful in the future, as more discoveries were made about certain genes. She also said that it might not be as easy to get tested in the future in terms of insurance coverage. The way it works now is that if you qualify to be tested for the 'high risk' genes, you can basically tack on the full analysis for no additional charge. Insurance won't actually cover the full analysis, but the labs don't charge you for it. So... why not? I guess? I also signed a form allowing my results to be used for research purposes, so hopefully that makes the $5,000 worth of tests that the lab does free of charge worth it. (You have to figure there has to be something in it for them.)
• Out of curiosity, I asked Melanie what the criteria were for insurance to cover genetic testing. She said that for breast cancer, anyone who is 40 or younger automatically qualifies. Anyone who is 50 or younger and had/has an immediate family member with breast cancer also qualifies. Then she said there were other ways to qualify as well; for example, if you have a tumor that is negative for estrogen sensitivity, progesterone sensitivity, and HER2, that qualifies you. All in all, it was a fairly interesting conversation, and hopefully I left her with a better impression than I'm sure she began with. I'm sure she was DREADING this meeting after our initial conversations on the phone.

I think that about covers it. I hope I didn't miss any important points, but I can't make any guarantees. I'm in full-fledged survival mode. Thank you all for your comments, e-mails, texts, etc., and thank you, C, for dinner tonight! I'm on a $12/month cell phone plan because I normally don't use my cell phone very much, but I've been getting notifications all night that my account has 'insufficient funds.' I need to figure out how to upgrade my plan now that my doctor and all these medical people have been calling me 10x a day, and I've been getting tons of texts. Maybe upgrading my plan and getting a smart phone will be 'surviving cancer' treat to myself.