Today I should be having chemo. I'm not. I still haven't accepted that I have to wait another week. My doctor's office called and it appears I have tonsillitis and a sore throat. All the tests came back negative for Influenza or any other respiratory viruses, no infections that can be seen...other than the tonsils being swollen, I'm OK, well, besides the cancer I guess. LOL. I don't need antibiotics, my white blood cells still seem to be working. I guess that Colony Stimulating Factor (the immune booster) shot I take every second Sunday is working.
I had an appointment with the genetics counselor today prior to going for a blood test.
She basically just asked me for a family history, tracing all family members (cousins, aunts, uncles, parents, siblings, grandparents) and who had cancer and what kind. She then, knowing the risks of what cancers are genetically more likely to occur together, made a few connections and potentials for genetic causes. She determined based on some of my family history that it's likely my cancer has a genetic cause and it's possible in a few months when the tests come back they'll be able to tell me exactly what gene is responsible for my current cancer.
She also told me that regardless of how the tests come back, my girls will be placed into the Early Detection Program which means yearly ultrasound, mammogram AND MRI will be available to them at age 30 because their mom got cancer before 45. MRI is much better at detecting small masses and is good for women with dense breast tissue - which I have. I should've been having yearly MRIs...but oh well. No going back. The girls will also be able to access genetic testing at 18 - which for my sweet Ari is only 7 years away.
My sisters will also be placed into the high risk screening program. If I come back positive for any of the 19 genes they are testing for, I will need to notify all my cousins to let them know as well. It's a lot. Who wants to be the one making that call...certainly not I. I don't know if the genetics team would make those calls, I hope so.
If I am positive for the BRCA genes, or a few others that affect breast and ovarian cancer, I'll be having my ovaries removed as well. My cancer is Estrogen and Progesterone positive, which means that those hormones produced by the ovaries actually feed the cancer. Removing them removes a lot of estrogen and progesterone, it also puts me into menopause, but would mean I might be able to avoid hormone therapy which is a prescription with many undesirable side effects. (Either way by the end of 2020 I'll be menopausal, which I try not to think about.)
I'm going to try to qualify for this ovary surgery, if I'm not gene positive I'll have to make my case to a gynecologist, but the counselor tells me it's a reasonable request. I have a cyst on my ovary that has been monitored for a few years, now it worries me. But I have bigger fish to fry with the breast cancer for now. The ovaries would be a separate surgery that would take place after the radiation is over, and after my double mastectomy, which is definite, regardless of what the genetics shows.
I don't want one breast, and I certainly don't want to have to go through the stress of testing every year to see if the cancer has come back in the other one. I'll be boob-free by the end of summer. I googled some images of double mastectomy without reconstruction and it ain't pretty...but I'm not so worried about pretty anymore. I'm more worried about being alive and getting rid of this cancer.
Regardless, it'll be two months minimum when I find out about the genetics. They have to read each line of DNA from start to finish to see if something is wrong, it's not a small job. I was thinking when she told me that I had to wait 8 weeks minimum, that it was such a long time to wait. She said "don't worry, you'll still be on chemo when we get the results so there's not a huge rush". Hearing that hit home. I really am just at the start of this battle with cancer. I have so many more days to get through, surgery, radiation, tests and results. Then more tests and more results.
I was feeling impatient about my chemo delay of 7 days. I realize this is a marathon I'm running here, and not a sprint by any means. I should just relax.
The counselor also told me that it's possible the tests come back negative and all my genes are fine....then it's either environmental or just plain bad luck. I'm not saying I want it to be genetically caused, but if it does come back positive at least it'll make me feel like I didn't do anything to cause it. That on some level it couldn't be helped.
I don't have any appointments until my next blood test on Wednesday and then I'll meet with my oncologist to see if I can qualify for my chemo next Friday. If I lay low this weekend and this cold goes away, I'll be back on schedule in no time.
I am trying to think positively despite my setback this week. Worrying about anything this weekend wont change a single thing and next weekend I'll look back and regret not taking advantage of feeling slightly human when I could've.
I think I'm making progress, and learning so much about what goes along with a cancer diagnosis. There really are so many people who dedicate their work to identifying and preventing cancer before it spreads and sequencing genomes so that as a species we can identify these genes and prevent even more in the future.
The geneticist pointed out that by the time my girls are 18 who knows what we will know when it comes to genetics and advances there. She said just 3 years ago they were only testing for BRCA1and2 and now they're testing me for 19 genes. I'm not saying I'm happy to have cancer, but I am happy that any research on me could contribute to the advancement of what is known about breast cancer and how it can be prevented or detected early.
I don't want to think about my little girls having to deal with any of this, but knowing is better than not knowing and having all the information and tools is the best protection I can give to them now. I might not be able to promise them I'll be around forever, but I can promise them that while I'm here I'll learn everything I can. I'll let them know when they're ready the questions that they should ask and what they can expect.
Although when the geneticist pointed out everything could be different in 6 years when Ari is 18...it made me think of a world without cancer.
How wonderful that would be.
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