Hello there. I have been keeping a bit of a diary. Actually, I sit down thinking I have time to do an entry and then life takes over and I never finish. Oops. Well I now have a few days off. I jumped on a plane Monday after I received my radiation and came with Lenny on a work trip to Tucson for a small break. This never happens and I wasn’t so sure I could leave the kids and be able to take a few days off radiation, but everything came together and worked out perfectly. I will resume radiation Thursday afternoon when I get back.
So here I am in Tucson and have a moment to catch up with my blog. Just as I felt things were going smoothly I now am faced with more decisions. Here are the few entries I had started.
September 26, 2016 Officially in Menopause
Today, I went and saw my new Medical Oncologist (the doctor who specializes in just breast cancer for 40 and younger). I have been having horrible hot flashes and other side effects that I felt needed to be brought to her attention. I had begun to think maybe I was going through menopause. She explained today I had already entered menopause due to the chemo side effects and now that I have stopped chemo my body was fighting to come out of it creating horrible hot flashes. She explained in order for my body to continue to stay suppressed in the menopause phase which is needed I would begin endocrine therapy (to block hormones) as soon as possible instead of after radiation. This would entail a shot into my stomach every 28 days for five years and an oral pill taken daily for 5 years. She wanted to give me the shot today but my insurance hadn’t approved it yet. Today she ordered me to get another mammogram to make sure things are clear, then also schedule a bone scan to make sure the chemo hadn’t affected my bone density. The mammogram, bone scans, and shot are now scheduled for October 6.
She also ordered a new prescription to help with hot flashes and so I will see how this helps. The hot flashes are awful. They come on so quickly and my neck and chest start to sweat and I am not a sweaty person. Ugh. What fun!
She also had asked if I had followed up with a genetic counselor and I informed her I did have more blood taken and was still waiting for the results.
September 30, 2016 Results from more genetic testing
Today I met with my genetic counselor. I knew they had found something further because she had asked me to come in again.
To recall, I did have a genetic test completed on the BRAC 1 and BRAC 2 genes the day after my diagnosis (this test took 3 weeks to get the results). Of all breast cancers only 5-10% are inherited and a majority of the inherited can be traced back to the BRAC 1 and 2 genes. Since mine were negative I did not do the additional panel of testing at the time although I was aware of it. With technology now, there are 28 more genes they are aware of that cause cancer (not just breast cancer.)
My results came back with the additional panel that I do carry a mutation in the Chek2 gene. This gene carries a high risk of breast cancer and an increased risk for colon cancer. They have only been testing this gene for the last four years so it is fairly new. So what does this mean for me now? Well it came to be an interesting recommendation for me. The Myriad Genetic Laboratories in California that did the testing base their recommendations from two organizations, the National Comprehensive Cancer Network (NCNN) and the American Society of Breast Surgeons (ASBS). Both of which continue to carry the same recommendations regarding certain genes. However, the ASBS have recently updated their guidelines regarding the Chek2 gene to consider a bi-lateral mastectomy.
To summarize the information I received today was that CHEK2 does show an increased risk for a second breast cancer and there is some evidence that breast cancer may behave more aggressively in some women with CHEK2 mutations. Additionally, it also appears that some families may be higher risk than other families with CHEK2 mutations, and that family history is likely to play an important role in addition to the mutation information in estimating overall cancer risks. With my mother and both my great grandmothers having breast cancer it is likely I inherited the gene from my mothers side but with all women being over 55 at the time of diagnosis its hard to tell unless my mother was to be tested. However I have no medical history information from my father’s side. It will be important for my sister to be tested as it is a 50/50 chance she inherited the mutation. As for Austin, Bailey and Charlie, they won’t need to be tested until they are a young adult and at that time we hopefully will have better knowledge about this gene and recommendations. All our children are also at a 50 percent chance of inheriting this gene.
October 5, 2016
Since this recommendation is so new and two notable professional societies currently have different opinions on recommendations, both of my oncologists are taking it very seriously. My radiation oncologist will be meeting with a panel of other doctors to hear their opinions on October 11th. My percentage as it stands claims I have a 44% chance of having a second breast cancer. What Lenny and I have asked is how are these statistics related with someone who has undergone chemotherapy, radiation and endocrine therapy as risk-reducing interventions. They currently do not state what it is based off of and so we have more questions to be answered. At this time, I will be monitored with a breast mammogram and a breast MRI alternating every 6 months and I will begin colonoscopies once a year. If I do undergo a mastectomy it will lower my chances of ever having breast cancer again to less than 1 percent. What would you do? I think having peace of mind since I do have a long life to live will be what I untimely decide. Lenny says if we make it through one year it will continue to be on our minds if it will come back the next. However, I need to give it more time and get more answers. I am not mentally ready to undergo such an extreme surgery right now.
Radiation has been going smoothly. I go in every morning and the nurses are always very welcoming and easy to talk to. I see my radiation oncologist every Monday after my treatment. This past Monday (Day 13) after having an exam he said, “Are we even treating you?” My skin is not showing any sign of damage or irritation, which is normal to have after about two weeks. I am excited my skin looks great, between applying his lotion he created and a mixture of an essential oil cream I made 4x a day. Things are looking great.
October 6, 2016
I had a mammogram today, after having it done twice everything checked out good. The bone scan results will be sent to my Oncologist. I didn’t have the shot today, as insurance hasn’t gone through still.
As for my radiation, not sure if they upped my dosage because I wasn’t showing signs of treatment or if it just kicked in but my arm is becoming more and more sore by the day and the skin has become red and now appears burned.
October 11, 2016
As I sit here I am beginning to feel sick. I was so excited to come with Lenny that I packed my things and got the kids prepared with Nana for these few days that I forgot my medications. I am not sure if it is because I haven’t been taking my medications or if something else is happening but I started to feel sick off and on yesterday and now again today. I am thankful however I can just sit and relax and not do much.
I did end up going for a 4-mile run yesterday, my calves are sore now today. Lenny and I went for a hike as well yesterday evening. Having this time to just get away from the stresses of our normal days has been amazing. I’ve got to say Lenny has been a huge support to me these last six months. During this time, we have faced more hardships than we have the 16 years we have been together. I obviously don’t have a way with words but to sum it up I am so glad I have him by my side through all of this. I often feel bad that it is me who is dragging him through these not-so-fun life experiences but how lucky I am to have him. He shows me his love for me everyday. I feel ugly most days and I know life isn’t about looks but going out in public feeling self-conscious is something I am learning to get over. Lenny tells me he doesn’t care if I don’t wear makeup or a wig. I know I don’t need to wear a wig but more often than not I do because I don’t care for the stares and it usually makes me feel more comfortable to look normal. But then there are the days I really don’t care and go without. A lot of people tell me I have such amazing strength but Lenny and the kids have been my strength. The kids too, often tell me I don’t need a wig. Who am I trying to be anyways? I feel that I am pretending when I wear a wig but I have also had the comment, “What statement am I trying to make?” when I go out bald. So, I get torn on what to do because I’m not trying to make any statement really. Just this is who I am and what I am going through right now and sometimes it needs to be a carefree attitude of, it is what it is and you can think whatever you want.
Now, I am starting to get my hair back, which is exciting. However, I am starting to loose all my eyelashes and eyebrows. I thought I had gotten lucky and was going to keep them. I was told they would fall out last towards the end of chemo but didn’t know they could fall out five weeks post chemo. Oh well they too will come back eventually.
I will leave it as that for now. I am missing the kids already and we will be home before I know it. Hope everyone is enjoying his or her day. Talk to you soon. God Bless!