Breast Cancer Journey: Tests, Tests and More Tests

I was diagnosed with breast cancer in September 2008. For Breast Cancer Awareness month, I am continuing to share parts of my online journal that kept my friends and family updated throughout my treatment. Today I am piecing together a look at the many appointments and tests that happen before a treatment plan is ever put in place. Between Sep 15 and Sep 26, I had already been to four appointments for initial consults and second opinions, so now here we are on appointment number 5:

Sep 26, 2008 – Today I had the breast MRI and the pelvic ultrasound. Besides the power going out in the middle of my MRI and having to restart the entire test (!!!!) that test was pretty easy. I was a little nervous laying face down while the machine knocked and whirred around me, but I’m sure it is just a cakewalk compared to what I have ahead. And finally some good news…my ovaries look fine. Whew. That test was just a precaution since the two cancers are linked, but it was nice to get a negative result for once.

Sept 29, 2008 – The MRI results came back okay. (Reminder: Nothing is conclusive until surgery). The tumor measured a little larger than originally thought…3cm instead of 2cm. According to my doctor, this doesn’t make any difference since I am planning on a mastectomy anyway, but I thought it was still scary to hear. The lymph nodes all looked normal on the MRI, but one under my arm looks enlarged. This could just be from the biopsy, very similar to when you get sick and the lymph nodes in your neck are enlarged. So like I said, only surgery will tell.

As far as my left breast, they found something they suspect is just a benign cyst, but it is recommended I get it biopsied IF I am opting for a single mastectomy. So…that is a decision we have to make this week – single or double. Sigh, nothing is black and white. I wish I knew the right answer but I think we are close to a decision. I am already high risk since I already have breast cancer, and I’ve read a lot of message boards where women are having to go through this emotional process all over again 10, 15, 20 years later on their other breast because they opted for the single mastectomy the first time around.

The doctor and I also started discussing dates, which I think put me in a funk today. All of a sudden this is becoming more real, more concrete. No more waiting for test results and researching doctors…we are trying to set a date for surgery. Part of me is ready to get this thing out of me. My mind envisions it growing in my body and taking over…I want it OUT. But another part of me is scared to take that next step because I have no idea what lies ahead.

Oct 2, 2008 – Today was a long day. We met with the plastic surgeon first thing in the morning. Jaime and I had both done a lot of research over the past couple weeks, so nothing she said was really new to us. We both liked her and she comes highly recommended, so she’s the one we’ll go with. I’m so tired of meeting with doctors and trying to make decisions. I’m ready to get my treatment started. So the plastic surgeon and breast surgeon will be deciding on a date when they are both available. I should get a call either tomorrow or Monday at the latest for a date on my bilateral mastectomy. Gulp.

My second appointment was the PET Scan. I couldn’t eat SIX hours prior, so 6am was the latest I could have eaten for a 12pm appointment. Those of you who know me well know that I would NOT be getting up before 6am just to eat. As if! So it was a long morning of smelling food EVERYWHERE and not being able to eat. Then when I get to the appointment, what do I have to do on an empty stomach? Drink this horrible, thick, “berry flavored” barium drink. Yummy. The rest of the scan was pretty easy…I had to get injected with a radioactive substance, sit on a lounge chair for 45 minutes, then spend about 20 minutes getting the scan. By dinner time, my doctor had already called with the results and everything looked good! So nothing else detected in my body. I have high hopes that the cancer is just in my right breast and that’s it.

The worst part of the PET Scan was finding out that I couldn’t hold my kids for the rest of the day because I was radioactive. I had no idea so the news upset me. I feel like I already have recovery time after surgery where I won’t be able to pick up my kids, then I will have many weak moments during chemo where I won’t be able to even take care of my kids, and now here’s a test where it’s dangerous for me to be around my kids. It just made me really upset on my drive home thinking about everything I am going through and how I’ve taken for granted just the little action of cuddling with my kids at night. This disease has definitely given me a new perspective on things….so even though it is taking a lot away, it has given me something positive. I think I will look at things in a new light, appreciate more and worry less.

Oct 13, 2008 – About 3 weeks ago I had blood drawn for a gene test. The test was to determine if I have the hereditary BRCA1 (BReast CAncer 1) or BRCA2 gene mutation, which puts someone at an extremely high risk of getting breast or ovarian cancer. The doctor called today with the results and it came back negative!! This is great news because even though I am still considered high risk, this greatly reduces my risk of getting this horrible disease again or having my future grandchildren inherit it. I think it also means I don’t need to consider a hysterectomy anytime in the near future.

These small accomplishments definitely boost my spirit so I will take them when I can.

Notes from my 12-year survivor-self:  So many things to test but every single one gave my doctors a much clearer picture of what was going on and how to fight the cancer. The body really is an amazing machine that all works together. So it was important to know how this cancer was affecting my body as a whole and it even drives a lot of my decisions I make today, such as what to do to keep my hormones balanced. In the end, I did decide on the double mastectomy and have no regrets (more on that in my next blog post).

In regards to the gene test, this is dated information. There are now many more genetic markers they can test that give a better indication of future risk. I recently went through a more extensive gene test to update my records. If you are going through breast cancer treatment today, ask your doctor about genetic counseling to determine what is right for you.

In the last 12 years, I have continued to have bloodwork and follow-up appointments, but nothing like that first month after diagnosis. I started with 3 month follow-ups/bloodwork, then moved to 6 months and now am at 1 year. I have had one breast MRI in 12 years because of a little scare when I thought I felt another lump. That MRI was probably more emotional than the first one because of the fear of reoccurrence! But all in all, things are much easier these days. I am more in tune to the changes in my body and I encourage everyone to get to know all your lumps and bumps and watch for any changes.

To anyone at this stage in their treatment, things will soon become a little less overwhelming. Once active treatment starts, things settle into a bit of a groove and you find yourself counting down the days until end of treatment! So just continue to take care of yourself and use your people. You are not alone.

Stay Healthy!

Go to Breast Cancer Journey: Diagnosis for more on Angela’s breast cancer story.