Stage 2, BRCA2+
Meet Ann, Triple Negative Breast Cancer, BRCA2+, Stage 2 Celebrating 7 years disease free!My Year of Living Cancerously,
by Ann Loonam
January 26, 2020
In November of 2012, I found myself putting off my annual mammogram which I knew I needed to take care of. I have an extensive family history of cancer, and my Mom had just passed way from metastatic endometrial cancer a few months earlier. As a result, catching up on my medical appointments was not a high priority. Though in hindsight, it certainly should have been.
My Dad died in 1986 from prostate cancer when I was a junior in college. One of my sisters has had thyroid cancer and all three of us girls in my family have had skin cancer. My brother is the only one in my immediate family who has not had a cancer diagnosis and I pray that he never hears the words ‘you have cancer.’
After my initial mammogram in 2012 I was called back for additional imaging. This had happened a couple of times before, and I wasn’t all that concerned about it. When I walked into the imaging area, the same technician greeted me who had done the initial mammogram.
‘Do you know why they wanted you to come back in?’ she asked.
‘I’m guessing they just needed more images.’ I responded.
Then I saw the computer screen with my mammogram up on it. I could see the two spots as bright as day, one larger than the other.
More mammogram images were taken, then I was told an ultrasound would be needed. The ultrasound was conducted, and it was after that when the radiologist came in and sat down. He said in effect that there were some spots that looked ‘suspicious for cancer.’ He told me a biopsy would need to be done, and asked since I was there already did I want to do it then or come back another day? I opted to have it done then since I was there, I then went into to a small changing area and waited for the procedure room to be prepped. That’s when it hit me, I most likely have cancer.
The radiologist noted that I seemed fairly calm, that’s when I told him I had just lost my Mom to cancer and couldn’t believe this was happening to me now. I have 3 siblings, 2 live out of state, and my other sister an hour away. As I got changed for the biopsy, I sent a text to my sister in Oregon saying, ‘it looks like I have breast cancer.’
The gut feeling I had was correct, it was cancer. This was confirmed after the biopsy by my primary care doctor the next day. I wasn’t surprised at all, though I was numb and a little stunned. The official word was stage 2, triple negative breast cancer, and after genetic testing I have the BRCA2 gene mutation as well.
What followed was treatment that did not go as planned. It was to be surgery, chemo, then radiation. Being diagnosed with triple negative breast cancer, there was no disputing that chemotherapy was in the plans. After the first surgery the margins weren’t clear, so I was given two options: go back in and do a re-incision to get the margins clear or go straight to a mastectomy. I opted for the re-incision. From the time of my diagnosis I was hoping and praying that I wouldn’t have to undergo a mastectomy.
After the second surgery I had a call from the surgeon who let me know the margins still weren’t clear, and that a mastectomy would be necessary. I sat there and let the word sink in, mastectomy. My sister was visiting and helping me after my second surgery and after I hung up with the surgeon I asked her to let my other two siblings know what the new plan was. Again, I found myself stunned and, in a fog, trying to wrap my head around this latest news.
What was truly awful when I look back now, is that I started chemo not long after hearing this news that I had cancer and knowing that when I was done months later, I would have to undergo a third surgery (the double mastectomy) and have my ovaries removed due to the genetic mutation. The cancer was on the right side, but I saw no reason to have a one-sided mastectomy with my family history. What followed was months of nausea from the chemo that nothing, and I mean nothing, helped. Debilitating bone pain in my legs that was so bad I could literally hardly stand it (thank you Neulasta!) I had made it through 10 infusions of the second chemo drug and had to stop before I could complete all 12. I was in so much pain and so miserable that I just couldn’t do it.
There was no ‘final chemo’ celebration, no bell to ring, no signs stating that I was done with photos taken, etc. It came to an end when I called the nurse and told her in tears that I couldn’t come in that day as planned for chemo, I had given up, the side effects were too extreme.
After some time to recover from chemo (about a month or so I believe) it was time for my last surgery. Honestly, I had been in such a fog of grief and sadness that thoughts of that final surgery hadn’t really been top of mind for me. At that point I just wanted to get it over with.
I couldn’t work at all through my 8 months of treatment. The side effects from chemo were too extreme which ruled out even working part time.
What followed the final surgery was the biggest surprise to me. I felt relatively ‘good’ for a month or so then came down with pneumonia. I couldn’t remember the last time I’d had pneumonia. After pneumonia, it was one virus or illness after another, and I was beyond frustrated. It wasn’t the ‘every day will feel like your birthday’ feeling that a friend and fellow survivor had told me during treatment to look forward to.
After finally seeing an integrative MD about 5 months post treatment I found out that stress takes a terrible toll on the immune system, and that I went into 8 months of treatment broken down in a variety of ways. Having just lost my Mom and all the grief and stress associated with that had taken a huge toll on my body and I had absolutely no idea.
Not having that important piece of information, understanding the state of my health before treatment, is what I wish had been handled differently. It’s important in my opinion, for anyone undergoing such harsh treatment for a terrible disease, to know what kind of shape they are in (other than having cancer) beforehand.
What I would do if I could go back and change anything would be to have seen an integrative or functional medicine MD before chemo and find out if there was anything I could do to help my immune system and to detox from the medications. I can’t say for sure, but I would assume chemo would have gone a bit smoother, and I wouldn’t have ended up getting sick so much post treatment.
My oncologist told me that in her 20 years of practice I was the one patient who had such a horrible time with chemo. I kind of wish she hadn’t told me that, but I don’t doubt it, it was awful. It was an odd feeling once I had gone through the three surgeries and 2 cycles of chemo – one of finality but not having any direction as to ‘now what?’
I believe that survivorship, and all the mental and physical aspects that come with it, should get more attention. I could have used some type of guidebook of what to expect, but I had nothing to go on. Just watching other friends go through treatment but we are all unique and handle treatment differently.
Since 2013 and getting through my treatment it has taken a very long time to get my physical and mental health on track at the same time. I worked with a nutritionist, the integrative MD and others to learn as much as I could.
Fast forward to today and in August I’ll celebrate being cancer free for 7 years. A big takeaway from my cancer experience is that I don’t want what I went through to be for nothing. I learned a great deal post treatment as I’ve focused on my health and that’s why I freely share my story others.
In 2016 I set up my Luckygirlbyann FB Blog page and Instagram account to talk about what I learned along the way post cancer, other topics I am passionate about, along with quotes I find inspiring. What helped me get through my ‘year of living cancerously’ was the vision of a bridge and getting to the other side of it. Using the word ‘journey’ to describe going through what cancer patients do every day did not resonate with me from the beginning (nor did it resonate for Andrea).
That bridge turned out to be a lot longer than I had planned on or anticipated but I did eventually cross it, and for that I am grateful.