Wednesday, August 26, 2020

Living with BRCA - Interview with Linda and Kevin Part 1

Each month my wife and I get together with a small group of friends for dinner at a local restaurant. We call our little group "The Classics." We rotate who chooses the restaurant monthly, so we get to explore the many restaurants in central Texas and sample some of the many delights to be had. The monthly dinners also gives us the chance to share news and update each other on life events. We have been friends for almost 20 years and are very familiar with each other.

 

The Covid-19 pandemic has put a stop to monthly dinner out. However, we recently got together to say goodbye to our dear friend Carol as she entered Hospice. Her body could no longer compete with the 3rd bout of cancer. We were at Carol's home, letting her know how much she meant to each of us. Sadly, this is when our other friend Linda told us a lump had been found in her breast and a biopsy was scheduled.

 

Carol passed away a few days later. She was a nurse and had helped many cancer survivors over the years. She too was a breast cancer survivor and around five years ago fought a second bout of reproductive cancer. Unfortunately the 3rd bout proved to be too much for her body. We miss her dearly.

 

A few days after Carol passed away, Linda received the news no one wants to hear: "Your mammogram and biopsy results confirm invasive ductal carcinoma in the right breast."

 

Linda, her husband Kevin, and I had several conversations before and after the diagnosis. I was intent on them knowing they were not alone. We would provide what support we could, as needed. I also referred them to this blog, for information on what my family did to prepare for surgery and post operative care.

 

I asked Kevin and Linda if they would allow me to interview them about their cancer journey. The interview was conducted after the cancer was surgically removed, and before radiation treatments began.

 

The interview is divided into 3 parts. 

Part 1 = Linda
Part 2 = Kevin
Part 3 = Couple

 

Linda and Kevin,

 

Thank you so very much for agreeing to this interview!!

 

Again, thank you for your willingness to talk openly about your experience. I found during my cancer journey, my family’s older generations hid things from us and would not discuss reproductive cancer. So, I was unable to answer several questions my Oncologist asked me at the beginning of my journey. I sincerely wish this interview, along with other content on my blog, prepares someone by sharing knowledge and offering tools needed to navigate their cancer journey.

 

With that, let's get started by asking Linda a few questions.

 

1. Tell us about your family history of reproductive cancers.

Linda: Well, my family did not openly discuss reproductive things. However, I found out my biological mother had breast cancer. She died when she was around 70 years old. I'm not aware of her having regular testing/mammograms. My biological aunt had breast cancer at an advanced age. She had a mastectomy but she refused chemo. The cancer came back and eventually she succumbed to cancer.  My biological father (~84) and biological brother (~57) both died of lung cancer, from smoking. In my early 30s I was taught how to do self-exams by a doctor and I started regular mammograms around the recommended age of 40 years old.

2. Tell us how your cancer was detected.

Linda: A routine annual mammogram. They saw a TINY mass, deep in my right breast. An ultrasound was performed for a closer look. Followed by a needle biopsy within a week of the mammogram. The doctor called me with the biopsy results shortly afterwards. It was 3 weeks from the mammogram to the diagnosis. This was my first time having a lump or anything of concern.

3. Tell us what was going through your mind when you heard “biopsy” mentioned the first time.

Linda: I was scared but confident because they used the word "tiny" and that made me think, they had caught it soon enough. To be honest, I was hoping it was negative but I knew it was in God's hand and all would be okay.

4. Please describe your biopsy experience.

Linda: No special preparation, just no deodorant, perfumes, and no eating. Waiting for the results caused some anxiety. However, once I had the results I knew the path that I had to take. There was no discomfort from the biopsy.

5. Tell us about the referral process for an Oncologist.

Linda: Originally my family doctor gave me a referral to a local Oncologist. However, after speaking with you, I made an appointment with Dr. O'Brien at Texas Oncology. Her gender was not a deciding factor but I do prefer female doctors. 

6. Tell us about your first meeting with the Oncologist.

Linda: Information overload! The pandemic prevented Kevin from coming inside with me so he waited in the car and we had a telephone conference with him. Kevin took lots of notes and the doctor was very thorough, including what is going to happen next. She was very kind and understanding. I could tell she was a nice lady. She recommended that I get tested for BRCA mutation. Of course, I was more concerned about my children possibly inheriting the BRCA mutation, as I was already going through it.

7. Tell us about the surgery.

Linda: My BRCA test came back negative. I chose a lumpectomy instead of mastectomy because being BRCA negative means the chance of recurrence was very small. However, if I would have been BRCA positive, I would have gotten a mastectomy. The morning of the surgery I had to wake up very early to be at the hospital at 5:00 AM. I did not sleep well the night before and could not drink coffee that morning which caused me the most discomfort. Recovery was a couple hours in the recovery room and then I was released to go home. My true discomfort came later!

8. Describe your Post Op life.

Linda: I did not have any post-op restrictions other then be gentle on the incision in the shower for a week or so. I took pain pills to help sleep at night. The pain pills caused some constipation issues. The worst part of this whole experience is the swelling and fluid retention under my arm from the lymph node removal. I have had it drained twice since the surgery and it is very uncomfortable. It's important to keep the compression bandages on 24x7 during the healing phase to prevent the fluid buildup under the arm. I now have a hard lump under my arm. It’s very uncomfortable and very worrisome. The radiation treatments are okay. They do not last long and there is a little bit of redness on the skin immediately following the treatment.

9. Please share any other thoughts about your journey.

Linda: Here's an economical tip for those going through a lumpectomy, I used feminine menstrual products between my bra and skin to prevent rubbing and chaffing. Being diagnosed with cancer is bad. However, I feel blessed as my journey had many things that went right. My cancer was very small in size and confined to one specific area. I am BRCA negative. I did not need chemo.

10. Is there a question you wanted to me to ask that I did not?

Linda: No, I think you covered it. 

 

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