Some women carry a gene that makes it very likely they will develop breast cancer or ovarian cancer.
What do you do when you get that diagnosis?
Evelyn and I attended Queen’s University in Kingston together. We met in September of first year at the IVCF (Christian fellowship group) and quickly became fast friends. I switched classes to be with her in Psychology. She laughed at me drinking Coke at 9 in the morning. I laughed at her pretty much all the time–she has an amazing sense of humour.
In second year, we moved in together, with two other women. We became best friends–and we dated guys who were best friends. We spent three years together non-stop, until we were engaged the same year, and married the same year.
We went to England together in July of 1991!
And the four of us (Evelyn and her husband Rob; me and Keith) celebrated our 25th anniversaries together.
Evelyn and I don’t talk often now, but we keep in touch. And one day last summer I texted her about something random (I forget what now) and she replied, and mentioned that she had had surgery the day before. And she told me her story. I asked her to write it up, because I was so moved by it, and I thought you all would be, too.
So here’s my friend Evelyn:
Until you hear the results, there is always hope.
No matter how well you prepare for the news, how much you expect you know the answer, there is the hope tucked away that, perhaps, you were excused from the lifelong changes that would follow.
When you get the positive result however, all that hope is gone, and you settle into the reality of what awaits you. And as disappointing as those results were, I write this note, more than a year later, and consider myself blessed.
My sister’s breast cancer diagnosis, followed by genetic testing, changed the course of history for the rest of the family.
Having tested positive for BRCA2, we knew that one of my parents was the carrier, and that my siblings and I each had a 50% chance of being a carrier (previous medical issues led me and my family to expect that I would land on the positive side).
The BRCA2 gene mutation is significant for women, in that it increases the risk of developing breast and ovarian cancer far beyond the national average. Statistically, 12% of women will develop breast cancer. This increases to close to 70% for those who carry the BRCA2 gene. The lifetime risk of ovarian cancer in the general population is less than 2% and between 10-30% with the BRCA2 mutation. As well, there is a greater risk of developing several other cancers, but not to the same extent.
Equipped with this knowledge, and thankful that our health care system provided the opportunity, I knew that I would move ahead with prophylactic surgery and have both a full mastectomy and oophorectomy (removal of ovaries and fallopian tubes).
In August of 2019, four surgeons and 4 hours resulted in full breast removal and reconstruction. 4-5 hours after that, I was on my way home to recover.
I recognize that there are varying degrees of how one feels about their breasts.
For some, it is just part of the physical make-up, and for others it is a defining feature. I would say that I fall more into the first category – they were a part of who I was – but they did not define me. My husband and I talked through both options: did I want a mastectomy alone, or a mastectomy followed by reconstruction?
There is no right or wrong answer. It really comes down to the individual person, and how they feel they will best deal with the physical, emotional, and mental fall-out that may ensue. Having no reconstructive surgery meant no further surgeries down the road. For the most part, one surgery and done. To choose reconstruction, would mean that there may need to be further surgeries as there is a “shelf life” on implants. So although I don’t believe I am one to be defined by my breasts, my husband and I did feel that reconstructive surgery would be better for my mental health, and would remove the daily reminder that this part of my being was now different. I knew that I still needed to feel feminine, and for me (not everyone) that meant having reconstructive surgery.
I struggle with worry about my health.
That is not new for me. By the grace of God and through the prayers of many, the hours leading up to my surgery were peaceful and absent of fear.
My husband had to say good-bye and was not allowed to enter the pre-op area. I had to get gowned up (including some very stylish compression stockings), meet with a nurse and numerous doctors, while I waited the 1.5 hours until my scheduled operation time. I had a lot of time to pray; a lot of time to run through the words of powerful Christian songs that reminded me that fear has to go when God says go, and then when God tells sickness to leave it is gone. Walking the hallway to the surgery room, behind the lead surgeon and flanked by two other doctors, I jokingly asked them if they were there to catch me if I decided to bolt.
Where was fear? Gone. Where was God? Walking right beside me – pouring his grace and mercy over me and covering me in peace, calm, and ironically… humour. Waking up without the “glow in the dark” implants I had requested, although understandable, was disappointing. There were some minor complications, but the surgery was successful, and I was thankful to have significantly reduced the probability of developing breast cancer. So thankful.
The requirement to be careful post surgery is to be expected – it was amazing to have a supportive husband who can help with drainage tubes and all that entails. I love the humour of God when my husband randomly selects the “best day ever” mug for my tea the day after surgery.
What I was not prepared for, however, was the difficulty I had in looking down at my body.
It was hard to see myself so bruised and beaten up. Every day my husband would check the site, look for any sign of infection, increased bruising, abnormalities, etc. But I could not look at myself. There were quick glances, but it took a while before I was able to take in the “new me”. The other side effect of full reconstruction is the loss of feeling in your breasts and the topically sensitive areas near them. This had an impact on my physical relationship as I am no longer able to “feel” things the way I once could. I found that some touch felt “annoying” or irritating if it was close to one of the over-sensitized areas. I needed reassurance that I was still physically and sexually attractive to my husband (who was, and still is, a rockstar through all of this).
There are times when I forget that I have implants. I feel normal and I feel whole, but I remember when I would first go into the shower and feel like I was wearing a shirt. The sensation of water falling on my naked breasts was different than before. Laying down can still cause some initial discomfort (when I first lie on my tummy it still feels like I am lying on a couple of tennis balls). My boobs get cold. Weird – I know, but there are times when I feel them, and they are significantly chilly. The upside to all of this, is that I will be “perky” when every other part of me is seeking to be closer to the ground.
6 weeks after my mastectomy I went in for an oophorectomy.
Because I was 49, the future promise of no more periods was of more significance, then the disappointment I might be feeling if I was younger and no longer able to have children. The surgery itself was shorter and less invasive, but the first hours of post-op turned out to be very uncomfortable and allowed my husband and I (and probably the gentleman that was grilling my bagel on my way out of the hospital) to witness a different side of me.
Apparently, hungry and in pain are not a good combination for me.
I consider it a blessing to have my ovaries out since ovarian cancer is considered a silent killer – often by the time it is diagnosed it is too late. I do not assume that this is an easy choice for many to make. Age was a factor for me – and waiting was not recommended.
But I had had my babies. For those that are younger and having to make the choice to no longer conceive in the traditional fashion- there is more to consider. To go into early menopause is not a decision that can be taken lightly – you need to determine whether hormone therapy is right for you (especially with the BRCA mutation) – and to consider the risk factors to your heart if you choose not. All discussions to be done with the doctors who understand all the variables.
I feel blessed that I had the opportunity to have surgery.
I feel blessed that my results were favourable. My sister that had breast cancer had a different path to walk.
Now do not get me wrong. I would prefer to have not needed surgery.
I am BRCA2 positive. There is nothing I can do about that.
But what a huge blessing that I was able to have preventative surgeries to significantly reduce my risk of developing cancers that have claimed the lives of 3 maternal relatives.
I do not understand some of the fallout from all of this.
There is a 50% chance of inheriting the mutated gene if one parent is a carrier. I have three siblings. We all tested positive. Since then – five in the next generation have been tested – all positive. Of the 10 people tested– 10 are carriers. Two of the 10 are my own daughters (and they gave me permission to share this). How I would have loved for them to have been protected from all of this – but that wasn’t my decision to make. I know they too are in God’s hands – and he loves them. I am thankful that those recently diagnosed, who have not yet had surgery will have support when, and if, they decide to move in that direction. I know God has a plan and I am content to find my peace in that fact.
2019 meant six surgeries for my sisters and me. 3 mastectomies and 3 oophorectomies. It meant a lot of waiting for appointments, tests, and results.
I was looking forward to 2020 and moving beyond what was 2019. As it turns out, 2020 has proved to be an interesting year all on its own.
Each of us have our own story. I am happy to tell mine – even if it helps just one other person to walk their road with greater comfort or confidence.
2 Corinthians 1:3-4 says, “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.”
If you want to reach out to talk to someone who has been there, I am happy to be here in the comments for you. I have learned to accept support and grace during a time when I needed it. I have come to understand how God was already caring for me 13 years before I was diagnosed. I found hope in an uncertain time. I am blessed.
Have you ever had a diagnosis like this that changed everything for you? Let’s talk in the comments!