A common concern I see raised regularly by women recently diagnosed with breast cancer is whether or not to tell people about their diagnosis. Some people want to keep it a secret, others want to shout it from the rooftops. Here is my take on sharing our breast cancer stories.
When I first thought that maybe my lumpy breasts were unusual and I should get it checked, like many people, I kept it to myself. It wasn’t until after I had the mammogram, ultrasound and biopsy results a week later that I told my husband what was going on. I had to wake him up (he was working nightshift at the time) and tell him I had to be at the surgeon’s office in an hour – did he want to come?
On leaving that appointment I was booked in to have surgery the next day. It was a week from my first appointment to surgery, so it was all happening very quickly. Now I told my two adult daughters what was going on. One lived at home so would probably notice me missing overnight for the hospital stay, and I couldn’t tell one without telling the other.
Telling my eldest daughter was a little harder. To start with, she was living in Vancouver, Canada, at the time, and it was already late evening for her – too late for me to call for just a chat! But the worst part, was that her boyfriend who was with her in Canada, have only lost his father to cancer about 8 weeks before. I knew my possible (at this stage) diagnosis was going to touch raw nerves.
When I was officially diagnosed after that surgery (yes, my diagnosis was a little bit backwards) the reality hit and now I really had to make a choice. But for me, there wasn’t really a choice. I didn’t think long and hard about who to tell and when, to me it was just a no-brainer.
Apart from telling my husband and kids, there were only two other groups of people I told.
The first was my parents. This was not fun, as they live a distance away so I needed to call them. I managed to get them on FaceTime, which probably already gave them a heads up that something was wrong. My Dad was going through chemo at the time for stage 4 Melanoma, so this was certainly not something they needed to hear.
Next I had to call my sister-in-law. yes we are good friends, but I also was looking after her twins for a day each week so she and her partner could juggle work and childcare. I wanted her to be reassured I would still be looking after the kids in the immediate future.
After that, I announced it on Facebook! Yes, the very same day that I was told I had cancer I was sharing it all over the internet. This was how my siblings and close friends found out.
The reaction was incredible, and completely overwhelming. I received so many positive responses and support. This was one of only two times in my whole cancer journey that I had some tears (the other time was when my surgeon told me I was cured and would not need chemo – tears of relief!).
Over the days to come I had so many people talk to me in person, ask questions and offer support. I felt empowered. Not once did I receive pity or any negativity by sharing my diagnosis.
So why did I announce my breast cancer to everyone?
Many years ago my first pregnancy ended in miscarriage. I’m sure you can imagine how excited we were to find out we were pregnant, so excited we told everyone we knew. So when I miscarried just a few weeks later, I then had to tell everyone that.
And the telling people was worse for me than the actual miscarriage. That awful moment of getting the words out, the awkward reaction from the other person because they had likely just said something positive about the pregnancy or asked how I was doing expecting a good response. Then there was the pity and being treated like I was breakable.
So doing the telling all at once about my breast cancer diagnosis meant I didn’t have to do it over and over. It was also a bit of a coward’s way out by sharing it on Facebook. I did also screenshot the FB post and message it to a few friends who were not on Facebook who I felt should know.
There were a lot of other benefits to sharing too. It was freeing knowing everyone knew. I didn’t have to worry about who knew and who didn’t know – I could put that energy into healing instead. There was no pussy-footing around, and everyone knew I was okay to talk about it and preferred questions rather than worried looks.
Those first couple of weeks before I was officially diagnosed but was going through the tests were difficult for me. Not because I might have cancer (well, not ONLY because…) but because I couldn’t plan anything – and I couldn’t tell people why I was being evasive or indecisive.
I had been invited to visit one of my cousins for a weekend. I really wanted to go, but I couldn’t commit knowing that I might be up for some cancer treatment in the near future. But I also couldn’t say that, so I was making wishy-washy excuses as to why I couldn’t decide – and that’s so not my usual style.
It would have been impossible for me to continue to do this for the months and years of breast cancer treatment.
I also found it empowering to be able to use my own experience to educate others. I knew nothing about breast cancer, and as it works out, I was certainly not alone. It seems to be one of those hush-hush subjects talked about in whispers. Is this because people don’t want to ask questions for fear of being insensitive? I think so.
No one knows that mammograms are free over 40, not 50 as advertised (here in Australia.). No one has ever heard of dense breasts and what that means about breast cancer risk. Everyone thinks it’s not in their family so they’re not at risk (only 5-10% of breast cancer is genetic). So I made it my mission to share the word.
If my experience could encourage just one of my friends to go get a mammogram, then I was willing to shout if from he rooftops. As it happens, many of them did, and no one had a breast cancer diagnosis.
I believe that sharing my diagnosis and breast cancer story with friends, family and the world via this blog has been the main reason I have been able to cope with positivity and ease. It’s been cathartic telling my story, passing on what I have learned and helping to ease some of the fears of others.
I became so comfortable sharing my story that I think I overshared! So sorry to the lady at the airport counter trying to sell wine, my dentist and the guy who came to my door wanting donations for a cancer charity! You may have all got more than you bargained for!
There seems to be some shame and embarrassment around breast cancer though that stops us from sharing. I mean, no one is ashamed of skin cancer, or lung cancer. Both of those we perhaps SHOULD be more ashamed of. We know we get skin cancer from too much time in the sun, so we can do a lot to prevent it. The same with lung cancer and smoking.
But there are no such clear-cut causes with breast cancer. There are risk factors, yes, but we generally don’t “do anything wrong”. It is so prevalent that 1 in 8 women will be diagnosed sometime in their lifetime. That’s a lot of women hiding and feeling ashamed because of what they perceive as societal pressures. We need to change these perceptions.
Yes, I have a great bunch of friends and family who reacted in the practical, positive way that was right for me. I was saying this to one of them one day, and her response was “of course – you make it easy for us by the way you respond and share and act”.
So by sharing and being open, it made them feel open and unafraid too. We often see cancer in the media depicted as scary and traumatic, and I was showing people it isn’t always like this. I wasn’t aware I was doing this, I was just getting through each day the best way I knew how.
By being open and sharing your story, you will also receive the same in return.
I whole-heartedly believe that we should not be hiding our breast cancer diagnosis and should be sharing with all around us. You can see from my experience that sharing can be a positive experience personally, but I believe it is much bigger than that.
We have a responsibility to pave the way for those following us. I often think of my daughters. If they also have to deal with breast cancer in their future I want it to feel less taboo for them. We shouldn’t feel embarrassed or ashamed of our cancer today, and I want it to be even more normal for them.
I’m proud of how I handled my breast cancer. I’m proud that by sharing my story those who follow me down this path can see a positive role model. In fact I feel like this could be why I had it in the first place – to cope and tell my story.
I would not be able to encourage you to do the same if I didn’t!
Have you joined a breast cancer support group on Facebook but been completely overwhelmed by some of the posts? It’s fantastic that these groups are an open forum and all sorts of questions, worries and issues are addressed, but sometimes they can be too much. In fact sometimes they can be downright scary.
If you would still like to join a support group on Facebook but not be faced with some of the scarier aspects when you don’t want to see them, come and join Positive Breast Cancer Stories. Here we share positive stories, celebrate milestones and encourage each other rather than deal with the technical information >>
Click here to join now
You might find these other posts helpful
- Breast Cancer Myths You Need to Hear Today
- Things No-one Tells You About Having a Mastectomy
- Bilateral Mastectomy Pictures
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