Still struggling with the word pre-cancer after DCIS mastectomy

Sister

It's so important to be heard @averi.  I sometimes feel that there's some sort of veil that gets draped over the reality of breast cancer (and quite possibly, other cancers, too).  What can start out meaning to be reassuring can often have the opposite effect as in your case.  Another term I loathe when talking about cancer is "fight" - what happens if treatments don't work - did the person not fight hard enough?.. are they some sort of failure?  That's what I liked about Charlotte Tottman's manner - she comes across as straight up.  Understanding and empathetic but no sugar coating.  Fluffy words are something I no longer have time for.

ddon

@Sister I hate that word ‘fight’ too, and ‘battle’. This is not a battle or a fight. That implies there’s something that we have control over and something we can physically do to overcome. It infuriates me every time I hear it. I do what my doctor says, I endure the treatment and the meds, I eat well and exercise and I try to live. That’s it. What else can I do? How can I fight? 😤🤬

Afraser

Brave battler - a lazy, supposedly empathetic description that makes me cross. For many, ‘winning the battle’ involves a bit of luck, as in you found out early, the medication works for you, the side effects aren’t too severe etc. Brave? I have always adopted the Bravery Council’s definition of bravery - ‘taking yourself from a place of safety to a place of danger to assist another’. It’s the conscious volition that marks bravery - I don’t know anyone who chose cancer, or who might not dodge it given an option! Tagging you as ‘brave’ (or, worse, a hero) may make the speaker feel better but doesn’t do much for the object of the description. 

MBall

Hi @averi
i totally get where you’re coming from and have been through the same thing. I was diagnosed 1 year ago today with DCIS at the age of 36. My surgeon said to me that in Australia DCIS is considered cancer however anywhere else in the world they class it as a pre cancer. Saying that since then I have still been told by others that it is a pre cancer 🤷🏼‍♀️ it is definitely confusing and hard to know where you stand. I had a lumpectomy and re excision but still had cancer cells on the margin so was told I needed a mastectomy. I chose to have a bilateral mastectomy and immediate reconstruction with expanders. They also did a sentinel node biopsy where they took 2 lymph nodes one of which they found 8 tumours in. I am now on tamoxifen for 5 years. 

I actually wrote a post to put on my social media to raise awareness but am yet to post it. I’m not one to shout these things to the world but at the same time if it can help even one person to get checked i would be happy. Now to be brave and actually post it haha
One thing I’m not sure of is DCIS included in the 1 in 7 stat? And is it 1 in 7 or 1 in 8 women that will be diagnosed with breast cancer?? 

I wish you all the best in your journey @averi. You’re not alone. If only things were clearer xx

averi

Thank you @MBall

So after one year, do you still think about the trauma of the bilateral mastectomy even though it was the absolute right thing for you to do? Certainly there are times I feel glad mine was caught early and a mastectomy was something I had to do to secure my future. One of those times was recently when I heard about the passing of Kelly Preston. I felt really sad. You can have some of the best doctors in the world and the best care in the world but still die within 2 years! How can this happen in 2020?

I am a private person, I am not on any social media and definitely not one to make announcements. I work at a large company, considered as a big family and there’s a Facebook page with almost 300 members. I wrote a message to share my news and asked a friend to post it for me after my mastectomy when I was off work because I’d be an emotional wreck if people were to come up to me. Why did I do that? The real reason was to publicly thank a friend who had been and continue to be there for me every step of the way. She deserves to be acknowledged. Of course, she doesn’t know this was the real reason. I didn’t say much about myself, just that I was diagnosed with breast cancer and I’m taking time off work to get better. The response was amazing and filled my heart. When it was time for me to go back to work I questioned myself if I had done the right thing by sharing because I was extremely anxious about seeing all my friends and colleagues again. I felt exposed. Everyone was really respectful and I found out some of my female colleagues had their first mammogram as the Breast Screen van was at our workplace and they said it’s because they heard about my diagnosis. What I’m trying to say is, it really is scary to share something so personal so only do it when you’re ready and do it for yourself or someone you love like I did. You may feel unsure afterwards but I can guarantee someone will hear about your story and consider having their breast checked.