7/14/19: I Got Advice from Women Who Had DMX

Online, a double mastectomy is frequently abbreviated as DMX or BMX (for bilateral mastectomy). PDMX or PBMX refers to a prophylactic double mastectomy, one that is performed as a preventative measure because the patient has a very high risk for breast cancer.

I personally do not know anyone who has had a DMX, but when I told a friend of mine about my DMX plans, she said she knew several! She offered to connect me with a good friend of hers who had the procedure done years ago. I am so grateful for my friend, and for the introduction she made.

Not only did my friend's friend have a PDMX, but her 2 sisters and a friend did as well, plus another friend had a DMX due to cancer. Wow. That's 5 women in her family/friend circle who have had the procedure. On the one hand, it's inspiring to know so many success stories. On the other hand, it's depressing that so many individual stories exist out there. 

I am beyond thankful for the incredible wealth of information that my friend's friend emailed me. She gave me her own tips, and then she also forwarded to me the advice that her sister gave her friend, and the advice that friend gave another friend! So that's 3 primary sources. 

My friend's friend compared all the advice to like getting advice when you have a baby for the first time. Everyone has their own opinion, based on their own experiences, and what works for one baby/family/mother might not work for another. But it's still good to gather all the different perspectives so you have an idea of the range of possibilities.

I appreciated that reminder because I did see variability in their advice. For example, one person said the hospital gave her "excellent" bras, the other said the hospital's bras were "awful". (They both had reconstruction.) Regarding drains, one person said they were "uncomfortable", another said she "didn't find them uncomfortable". I consider every piece of advice valuable because together they give me a better picture of what I might expect.

Interestingly, I noticed that all 3 women who gave advice had PDMX. I think this distinction is important. I think having a DMX in response to a cancer diagnosis adds a whole other layer to the experience... Getting lymph nodes removed adds another component to the physical recovery, post-surgery appointments additionally include medical and possibly radiation oncologists, and there's also the psychological factor of worrying about surgical margins and pathology results.

Speaking of psychological factors... I feel like women who opt to have PDMX are more likely to go into their surgeries feeling empowered. They must have been scared when they found out they have a high risk for breast cancer, but then they took their destiny into their own hands!

As a cancer patient, however, I feel more powerless than empowered. I guess the "double" part of my surgery is by choice, and I do feel good about that. But overall, I was blindsided by the whole diagnosis, and I feel like I'm being carried down the river of cancer treatment. I guess I can try to control the boat I'm in as much as possible - like it was my decision to have a DMX, and I can try to face this whole thing with positivity - but generally speaking, I just have to follow the current and see where this river leads. 

I also found it interesting that all 3 women said to stay away from online content, like other people's blogs and online forums, because they tend to be negative and lean towards experiences with complications. But I think that really must be an individual preference, because I do not at all regret joining the Facebook groups. I have found them to be so full of positivity and support! To me, they are spaces of inspiration and reassurance. I think they even help to lower my anxiety. Yes, there are women who post about all kinds of scary complications (and I can see how, for some people, it would be better not to go down those rabbit holes), but the responses always include calming advice and reassuring words. And there's definitely a fair share of women who post about totally smooth and complication-free surgeries and recoveries. I think I just appreciate knowing that I am not alone. Other women are going through similar, or even more harrowing, diagnoses, and they are coming through just fine. 

In addition to joining the Facebook groups, I also stumbled upon this blog, which I have found very helpful:

BC Becky: Never thought I'd want to be identified as a breast cancer survivor...