One Thing You Should Never Say to Someone Who’s Experienced Loss (or a cancer diagnosis)

Hi all. I’m glad your journey has led you to finding Nancy here as I just have. Im 38 & my younger brother was dx with stage 4 colon cancer 4/19 & had a colostomy bag placed as well. We are only a year apart & we’ve always been very close. My parents & my brother’s amazing gf & I are happy to be considered part of his support system & main caregivers. 7 months later, here I am after reading Nancy’s ton of bricks entry. I have been highly emotionally & easily triggered for almost a week now. I’m feeling heavy & lost & angry & shaken & all the things that I haven’t felt so intensely up to now. There’s a sort of detachment with these emotions that made it hard to even connect it to his situation because they came out of nowhere! It started after we all celebrated thanksgiving early last week (chemo symptoms would have made it pretty rough on little bro for our original date). Not sure how to navigate this for myself. I hope this isn’t the wrong place to share as I truly don’t want to offend anyone.

Six months after my reconstruction (expanders then implants) I called my PLastic Surgeon’s office to inquire about a 6 month follow up and was told I didn’t have or need that appointment. When I said I wanted to come in, as I had an issue with one side’s implant, I was transferred to the nurse who had done my “fills”. I described my issue, and was told that was normal for reconstruction. I then said I knew of others who had gotten fat transfer to help fill in the “gaps” (which was my problem...an implant over and a large gap on the edge) and was told my Dr didn’t like fat transfer because it doesn’t work. So I was basically “dismissed”....never asked to see me in person. My daughter happens to work for a renowned hospital in another city and when she found this out, insisted I meet with their head Plastic Surgeon (who is well known for correcting reconstruction issues). He was wonderful and is correcting my issues, actually tomorrow! So depressing to be “dismissed” by my original Plastic Surgeon, who is very well known and respected as one of the best in our large city, but I have since been told he doesn’t ‘t really like reconstruction...just does it because he feel “obligated”. That was depressing but feel fortunate to have found the right place to go.

Jan,

What was said to you by both the surgeon and her nurse is unconscionable, unprofessional, and just plain ugly. I would never go back to this office again. For every ignorant office like this one, there are skilled and caring professionals who want and can help you. Don’t be deterred-look for the right surgeon. Read reviews, consult other hospitals in your area, do what you have to, get the help that you deserve.

I had a similar experience when I was asking for a referral from my long time primary care physician (PCP) to treat my breast cancer. Not only did I not receive a good referral, but I was dismissed, mocked, and ugly things were said to me as well.

I was hurt for a few days. But I got on the phone, the internet, and did everything I suggested to you. And I found my own breast surgeon, who did an outstanding job, and through his referrals I obtained a wonderful cancer team, who I still see today. And when my treatment finished, I made one last move, to a wonderful new PCP who interacts well with my cancer team and who cares about my health. I know without doubt that my outcome would have been very different had I not taken the initiative.

I’m rooting for you! You got this!

The harshest thing I've heard wasn't even said to me. I was chatting with the wife of a male cancer patient in the waiting room and she started to tell me what a wimp her husband was and how much he complained about chemo. She mentioned that her friends, who were breast cancer survivors, chided him for complaining using the phrase, "at least you didn't have your boobs lopped off". I really felt bad for the poor guy (who was sitting right beside her as she told me all this) and was horrified that it was women who had themselves been through the trauma of cancer who were vilifying him. I wish I'd had a chance to validate the poor guy but they got called into the doctor's office just as I was opening my mouth to say something. On another note, I just wanted to say that I fully understand your grief. Three years is a very short space of time to come to terms with your loss. My mother died thirty years ago and I still get choked up when I eat cheesecake. That was our special ritual...go shopping and then have tea with a slice of cheesecake. I still miss her and wish every day I could pick up the phone and hear her voice. It doesn't mean I haven't coped with her death or "moved on", it very simply means I miss her....and I always will.

At my sixth month check up with my surgeon, where I asked for a referral for delayed reconstruction, she became angry and verbally abusive after I bought information from a different medical center on a new reconstruction surgery that could heal lymphedema, hoping this center knew of this advancement. I apologized for bringing the article, and again told her I would like to pursue a Diep flap procedure citing problems with failure of implants at about 8 years. She flicked her finger at me telling me I wouldn’t have to worry about that. After wondering why it wouldn’t matter to me, I felt panic in my stomach. I said to her “You don’t think I will last 8 years!” She said “I meant you’re no young woman!” She tell abruptly walked out. A nurse came in, sat down, leaning close to me saying “I know you had breast cancer, but you have to get yourself together and move on”. Wow, here I was asking about reconstruction six months after a mastectomy, and being told I better forget about the life threatening cancer that could recur at any time in my future!

I hope I never have to see that doctor or nurse ever again, and I pray they never treat another breast cancer patient that way no matter her age. By the way, I was 68 years old.