Prior to our original diagnosis, we all probably said things, that now we wish we could take back...because being on the "other side", we know those statements weren't so helpful.
Because I saw it on a recent post, and have seen it on other threads, I am going to comment on what to say and not say when someone has a recurrence. This is not relating just to what's in a recent thread, but it relates to what I've seen in a few others, what I've seen in Facebook groups, and what was said to me on a thread here a while back that was pretty cruel, and also to the many things local folks have said (mostly well intended...but not always helpful). I apologize if this offends anyone, but I have received many private messages about it over the past couple of years, and the topic has not really been addressed…so here goes…
There is a huge difference between making suggestions about someone's current care (encouraging them to seek multiple opinions, noting standards of care, etc) and questioning their previous care. Dealing with a recurrence is hard. Imagine what you felt like mentally when first diagnosed. Now magnify it to the 10th power. That's how a recurrence feels. The other shoe has dropped. It shattered and now you have to assemble the pieces. You question every treatment, everything you ate, every decision you made. When someone else questions those decisions and points out what they think you and/or your doctor did wrong, it does not help. It makes it much worse because you doubt your decisions even more. You wonder if you can trust your doctor...any doctor. You wonder if you can trust your ability to make decisions with that doctor…or other doctors. And you CANNOT change any past decisions. No one can. It is basically victim blaming, though I know it is not the intent, and mostly people are curious as to reasons people did/did not do various treatments. It is still very hurtful, and it pained me looking back at a recent post about how the gal blamed herself when defending her prior decisions because so many asked about them. It's usually best to not bring up prior treatments unless the person bring them up him/herself. In my opinion…
What NOT say to someone who has a recurrence (or progression or a new primary)…
You are hormone positive, I see you…stopped tamoxifen….did not take hormonal therapy….did 5 years of the AI (did they not suggest 10 to you)…did not have your ovaries out…skipped chemo despite your oncotype…… why?
You did anti-hormone therapy? You know that is actually feeding your cancer, right?
You did a mastectomy? Why? They would have done mammograms and found the lump if you just had a lumpectomy.
You had a lumpectomy and skipped radiation? Did they not tell you how your rate of recurrence would increase?
You had radiation? I bet that's responsible for the lung cancer.
You had triple negative and opted out of chemo? But that is the standard of care.
You did not do chemo and you are HER2 positive? Why?
You opted for alternative therapies for your cancer?
You waited 3 weeks after you found your lump? Surely that caused it to spread.
You did chemo for your small ER+ cancer? I read an article recently, and the chemo is probably why you had your recurrence.
I could go on, but I will not.Those are all things I have read and/or heard. I've chatted with many gals here on PM because curious and often well intended statements were taken to heart and they are blaming themselves. I know how hurtful it was when I was told by someone here my recurrence was my fault because I did chemo (by someone who knows nothing about my medical history and family history, and nothing about my cancer besides what's in my signature area). There is always more to the story than we know and multiple factors going into treatment plans and people's decisions including age, health history, personal beliefs, etc. Even though recurrences are scary to read about and you wonder if theirs is because of how they were/weren't treated, resist the urge to find out differences to quell your own fear.
Here are some things that are beneficial to people dealing with a recurrence……
- Success stories from people who've dealt with this
- Supportive statements
- Understanding of their anger/frustration/sadness
- Beneficial tidbits from experience
- Suggestions for multiple opinions, etc.
- Encouragement on how to move forward (not look back)
- A listening ear
- Reference to helpful threads/forums on here or groups that could be beneficial to them
Please be respectful of people's prior decisions.They may or may not have regrets, and either way, they do not need these hashed out again here. This place is where they need support, kindness, and suggestions to help them moving forward.
Other suggestions for what to say and not to say to people dealing with a recurrence are appreciated. Feel free to add them. My apologies if I have offended anyone, That is NOT my intent.
8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC)
8/26/2013 Mastectomy: Left, Right
9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
1/23/2014 Reconstruction (left); Reconstruction (right)
1/29/2015 Lumpectomy: Right
2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH)
2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC)
2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal
3/31/2015 AC + T (Taxol)
8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall
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