What to say/ NOT to say to someone diagnosed with a recurrence

KBeee

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 10^th 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……

1. Success stories from people who've dealt with this
2. Supportive statements
3. Encouragement
4. Understanding of their anger/frustration/sadness
5. Beneficial tidbits from experience
6. Suggestions for multiple opinions, etc.
7. Encouragement on how to move forward (not look back)
8. A listening ear
9. 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.

wrenn

Thank you so much for this KBeee, It is very useful information. I was stunned and sad when you had your recurrence. I am so sorry people have said such hurtful things to you and others. I believe your post here will really help. xo

Spookiesmom

Timely thread. Had biopsy last week, it’s back. So far, no negativity, hope it stays that way. It’s been more truly curious questions. Like what, if any chemo. I don’t know yet. Will you have rads again. No. I can handle that. Hope that’s all there is

KBeee

I really do not think people intend to be hurtful. Just like a lot of the things people to say to us when we are first diagnosed that we can't imagine people would say. The intents are often good, things do not always come out right. In this case, I sometimes think that people are shocked, and they are fearful of recurrence as we all are. In their attempt to squash their own fear, they tried to figure things out that the other person did or didn't do that were different than their own treatment course. It is human nature. They think that will protect them. Unfortunately though, it can be perceived as a victim blaming on the receiving end of it even when that is not the intent. That is why I figured I would finally mention it.

Wrenn, I hope you're doing well!!! It's good to hear from you!!!!!!!!!!!!

KBeee

Spookiesmom, I am so sorry to hear you are dealing with this again. Breast cancer just sucks. PM me anytime. Anytime

wrenn

I'm well KBeee. Thank you.

Just yesterday I was out with my sister and mentioned that I felt lucky that my cancer hasn't come back when many have and she said "It's been 5 years. You're cured". She said it in a snarky way as if I was trying to get attention for having cancer or something. I told her it wasn't cured but that I hope it will stay away. She said with authority "If it's been 5 years you are cured". I changed the subject.

ShetlandPony

Brava, KBeee!

Beesie

Excellent, KBeee!

CaliKelly

Such great advice Kbee, Not only for our dear friends here who have recurrences, but also for first diagnosis! I always try to only be positive, and my worst fear is I might hurt someone with my own ignorance. So I always want to offer hopeful comments, but then, without the pressure of making someone feel like they have to respond with positivity, if they're not feeling it. I so remember an acquaintance, a scientist, who would corner me at the gym, while I was having chemo, I'm bald, scrawny, sick, ( but still at the gym😄) and he's telling me chemo is unnecessary and harmful and I should take vitamins and go in a sauna! Oh, gee, if only he had told me that before! I wouldn't be bald! Not helpful! Don't ever tell people a treatment they've already done was harmful or unnecessary!!! What good do you think that does! Best wishes to all here!💜💜💗💗

beeline

Great post KBeee, thank you.

Rah2464

Yes, thank you KBeee. Wonderful to put this information out there.

Pollifax

Thank you Kbeee, I appreciate this so much right now. I went to what my MO said would be a biopsy today to only be told by the radiologist that there wasn't anything to biopsy after 2 weeks of preparing myself to face a recurrence. I came out of the suite so angry/frustrated. My MO is out of office until Monday so I don't know what next steps will be. I actually haven't shared the possibility of recurrence with anyone because I knew I'd get a bunch of comments like those you mentioned and didn't feel up to fielding them. I'm doubly glad now. It is scarier this time and I am already doubting everything so extra voices chiming in really wouldn't help.

farmerlucy

Spookiesmom - I’m so sorry you are facing this again. Gentle hug to you.

KBeee

Pollifax, I am so sorry you are in the horrible period of uncertainty. That is excrutiating!!! Hoping you get answers soon, and sure hoping all is benign!

AMP47

Karen - good post. In reference to on comment my onco did not recommend, when ask, 5 more years. Would that have prevented my innocuous tumor - who knows.

I was saddened with the careless remarks I read.

Jojobird

OMG Karen, that is so incredibly spot on. I want to shout a giant "hallelujah" to everything you so eloquently - and righteously - said. The initial diagnosis was difficult enough, but the recurrence diagnosis has hit me really hard, and I'm struggling to come up from the depression.

Hope helps. Being kind to myself helps. Giving myself both alone time and time with positive friends helps. I'm so very lucky to work with compassionate, kind people. But with a recurrence, my emotional resilience has been really depleted. I'm tired. Cancer has come back and my husband and daughter are scared. Grief is live fish in our aquarium, and we pass it daily.

We're working our way through. I have to remind myself that struggle isn't failure. Struggle is growth. The only way out is through. It's terrifying and difficult, but I'm so grateful for these boards, for the truth-telling sisterhood that is here. Love and courage out to you all.

XO

Jojo

Salamandra

For the most part, even our own doctors will not comment on what might have 'caused' cancer or recurrence. Partly because it's not at all helpful, and partly because they have enough expertise to realize that it's not actually possible to know! It's infuriating that laypeople feel entitled to dole out these opinions. Or even to *ask* about prior lifestyle/treatment.

I wish your excellent post weren't necessary but it is and I wish it could be disseminated far and wide!

KBeee

So correct in the comments that no one can know why we recurred.

Jojo, the second time around was much more challenging mentally for me too... hard to let my “guard down” when I know I need to try to

buttonsmachine

Thank you for this excellent post, KBeee.

I have experienced this too. I think it's human nature to want to find an explanation for the bad things that happen. I also think some of our fellow survivors are looking for reassurance, and looking for reasons to believe a recurrence won't happen to them.

However, it's not kind to assume we know the reasons for someone else's recurrence. It's also completely speculative that things could have gone differently. The truth is that we can do all the "right" things, and our cancer can still come back anyway. Just how we can do all the "right" things, and still get breast cancer in the first place.

You know how you felt when you were first diagnosed with BC, and someone told you that "if you had/hadn't done ______ you never would have gotten cancer?" Well that's how this is when you have a recurrence, only it's coming from fellow survivors.

We should support each other, not make judgements about things we have no possible way of knowing. That's all.

Meow13

At this point, I feel like it is just plain bad luck! We do the best we can to move on.

wrenn

I have/had many of the so called "causes" of recurrence. I am obese, inert (sit in recliner much of the day), eat sugar, social isolation, trauma before diagnosis (child killed, husband cheating)

Because my cancer was aggressive my onc wanted to start chemo no later than 4 weeks after surgery but because of complications from BMX it was just over 90 days. The first dose caused diverticulitis and my onc cancelled treatment saying "I don't want to kill you". Because i had triple negative, metaplastic, grade 3 I figured that was it. I asked "now what?" and he said "Maybe a low fat diet?"

I am still cancer free almost 6 years later.

KBeee and I were diagnosed around the same time. She was fit and living a good life. Side bar...she was also helpful to all of us starting out way back when too. So all of the so called rules were out the window. I think it is such a waste of energy to try to figure out why it comes back or doesn't. The crap shoot theory seems to be the most valid.

I do understand well meaning people trying to help. I was one of those before Dx and cringe now so that is why a thread like this is so helpful.

wanderweg

Indeed. I find, “I'm so sorry, that's really hard - how are you doing?" works in nearly every situation.

KBeee

wrenn, you've been through so much; I cannot even fathom. you were one of the first people I came across on here and have been such a big support and blessing to me. In case I haven't ever said it, I appreciate you so much!

Wanderweg, Such a simple but powerful statement.

wrenn

Thanks so much KBeee, My 'stuff' happened a long time ago and I am fine...blessed really. But I wanted to point out that all of the things we are told cause cancer or recurrence is BS. :-)

I think we were all shell shocked back in August 2013 when we arrived here and I can't imagine how hard it would have been for any of us without the support of the group. Even though I am not dealing with cancer I keep coming back here because of people like you. xo

Mavericksmom

2003- diagnosed with IDC 1 cm grade 1, treated with lumpectomy, re-excision, chemo-4 rounds of A/c, radiation (severely burned, jellybean size blisters on top, skin sloughed off bottom of breast) * refused Tamoxifen

Thought I was cured! Truly believed I would never get this again!

Dec 2018- diagnosed with ILC, 1.3cm grade 2 same breast. Literally went into shock when I received the call at work! *Not found on mammogram! I felt pain and soreness and had a diagnostic mammogram and an ultrasound on that breast. Cancer found on ultrasound at the very spot I had the discomfort!

I don't know why people would say things that were said to you, no one was anything but supportive to me, I feel very fortunate.

This time I had mastectomy with DIEP reconstruction, OncotypeDX 21, post menopausal so no chemo. Refused Aromatase Inhibitor and really don't care what anyone else thinks of my decision because:

1) I saw a wonderful medical oncologist.

2) I listened to what she had to say.

3) I read the literature she gave me, researched on line (read more actual studies than I can count, because I worked in research for 7 years long ago, and know how to find and understand the reports). I also read what women on this message board and elsewhere experienced on AI's.

4). MOST importantly, I took all that I learned and applied it to ME, my life, my needs, my beliefs and perhaps most importantly, my health. Breast cancer isn't my biggest health concern. I asked myself “can I live with the consequences of my decision?" I can!

I know first hand I will never be cured of cancer no matter what I do, but quality of life is far more important to me than quantity!

Could of, would of, should of.....DON’T GO THERE! We are where we are, we must move foreward

Spookiesmom

I’ve been in 3 dr offices this week. 2 for regular check ups. All their scales agreed, I’ve somehow lost 5#. I said that to an ARNP, who was an oncology surgical nurse up north.

She says, it’s probably the cancer.

WTF????????

Of all the things she could have said.........An oncology nurse........... DUMB

Beesie

Spookiesmom, maybe the nurse meant the stress caused by the cancer.

When I get a shock, my weight almost immediately drops 3-4 pounds. And if I am going through a very stressful period, same thing. Once I calm down, the weight goes back up. Wierd, but it happens all the time.

Meow13

Me too.

PurpleCat

I'm glad you said this, Kbeee, and am also grateful for your understanding of the "human nature" side of things. In a different thread I once commented that when I see from someone's signature that they've had a recurrence, my first inclination is to study the details of their first diagnosis to find out how their details or treatment were different from mine so that I can feel reassured it won't happen to me. I realized afterwards that this could be taken as victim-blaming, but by then the conversation had moved on so I didn't go back to it.

Sadly, I'm having an opportunity to practice your advice, because of two of my dear friends who had BC in the past and were the most amazing and supportive to me this past fall, not to mention being my reassuring examples of long-term survivors, have been diagnosed with recurrences within the past month. The coincidence has left me speechless and staggering. Both of them have told me, almost in a confessional way, that they had chosen to forgo the hormone therapy on the first round, either completely or for the full five years, but that they were having side effects they couldn't live with. It sounds like they're both preparing to take it again but are really dreading it. I told them things like "There's a whole clinic at the treatment center for managing side effects now" and "No one knows why this happens; even with hormone therapy it sometimes comes back" and "There are more treatment options now than the first time you had this." I would be horrified if anything I said made them feel blamed for their recurrences, especially if they are now second-guessing their own long-ago decisions. At the same time, their news has made me pretty determined to ride out the side effects and continue with my own tamoxifen.

It is 1000% true that what both of them are going through is NOT about me. It's also been very difficult emotionally to wait with them through the callbacks and biopsies and initial reports and now the setting of appointments and surgery dates and more waiting and decisions about hormone treatment when I'm so recently through it myself and still adjusting to my own prescription. As I said to another friend, it's made me a little flashbacky, besides taking away some of my anecdotal reasons for confidence that this would be a one-and-done experience for me. In this state of mind, it's not easy to find just the right words to say, and the best I can hope is that they will forgive my foot-in-mouth moments.

And I'll reiterate what Kbeee said at the beginning of this thread: I am sorry if I have offended anyone, here or elsewhere, because that is definitely not my intent!

KBeee

I know no one ever intends to offend; it is human nature to look at the signature lines and wonder what's different, etc. I am sure I said some really dumb (though well intended) things to people before diagnosis, and also some well intended comments to people who had recurrences and/or progression that could be misconstrued. I get it now that I'm on the other side, but I didn't think about it before, which is why I posted it. I never missed a dose of hormonal therapy, am thin, exercise daily, eat healthy, etc. and I still had a recurrence, so your friends who are beating themselves up about stopping.....it could easily have happened anyway. I have a high risk profession...but I still work there because I love what I do and that's important. I know some people judge me for that, but all we can do is make the best decision for ourselves at the time and move forward. Quality of life matters a lot.

SuQu31

I’ve thought about this so much, because I often put my foot in my mouth. I definitely think it is human nature to cherry-pick circumstances different from our own and “decide” that what happened to one person won’t happen to us. A bad thing said to me (on initial diagnosis) was, “Do you think it’s because you didn’t have children; isn’t that a risk factor?” For me, not having a baby was a choice, but for so many, it is not. Women who have struggled with infertility and have endured tremendous emotional pain because of it do NOT need to have someone introduce the thought that this inability to have a baby also may have contributed to having breast cancer.