How do you feel about this response???

I just say I'm fine and feeling great and change the subject asap.  I'm probably hoping if I say it often enough, I'll start believing it.

Nobody can understand what we go through unless they've been through it.  Only my Her2 sisters on these boards understand or care about the continued physical and emotional effects we put up with (love that instant menopause and complete absense of short term memory!!!!!).  What was I saying?......Oh yeah, even amoung BC survivors, I don't think the women with only DCIS can understand where we are at.  Just like I am sure I am clueless about what its like to have a recurrence.

Everyone wants to be happy for us, so I try to give them that. 

Breast cancer has been so common in my family on both sides over the years that I wasn't surprised to have it anymore than I would have been if I didn't.... Out of all of them, only one died of bc -- she was dx'd and tx'd in the 1950's when the cancers were bigger at time of dx, and cancer was not socially acceptable so people took longer to deal with it.

I feel just as awkward if I'd never had cancer myself when I am asking another person who has been through treatment how they are doing. I'm never really sure how to go about it.

AlaskaAngel

Hi,

Part of it is language I think. When people hear the word 'remission' they think of other cancers, such as leukemia and then they think that maybe your case is a stage IV. And so many people have no understanding of the disease. Most of my family members do not know the difference between a spleen and a liver. Assume they mean well....Just tell them that your Dr thinks you are going to be just fine.

And you are!

As for me, only 2 more Herceptin treatments!

-Helena.

mmm... we all understand!

I am a jokester by nature , so I joke about it with my clients a lot. I had more people to have to deal with at work than most. I have about 200-300  clients that have been with me for years... So.. they use the remission word.. I sad NED and explain... they say.... "when are you out of the woods".. I say " never"... I joke about dropping dead ... I joke about all this weight Ihave gained... I joke about a lot. I find it easier to deal with ALL THESE people this way. I was terrified about the exposure going into this. I own a busy Hair Salon in town and have for about 14 yrs now... so I KNEW everyone in town would know my story.. or at least what they "heard".. It took me about 6 months to deal with this part of the experience...

So...hang in there.....we are all here for ya!

I struggle with what to tell people too. I generally don't get asked whether I'm in remission, perhaps because I emphasized to everyone that it was found very early. I get asked something like "So it's all gone now?"

I don't think we are never cured. It is just that we never know that we are cured. Stage I after surgery, TCH chemo and rads it is probably all gone but there is the chance that some cells survived and it could recur.  And one only knows if it comes back and proves that it wasn't cured.

So they ask this and I want to give them the simple answer "Yes, it's all gone" but the precise engineer part of me (and it doesn't help that I'm often asked this in a technical setting where I am very much in that mode) tends to be more precise like "Well, there is a very small possibility that it isn't but I had a very strong treatment so it's probably all gone." But I need to learn to give the more definate answer because I don't want them to think of me as a ticking time bomb.

Since I've gone back to work, people have told me how fantastic it is that I 'beat cancer.'  I know they are trying to be supportive, but it gives me the heebie jeebies, or a feeling of dread since I know you can never say you've beaten cancer.  But I don't make a big deal about it, because I know they mean well.  It's easier to just move on, than to go into a long explanation about how my oncologist says it can come back anytime, even 20 years later.  I have a hard enough time dealing with that in my quiet moments, let alone seeing the look of dread cross a co-worker's face!  Bottom line: people think remission means cure because that's what they see on tv.  We know that it sometimes doesn't work out that way... but we live in hope.

mmm5, i think all the ladies give great responses.  Just goes to show we're all in the same boat now. One thing i wanted to share is that I think sometimes people say or ask the wrong thing because they're scared.  They may be scared it will happen to them, so they ask specific questions about you and your case so that they can try to figure out how to protect themselves.  It's absolutely wrong.  We didn't cause this to happen and couldn't have prevented it.  It is was it is- a mystery for most.

 Also, for some reason, people love bad news.. it's good talk or gossip i guess (you know who those people are) and it's probably best to say very little to them!

LittleFlower

I work in the health care field and I still hear those responses. most people jsut don't understand cancer because it is such a complex disease. they don't understand that bc has many different types/stages and tx's.

when someone asks me how I am doing I say 'so much better' and that I am 'in remission' and I say it with a smile. I don't say it's all gone because frankly I have no idea if there is a stray cell trying to take up home somewhere else in my body (and there always is that chance).  that is how I feel about myself...I feel good and am so happy tx is over....it has not shown it's ugly face again,  but I will always be on the lookout for it in case it does. 

I work for the court system and a constable called me and said he heard that I was sick and that his mother-in-law had bc and then it came back in her bones and then her brain and now she is dead.  I was shocked but managed to say to him "thanks for sharing".  Another male employee told me that he knew what I was going through because his sister died of bc( all this while he was holding my hand).  But the best was when we told my mother-in-law and she asked me if I wanted to be cremated or buried??????  People are morons and now that I have finished treatment, except for the herceptin which I will continue to receive until March, I have decided not to let these comments pass....I ask them why they cant share survivor stories with me and try and be encouraging.  Even my hairdresser, knowing how hard it was for me to give up the wig, told me that I looked old( my hair came in white) and she would fix it for me.  This was in front of 50 guests at my husbands surprise birthday party.  I told her I liked my hair and that it was comforting to me because I looked like my beautiful mother every time I looked in the mirror and it was like she was still with me. ( she died 18 years ago)

So it is not you....Just consider the source and know that we all support you and know that you have a long and fulfilling life ahead.

Deb

Great answer!  What did he have to say for himself then?