How do you describe your illness?

[Heather]

When I'm talking with someone who doesn't know the whole story about my tumors, I get caught up on what to say. Do I call it cancer? Do I call it a very rare tumor that looks benign, but acts malignant so there's not really any difference between it and cancer, but we don't really know what to call it? It can get confusing. Not even my doctors know what to call it. I guess if I don't really feel up to explaining the whole confusing thing, I just say "cancer". I'm interested to know what everyone else says. What do you usually tell people about your tumors?

[Theresa]

I just wrote a response but not sure what happened, so I will write again. I really hate when I get asked about what happened to my foot, especially by strangers. If I know I will never see the person again I flat out lie and say I fell and broke my foot. I just hate saying the word tumor, I hate the dreadful look people give. If I feel like explaining, I usually say I had a benign bone tumor removed. I go into more detail if they ask more questions. I will mostly say it is a rare benign bone tumor. It is so true that not even Dr's understand this damn tumor so how can we explain it. I don't think I can ever use the word cancer, it is just too scary. And I have faith that one day I will have my old life back!

[caroline]

because my tumor is in my base of skull i come under the ear nose and throat surgeons who specialise in base of skull surgery. my consultant is very upbeat and calls it a locally agressive benign bone tumor,they dont see it as a cancer here in the uk altho they use radiotherapy (gamma knife ) as a follow up to surgery. i call it fred jr !! he was 'fred in my head ' last year but after my first surgery he has shrunk to 10%. hence the jr . its how i get by and keep positive tho i have wobbles now and again my next surgery is only 7 weeks away.mostly i explain it to others much like theresa above.

good luck to everyone dealing with this pesky little invader

caroline

[Quinton]

It depends on my audience. I definitely struggle with this on an ongoing basis as well though. At first, the topic was so close to the surface of my thoughts, if anyone asked me "How's it going?" I'd delve into a laundry list of physical and emotional sensations pertaining to my tumors. After this left me feeling too exposed, I went the other way and did like Theresa and just either avoided the topic altogether, or lied. "I feel great," or "Just some back surgery" or "some medical issues I'm working around right now."

With these less descriptive remarks I felt like I was keeping a good professional distance, so this is the stance I adopt for co-workers. However, it isn't fair to keep so aloof with co-workers who become friends. So even though it is a little uncomfortable talking to these people who are trying to build new friendships with me, I tell them a light-hearted, but not deeply emotional nor idiotically silly version of what's happening. If my judgment in character is close to the mark, they usually try to at least hide the horrified expression and laugh with me, but still offer any support or assistance they can give.

I say things like "I have cancer-lite" or "I'm on chemo lite". Lots of times I say, "My tumors straddle the definition between good and bad (benign and malignant), so it's kind of gray. But since the tumors are in a very threatening place, I just bravely lift my head up and squarely spit in the "a" and the "e" of the word "cancer", then serve it coldly in whatever conversation it happens to appear.

For me now, finding the fine line between denial--avoidance of the topic--and dwelling--completely being bogged down by thoughts of it, has been an ongoing project. The GCT Connect site is a wonderful way I feel for me to vent of lot of thoughts. For that, Heather, you are the best!

Sorry for such a long post.

[Alianna]

I felt the same way - especially when I was still on crutches (complete strangers will feel free to ask you so many questions when you have a crutch-needing injury!). in the beginning of shorts season, there was 'renewed interest' as well. I just say, "there was something wrong with my bone - they had to patch it up." then I change the topic. I think people are looking forward to commiserating over a sports-injury story or something. If they get too persistent, I smile brightly and say "actually - I had a bone tumor" and then go skipping on my way.

[Quinton]

I love it!

[Kara]

Heather,
I have the exact same problem as you. I never know what to say and/or how much to say. I can't figure out how to tell people about this illness and its seriousness without freaking them out. Depending on the situation, either personal or professional, I say different things. Sometimes I just say that I have back problems or a medical issue, other times I say that I have an aggressive benign tumor on my sacrum, and other times I explain further... i.e. a rare tumor that is technically benign, but not benign in nature. Frequently, I will conclude the conversation with statements like, "but I'm doing great." Up until today, I haven't been saying cancer b/c technically it isn't...and it seems strange to define it in that way. Thanks for bringing this up. nice to hear that others are faced with the same challenge. Thanks Heather for getting this conversation started.
Kara

[Angie]

Great discussion topic, Heather. It think you and I may have discussed before and I know James and I discussed over lunch a while back. It's interesting, as I have never considered myself to have cancer. I've talked to a couple of other GCT patients that call their tumor 'cancer' and it kinda freaks me out. I guess I like the idea that I can say my tumor is benign instead of calling it cancer. My doctor has never referred to it as a cancer either and I am thankful for that. I shutter to think of how I would have reacted and handled my situation if I had labeled it as such. But, even with the exclusion of the word cancer, there is still the struggle of explaining it.

I usually tell people the truth...I had a tumor in my knee...but it was benign. I've even said it 'wasn't cancer'. I think that making sure they know it's benign controls their reaction, or maybe it just helps me. I have lied before...well, let's say bent the truth (sounds better). I tried to say I had a shark incident, but living in Oklahoma doesn't support that story. I tried for a motorcycle accident, but I'm not the biker type. Anything I can come up with that half way supports my reason for a 3 foot scar, a limp and a 30 minute delay in any airport security. But I always fess up and tell people my 'bad knee' is due to a benign tumor, and I stress the adjective. I also stress that is it now gone...which then leads to the discussion of all my metal parts and the 'bionic woman' jokes.

I've been wearing shorts all summer, so my scar has prompted many questions from strangers. I don't mind them asking me what happened. I'd rather they ask then just stare. So I have a huge scar! Some people are frightened, some think it's cool, some pity me and some could care less. I think I worry more about explaining it than those that ask. Perhaps my focus on how I explain it is just me reiterating to myself that it was benign and making myself feel better.

Sheesh, it's like a 12 step program... Hi, my name is Angie, and I had a GCT! :) hee hee

[Kim]

Angie, Your comments sound like what I have said or go through. The 30min pat down and up in airport security! If they ask me one more time if I have gone through this before I think I could scream. I could do it for them! I have to say I tell people it was a tumor and that I had a total knee replacement and femur. Most say to me oh my grandma or grandfather just had both knees done and they are doing great, and they look at me... never sure what to say or how to explain, so most of the time just end it... Kim

[Angie]

Oh yes, the comparison to the grandparents knee replacement....I get that one a lot. Especially when I had very limited mobility...people would say, "well my grandma had a knee replacement and she was walking the same day, you just need to do it". Oh, if it were only that easy :)

[Quinton]

My physician told me that the steel and titanium he installed in my back would always set off airport metal detectors. I believed him until last week in Minneapolis when I was ushered through the security metal detector at the airport and did not set it off. Did I break their machine?

Usually a security person has to de-metal themselves and then drag me through since they won't let my guide dog or cane go through with me. This time, the lady remembered to take off her metal badge and then threw me past the threshold, following with her head tucked and, like she was bum rushing a line of scrimmage ors omething. At least that's the mental image I got. Those TSA employees are pretty hard core.

[caroline]

you just made me laugh because i have just been to miami and this has nothing to do with GCT or metal but the airport security. how do they manage to make u feel so guilty coming into the country, even although we were just coming for a holiday from the Uk i felt like a rambling idiot when they were questioning us at immigration and i think i was frisked 4 times( in places i didnt know u could be checked )I really do appreciate it is important but good job i have no metal in my skull ...... yet. !!!Anyway when they finally let us in Miami and palm beach were great and very very hot

[Sarah Gerstenkorn]

First off, I would just like to say how extremely happy I am to have found this group. I have been dealing with this type of tumor for the past ten years, never knowing someone else who had it until now so thank you for that. To get back to the question at hand, I usually just make it easy and say that I have cancer. When I was first diagnosed, my doctors just called it a benign tumor but once it spread, they said it was now considered cancer. It's a lot easier then telling the whole story.