Do you say you HAD cancer or you HAVE cancer ???

[BrownBagger]

we don't need things all sugarcoating and made to look all rosy

I think some people do, which is fine. It's a very emotionally complicated issue, and I respect everyone's need for the kind of support that works best for them. And I agree, it's inappropriate to try to cram one's own version of "reality" down the throat of someone who may benefit better (or need) another approach, despite how strongly you may feel about it.

That said, I think people on this site are generally very respectful of others (most of the time), but it's easy to misread someone's intentions or miss their point when our perceptions are clouded by emotion. I guess I try to give everyone the benefit of the doubt and assume they're just trying to be helpful, even if I don't always understand or appreciate their comment or point of view. It's the follow-up exchanges that really tell the tale. If someone rubs me the wrong way or otherwise pisses me off with their attitude or approach, I just try to steer clear of encounters with them in the future and create my own comfort zone.

The last thing I'd ever want to do here is upset someone or make someone feel bad. Plenty of other places to do that, if one were so inclined. We're all in the same leaky lifeboat, after all. Everyone should help bail it out.

[TheBurn]

On the original question, I'm not even sure what I say or if I always say the same thing. For the people who know me and ask how things are I can tell them that I was NED again on my second post-treatment scans in March. At work, it's similar but I have a habit of down-playing my status because I really took advantage of my diagnosis last year and worked reduced hours at full pay, and need them to believe that I can continue to work full-time now (which is 50-60 hours/week). It is hard though as I still experience fatigue/lack of stamina and am certainly not starting at the same baseline as everyone else. (I sleep a lot on the weekend.)

I do recall telling someone recently that I was a cancer survivor - but only because she trains service and alert dogs and we were adopting one and for some reason it seemed relevant.

My GF probably says "had" because she's never liked to dwell on the possibility of recurrence.

Personally, I think I'm uncomfortable with the word "have" because of NED status and no treatment, just tri-annual scans and bloodwork. And I don't feel that there's any cancer present in my body. But that's just my take.

[waw4]

Ha ha. I found Jenny's post to be darkly ironic and funny as it was so unexpected by me. You know, we're reading posts in a support group and you turn the page and the next post says "we're all going to die!". It was so far beyond pessimistic it struck me as funny. I must have a strange sense of humor!

For myself, as a stage 3 (afaik), I say "had", because afaik I don't have cancer. I might be wrong, but no more than thousands of people who are skipping their colonoscopies and answer the insurance question "do you have or have you had cancer?" by answering "no".

Similarly, if you asked me today if I had melanoma, or a brain tumor I would say "no", because afaik I don't have either. Of course, it might turn out I was wrong! (hope not!)

[BrownBagger]

"we're all going to die!"

Last time I checked.....

[oaks1]

Jenny I do hope my husband will be cured , yes .... BUT I'm well aware that he may not be and well aware that cancer can come back in all stages of cancer but also well aware that many people do go on to be cured / remission / ned or whatever term you want to use , i don't belive that most stage 2/3 will reoccur ??? Some will yes of course , but stage 2/3 who recurr are in the minority not the majority , when I joined this thread i was desperate for stories of hope , I was so desperate I went right back to the beginning when this website started and message people asking if they could offer hope ? Where they still ned ? Could they give me succsess stories ? What were the chances of realistically beating this ?? You know what ??? I'd say 80 percent of the people that got back to me where still in remission since surgery , many had gone 5/8/10 years and beyond , yes of course there was the odd one here and there that had the cancer return but by far the majority were still in remission , I still have all the messages, the people specifically say they do not visit the site often now as the cancer was something that was in the past and not something they thought about 24/7 so didn't feel the need to frequently visit the site , I know I cannot compare my husbands case to anyone else's and that we are all individual , I do not need that pointing out to me , I come to the site to ask questions / advice / offer support where I can to others and catch up with how everyone is doing , that is all , there's no ulterior motive or me asking any of you for a definitive answer that my husband is going to be Cured , I can see this thread opening up another can of worms , we all have our own thoughts and opinions and we are all entitled to our own thoughts and opinions on here , but things can get way out of hand .

This is by far the best information I have seen. I am relatively new and a "supposed" stage 1 which I feel will be determined by time. I too had read some of the old posts on this forum and wondered what happened to these people. It is fantastic to know that some of us do survive and live happily ever after. It seems that every forum has the doom and gloom people on it. some are actually mean and sarcastic in their tone but that may just be the way they are. Thanks for this post I find it very interesting.

[Mys]

I could never say "I had cancer" at stage 3, because from reading posts here it seem to recur more often than not. i don't believe the 70% 5 year cancer free stats. That was based on only a few studies, most noteably the Mosaic which combined stages 2 and 3 together.

Hi Jenny, just wanted to correct your quote about the Mosaic trial. It did not combine stages 2 and 3 together, the results are reported seperately for stage 2 and stage 3. This is the results for 5-year disease-free survival, in case you are interested (the full text-article is available for free on the internet, just google it). You can see that for stage 3, the number is 66.4 percent for the FOLFOX group. For stage 2, 83.7 %. What is not reported is the numbers for subgroups within each stage (3a vs 3b vs 3C). The recurrence risk is obviously higher for a stage 3C, as other studies have shown. The Mosaic trial is a huge one, with over 2000 patients included. You don´t need many studies to have "good stats", you need one good large study with many participants included. And in this case other studies have confirmed the main findings.

Five-Year DFS in Stage III and Stage II
Among patients with stage III disease, the probabilities of DFS events at 5 years were 66.4% and 58.9% in the FOLFOX4 and LV5FU2 groups, respectively (HR = 0.78; 95% CI, 0.65 to 0.93; P = .005; Fig 4B). Among stage II patients, the probabilities of DFS events at 5 years were 83.7% and 79.9% in the FOLFOX4 and LV5FU2 groups, respectively (HR = 0.84; 95% CI, 0.62 to 1.14; P = .258; Fig 4B). In an exploratory analysis, the probabilities of DFS at 5 years in high-risk stage II patients were 82.3% and 74.6% in the FOLFOX4 and LV5FU2 groups, respectively (HR = 0.72; 95% CI, 0.50 to 1.02).

When you read posts here it seems it recurs more, yes, support groups tend to be self selective to people who need support and information.

[Bill5107]

Aw rats! Although I did wonder about this topic over last summer from time to time, I wasn't honestly NED long enough to form a solid opinion myself. But I did have some thoughts about it at the time.

I really like the idea of taking the lead from the patient. As a patient I'd go with my comfort level of whether or not I consider myself cured yet or not. . . so I would guess I'd say have until 5 years NED or some other possibly artificial milestone at which point the nekked happy dance comes in for the transition from "have" to "had", no?

~(_|_)~ <-- My nekked happy dance smiley

So as stage 3 recurrent, I've had to re-think when I might want to break out this particular happy dance. . . I'll admit I'm still adjusting my expectations and milestones. . .

Cheers everyone!

[esk2poo]

Bill old man,
With that hip of yours, make sure there are some things swinging and not the hip when you do your dance. Or just load up on the Percs before hand.
Thanks for the laugh.
Allen

[shmurciakova]

HAD!

[Jimswife]

That's brill !!!! Have you been ned since 04 from stage 4 ??? Just goes to show to the people who say stage 4 isn't curable .... WRONG .... Ok maybe in some cases / the majority of cases it isn't but I'm connecting with more and more stage 4rs that have beaten it , ok maybe not beaten as I guess none of us know what's round thd corner cancer or no cancer but there's quite a few I know now who are way past the 5 yr mark and have been ned all that time . Never give up hope and never let people bring you down and tell you there is no hope when clearly there is .

[Sophy]

Interesting question.

I usually tell people that I 'had cancer treatment last year' which usually satisfies them. If they then ask whether the treatment cured me or if I still have cancer I say I don't know for certain but my surgeon says that there is a 25% chance I still have it and it will grow into a recurrence and a 75% chance that I don't have any bowel cancer left and I'll be fine. That seems to be as much information as anyone ever wants to know.

In my own mind I feel I still 'have' cancer because of the side-effects of treatment still affecting my life. As they fade then I'll probably say I 'had' cancer if I get to 5 years NED.

[Annaleisa]

Knock on wood....I say "had". Going on 5 years NED.

[Jimswife]

Brilliant , another stage 4r aswell ned for 5 yrs or more