"Remission"

Jorf

So I went for my yearly physical yesterday and was greeted with a 3rd year medical student. That's fine. Been there, done that. She did a pretty good job and had some questions about my cancer that I answered and whipped off my dress and bra to show her my implant. (Totally flustered them - the doc and the student that I did that!)

Anyway, when she (the student) presented me to Kate (the doc) she said something about me being "in remission". I really bristled at that. I hate that term! It so implies that the cancer will come back. At this point I think of myself as cancer free and, according to Adjuvant! have the same risk of recurrence that anyone else has for breast cancer period (1/8). There was a part of me that wanted to say that to her - as a teaching moment. But I'd already been there an hour and didn't want to get going with it.

Anyway, just wanted to share.

The worst part is that I now have to get my cholesterol checked and I know it'll be high b/c it always has been. Hoping maybe the tamoxifen is helping some.... Also getting due for my next DXA. That reminds me that I want to get my doc to put a bone turnover marker on my lab slip....

Jorf

Sandra1957

I also don't like that term. I would've bristled also.

Fitztwins

Yeah, I have had several people ask me if I was in Remission. I hate the word too. Hell I hate it all. "Did they get it all", "are you cured". I like NED the Best.

Poppy

I'm with Fitz. I like NED but no one but us seems to know what that means! Unfortunately we don't ever know if we're "cured" or "in remission." Sucks.
Hugs
Erica

gsg

i hate that word "remission" and, I don't know why, i always think of it only in terms of leukemia.....not us.

in my mind, my breast cancer is gone for good....unless it comes back. if that makes any sense.

Bugs

Yep, to me remission means "sleeping" and will wake up at any moment. I prefer NED also. GSG- like that "gone for good unless it comes back". I am going to use that next time I get asked.

Take care,
Bugs

Anonymous

At my cancer center, everyone always says "finished treatment" and I'm okay with that. With "civilians" I don't say NED because they have no idea what that means, so I say that as far as I know, I'm cancer-free for now. I too think of remission as a temporary state with the implication that it's expected to come back.

I love gsg's take...yes, gone....unless it comes back. Makes perfect sense to me!

Marin

Toronto

Yeah, remission is like "recess" you know it's going to end. I much prefer gone for good unless it comes back.

lvtwoqlt

MKE, I like your explanation of remission, I want mine gone for good!

Sheila

NoH8

My understanding is that "remission" is used for some types of cancer, but not breast cancer, that our oncologists use the term NED. At least that's what my oncologist told me.
Unlike you, I would prefer the term remission because to me No Evidence of Disease means it's there, we just can't see it yet. Six of one, half dozen of another I guess, to each her own.
I was stage 1b and while I know that the odds are in my favor almnost 6 years out that my cancer won't return, I see my chances of recurrence as greater than the average woman who hasn't had breast cancer, because metastisis would mean a worse outcome than a new cancer would.

Karenfrew

I am with all of you! i am a one year cancer survivor and I am cancer free as far as I know. Maybe that will change, I hope to hell not but I am NED not "in remission"

Kathy from VT

Harley44

Yes, when I had my surgery, a bi-lateral mast., for reconstruction sake, my MIL asked my surgeon, "did you get it all?" I HATE THAT!!! Also, he took BOTH my breasts, so DUH!, YES, he got it ALL!

Definitely not "in remission"... IT'S GONE FOR GOOD!

HARLEY

LizM

I never have considered myself in remission. I think of remission as there is no evidence of disease now but a strong likelihood it will return. For early breast cancer I think we can hope we are cured with the realization that we have a low to moderate risk of it coming back. I just say so far so good and leave it at that.

rosieS

I hate the word "remission" also.

At my last 6 month checkup, my onc actually said, in reference to my elevated cholesterol, "I would hate to have you 'cured' of breast cancer only to die from heart disease!" Well that actually made me feel good because it implies that he thinks I can be cured (even though I was stage 3 with 9 positive nodes--will be three years since dx in November!)

Member_of_the_Club

Like most people i was only familiar with the word remission before I got cancer, then I started reading about the NED thing. So I cut people slack because it isn't a term that has gotten out there. For many cancers they still use remission. A friend of mine who had a blood cancer hadn't heard of the word NED, she is solidly and blessedly in remission.

The thing that I don't like about remission is that it is generally coupled with the idea that at 5 years we get the all clear. Very few people who haven't had bc seem to understand that our risk of recurrence lasts a lifetime.

NoH8

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The thing that I don't like about remission is that it is generally coupled with the idea that at 5 years we get the all clear. Very few people who haven't had bc seem to understand that our risk of recurrence lasts a lifetime.

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I totally agree with you on this one. I've known people who's cancer came back after 10 years, 1 after 20.

sam52

Yes, I hate that term 'remission', too. My onc even wrote a letter to my GP once stating I was 'currently in remission'....grrr, that sounds even more temporary.
I also use the phrase 'so far,so good' when people ask me -however, as I have passed the 5 year mark, they often just assume that I am 'cured'.....I do put them straight because I want them to appreciate that we have to live with the fear of recurrence forever.

Incidentally, out of interest, do any of you have any information on late recurrences (I guess I mean mets) and cancer grade? A bc oncologist friend seemed to imply to me that the higher grade tumors tended to recur more frequently in the first couple of years after dx, and then were less likely to recur after 5 years.I would be grateful if anyone had any input into this.

Sam

LizM

I have read that the risk of recurrence is greater in the first two to three years for triple negative which tend to be more aggressive and at the 5 yr mark triple negative evens out with hormone positive breast cancer as to likelihood of recurrence. The Femara pamplet says that 1/3 of hormone receptor positive breast cancers recurrences will happen after 5 years.

NoH8

I think the only stats that really matter are the stats that happen to me, because we can fall anywhere on the stats. We can be the 1% or we can be in the 99%.
My breast surgeon told me he was 100% sure I didn't have cancer-- which was obviously wrong. I knew someone who's oncologist told her upon dx that people with her cancer are 92% likely to still be alive 5 years from dx and she was dead in 3. I knew someone else who had dcis and was told her cancer wouldn't return and she was dead in 2. I also know people who were told they'd likely only live a year who are still alive.

Anonymous

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I hate the word "remission" also.

At my last 6 month checkup, my onc actually said, in reference to my elevated cholesterol, "I would hate to have you 'cured' of breast cancer only to die from heart disease!" Well that actually made me feel good because it implies that he thinks I can be cured (even though I was stage 3 with 9 positive nodes--will be three years since dx in November!)

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Aw, Rosie, I know that made you feel really good.

I don't know what stage I was prior to my surgery. My onc said he didn't like staging bc. I really think he was being protective because my tumor was 4.5 cm. After neoadjuvant chemo it shrunk to about half and I still had five positive nodes. My path report AFTER mast said I was stage 2b.

The last time I saw my "little" onc (he moved WHAAAA!), he said something like your onc said about curing me and was sorry he wouldn't be here for my ten year anniversary of bc.

We need to hear the truth, but we also need a little encouraging as well.

I'm not asking my "now" onc any questions about survival. I'm just going to take it day by day. I don't need to know the stats. I don't WANT to know the stats. I'm NOT READING the stats. I'm gonna stick my head in the sand where it belongs.
Shirley

Anonymous

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I think the only stats that really matter are the stats that happen to me, because we can fall anywhere on the stats. We can be the 1% or we can be in the 99%.

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I agree with you, Amy.

There are some women who have been stage 1 that went straight to stage 4.

There isn't really a gosh darn thing we can do about what's going to happen tomorrow, next week, next month, or next year. So, as I've already said, I'm just sticking my head in the sand and gonna live from day to day.
Shirley

GlennaG

I moved to a new town and went to see a new onc. I am 8 years from dx. I was really surprized when the onc said I was considered cured and that it would be rare if my cancer came back. I was happy to hear him say that but I didn't believe it since I have always thought it could come back at any time. When I called later to ask about some pains I was having they told me to consult with my regular doc. I did that and she just passed my pains off as arthritis, bursitis etc. It can be very confusing....

Jorf

I'm totally into the gone forever unless it comes back thing!

I don't like NED for two reasons - it seems like a fancy term for "we're just waiting for it to rear it's ugly head" and because some woman who wrote a book a couple of years ago about passing for a man called herself "Ned" as a man. I didn't like the book much.

I guess that's as good a reason as any for not liking a term that has to do with possible recurrence of cancer (I can't even spell recurrence - always spell it with an "a" and so a red line appears under it. See -- it's bad, bad, bad, bad!)

Have a great week, friends!