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when are you considered cancer free

disneyfan2008
Posts: 5248
Joined: Oct 2010

Post surgery? at follow up?

My dr never says anything other all your tests are good..

WHICH OF COURSE IS EXACTLY WHAT I WANT TO HEAR...

WHAT DO YOU all go by for cancerversay? date diagnosed, date of surgery, date of last treatment? or different to each person?

Denise

butterflylvr's picture
butterflylvr
Posts: 943
Joined: Apr 2011

Everyone will have their own opinions and none of them are wrong, but in my opinion nobody is ever "cancer free" remission or NED yes but never guaranteed the beast is completely gone. With that said I celebrate my Cancerversary on the date of my surgery, the day my cancer was removed from my body.

Hugs,
Lorrie

RE's picture
RE
Posts: 4606
Joined: Feb 2004

Hello Denise, it is my understanding from my onco that we can never say as bc survivors that we are cancer free, he always says I continue to be in remission which is a great thing! He uses the date of my last treatment as my start date for how long I have been in remission. Hope you continue to dance with NED for many, many, many more years!

Hugs,

RE

disneyfan2008
Posts: 5248
Joined: Oct 2010

Re: The date that stands out to me the most is MY LAST day of Radiation JUNE 28, 08....

and first day of tamoxifen...

I just past 4 yrs surgery this month...

so many misc dates...

MY MIND thinks of my last day of treatment..

Denise

ksf56's picture
ksf56
Posts: 203
Joined: Apr 2012

I'm wondering the same thing! It says on my chart "In remission" and I've had my first "survivorship" dr. visit. I'm trying to wrap my head around saying "I had breast cancer". I don't necessarily feel right saying "had" yet but I'm working on it. I think we're all trying to put it in our rearview mirror and it getting farther anf farther away. I'm thinking that that is how I want to look at it.

Karen

Christmas Girl's picture
Christmas Girl
Posts: 3629
Joined: Apr 2009

... can, indeed, be actually cured. Breast cancer, unfortunately, is not one of them. Remission or "no evidence of disease" (NED) is the best we can get with today's current medical technology.

Some years, I mark the anniversary of original diagnosis (July '03). Other years, the date of my first surgery (Aug. '03). And sometimes, the date of my last invasive treatment - first round (March '04). Not quite sure yet what to do with all those DX #2 dates... Maybe I'll just ignore 'em. Yeah, probably. Am kinda confused about it. If DX #2 had been a recurrence/mets - would probably feel like an extension of #1. But, it was a completely different type of BC. Hmmm...

Kind regards, Susan

RE's picture
RE
Posts: 4606
Joined: Feb 2004

Susan I totally agree, I have three cancer anniversary dates although two of them are very close (within 6 months of each other) they are considered the same cancer that spread. Then of course I have the cancer that happened 5 years ago that my onco said was a gentler kinder cancer, LOL as if there is such a thing. So onco says I have two NED dates, one I am 13 years NED from then the gentler one I am 5 years out from.

RE

DebbyM's picture
DebbyM
Posts: 3295
Joined: Oct 2009

As far as I know, no one is cured from cancer. I don't know if any doctor would ever use that exact word.

I think we are just in remission or stable or NED, and, I will take that!

Debby

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LoveBabyJesus
Posts: 1650
Joined: Jan 2011

I like to declare that I am OK. I think this is part of staying positive. Although it’s difficult sometimes not to think the worst, especially after the diagnosis. But I’m a woman of faith, as I’m sure many, if not all, on this forum are. My suggestion is to always declare that you are healthy. No one knows, but the power of the mind is great. And Believing that you’re OK will help the situation. It will allow you to live life. Just my thought.

I considered myself healthy the day of my surgery. I received chemo and rads after that, to make sure. (February, 2011)

Many people are walking around without knowing they have cancer. That’s scary too.

joannstar
Posts: 346
Joined: Nov 2010

the same question and he said that I should start counting as of the day of my last surgery. He also said that I will never be "cured" but can remain in remission. So I consider 8-19-10 as my cancercversary.
Hugs,
JoAnn

Lynn Smith
Posts: 1265
Joined: Mar 2011

I also feel we are never cancer free.We were dx, it is in remisson but that gene is in our body somewhere else. And also the breast cancer can come back. Several times my doctor told me it is important to take the tamoxfin.You are in remmision with breast cancer BUT you can get cancer somewhere else.I remember those words.

For the date dx it was 8-19-09.I found out I had breast cancer this date.

Then 9-2-09 lumpectomy surgery and 9-29-09 surgery with clear margins. Both of those surgeries 2 benign breast tumors were found. I think about all these dates.Even the day the mammogram caught it 7-2-09.Dates that I remember so well.

Lynn Smith

camul's picture
camul
Posts: 2003
Joined: Dec 2010

That I could be in remission or have Ned, but that unless there is a cure.... But I did consider myself cancer free for 8 1/2 years, which to me was when they did the tests and there was no cancer. So I don't think it matters what we call it, ned, cancer free, remission...

Margeaux
Posts: 75
Joined: Dec 2011

Denise:
Oncologist keeps stressing its NED, No Evidence of Disease. He counts from the date of the last active treatment, which for me was Herceptin on Nov. 17, 2010....and counting and counting.
M.

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I've never been told that I am cancer free, just that I am in remission. I don't know that those words "cancer free" are ever used, are they?

Minka's picture
Minka
Posts: 29
Joined: Jun 2011

My onco told me I'm cancer free. I don't agree, nor does my PCP. My Oncotype DX score was '0'.....but.....cancer is still in my body, and I'm taking good care of myself so I lessen the possiblity of it coming back.

disneyfan2008
Posts: 5248
Joined: Oct 2010

My doctors (2 different offices/ practices) have never said anything other then all tests GOOD...

Denise

Rague
Posts: 3255
Joined: Aug 2009

None of my Drs have ever used the very misleading term 'cancer free'. At this time there is no cure for BC so once it's raised it's ugly head in the body, No Evidence of Disease is the best we can hope for. Especially if nodes were involved. If someone asks how am I doing - I simply say 'Great' because I am.

I don't use the term 'cancerversary' as I see no reason to celebrate cancer. I prefer to use terms like "I was DX on date,", "Surgery was on date..", "Last rad was on date." I also do not say that I 'had' BC, I say "I'm IBC" because I am.

Just my opinions based on what my Drs have told me.

Susan

disneyfan2008
Posts: 5248
Joined: Oct 2010

thanks for all the replies..

I remember date of surgery, last radiation and start of tamoxifin and now to add to it..now (in few weeks a year) HYSTERECTOMY, due to tamoxifen...

surprisingly I do not remember date of diagnosis...perhaps since my dr called me and said NOT GOOD but not bad..DCIS..never said cancer...I hung up looked it up on line...first thing I SAW was cancer...

never told my then 16 old daughter..was going to wait until went to see surgeon but she saw notes scribbled and looked it up...called me all nervous...dang I left note on counter...

Denise

eihtak
Posts: 809
Joined: Oct 2011

My 80yr old father says that if you live long enough everyone will be diagnosed with some form of cancer, so does that mean that maybe laying dorment we all are born with it anyhow???? I am one of those people that celebrates life as much as healthfully possible, but rarely acknowledge an anniversary. I have no idea why, I just don't. I think largely for insurance reasons the NED...no EVIDENCE of disease term is used beacause that says that it could be there but they just don't see it. I am a little over 1yr post treatment for Anal cancer and the day they said NED on that is the day they diagnosed my Breast cancer....I guess God knows I don't do anniversaries!! I do like to dance and was even a dance major in college so don't mind the term dancing with NED....there will be spins, turns, leaps and some fancy footwork but all in all a good thing. I pray we all spend many many happy years on that dance floor! As always,all in my prayers.

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I guess I might be one of the few that really doesn't celebrate any date. I remember the exact day I got the horrible news, but, I don't actually celebrate it.

I don't consider myself cancer free, nor, have I been told that. But, it would be nice to hear!

Leeza

disneyfan2008
Posts: 5248
Joined: Oct 2010

I do not celebrate...I just mention to family like one year ago this and that or 4 yrs ago etc...

Denise

disneyfan2008
Posts: 5248
Joined: Oct 2010

I do not celebrate...I just mention to family like one year ago this and that or 4 yrs ago etc...

Denise

Margeaux
Posts: 75
Joined: Dec 2011

My oncologist stresses over and over no-body is ever cancer-free, but NED, No Evidence of Disease. He started counting from the last active treatment, which for me was Herceptin on Nov. 17, 2010, so that is my starting date.
M.

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

I wish my doctors would tell me that I am cancer free, but, they can't and won't. Either I hear that everything is the same or no new evidence has been found. I will take that and run! LOL

Mariannemm's picture
Mariannemm
Posts: 136
Joined: Apr 2010

never said. So one day I asked him when I was cancer free. He said the day you had both breasts removed and 17 lymph nodes removed your cancer was gone. I was a stage 3. I celebrate every major date that has to do with my cancer. The date of the dx, surgery, chemo beginning and ending, rads beginning and ending. I have to do that to remind myself how far I have come and to contiune to fight! I love a good party too! I celebrate by making a special dinner for my family, I don't make a big deal about it, I sit down, I tell them what date it is, tell them thank you and that I love them, then we have a toast. My mom died from BC and I always wish she would have included me in her journey. But she felt that keeping it to herself was protecting me so I wouldn't worry. I was in my late 30's when she began the journey. I have a diary of everything so that someday if my kids want to know they can read it. So I say celebrate everyday!

Mitzi333's picture
Mitzi333
Posts: 511
Joined: Feb 2011

My Onc is very careful and does not say I'm cancer free ... but the longer without problems the better. Thus far everything is going well and looks GREAT, but he will not declare I'm care free. He suggest I Enjoy life and not worry about a reaccurance.

Although everything is going Great, There are no guarantees... So long story short, I celebrate the milestones and Live Life. It's been a long and memorable journey the past year. Life Altering... Lots of growth and Appreciation for life... So I'm Lovin Life and Living it up!!!

Cheeeeeers ;0)

disneyfan2008
Posts: 5248
Joined: Oct 2010

I dont' worry about it..just curious...some time back friend had melanoma surgery and once done said I am survivor...(no treatments)

so anyhow...I see posts here people say dancing with NED etc..my drs just say good tests results see you in x amt of time..

thanks for replies...

Denise

jonahrex98's picture
jonahrex98
Posts: 23
Joined: Jul 2012

Supposedly post-op

CypressCynthia's picture
CypressCynthia
Posts: 3872
Joined: Oct 2009

I don't like to be a downer or to scare anyone unnecessarily, but I am a prime example of why you just can't let your guard down.

After 10 years, my surgeon said I was probably cancer-free. After 15 years, my oncologist dismissed me, saying to come back with problems. After 22 years, I had a recurrence in my ribs confirmed with a biopsy. Same ER+ breast cancer metastasized to my ribs.

My advice is to live like you are cancer-free, but be vigilant. Unexplained broken bones or unexplained symptoms need to be evaluated--no matter how many years out that you are.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Good advice CC.

Hugs,

Linda

disneyfan2008
Posts: 5248
Joined: Oct 2010

sadly I have said to my husband:

not if it comes back when..

I do not even think about it..or worry..

when I got for tests I never panic or worry...

Just curious (why I asked) since I hear many say "I am cancer Free"...my Drs just say all tests good..

Tx for replies..

Denise

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