When can you say out loud you are cancer free ?

kln

I had a bilateral masectomy last December. I have two more treatments of Herceptin. My port comes out September 11th.  When can you say you are cancer free. Ever ? Is it remission ? What is this stage of my life called beside ?  So glad to be near the end. So grateful  !!!!

RozHopkins

My understanding is you can

My understanding is you can treat it or slow it down but you can never be certain you will ever be cancer free long term.  No one knows for sure what is 'down the line'.   Think all we can do is, eat well, take care if ourselves, exercise, don't stress out generally, keep an eye on our health, be aware.  Enjoy life and good health while we have it.  To be positive and upbeat is always a good thing, laughter is a tonic.

GlowMore

Free To Be *

Hi kln.......  Just went to your Home Page to see what you are dealing with but you have not put your Diagnosis there.   Sometimes that helps others relate a little better....mine is IDC Triple Negative Stage 3B....they kept looking for the beast to show up for the first ten years & would not remove the Port for about 8 years, however, now that I'm 13 years from Diagnosis they tell me it isn't likely to return ...but oh wait and oh JOY...what might happen now will be a new and different type......perhaps even a cancer CAUSED by the chemo and radiation so many years ago.   Now if I wanted to dwell on that my life would be one bundle of misery......so I decided very early on NOT TO LIVE IN FEAR.....and I decided to do the best I could with what was happening....and to hold on to My Lord and Trust in God.   I love your Attitude of Gratitude     You are going to be just fine and we are all cheering for you *** WOO HOO  ***  Prayers for your continued strength and courage.   Love and Hugs.   Glo

Rague

NED - No Evidence of Disease

NED (No Evidence of Disease) is the best we can hope for according to my Drs.  There is no ''cure' for cancer at this time only treatment - so can't really be considered 'Cancer Free'.

As Glo said if you would fill in your Profile with info as to what type of BC you are dealing with with, replies would be easier as the prognosis are different with differenttypes, Stages, ER/PR and HER 2 status, lymph node involvement, etc.

In my case, IBC, Stage IIIc, 19 positive nodes, ER+/PR-, HER2-.  DX was most 6 yrs ago (next month).  When I hit a yr post DX my Drs told me that when I was DXd they had not expected me to make it to the one yr mark at all - fooled them.  Not only did I make it a yr but made it to the 'majik' 5 yrs (only 25% to 40% of IBCers make it 5 yrs) but have now gone over that by another yr and still NED!  By the way, my port is still in - has been since Aug 25, 2009 and stay it will.  If I had it removed and then needed one again, it could not be reimplanted on the same side or put on the UMX side so would be put somewhere else that (to me anyway) would be in a less,convient place - I go monthly for a port flush to keep it safe.

As the name of this site says - Cancer Survivor is what you are.  Could 'it' come back as a recurrance or a metatisi or even a new Primary - sure, there are no guarantees in life.

Life is to be lived and loved to the utmost no matter what time bring along the journey.  it is for us to decide how we want to live life,  positive thoughts/behavior brings better times/feeelings, negative thoughts only serve to take us lower.  Just my thoughts and what I believe.

Yes, there were some times during TX that was not so easy but it was my strenght annd ''hiking stick/Staff and I trudged on til the sunshine once again showed back up.  I was 63 when DXd so am now 69.  I have always been a VERY active outdoor woman and still am.  I care for and ride our horses, ride my bicycle, mow my yard and 2 other yards to help out ones who need a bit of a helping hand with my push mower, garden, fish, target shoot (pistol and rifle).  In the yrs since DX, I have taken up fly fishing (always fished just not fly fishing), fly tying, rod building, flint knapping (making arrow points) and carving Woodfellows.  So I do stay quite busy and do/at least try, any and everything that sounds interesting or fun to do.  Our project for this summer has been to try kayaking, unfortunately Hubby's work schedule has not yet allowed us to but then the summer is not over yet - still some time before the lakes freeze over for the winter.

Winyan - The Power Within

Susan

 

(There are many new ones since I last explained "Winyan - The Power Within" as it does have a meaning that is positive.  It was the 'slogan'/motto [for lack of a better word] for my Women Veterans group years ago which is no longer active.  Simplistically - it means that women have the strength/power within to be strong and all that goes with being a strong woman.  'WInyan' is Lakota for 'woman'.  [We are not far from Pine Ridge and Rosebud Reservations so a lot of Lakota in the area.] I hope that explains it and that some might gain strenght from knowing what it means.)

 

 

 

 

 

 

button2

Whenever you want to

I have often wondered the same thing. I'm almost 3 years out and at some point I started using the past tense i.e. "I had cancer". It's a personal decision. Really once surgery is performed, the cancer is technically gone, but probably better to wait until treatment is over. That's how I felt anyway. Yes you are very close to the end - Congrats!!

joannstar

I asked my onc

the same question. His answer was never. Let me tell you I was not a happy camper. What he told me is that the best a BC survivor can say is No Evidence of Disease (or NED). He also said that my Cancerversary date is the date of the surgery (or in my case, the second surgery to get clean margins for the lumpectomy).

I was TN, Stage 1, Grade 3, No nodes and I had 6 rounds chemo and 33 radiation treatments that ended on 4/1/11. However based on my onc's advice, I will be celebrating 5 years on 8/19/15 !!!

Hugs,

JoAnn

 

 

Double Whammy

joannstar said:

I asked my onc

the same question. His answer was never. Let me tell you I was not a happy camper. What he told me is that the best a BC survivor can say is No Evidence of Disease (or NED). He also said that my Cancerversary date is the date of the surgery (or in my case, the second surgery to get clean margins for the lumpectomy).

I was TN, Stage 1, Grade 3, No nodes and I had 6 rounds chemo and 33 radiation treatments that ended on 4/1/11. However based on my onc's advice, I will be celebrating 5 years on 8/19/15 !!!

Hugs,

JoAnn

 

 

I use the past tense also

I will be at 5 years December 1 (that's when my radiation ended) and I also say I HAD cancer.  My daughter uses the term "cancer free" and talks about how I beat cancer and I'm perfectly fine with that because as far as anyone knows, I AM.  I've found it's simply frustrating to even try to correct someone that NED is different than "cancer free" or cured, because if you do, they think you're being negative.  So it's just easier to say thank you.  No one wants to hear anything other than it's gone forever after treatments - and many times it is, but there are simply no guarantees.  I had 2 primary cancers (breast and uterine) and I honestly now believe that I AM cancer free, but I also know that my body grew those two independent cancers and it could grow another one if it wants to - or not.   I think back before there were so many resources available to educate ourselves about our disease, that there was plenty of misconception (me included) about being cured, both on the part of the patient and the general public (of course, the oncologist knew better).  Today I do consider myself cured, so if someone wants to say that I heartily agree.   If I have a recurrence it will be unexpected.  In fact,  I have a very good friend who was early stage, node negative and she recurred after 10 1/2 years!!  Very unexpected yet it does happen.

I think you should say whatever you're comfortable with in describing your status.  If cancer free are the right words for you, use them.  Your follow up visits to the oncologist are not to prevent it from coming back, once you've completed the first line treatments, they've already done everything they know to keep it away.  There are statistics that go with stage and grade and receptor status.  And that's all they really know - the statistics.  They don't know if you're amongst the percent of people who never recurs, or the percent who does.    The follow up visits are to check what they can to be sure the beast is not showing up again and be able to treat anything if needed.   You will always have the diagnosis of breast cancer.  It's not the  flu.

Suzanne 

morgamed

Double Whammy said:

I use the past tense also

I will be at 5 years December 1 (that's when my radiation ended) and I also say I HAD cancer.  My daughter uses the term "cancer free" and talks about how I beat cancer and I'm perfectly fine with that because as far as anyone knows, I AM.  I've found it's simply frustrating to even try to correct someone that NED is different than "cancer free" or cured, because if you do, they think you're being negative.  So it's just easier to say thank you.  No one wants to hear anything other than it's gone forever after treatments - and many times it is, but there are simply no guarantees.  I had 2 primary cancers (breast and uterine) and I honestly now believe that I AM cancer free, but I also know that my body grew those two independent cancers and it could grow another one if it wants to - or not.   I think back before there were so many resources available to educate ourselves about our disease, that there was plenty of misconception (me included) about being cured, both on the part of the patient and the general public (of course, the oncologist knew better).  Today I do consider myself cured, so if someone wants to say that I heartily agree.   If I have a recurrence it will be unexpected.  In fact,  I have a very good friend who was early stage, node negative and she recurred after 10 1/2 years!!  Very unexpected yet it does happen.

I think you should say whatever you're comfortable with in describing your status.  If cancer free are the right words for you, use them.  Your follow up visits to the oncologist are not to prevent it from coming back, once you've completed the first line treatments, they've already done everything they know to keep it away.  There are statistics that go with stage and grade and receptor status.  And that's all they really know - the statistics.  They don't know if you're amongst the percent of people who never recurs, or the percent who does.    The follow up visits are to check what they can to be sure the beast is not showing up again and be able to treat anything if needed.   You will always have the diagnosis of breast cancer.  It's not the  flu.

Suzanne 

1 year cancer FREE

And I'm sticking to that!   I had a bilateral had pet/ct scan 6 months after and they couldn't find anything.  So this Saturday will be my 1 year cancer free.  Once the alien was out of my body then I considered myself cancer FREE.  And I tell people right now I AM FREEEEEEEEEEEEE.    

disneyfan2008

I think everyone has a

I think everyone has a different thought. I considered myself cancer free after my last radiation. I did not have chemo and never thought of remission , myself.

 

Denise

kln

GlowMore said:

Free To Be *

Hi kln.......  Just went to your Home Page to see what you are dealing with but you have not put your Diagnosis there.   Sometimes that helps others relate a little better....mine is IDC Triple Negative Stage 3B....they kept looking for the beast to show up for the first ten years & would not remove the Port for about 8 years, however, now that I'm 13 years from Diagnosis they tell me it isn't likely to return ...but oh wait and oh JOY...what might happen now will be a new and different type......perhaps even a cancer CAUSED by the chemo and radiation so many years ago.   Now if I wanted to dwell on that my life would be one bundle of misery......so I decided very early on NOT TO LIVE IN FEAR.....and I decided to do the best I could with what was happening....and to hold on to My Lord and Trust in God.   I love your Attitude of Gratitude     You are going to be just fine and we are all cheering for you *** WOO HOO  ***  Prayers for your continued strength and courage.   Love and Hugs.   Glo

Hi how do you update your

Hi how do you update your home page ? I can't seem to find the right place . Thank you Kelly

kln

Thank you everyone for your

Thank you everyone for your input.  I really appreciate  it . Kelly

VickiSam

kln said:

Thank you everyone for your

Thank you everyone for your input.  I really appreciate  it . Kelly

... like so many, all I have been told is that ...

'NED', No evidence of disease ...   I have met many women, and men along my journey -- and not one of  have ever been told that they are cured --- some say,  'cancer free' at this point .. or  I am in remission.

Interesting how many of us describe ourselves ... after our cancer journey's .. 

Strength, Courage and HOPE for a Cure.

Vicki Sam