Am I "living with breastcancer"?...

lexislove

I was invited to attend a weekend retreat for woman who are "living with breast cancer."

When I read that line, living with breast cancer, it kind of made me go huh?. I have always considered myself as a young woman who has HAD breast cancer at one time and has gone through the necessary steps to get rid of it. It makes me wonder if everyone else considers me "living with breast cancer"? My friends, doctors,family and society in general. I have also read many articles referring to woman who have had a diagnosis of early breast cancer with "living with breast cancer" as well. I don't know why this has rubbed me the wrong way...it just has.

What are your opinions? Do any of you feel the same way or it doesn't really bother you?

mmm5

Lexislove

I am with you 100% I am done with BC. I always say I had it, its gone. If anyone says the other I correct them. I am finally after one year ( and 3 weeks from last Herceptin) believing I am cancer free. My ONC who is one of top in country and from MD Anderson gives a very rosy outlook for HER 2 gals that catch it early and do a year of Herceptin! I have 2 friends that had stage 3b 5 years ago and had Herceptin and they are also cancer free.

We had breast cancer and now we need to live life! I am trying to find the good things that changed for me as a result and let it (the title) go>>>>>

lisa-e

Here is how I look at it -



1) I no longer have breasts

2) I will have regular follow-up appointments with my oncologist for the foreseeable future.

3) I have mild le to deal with



I don't think my chances of dying of breast cancer are very high at all; however, I do have to live with the consequences of having breast cancer and a mastectomy. That doesn't mean that I can't deal with the consequences or that they dominate my life. The consequences just are. So yeah, I am living with breast cancer. And I am okay with that. I just got back from a wonderful hiking trip and spent a week climbing last month. I am enjoying life!

jmartucci

I feel the same way. I'd like to think that I had "breast Cancer". 

Estepp

I see your point. It is a great one.

I do not have breast cancer anymore. Many of us do not.

Do we live with it daily?? After treatment is all over and we have moved on???

I, myself, would only go to this if I had stage 4 and my doctors said there is no cure, but I can treat it for a long long time. This would be living with it and going on.

dreamwriter

I would think that "living with cancer" is a delicate way of saying Stage 4 or Metsters as we call ourselves.  If it included other stages I think they would have referred to you as Survivors - having lived through it and survived the consequences.

But I could be wrong.  I have been wrong once or twice in this lifetime.

saltwater-cowgirl

I agree with Lexilove.

After surgery, after seeing the onco dr, after being reconstructed  because of choosing to have a bilateral mastectomy, all  the drs said i was done..even used the word cured(with no guarantees attached!)....SO,I keep reading that I have to carry around this fear of recurrence for the rest of my life...which by the way, i was told that i would live to be an old woman by the radiologist when this nightmare began (so that is a LONG time to be afraid)...by the way i was 50 at Dx.....I'd like to not carry this fear. I am healthy, run 15 miles a week.....I take Femara which I hate, but will continue.I just want  to live my life. I have always taken care of myself....I guess being a hypochondriac doesn't help in this situation.

Saltwater-cowgirl       (I'm a surfer)

candie1971

I would agree with dreamwriter. I consider myself...had breast cancer. My onc and BS say I am "cured". I know I have to be afraid for the rest of my life but I am not "living with breastcancer" at this time and hope never to be. We can only pray.

otter

I agree with dream.  Only those of us who know we still have malignant cells in there somewhere are truly "living with breast cancer."  I suppose someone who is Stage IV but NED would even like to think she has a break from living with BC.  Maybe a really, really long break.

The rest of us, though, are certainly living with the threat of breast cancer, more so than the average woman who's never been diagnosed.  We're also living with the visible and psychological after-effects of our initial diagnosis and treatment.  Maybe that's what they meant.

lexislove, maybe this is a good topic to discuss at the retreat. 

otter 

kira66715

The semantics are so important: there is the site LBBC--living beyond bc--and there is the whole charged issue of "survivor". I've seen posts where women say "I'm a survivor when I die of something else." I prefer "veteran". 

I consider myself living with the changes that bc has caused in my life, and I always struggle with what tense to use when I talk about it: I "had" bc or I "have" bc (I don't like to use the present tense)--I just say, "I was treated for bc." 

Although I have no active disease, I do have LE, so I live with the collateral damage of treatment every day. 

Kira 

mzmiller99

Kira - I like veteran, too.  I don't know if I'm a survivor...yet.

And, Dream - absolutely!  If we're NED, than it doesn't seem to qualify as living with bc.  Even if we are and just don't know it yet, it's a whole different world from knowing and dealing with it.

Susan   Hugs to all on this beautiful day.

lexislove

BUMP...for more womans opinions!

lisa-e

I get your points, Dream, Otter...I wonder what the sponsors of the retreat had in mind by the phase "living with breast cancer?" 

Kira, I like your viewpoint - that you are living with the changes bc has caused in your life.  I think it is a more accurate description of that I feel about the  changes in my body and my life.   

Crystalady

I have only heard Living with Breast Cancer used for people who have Stage 1V. However I think most who have had BC are never able to truly put it out of your life. Every time the word Cancer is spoken it is a reminder.

If you have finished treatment then my advice is to live life like there is no tomorrow because there's no point in worrying about what might or might not happen.

Sandra

leaf

As someone who has PTSD, or something close to PTSD, I am  'living in the past' a lot of the time, almost certainly more than the 'average' person.  I have LCIS (nothing worse), so I'm 'just at higher risk'. 

I rarely have full control of my PTSD symptoms, so its not always a conscious decision.

I certainly agree with Crystallady, even though I do not have, and have not had breast cancer, I am one of those who 'are never able to truely put it out of my life.'  I guess I would call it Living with Uncertainty.

barbe1958

I say I "had" breast cancer, but my flat chest does not let anyone forget. So I live with that each day. I had to have a CT on Wednesday and my daughter was worried that there was something new to be checked. I said no, once you have cancer there is always going to be tests. So I am living with the residuals of breast cancer, but that's just semantics.

I hate the word survivor too! I told everyone that I don't "DO" pink, either. If you had diabetes would you say you are a diabetic survivor? Not.

I HAD a disease. The disease is under control until it isn't. Simple to me. 

Merilee

Definitely "HAD" not "have" for me. Tumor was lobed off with the boobs. No signs of anything more. I am living with the reality that I "HAD" an event that changed my life forever.

kira66715

I was trying to find the Lance Armstrong quote--but couldn't on his website, so I don't know if he said it:

"Cancer may leave your body, but it never leaves your life."

Something happened to us that left an impact--physical, psychological, and has an impact on our health risks in the future.

I'd also love to move on, and just compartmentalize it to something that happened, but with my LE in my dominant hand, I have to deal with it every day. And, it has impacted my ability to work--yet another constant reminder.

And, as I approach my anniversary date, I am getting even more "grumpy" about how my life changed in a moment--I felt the lump, the gyn blew me off, but I insisted on the mammogram (6 months after a normal one) and the radiologist told me "this is cancer".

Also, I moved quickly, for many reasons--fear, my daughter's wedding--and a year later, I would do things differently, ant the 20/20 hindsight is troubling as I get upset about decisions I made that seemed sound at the time.

Kira 

Anonymous

I say I had BC which was removed with the lumpectomy.  Further tests found no evidence  of other cancer cells.  As far as I am concerned I am cancer free until told otherwise in follow-up test over the coming years.

Survivor - yes.  Any time you "survive" any invasive procedure (removal of lump under anesthesia) you have survived.  Of course that can be for any event not just BC.

So, had it, removed  it, survived it.  JMHO.

lisasayers

Lexislove...I had it.  Not living with it!  In fact I made it regret it ever invaded my body!  Did it affect my life, sure!  But everything that happens to us affects us one way or another.  This isn't any different.  It has made me an even stronger person....and more stubborn! LOL

Debonthelake

I agree 100%

One of the positive self talk comments my boss made to me right after the new year was,

"Just think, you're starting the year off cancer free".  I work in a mental health agency so everyone is into self talk.  But, he was right and I appreciated the framework he gave me.  It is insensitive to lump everyone who has had this illess into a living with category.  So many of us are cured now.  Totally and completely cured.

There are people who live well a long time with cancer of various types but, I'm working on a cure myself.

Shirlann

I think Dreamwriter is spot on.  I am 10+ years post treatment and do not consider myself in any way "living with breast cancer".  Not to say I am not aware it can recur, but I think this group may be women who are living with mets.  They can live a long, long time, one of our gals went 17 years with mets.  They zapped them when they showed up and on she went.

We all will always live in some state of fear, headaches are never headaches, they are mets.  A back pain is bone mets, and on and on.  But this gut-wrenching fear goes away or fades with time.

Gentle hugs, Shirlann

lilith

Seconding everyone else. 

I am living my own life, and I prefer to chose the company: BC is NOT invited, not now, not ever.

My life is more complex than before BC - for many reasons, also but not only related to the disease. Today, almost 2 years out - yippeee, I am living normally again, seeing docs when I think it is required, and of course following up religiously my check-ups - but I am also happy to go on with life.

Yes, I always have at the back of my mind a little voice saying "enjoy now! enjoy now! who knows if next year you will be in the same spirit and strength?"... but I try to make my choices in a way that is neither too hurried, nor too delayed. you know what I mean?  

barbe1958

"Living in the moment" has finally made sense...

Marple

Amen to that Barbe!!!!

Edit to add, sometimes things will happen that might set you back.  Still, hopefully we all have our "moments".  (Good ones that is.)

Gentle hugs.

Debonthelake

Amen, Amen

to living in the moment.  If there is anything good about having contracted breast cancer that has to be it.  Living now, living well and being grateful for what we have now.