"It's not if but when" comments

peacestrength · February 2016

I'm not naive to to the risks of a stage 3 diagnosis, I understand this. Do you get this comment about your stage 3 dx? I'm tired of hearing this. I'm also tired of people responding with shock when I fire back that there are many stage 3 10 year survivors.

Lily55 · February 2016

Just ignore it, I hear it every visit at my Oncologist, there are people who were Stage 1 and Grade 1 who are now stage 4 and many many Stage 3 people who are thriving........the harsh reality is no one really knows who or why does well or does not.......apart from the obvious like no smoking, lose as much as fat as possible, reduce stress - its all a game of chance.........just make the stakes of success as high as you can for yourself and that is all we can do. Ignore the well meaning but ignorant folk.....x

ElaineTherese · February 2016

I don't get this comment, but then again, I don't discuss my stage with others. If I mention that I went through cancer treatment, most people just say, "But you're better now, I hope?". I just say there's currently no evidence of disease. My oncologist is actually very upbeat about my prognosis, but she's cautious, too. I guess that's why I'm also cautiously optimistic as well.

sbelizabeth · February 2016

I have made it my practice to almost never discuss certain things about my diagnosis, and I'm extremely open about my experience with others. When someone asks, "what stage are you?" it makes my hair catch on fire. While I'm beating it out, I sweetly answer, "why do you want to know?" Another one is "what's your prognosis?" My answer to this one it, "Same as yours. I'm going to live until I die." Some questions are schadenfreude others are just plain insensitive and nosy.

The "not if, but when" concept is completely off-base. It's wildly inaccurate, and is a hope-killer for us as well.

pennsygal · February 2016

These questions about stages are generally asked by people who do not/have not had BC. My docs rarely talk about stage - my MO explained they are more interested in where you are after treatment than where you started.

wintersocks · February 2016

I find people are generally clueless about what staging is in a cancer dx. If you say stage 3 they cannot believe you do not have the sucked in cheeks look. I rarely mention it. Can't be a***d to explain.

I actually had someone who realised I was ill when he contacted me on FB. I had not seen him for years and he asked 'what is your prognosis' selizabeth, I love the response 'same as you' brilliant!

Who would ask such a thing? really!

awnie1301 · February 2016

I feel like I am the one asking myself that question...not if,but when. I do have people checking in and saying things like "you're all better, right?" I feel like saying "for now"...but I don't. With my family and friends I am tired of always having to be the positive one..."I'll be ok". I am considering retiring (I am 46 yrs old). I am not sure if I will be able to benefit from the retirement nest egg I have been able to create for myself. Not sure if I want to wait for the "when".

Sorry ladies, a bit of a rant for a Sunday morning, but hoping you will understand.

Lily55 · February 2016

No I have not been asked my STage by ordinary people but medical staff make enough of it especially as I refused chemo

Lookforward · February 2016

hi ladies

My response to people who ask what my stage is, "to survive".

That usually stops them with any other unwanted questions.

YATCOMW · February 2016

I don't think most people can understand it unless they have walked it.....but I too was clueless about the disease until I was thrown into...

I am 12 years out this May with a huge tumor and 17 nodes positive....I have just chosen to stay hopeful....with hope all things are possible.....I hope that with the positive research going on....it will continue and no matter what stage they will figure this out and no matter what stage they will cure us. I refuse to let cancer take any more than it has already.

Jacqueline

Meow13 · February 2016

From what I have seen your stage at diagnosis is not an indication of prognosis. I know many stage 3 people that are NED many many years later. I think it is more important on how your cancer responds to treatment.

I am stage 1 but my cancer is classified as high risk according to oncodx analysis.

Lucca06 · February 2016

I was discharged by my oncologist last week as next month I will be 5 years from diagnosis which feels a huge step. She said due to my stage that I have an open appointment so if anything is bothering me I can go directly there rather than the usual route in England which is via your local doctor. My response was thank you but I won't need it and her reply was to agree with me and say that she didn't think I would either! However much I try and stay positive, it was just the most fantastic thing to hear.

Anonymous · February 2016

Yesterday I told someone that I had a mastectomy and her first response was "But it can come back right?". Like others said, no one knows why some people progress and some don't. It almost seems like those who do everything they can in the beginning still end up progressing despite chemo and radiation. I don't mean to push anyone in a certain direction, but try to approach your health holistically. Medicine can only do so much, but the way we treat our body plays a big part as well. The right foods, exercise, and stress-control can only help us heal and feel better. The two oncologists that I saw were optimistic going forward, so I will trust them and take comfort in that.

On the other hand, my brother was Stage IV from the start. It has almost been a year since his diagnosis. No one has asked him about his prognosis. Actually, we haven't asked his doctor either. It won't change anything if we knew. Some of our family thinks that all breast cancer is completely curable and they ask why he is still doing chemo. They don't even understand what metastatic breast cancer is. No matter what he will keep fighting as much as he can, and we are waiting to see NED on his scans.

MmeJ · February 2016

I've not heard the term from anyone in my life, but I use it myself. Given my circumstances I don't think that's an unrealistic framework for thinking about the (possibility of the) future, more than a year or two out from now. I mean, the odds are really not in my favor and incorporating that into my broader thought processes is, ultimately, just another element in the analysis.

I was dx'd at age 50; have been unmarried since age 30 and have no doubt I will remain so. I had, starting a couple of years prior to dx, started to worry about retirement and how I would be able to feed myself and the 30 cats I was sure I would eventually acquire. :-) Funny, advanced BC allowed me not to worry about this for years. Recently, that's shifted a little - which is a positive sign all by itself, as for a while thinking about the future felt too risky emotionally. Now I can at least contemplate the concept of "bouncing back."

Leslie13 · February 2016

Advanced - or any Cancer reminds us our life is finite. It always was, but now it's staring us in the face. I'm either a 2b or 3a. Does it really matter? I had micromets (under 1mm) in 4 nodes, now removed.

Staying positive and living life as fully as you can seem to work the best. Along with smart treatment. Research what works and doesn't.

I've told most friends and family I'm in remission. I've used my support system quite a bit, and only let my closest friends know the truth now. Everyone needs a break, including me. But my treatment is very recent. And my family wouldn't win any awards for being the most caring people. It's easier to be single though, than have an unsupportive spouse. Which does happen

TectonicShift · February 2016

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MmeJ · February 2016

TectonicShift, that is appalling. Not necessarily expected from non-medical, oblivious people but not outside the bounds what many of us have heard over the years. But from an oncologist?

Leslie13, as I am a few years out, I think your minimalist "I'm in remission" is really wise and enough information for everyone, even the nosiest of them. Agreed, an unsupportive spouse would make this even harder.

At my dx, through treatment, and for a bit afterward, I was involved with someone who, I realized, was using my illness to make himself look good (oh, he stuck with her through this awful situation - what a great guy he is and MmeJ is so lucky to have him!). He was only decent when other people were around and could see him pretending to care. In private, a different matter altogether.

kim40 · February 2016

Its tough. When people ask what stage and how many nodes and I tell them, they look at me with relief and then they look and say wow and you are still here. Damn right I am! I fought hard to be here but then when I tell them the reality of it all that it doesn't matter what stage your are or how many nodes is positive, it is a crap shoot. No guarantee on life anymore. I have friends Stage 1, 2 and 3, in which their cancer went to that place where we don't want to go, and have passed on. It is sad....I will never understand it, and I'm sure I'm not the only one. Diagnosed once is all it takes.

tangandchris · February 2016

I've never had someone say this to me directly. However up until fairly recently I have told myself this...it wasn't a matter of "if" it was just a matter of "when". It was really morbid and dark, but I felt so out of control after dx from the shock of it, that this was some strange way of feeling prepared for anything.

It wasn't really healthy at all to think this way because along with that thought process came obsessing and fear about every ache, pain, weird feeling that came up. I'm really working on being in the present and appreciating my life and not worrying about what could happen. I'm a work in progress for sure in this area, but I am trying.

I've never had a medical professional tell me that either, I only had a GP ask me if I was getting PET scans regularly which I thought was odd.

((hugs))

Lily55 · February 2016

I have never been offered a PET scan so never had one - 4 years almost now....................

tangandchris · February 2016

I had one right after dx, only one I've had. I guess they thought it had spread

Valstim52 · February 2016

Ladies

The fact that we are all presently here to even speculate and speak of it, gives me hope. I try and take it day by day, but prognosis and stage don't enter my conversation because for me, it's chemo, surgery and radiation no matter what for now, so i'm trying not to do the what if yet. plus i really like if i can get to remission, ned, or if i'm on chemo there rest of my life, either way, it's now my reality. My old one was shattered 12/24/15.

thanks for your thoughts and support. I also don't share my node status, stage or anything with most that ask, because who asks that anyway?

Valstim52 · February 2016

Oh I did have a pet scan, they thought due to the skin involvement it was in my lungs or somehwere else. Had a bone and Pet Scan. Was too early in the process to understand what this really meant, until my oncologist called to go over results and actually sounded positive. Sometimes it's good to be 'dumb' about the processes, at least for me, because if I'd known why they were pushing for all those tests, I would have lost a lot more sleep.

mary625 · February 2016

I've had quite the opposite reaction from most people--not comprehending the situation at all, not knowing much about breast cancer in the first place, just thinking one goes to treatment and is cured. I've had to say "if there was a cure, why would there be a race for the cure?"

It's hard. I definitely feel that I've made progress especially in the last year or so toward being more optimistic about the future.

And I've never had a PET scan either with 10 big old lymph nodes with extracapsular extension.

lkc · February 2016

no.. It's not ! Initially I was pretty worried about recurrence. In the early days my breast surgeon, would comment to me" who would of thought" meaning he was surprised I was well. Eventually I turned the tables on him and told him he looked like he was in chemo ( due to his ever increasing baldness) then gradually we both had more humor.

What happened to me is I realized that at stage III we were given the most aggressive treatment , which truly does decrease recurrences. And we all know that earlier stages often time recur.

Now, it's almost 11yrs from a really dismal, poor prognosis and I am well, thankful, and rarely take any time from my precious life to worry about "it".

I wish you all well, and worry free days ahead.

geewhiz · February 2016

I get tired of people saying "You are in remission, right?"

I don't like that word, it seems to have the air that its a temporary situation.

Running42day · February 2016

I hear that alot......."youre in remission right"? My response- "JEEZ I SURE HOPE SO"!!!!!!!!

Valstim52 · February 2016

Now that I think about it being in remission sounds like being on Probation. You could be picked up anytime and put back in prison. So nope I don't like it.

Lolis197138 · February 2016

I just got that comment "you are in remission" from an ER doctor and my response was "I hope so". I get a bit uneasy when I am asked if I am in remission.

peacestrength · February 2016

I've read through each of your responses...I am so thankful for everyone here and glad to be able to connect with other stage 3er's.

I've been asked "you are in remission, right?" question too...it's a very loaded question. My eyes widen and depending on my mood, I may simply say "yes" while rolling my eyes and move on...or use it as a blunt teaching moment that most people don't want to hear but I do it any way. I, too, get uneasy when people ask...sometimes, I get pissed because people generally only want the short answer "yes".

I've also got the "what stage were/are you" question...when I share my stage, they say, "wow, are you ok now?"...another loaded question that people generally want a short answer too. Most days, I say I'm fine but it feels like a sacrifice. I do blow it off much of the time but some days are more difficult than others to do so.

Hugs to all!

McClure77 · March 2016

It's funny. I get more people who are willing to declare me "Done!" with cancer. I feel like *I* am the one with the little voice that is waiting for the other shoe to drop. I'm hoping this is just a stage and that I'll one day go from being a survivING to a survivOR, but for now it is what it is.

"It's not if but when" comments

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