What does Stage III Actually Mean?
This is my central dilemma in being Stage III. What I mean is what is my own reality regarding having a Stage III diagnosis. The way I understand it reflects my day-to-day understanding and experience of who I am. I don't mean statistically or biologically. I mean existentially, I think. If I have started out in an unclear manner, I apologize. The question I pose is the most intriguing to me of this experience.
I have had both breasts off. Have had chemo and radiation and am on hormonol. None of this is as nearly significant to me as the question "What does Stage III Actually Mean?" In other words does being Stage III mean I am going to die of this disease? In my gut I feel that it does not because Stage III is not Stage IV as far as I am aware. Until it is Stage IV I feel as though I am going to live. As long as I feel safe that I am going to live, the rest of it does not matter to me.
I realize that feeling like I am going to live because I am not yet Stage IV is subjective reality. But it is my reality. I don't work at it, it is not a tool to cope, it is just the way I relate to being Stage III. I think it is a blessing because I live more or less without a cloud over my head. The exception is when I get scanned because at that time the reality of moving from III to IV is the greatest.
I hope this is not hurtful to anyone, especially women who are Stage IV. I would think that many of them who subsequently progressed to Stage IV might have felt like I feel before their cancer progressed. So back to the original question, Stage III means to me that I am still alive, same as before, with the added possibility that that could change. However, until it changes, nothing has actually changed. Because the change itself makes all the difference.
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Comments
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Wonderful brain teaser! My Chapel Hill onc says that the clinical definition of Stage 3 is that it is a "very agressive" growing tumor (and/or these cancer cells are agressive, morre than stage 2 but less than state 4) as defined by the ONCODX. I know he said more but I have not listened to the tape I made of your conversation on Friday. Bottom line is, what the heck does that mean and does it really dictate treatment approaches? Frankly for me-and I have many women in my family who have other cancer-ya' either have it or you don't. I am diagnosed Stage 2, but after surgery, I am at in zero percentile as cancer tumor has been removed. To me, the minute a cancer cell plants itself elsewhere, I am at 100%. Being a retired medical professional, we (docs) want to put things in a box and label it to feel better about treating it in the "researched" clinical profiles. And to try to sqeeze $$$$ out of health insurance co to pay for treatments. WE (as clinicians) needed to identify the stage so we could code it not only for treatment but for insurance purposes (not saying that is all the stage system is used for) to get the money to treat with chemo, etc. i want to write that I am not my BC, but right now, that would not be honest. I am so ill from SE's of chemo that for the present, I am defined by BC-even though I rail against it. "Chemo brain is chemo brain" and if I have to sleep, I need to be near a bed to do an immediate 'drop' into a horizental position (whether I want to or not). My body simply does not care what my brain thinks and it is damned frustrating!!! So, no answers, dare I say it, just ranting! (((((HEARTS))))) SV
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chrisgelling ~ Hi. I read your question and felt drawn to give you my perception of being stage3. I have only been diagnosed for 1 year in January. This whole breast cancer experience is so brand new to me that it still overwhelms me and I view my diagnosis as something more than what kind of treatment is determined. Yes I feel my breast cancer does define me in that my oncologist has defined it not only thru the treatment I will have but why he is treating me specifically with the drugs he has chosen. I am not in the "land of denial" but in the "valley of fear" and this defines how I feel about my future with my family. I fear that in spite of the removal of my tumorous breast and nodes, that there have been cells that have escaped somewhere and hiding out in my blood,or bone marrow, or liver, or someplace distant in my body., That reality of stage 3, the cancer cells found in my nodes. Though I am currently NED after surgery, chemo, radiation, and hormonal tx, I am still looking at upcoming visits with my oncologist next month, and wonder if I can make it thru another appointment with another NED diagnosis, and not being told that I have recurred or progressed to mets. This is my reality of stage 3.
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I like the question. Let's see if I can give a coherent answer with my thoughts...
To me, Stage 3 is two things. It's the medical dx that defines the treatment plan and the monitoring. But those are just things you have to do - kind of like going to work.
The other thing is that cloud on the horizon of my life. But just like the thunderstorm in the distance, that cloud isn't over me yet and until it is I'm not going to worry about the lightning, hail or tornadoes (can you tell I used to live in the midwest?!?). It may never come this way but it's there and it could. There are some times when I wake up in the middle of the night with fears and it takes everything I got to remind myself that the cloud is still far away. But most of the time I use that threat to remind me how good life is right now. When I'm feeling good and the SEs are minimal, I have a new awe and feeling of peace that I never had before.
Some people might wonder why I don't have more fear. I saw my sister start with stage 3 and the cloud did come for her. But maybe it's because I saw all the living she did before the cloud came that causes me to look at life and be able to find the appreciation that the cloud is just on the horizon and life is good.
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Interesting post.
According to the definition on breastcancer.org, I'm Stage III by one lymph node. So as far as I'm concerned my staging really just defined my treatment. But for that one lymph node, I would be Stage II. My treatment would probably be the same, but I wouldn't have to put up with the cringes and sad looks when I mention my stage
Just a few hours ago I had a 6-month follow up visit. All is well. That is to say, my bloodwork was good, no lumps or bumps and a general "you look great! you're doing great!" attitude from everyone at the cancer center. Does all of that mean I'm NED? I guess so, although my doc doesn't do scans. We don't have any real solid proof that there's nothing there.
However, I choose to believe that there isn't and that there never will be. Sure, that might be denial, but what the heck's wrong with that? If I do have a recurrence, it's not going to be any lighter of a blow to me because I was scared that it was going to happen. I am more than happy to bury my head in the sand and live my life. I can eat well, exercise, etc. but in the long run I really don't have any control over what happens down the road. This doesn't mean I don't wake up in the middle of the night every once in a while with my heart in my stomach. But I have chosen to believe that cancer was something that happened to me, it sucked and now it's over. I don't have Stage III cancer, I HAD Stage III cancer.
I know this isn't the path for everyone and I totally respect that. We all have our different ways of coping. I think everyone on this board is amazing!
Big hugs!!!
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I try to think of my Stage III cancer as no better or worse than those at Stage I or II. That is, until I go to the doctor. It seems every one of them feels the need to tell me, "You are LATE STAGE after all." The insurance companies take staging into consideration, too.
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Funny thing is, if you do all the treatments that stage 3 requires your odds are lowered to those of a lower stage-no to mention so many stage 1 and 2 patients aren't given scans so they could really be 4 and not know it either.
I feel the same way- I had stage 3 breast cancer. I no longer have cancer and I am just doing treatment to make sure it stays away.
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oh yeah Pure!
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don't want to respond/ or better yet, I shouldn't respond know as I have had a little too much red wine tonight...and for some reason feel that I need to have some more along with my thin mints....
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The whole staging thing has been a big question for me as well. I am stageIIIb but my diagnoses is Metistatic Carcinoma of unknown origin because it was a lump in my axillary nodes. When I saw that for the first time I about came out of my skin. My onc has said that I am in the "grey" area. I do not have mets to any major organs but being diagnosed without breast tissue puts me in another catagory that doesn't have a "label" ...WHAT? I went to MD Anderson for a second opinion on everything and felt much better when I left there. Staging never guarantees anyone a zero recurrence and I have seen so many women with stage I and II that have a worse go of it than me.
I like to think that staging is just used as a giude for treatment and not to use it as an identity in this unfair world of BC. Cancer sucks no matter what the stage and all we really have control over is how we live our lives during and after treatment. I thought I had control over BC by having prophylactic bi-lat mastectomy's and boy was I slapped in the face with the reality of this disease.
Hearing the words " you have cancer" sucks no matter the stage.
Cathy
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When the breast surgeon said your stage is IIIc I stopped listening. I didn't want to know the odds. I did what my oncologist told me to do - DD AC/T followed by radiation and believe I have done everything I can to beat this thing. If I have to deal with more at some point, so be it but I'm not sitting around doing the math. I am finally feeling better and want to live my life. But at the same time being realistic. None of us know what the future holds with bc.
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I could be living in denial, maybe not, the fact of the matter is I'm living. I was recently asked how I was doing, I said I was fine and the person said "No, how are you REALLY doing". I knew what she asked the first time, but ignored it. However, the second time she said it with emphasis on "really" I felt like she needed an answer. Although I didn't completely give it to her, I gave her some of what she was looking for......... I told her I know what my odds are and that I choose not to go to the place she is asking about.
I had to recently write a letter to my daughter for her senior retreat, in addition to the funny stories and telling her how much I love her and am proud of her I added a few things to live by. One of them was this.........."I'll cross that bridge when I get there". I say that because spending time worrying about something that may or may not happen is a waste of time. Enjoy the moment you're in and if you have deal with something - deal with it when it happens, not "if" it happens.That is how I live with Stage III........... I live in a realistic denial. I know what stage I am, what I need to do and I also know that I'm not dead - I am alive enjoying the rain on a rainy day, enjoying the warmth of the sunshine as it hits my face, dancing to the music when I hear it, the smell of flowers blooming in the spring, and the laughter of my friends and family.
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This is really an interesting question, as I suppose Stage 3 may mean something different to each person who deals with it. When I went into surgery for MX, I had been told that my BC was stage 2 and when I woke up, the surgeon told me she found 4 tumors, one was large and there was also one positive node. She said I might need radiation as well as chemo and AIs, but said nothing about the staging. After the initial shock of hearing all this and a couple of weeks to recover while trying not to think about it, I saw the onc and the path report for the first time and learned that my BC was classified as stage 3A. Initially, it was very scary and I shut out most of what he said and dealt with what I could at the time. Later I learned that my husband, who was with me at the appointment, took in much less than I did because he went into immediate denial -- poor guy! My attitude has always been that it is better to know than to guess, but this was one time I wasn't so sure! Anyway, after a few very emotional and fearful weeks, I made a personal decision that Stage 3A was not going to define me -- it simply put me into a statistical slot for diagnostic/treatment purposes. I went through all the treatments without much trouble and told no one except my husband about being Stage 3. Now I'm getting on with my life and doing everything I can to minimize the chances of a recurrence. I still get scared and I still think about cancer every day, but I am learning to live in the moment and appreciate each little gift that life offers. Life is good and I feel very fortunate to be living and enjoying it!
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Hello. My name is Adriana and I also live in Arlington, MA. You can answer to this if you would like. Hope all is well.
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My mother was diagnosed stage IIIc 21 years ago. She did not let it define her. She was a warrior from the time she was a young girl during WWII, joined the underground and fought the enemy with all her might. When her country was conquered and she was personally betrayed she left and eventually came to the US, rasing 6 children and built another life. When she was 64 she had her first (and last) mammogram and determined that this BC enemy would not defeat her either. She built another life after BMx and chemo, adding humor and laughter and shedding some of her seriousness. Hormone negative diagnosis bounced right off her armour.
We will be celebrating her 85th birthday this May. She has been my inspiration through my diagnoses. I LOVE LOVE LOVE her and try to follow her example- I choose my own definition.
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It means a lot to doctors, not to me. Just finished all the treatments, I am on Tamoxifen now, I feel like that I am reborn again and going to enjoy life fully from this point on. Best wishes.
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I'm glad I stumbled on this thread tonight. Your comments have all been very insightful and helpful to me. I had my 3rd chemo tx today and was asking my onc more about the meaning of being stage 3, where I stand according to the stats, and what sort of follow up he will be doing after I'm done with rads. I'm glad some of you mentioned the staging as an insurance/claim tool. That makes sense.
My situation seemed so "easy" at first, as far as bc goes. Excision. Clean margins. Clear nodes. Good news, right? It appears the bad stuff actually was removed by the biopsy, but as the onc explained, there could be some cells left behind, and if so, they are nasty. So chemo gives me better odds. Today, he talked mets and recurrence stats, and the fact that he won't be doing scans, but will be going by symptoms, if they present.
My DH has a scientific, bio med engineering, background, but it's taken awhile for it to sink in with him that I could die from this. The time together is comforting. When I feel crappy from SEs, it's tough, and I'm not pleasant to be around, but the good days are sweet. My extended family is 2,000 miles away, and I aim for more time together in the future. My only son has always been the bright spot of my life, and I've made sure his education is provided for financially, just in case (my ex does not contribute). He also knows how proud I am of him. What more can I do? I cannot wallow. I can only say I did what was medically possible to do to improve my odds, and let it rest. I'm sure there will be more dark moments ahead, but probably less frequently.
I'm not sure what to say to those who ask about my prognosis. Good for now? Horrid if it mets? In some sense, the sword of Damocles? I have had a physical disability since infancy. It has determined many things in my life--my vocation, my choice of activities, my levels of physical pain. It is part of who I am and how I have become "me." But it is not all that I am. Neither is BC all that I am. It has affected my life so far, and will continue to shape me, but that's not all bad.
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Charleston Girl GREAT story-you should post it under inspirational stories. I am so gald you have her story to inspire during this process. She sounds like an amazing women!
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I will be starting chemo on March 29...I had my follow-up surgical appointment yesterday and it went extremely well. Yes, they got it all but given that I am Stage 111a, I too need chemical intervention (that's what I like to call it) and along with that I'll take any heavenly intervention as well!!! As I stand right now, I am a survivor of BC. They got it all but now they want to ensure that it doesn't come back by minimizing my risk of recurrence. So, 4 rounds of AC, followed by 8-12 rounds of Taxol, Rads then a second mastectomy to remove my other breast. I figure that if it does come back in 5,10,15+ years, there will be an easier way to treat this disease and, if not, I'll go through it again. Maybe I'm burying my head in the sand as too but I choose to look at this diagnosis as, CANCER is a WORD, NOT a sentence!
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hmh23 well said....You have an amazing attitude for just being diagnosed. I really admire your strength. What you said is actually quite true.
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I started out with (stage 1) a possible lumpectomy ended up with (stage IIIB) Neo- Chemo, BMX with rt. axilla dissection and 32 rounds of RADS and just started on the good ol Tamoxifen train!
To me being Stage I or Stage IIIb there was really no difference other than having to have my breast removed- - cancer was cancer and the only thing I thought about was I want it OUT!
Some may have already known my story that after Neo-Chemo-- the PET scan showed "no more cancer"-- only the mediastinal lymph node lit up and was 1/4 size it was before. HOWEVER- after surgery, the Pathology report showed 2 tumors in the rt. breast, 12/18 positive lymph nodes!! What does that say about PET scans?
I guess the way I look at it is that I have done all that I'm suppose to do according to treatment plans and the rest is up to God. Cancer is not going to rob me from my Life-- it only took away some quality of my life during my treatments.
I feel that I am stronger and wiser woman now and I look at Life as I'm sure you all do-- differently. I appreciate every moment given. You never know when you are going to leave this world-- whether it be by another illness or accident?
My favorite sound is the birds singing and I love to look at God's creation more now just watching the trees bloom and seasons change is Awesome! Watching my 4 year old son laughing and enjoying life is another thing that makes my heart happy. Along with having a wonderful husband that has been by my side and I don't have one doubt that he doesn't love me unconditionally.
Life is Good Ladies and We are Living Ours Now!
Loretta
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I picture my Stage III status as something like this: I was walking towards a cliff and something (chemo, surgery, radiation, anti-hormonals) caught me by the shirttail and kept me from going over. I'm still walking along the edge of the cliff, but being much more careful where I step.
But I know that at any time my foot could slip or the ground could crumble from under me and I'll tumble over into the Stage IV precipice. In the days before a scan, I feel like I'm looking over the edge. I feel a little safer, like I've moved away from the edge, after I have had a clean scan.
I have a great view of life from here! One eye on the ground below me and the other on the life around me.
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Nancy - great analogy. You put shivers down my spine!
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I find these responses very interesting, while I feel so fortunate that my oncologists believe in the word "cure" ! I was told I am cured and I am claiming it! If 22 weeks of chemo, surgery to remove the dead tumor and radiation to catch any meandering cells didn't "cure" my cancer, nothing will!
I meet many women in my profession that are long time bc survivors. Focus on living your life, and healing your body, mind and spirit! It takes all 3 to be cancer free!
I would ask all of you to consider researching some of the inspirational and holistic approaches to life. Reiki healing has been absolutely profound for me!
Also, my oncologist described my stage 3 cancer as being like a lazy garden variety cancer, that was moving along quite slowly which is why we know for a fact that at least 2 mammograms and one ultrasound missed it!
Stage 3 means you can be cured!
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I just found this forum thread and love love love it. There's so much more of each of us than our shared bc, and I'm happy to have found you all. The depth of your words have touched me and I will be writing my thoughts in the near future. Thank you all for expressing your inner secrets.
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