• Being Cancer shamed by a stage 4 vs me being stage 1?

    Asked by Statto on Thursday, February 22, 2018

    Being Cancer shamed by a stage 4 vs me being stage 1?

    I had a recent incident that completely shook me, so I am posing the question here, this seems like the best place to get feedback.

    I recently celebrated 6 years post double masectomy. I was stage 1, lumps in both breasts with 8 rounds of chemo. I rarely do this but put a celebratory message on my FB page. 1 of my friends mentioned how my Positive attitude helped me recover.

    A recent acquaintance of mine that is stage 4 Metastasized breast cancer jumped all over the comment of my friend taking it to mean that I cured myself with a positive attitude. Not AT ALL what was meant.

    Some back and forth ensued between her and myself, and her disdain for stage 1 breast cancer patients, and the lack of understanding and hurtfulness that she seemed to experience. On her FB post she went on to post a long message about it, with other subsequent messages of "idiots, uneducated, etc."

    I was SHOCKED and floored, I didn't realize there was a heirachy or such a divide. Looking for feeback?

    52 Answers from the Community

    52 answers
    • MarktheMan's Avatar
      MarktheMan

      Some people who are of an advanced stage diagnosis have a problem with the stage 0 or stage I diagnoses. I would say it's a lot of psychological issues with the disdain for the lower Dx's and somehow she feels nobody is paying enough attention to her. I get it, there are a lot of stage IV Dx's that don't get the attention they deserve, but cancer is still cancer. It's not your fault that you caught yours early enough and it didn't turn into a late stage. Late stage cancers bring out a lot of anger in most of us. I had it too, I was stage IIIB with my last one.

      over 3 years ago
    • lh25's Avatar
      lh25

      I think MarktheMan hit some good points. I think she's angry and scared and taking it out on you perhaps because you are OK.

      And yes, I do think sometimes some patients, and others for that matter, see a hierarchy. In talking to friends, and in my own experiences, I've heard comments like "Well, you got one of the good cancers". Usually meaning easier to treat, but "good cancer"?!?! And comments from some fellow Christians that faith and prayer will heal you. The implication being if you are not healed, it's a lack of faith on your part.

      One friend is getting a chemo that doesn't cause hair loss, and he get's comments about how it can't be serious or even really cancer since he's not bald.

      There is a lot of ignorance and fear out there around the word "cancer".

      over 3 years ago
    • Statto's Avatar
      Statto

      Thanks Mark. I know she is much more advanced, and having to continue her treatments and I want to be sensitive to that. I am also very aware that I may be in her shoes somewhere down the road, with cancer returning. But for that 1 day I wanted to celebrate. And yes I do believe a positive attitude helps me and the helps the people around me know how to deal with it. My father died of stage 4 colon cancer 2 years ago. He wasn't happy about not having more time, but was happy and content with the life he lived, and that he would be going home to the lord. It brought us all great comfort that he was so comfortable with letting go. I hope to be the same the rest of my life. However long that may be.

      I just didn't think that my celebration would or could be hurtful for someone else with Cancer. But if I am wrong and need to be educated I am happy to listen. I just don't want to be talked to with disdain as if my recovery doesn't matter.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Some people are just plain mean. She is probably jealous and scared, too.

      There is nothing easy about having cancer, no matter the stage. And, i, for one, admire a positive attitude, no matter whether the person even has cancer.

      Big hugs. I am sorry for your acquaintance's very poor response. I am betting it has far more to do with her than with you.

      over 3 years ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Celebrate!!! Every chance you get!!!

      over 3 years ago
    • SandiA's Avatar
      SandiA

      Hi! I am stage 4 myself and I celebrate with you! I personally think every victory we have with cancer should be celebrated. My sister got it more than I did. She would tell her friends about me and ask for prayer etc and a few people said oh melanoma isn’t that just skin cancer. She just needs to have a mole removed. I also heard early on well you can’t be too sick you haven’t lost any weight. It was very hurtful. But the way I look at it everyone’s cancer journey is their own. So celebrate! I also agree a positive attitude helps. My doctor tells me that when I get down and discouraged.

      over 3 years ago
    • Carool's Avatar
      Carool

      I, too, had a stage 1 breast cancer (triple-negative), 19 years ago. I agree that metastatic breast cancers get far less research money devoted to those cancers that kill. However, as you implied, Statto, with any breast cancer one can never say one is cured, as it can lurk for even decades and then suddenly metastasize.

      As for those who insist that being "positive" does anything with regard to the actual cancer cells and not just feels better emotionally for some people, I dislike it very much when someone says that one's emotions affect one's chance of survival from cancer (heart disease and other illnesses may be so affected). However, as you said, you yourself never said that.

      None of us is to blame if we have a possibly more curable cancer than others! But people can be irrational when confronted by their mortality, or even when not. I know I can be quite irrational when I see what's happening in the White House.

      Carry on, all!

      over 3 years ago
    • Statto's Avatar
      Statto

      I can't even tell you how much I appreciate having this forum and for all of the feedback!

      over 3 years ago
    • Carool's Avatar
      Carool

      Sorry - my cancer was triple-POSITIVE, not negative.

      over 3 years ago
    • geekling's Avatar
      geekling

      When people are sick, frightened, and weak they sometimes lash out. Nobody wants to be prey or fodder. Try to remember when you were first in a state of shock at your diagnosis. When you arent well, having a bad day means a lot more to ill folks than to others.

      Try to make peace. If that isnt possible. Walk away.

      over 3 years ago
    • BoiseB's Avatar
      BoiseB

      In my circle of friends here there are a lot of people have had cancer so they sort of gather into what I call the cancer clique. And there is a lot of good-natured upstaging going on. There is a lot of bragging about how many different cancers you have had, how deadly, and what stage. I must say I am pretty low on the bragging scale with only two cancers and only one at stage IV. One person said she knew a lady who had 5 different cancers and 3 of them at stage IV . However those in the group who have only had 1 cancer as stage I are never belittled. They may just be starting And there are many kinds of cancer one can get.

      over 3 years ago
    • GregP_WN's Avatar
      GregP_WN

      A couple of things from me, first, we are happy that you have found our little village helpful, we try. Next, the stage IV can make people lash out, even stage III+ can. I was stage III advanced in my last diagnosis and I had a lot of pent-up anger. Shoot, I was mad at the average person walking down the street that was healthy and as I thought at the time, had NO worries. There I sat watching them live their happy little life and I was about to die. That thought will bring out some anger. And, some people cannot handle the dark possibilities that we face. It wasn't your fault or your friend's fault that made the post about being positive. My take on positive has always been that having a positive attitude never killed a single cancer cell, and never will. But, as long as we are going to ride this HE$$ train through this, it can either be with a good attitude and make the most out of each day, or we can go through it with a pissy attitude. I will choose to make the best out of it too.

      over 3 years ago
    • Ejourneys' Avatar
      Ejourneys (Best Answer!)

      First, congratulations on the six-year mark! You have every right to feel proud, thankful, and happy. No matter the stage, it takes a lot of fortitude to kick cancer's butt.

      I was Stage 1, treated in 2014 (lumpectomy, chemo, rads). I'm now on hormone therapy and NED (no evidence of disease).

      Unfortunately, there is a divide, which different people handle in different ways.

      @Carool hit several nails on the head. First, BC mets research gets only a tiny fraction of BC research as a whole (the latest figure I've seen is 7%) -- yet metastatic BC is the only BC that kills.

      The most visible BC "culture" all but ignores metastatic BC. This is especially egregious during Pinktober, which is all a rah-rah celebration of survivorship and pink everything that rarely ends up raising money for any useful BC research, let alone for mets. Komen has been notorious here, raising the bulk of funds for "awareness" (read: more rah-rah events).

      There's been a pushback in the past couple of years, but still.

      As Carool says, none of us is really "cured." Cancer can recur and metastasize decades later, though most deaths experienced by non-metastatic patients are due to other causes. The thing with mets, though, is that treatment never stops. It can take a hiatus during periods of remission, but the best one can do with mets is manage it. And that ongoing treatment not only can cause horrific side effects, it can cause horrific financial toxicity. And that all occurs within the context of scarce research, losses of all kinds (from friends to functionality and more), and a pink party atmosphere that indirectly tells people with mets, "You're raining on our parade. Go away."

      So I'm not surprised that someone with mets expresses anger -- but please note that this has absolutely nothing to do with you or with your friend.

      I'm active in Breast Cancer Social Media (#BCSM, bcsm.org). We tweet chat on Monday nights at 9 PM Eastern. #BCSM is made up of patients (both early stage and metastatic), doctors and other healthcare providers, researchers (including the wonderful people behind the Metastatic Breast Cancer Project -- more info at mbcproject.org), caregivers, and other advocates. Our discussions span a wide range of topics, but we regularly discuss ways in which those of us who are early-stagers can support the metastatic community. (Short answer: donate to metavivor.org, advocate with legislators on behalf of mets research funding, and raise visibility.)

      I can see how a line about positive attitude can upset someone with mets, but there are individual differences there, too. A friend of mine continues to be very positive in the midst of mets that now includes brain tumors. I think she would understand your friend's encouraging comment because her can-do attitude helps her function in the midst of loads of crap (she also has cardiac issues).

      But with all the Pinktober crap, "positivity" is often foisted on people who actually function better when they are less positive -- that includes early-stagers, too. Again, this has absolutely nothing to do with you or with your friend. As for the acquaintance of yours with mets, her hostility toward you and your friend was unwarranted. At the same time, I can see why she may have lashed out (it does not excuse her behavior toward you or your friend).

      She may find these sites helpful:
      Metastatic Breast Cancer Alliance: http://www.mbcalliance.org/
      Metavivor: Metavivor.org
      MET-UP: http://metup.org/
      Metastatic Breast Cancer Project: https://www.mbcproject.org/

      Those sites are also good for raising awareness in the rest of us. I also recommend reading this blog post from early-stager Nancy Stordahl:
      http://nancyspoint.com/i-will-be-an-ally-for-my-friends-with-metastatic-breast-cancer-always/

      over 3 years ago
    • barryboomer's Avatar
      barryboomer

      I wrote this song called DON'T RAIN ON MY PARADE...for this stuff...
      https://www.youtube.com/watch?v=3BkFvVEZydo

      over 3 years ago
    • Carool's Avatar
      Carool

      Ejourneys, thank you! I wish I could hit actual nails when I'm trying to hang a picture!

      over 3 years ago
    • Lindy's Avatar
      Lindy

      Ejourneys you are so rock star with your thorough response. Being the one in my family who had an aggressive advanced form of breast cancer that required somewhat radical surgery & the rest of the protocol & the only one who did it without a caregiver I was a bit testy :-}

      over 3 years ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      To those resources, I would add Breastcancer.org--especially its discussion forums. There are "topic" threads for all stages, types of treatments & surgeries, different religions, regions, and not just dealing with breast cancer but diversions from it (including food, hobbies, games, etc.).

      over 3 years ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Hey Barry--nice work. (Good thing one can't copyright a title, otherwise Jule Styne's estate would have a bone to pick with you). You have a little Zevon-esque thing going on with your voice. I wrote a song about moving forward called "Act Three," but have yet to record it (it'll be on my second solo album if I ever get around to finishing and releasing it).

      over 3 years ago
    • merpreb's Avatar
      merpreb

      I must be every naive or sheltered to lean that someone would attack another cancer survivor. She owns this one. I can only imagine the distress that she feels that she has such an advanced cancer and feels threatened. But that is no excuse for her bad behavior.
      I am a lung cancer survivor and on one of my posts I talk about shaming, guilt and opinions. Part of it says, "I have learned that shaming and guilt are two different things. Guilt concerns a behavior that I did. It is close to feeling embarrassed but with more oomph. It means, to me, that I did something that caused harm to myself and made others feel terrible. And yes, I have felt that very plainly for more than 20 years. When guilt hits me I feel like I have dropped my heart and can’t find it. And with each re-occurring cancer, my guilt for having smoked haunts me like a nightmare, an echo of something that I chase but can’t catch or stop. I can’t put my hands on it, can’t kill it. My guilt is that every time I have cancer my son and husband have to walk me through everything – tests, fears, anxieties and expensive time-consuming trips to Boston for treatment. I look in their eyes and see the pain of not knowing how to help me, of feeling lost, of not knowing what to say or do, trying to take my lead but with hesitation, not sure if I know. “Is this the right path to take?” “Do we need a second opinion?” Cancer takes a part of me that I can’t get back. A me essence, a joviality, and vitality. And with every cancer it takes more. Physically I am more drained, more worn down, less happy, more depressed and I am tired and sick of the fight. Mentally I have less to give. My guilt asks haven’t I proved myself yet? Haven’t I paid my dues? When will it stop? Will it stop, give me a break? It drops me down a well, pushing and pushing downward. Someone once said that seeing someone suffer is one of the most heartbreaking things. By smoking I have created a family dynamic that has tied my hands and theirs.

      Shame is much different. It is a feeling that some people give you to make you feel like a failure while they are not. “So, you are going to go to THAT movie, with THAT on?” “I thought that you already read THAT book.” “I thought that you had already QUIT smoking.” Someone else once said that it is the swampland of the soul. Shame says, “You have failed and I know it.” Shame shoots arrows at the self. It tells me that I am bad, naughty, and not good enough. It’s a disapproval of something that I have done; it can be subtle or very obvious. Sentences like, “as you already know…” The person shaming wants you to know how smart, intelligent, and sensible they are. They want to one up you, boast and have power over you. They don’t want the behavior that caused your failure to be theirs so they put you down. It’s a sepsis. They capitalize on your downfall. Sometimes they might not even be aware that they are doing it, or they do it because that’s what they heard and don’t know what else to say.

      Opinions, I think, are very hard to keep to yourself. I have volumes of them, and will gladly share all of them. I am a purveyor of opinions and have been taught well. But when someone is very ill and vulnerable it is not the time for opinions. Even suggestions can be taken the wrong way. “Eat only whole, organic foods.” I had to ask my doctor about any special diet for lung cancer. He told me that “If diets prevented cancer than there wouldn’t be any cancer”. Some people just get cancer. I have learned both and have learned to shut up (mostly). I have also learned to speak up when it’s been done to me. One of the first things that was said, to me was, “I pray that God is on your side.” Ok, why wouldn’t a God be on my side? You really want to get into religion now? Do you know me well enough to say anything like this?

      https://www.my20yearscancer.com/

      If your friend can't deal with your cancer (past tense) then I suggest you take care of yourself first and let her figure out how to deal with her problems. You come first and this added stress foesn't serve you well. I know this sounds cold but as cancer patients we have to take care of ourselves first.

      over 3 years ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      I can't believe anyone with cancer would shame or makelight of another person's cancer battle! :@ None of us wanted to join this "club", but we got inducted anyway. No matter what the stage, it's very frightening, and I personally think it's normal to wish you coud be like those healthy people on the streets evry day. Oh, how many times I longed for the health enjoyed by my friends at church who didn't have to endure chemo, radiation, and more needles than one would like to see in a lifetime. Also, I do thinkand will think until I am dead that emotional support should be automatically provided for *all* patients with cancer. No matter if it's stage 0 or IV, everyone will have good days and bad days, and they will feel like they stick out like a sore thumb. I had a friend who thought I was not that sick because I didn't throw up on chemo, but I dealt with toher side effects I found horrible. I know a positive attitude is very helpful in a cancer journey, but when you are having one of those bad days, it feels more like a Ra Ra speech from a healthy person waving her pink pomm pomms because you just feel ill and depressed for a while. That's why we need groups like this where we can celebrate a milestone or give vent to what is happening in our lives. I am so happy for you that you reached a milestone, and you should celebrate it no matter what anyone says. HUGS and God bless.

      over 3 years ago
    • cak61's Avatar
      cak61

      I called my sister about five minutes after hearing I had cancer and was crying terribly. She meant well, but said in a rather scolding voice, "LISTEN TO ME, IF YOU'RE GOING TO BEAT THIS YOU HAVE TO HAVE A POSITIVE ATTITUDE!".
      Well, I wasn't exactly feeling positive at that moment and now when I hear people say something about "being positive" it kind of rubs me wrong. After all, lots of people are positive and the cancer kills them anyway. So, I feel like it might make those people feel like they weren't positive enough?
      I have read about studies that show it doesn't matter, in the case of cancer.
      But, of course you will feel better and the people in your life will feel better if you can be a happier person going through this experience.
      I don't think your friend meant to down you, maybe just educate the person making the comment about being positive helping you as far as surviving this.
      As others have said, the fact that she sounds angry may actually be fear.
      I got off Facebook because of those types incidents. It was actually causing me some stress.

      over 3 years ago
    • Statto's Avatar
      Statto

      I thank you all for the feedback.

      I truly understand and educated myself many years ago about the Susan G Komen, and all the RA RA Pink stuff and how little they actually raise. I have never bought into that. I have only done 1 walk a thon in my short Cancer lifecycle and that was for the American Cancer Society because I feel ALL Cancers need to be addressed. As i have lost many close friends and family to Brain Cancer, Colon Cancer, Ovarian Cancer, and Lymphoma. Through this person I have found out about these organizations like Metavivor and just wanted to help a group where I know it will make a difference.

      I also am not one of those people that think that the power of positive thinking or prayer cured me.

      BUT, I am a positive person. I walked into every Chemo telling them this DIET IS NOT WORKING FOR ME.I joked and laughed every chance I could. I made light of the lack of hair (no shaving) and I embraced my Chemo weekends long marathons of Keeping up with the Kardashians and Bigfoot Documentaries. (I know, I know). I went to my last Chemo all decked out, as you can see from my picture. I do that because that is who I am and who I have always been. It is the essence of who I am and was determined to not let Cancer take that from me. I also Prayed alot more and got closer to God. As I'm sure most of us do.

      I think what upset me most is she has a general disdain for stage 1, 2, or 3 and didn't take the time to get to know me or who I am. She assumed I was one of the RA RA Susan G Komen people. Not so.

      She is entitled to her feelings I am sure. And I would not want to walk in her shoes for 1 minute. But I really think we all need to be a little more compassionate and understanding. Whether you are stage 1 or stage 4.

      I will take your advice Geekling and send an apology to her. Because I do feel bad if I in some way hurt her feelings unintentionally.

      Thank you all again and thanks for this Forum. I don't know anywhere else I can go to share this and get good feedback from people that understand.

      over 3 years ago
    • Statto's Avatar
      Statto

      I also should say to merpreb that I understand the feeling guilty part, like something I did or didn't do caused me to get Cancer. I went through that, running over and over in my head what I did to cause this. Was God punishing me in some way. Did I make a choice to eat something, was it from being on birth control for 16 years, etc, etc, etc. I finally had to let go of that. I am not BRCA positive and I am the first in my family line to have Breast Cancer.

      Until we truly know what causes those little nasty cells in us to become little terrorist, and what makes 1 person that smokes all their life completely immune to cancer, and another have it. I don't think we can/should feel guilty. We know alot about Cancer and we are learning more every day. But we still haven't learned how to STOP THOSE NASTY LITTLE Cells from wreaking havoc in our bodies.

      over 3 years ago
    • Statto's Avatar
      Statto

      sorry and 1 more thing.

      Early Detection of a my FIRST and LAST ever mammogram is why I was Stage 1 and Not Stage 2,3, or 4. So I do still think Early Detection helps. If I were having this conversation today after my 1st mammogram I am certain I would be at a more advanced stage.

      I also am not naive to think those cells are totally gone from my body and may rear their head 1 day.

      over 3 years ago
    • Lindy's Avatar
      Lindy

      Actually some dear folks are stage IV at diagnosis despite doing all recommended screenings in a timely manner. My sister in law was thoughtful towards me as I blathered about my estimated life span and then she was diagnosed and never got a break. Terrorist is an apt label. I wish peace, love, and miracles for all.

      over 3 years ago
    • ChildOfGod4570's Avatar
      ChildOfGod4570

      Statto, I know exactly how you felt about wondering if you brought it on yourself. I tried eating healthy,exercising, doing everything I could to take care of myself, but I still wound up being the first and only one in my family to get BC despite being BRCA negative. I thought if someone who drinks like a fish or smokes like a chimney and dies healthy, then I had to have done something to bring cancer on myself. Was it too much time in front of a computer? Was it too many cookies? Had I done something to make God angry with me, and this was my punishment? My pastor told me sometimes these things just happen no matter what, and it's nobody's fault. Sometimes those thoughts try to resurface, but I amdoing my best to squash them. HUGS and God bless.

      over 3 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      It's hard enough to hear the word cancer, let alone stage IV. If it had been one more mean post, I'd say brush it off, she's having a bad day. But that back & forth thing...no. I was diagnosed stage IV endometrial in 2012. Am I sometimes a bit jealous when I see stage 0 or 1? Sure, I'm human. Do I regularly make a habit of bashing people who have less aggressive cancers? Heck no -- I think most people here can attest to that. Bringing someone else down doesn't build one up. Having a stage IV diagnosis is part of the reason I still hang around, even though I'm not in treatment. I like paying forward. I'm sorry this acquaintance doesn't have a bit of charity in her heart.

      over 3 years ago
    • gpgirl70's Avatar
      gpgirl70

      @Ejourneys - great post. I completely understand Stage IV person; however, I can't understand someone ruining another person's celebration. I was stage IIIc 16 positive lymph nodes. I thought I would be dead by now. I made the mistake of glancing at the stats and crumpled into a heap. I went to support groups filled with stage 0 and 1 folks. I was jealous, bitter, basically it brought out terrible emotions in me. I don't go to support groups and I became a much happier person. I'm so happy now for people who caught their cancer early because it improves all survival and recurrence stats. I take issue with someone saying they controlled early detection and intimating that those of us with advanced staging somehow dropped the ball (I may be misreading this). I had regular mammograms, breast MRIs and ultrasounds. So many I can't count. I had a mammogram within a few months of diagnosis. In addition, the mammogram I had at the time of diagnosis didn't show anything. Imaging doesn't always pick up cancer for those of us who had dense lumpy breasts.

      Anyway, I understand where the stage IV person is coming from and I hope that she can find something to help her handle her situation in a more graceful manner. It was not okay to turn your celebration into her platform.

      over 3 years ago
    • Fuxitol's Avatar
      Fuxitol

      I can empathize with being attacked. Some dummy told me I was overreacting to my dx. Hurtful. Whether stage 1 or 4, one can experience the gamut of emotions. I'm stage 1, and while I feel lucky and blessed, it doesn't mean I got off easy. Chemo put me in the hospital. Thousands of dollars in medical bills, lost wages from work, and now I have an horrendous radiation rash. All that to say, it's not like stage 1 is a walk in the park. I do try to stay positive...most of the time. It probably does help with stress and healing. But an angry person is going to hear the message as saying she isn't positive enough to heal herself. I've also spoken to women with bmx who told me it wasn't that bad, and I had crazy thoughts that maybe I should have done that instead. All of that to say, comparing isn't helpful. We all need support...not condescension or being dismissed, regardless of the stage.

      over 3 years ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Our support group collapsed over the last 2 yrs. and is no more (the center decided it wasn't worth paying an onc nurse to facilitate it). The dropoff began sharply after the facilitator who founded it--a 15-yr-bc survivor--died (shortly after a dx of a different cancer). At one point, there were so many that not everyone got a chance to speak, Seems most of the original members, some of whom were NED Stage IV and the rest all having had chemo, were put off by the few Stage I folks, as well as by the different temporary facilitators with whom they couldn't bond. Our final facilitator started last year, and she's great.

      But by then we'd dwindled down to a couple of Stage I-ers who either had chemo & lumpectomy or vice versa (and then me), plus a couple of women who attended only once; and one (triple-positive) who decided after one neoadjuvant chemo session to go totally alternative and use her 5cm tumor as a "barometer" of how well her herbs and extremely limited diet are working. (I feel so bad for her--at our last session, she was the only one of us who found herself constantly thinking about her cancer). lLife seemed to get in the way for every one of us remaining: religious holidays, travel, prior engagements/gigs, flu, orthopedic surgery complications and above all, elder care (we are the "sandwich generation"--and our "alternative treatment" friend is caring at home for both a father with dementia and a developmentally disabled brother, as well as working part-time).

      The core of us, who live w/in a 4-mile radius of each other, may meet on our own in a centrally-located coffee shop. Our facilitator suggested that we either see if Evanston Hospital will continue to let us use the room or check the two Chicago-area Gilda's Clubs. But I was blown away to find that the Chicago area. doesn't have any other solely breast cancer support groups--not even Gilda's Clubs, the Cancer Wellness Center, or other health systems' cancer centers (not even Lynn Sage or CTCA). The only one I could find was one way down in a SW suburb (ironically, at the hospital where my husband's a cardiologist) and meets every three months or so. The others are all for cancer-in-general, both genders.

      We're looking into the possibility of forming a Skype group.

      over 3 years ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      And as for the "early detection is key" premise, that might not always be the case. I was lucky--my tumor was found at IA on my 5th annual (before that, biennial) routine screening mammo (20 years since starting mammos, not counting the baseline one almost 30 yrs ago). But there was no sign of it a year earlier--and in the month between discovering it and removing it, it had nearly doubled in size.

      It is an absolute myth, too, that all invasive breast cancer starts out as Stage 0 DCIS or LCIS--they are different not just because they're found in situ but because they are histologically (cellular-type) different from IDC & ILC. Tumors can begin as invasive right out of the gate, without starting as DCIS that mutated into IDC. And though most DCIS never mutates, it's too risky to rely on those odds. Had I not decided to get my mammo a month early that year, my story might have been quite different. Had I decided to get it two months early, the tumor might not yet have been discoverable, and I'd have waited till 2016 for the next mammo, with potentially dire results. I have several friends who were Stage IV from the get-go--after prior negative mammos.

      Do I do "Pinktober?" Not the Komen, "save the girls" (or even more cluelessly offensive) crap. When I wear pink (generically pink clothes & accessories I own) it's in solidarity and remembrance--all year round. But in Oct. I'll buy pink-ribbon merch (e.g., my hospital system's semiannual Real Bears Fans Wear Pink T-shirts) only if the proceeds go to bc research--preferably all the proceeds, but at least the company's promised minimum with no cap...and these days I look for those supporting research into metastatic, because that's what kills (unless you live long enough with it for other natural causes of death to get you). Metavivor.org is a good place to start.

      It's a crapshoot, ladies & gentlemen. No judging, no smugness. S**t happens--and when you get right down to it, it's a s**t we all share no matter when we'd found it.

      over 3 years ago
    • ChicagoSandy's Avatar
      ChicagoSandy

      Finally, I should also mention that I had put off attending my first support group meeting for six months, because I too feared my situation was too trivial and my presence might have dishonored or upset those with worse prognoses. When I finally did attend, I found I was welcomed.

      over 3 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Statto, I'm coming in here at the end, but I tend to agree with Geekling. Although you have a right to say anything you want on your own Facebook page, and it would've been more polite if she hadn't said anything negative, your Facebook posts combined with the emotions of both of your health statuses were too much for both of you.

      Although not the "right thing," it sounds like she was depressed or angry about her cancer, and wrongly took it out on you. Although she was in the wrong, some people might have ignored her ugliness because of her health, wished her the best of outcomes, etc. (Of course, I don't know what the two of you said. . . . If apologizing seems too much, then just walk away as Geekling said.)

      FYI, I don't celebrate or even know when my cancer "anniversaries" are, so just take the above with a grain of salt. Best wishes for peace and empathy for others.

      over 3 years ago
    • JaneR's Avatar
      JaneR

      WOW! THis community is awesome. The way I look at it is that we have cancer, period. Stages help your treating physician and medical team. When I was diagnosed I basically had 5 years or less to live. By that calculation I should be on my last legs now. I too have been told my attitude has done a lot towards my continued "good" health and they are right. Will it cure me? No. But I am enjoying my time with my family and friends. Do I get angry? Yes. I will admit I get very angry sometimes at all the attention given to breast cancer, etc, but then I remind myself that the research being done there is also helping me. Yes I have a very rare form of cancer, but that's ok. Your attitude will help regardless of your diagnosis and it just takes longer for others to learn that. So congrats on your milestone and don't let others rain on your parade. As I tell my support team, We Got This!

      over 3 years ago
    • Statto's Avatar
      Statto

      wow I am overwhelmed by the responses, feedback and support! I spent 2

      over 3 years ago
    • Statto's Avatar
      Statto

      oops I was trying to say I spent 2 days crying and upset because there was no one to talk to about this that would understand both sides. Until I remembered WhatNext. I haven't been on here in a while.

      as an update I did send her an apology for hurting her feelings and for not being more sensative to her ongoing treatment.

      thanks!

      over 3 years ago
    • Statto's Avatar
      Statto

      and she also apologized

      over 3 years ago
    • lh25's Avatar
      lh25

      Statto, I'm glad you were able to apologize to each other!

      This site has been one of my best resources. I LOVE that we can express what we want here, and get support. I know I got tired of feeling like I had to be the poster girl for cancer, that I always had to be upbeat and all "I got this" for many in my life, nice to be somewhere were people can express the gauntlet of emotions we get.

      over 3 years ago
    • kalindria's Avatar
      kalindria

      As a stage IV person, I'm a little jealous but I would never attack anyone for being a different (better, lesser?) stage than mine. It's all cancer, it can kill us and it's scary as all get-out. Brave to you for your survivorship. I hope one day to be able to post a similar message.

      over 3 years ago
    • charnell's Avatar
      charnell

      Statto, I had a clean mammogram and other tests 2/14/14 less than 6 months later I was stage III. Did they miss something? I will never know.

      over 3 years ago
    • Lindy's Avatar
      Lindy

      My sister had breast cancer for ten years before a mishap caused undue pain & she insisted on care. When they looked back at her mammograms it was there all along. Fortunately it was slow growing, unfortunately I said so :-{

      over 3 years ago
    • Ejourneys' Avatar
      Ejourneys

      @Lindy, you and your sister are not alone. My tumor was visible on mammograms for at least a decade but was so slow-growing the doctor who finally flagged it said it was "standard of care" to grade it as benign, and she had felt it necessary to go BEYOND standard of care. Thank goodness she had. I asked her how often this happens (a false negative where the tumor is clearly visible) and she said no one keeps track. This is why I now ask for CDs of every imaging test I have -- because all those years I had gotten "mammogram is normal" letters. I write about it here:
      https://csn.cancer.org/node/294302

      over 3 years ago
    • Lindy's Avatar
      Lindy

      Ejourneys thank you for being our resident genius. BTW my darling granddaughter loved nativity sets so I let her help me make a simple one when she was a toddler. She loved telling guest who all the players were, particularly the baby genius.

      over 3 years ago
    • merpreb's Avatar
      merpreb

      No one, but no one has the right to shame anyone, especially when they are ill. It is such a vulnerable time both mentally and physically. IF you get harassed on FB then unfriend that person until the person personally reaches out to you. It doesn't matter if it's a family member or close friend. You have to protect your own well being and if this happens to you shut the door on it quickly. The more people who do this the more it will catch on.

      over 3 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      Merpreb, although I do agree no one has the right to purposely shame anyone, we on WhatNext have previously agreed that one of the unsung good things about having cancer is we've learned so much more about being empathetic to others, especially those worse off than us. They may not have a right to act up, but if they are hurting, good people try to understand.

      A person with Stage IV cancer may be planning their funeral. If not, he or she knows their life will probably be shorter than expected, so surely we can be more tolerant and extend an olive branch, as Statto did. (Both of them felt happier.) Best wishes.

      over 3 years ago
    • merpreb's Avatar
      merpreb

      I think that this comment implies that I am not empathetic. I was addressing the issue of shaming. I am very glad that resolved this.

      over 3 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      All of us have ways we can improve. One way is by giving others the benefit of the doubt and meeting them more than halfway.

      over 3 years ago
    • merpreb's Avatar
      merpreb

      I'm done with this Barb.

      over 3 years ago
    • DonnainRI's Avatar
      DonnainRI

      Cancer is cancer as far as the impact it makes on you when you hear those words. I do not care what stage you are, or what type of cancer you have. Learning you have cancer is a frightening experience. I had stage IIIA melanoma in 1976. I had a felolw RN tell me "that's only skin cancer." Seriously? The stats available back then showed that 70% of melanoma patients died! That has changed a lot, but what has not changed is that melanoma is a sneaky beast, and can show up again years later. I am now fighting stage IV. Stage IV is scary as XXX but I would never tell another cancer patient that she or he has no clue because they are "only" stage I. Many people with stage IV melanoma started out as stage I but many have also heard "melanoma is not really cancer" or "it's no big deal. They just cut it out." It makes me mad as XXX when cancer patients try to "one-up" someone else with the disease because theirs is more advanced or a less deadly type. If a cancer only kills 1% of people but you are the 1% then your chance of dying from it was 100%! I've known people that were in that 1%. Congratulations, Statto, on celebrating another year here on earth! You have earned that right and i hope you celebrate many more years!

      over 3 years ago
    • SpecialT's Avatar
      SpecialT

      I am a stage 4 survivor. Compared to some of the complications my friends of 'lower stages' experienced, I often feel like my bout was just a bump in the road next to theirs. I was relieved when treatment was over and excited to make the most of my second chance. I expected other cancer survivors to be the same way. But what I found was that if a person was miserable before cancer, curing the cancer is not necessarily a cure for a bad attitude. Just like treatment, we all react differently.

      over 3 years ago
    • BarbarainBham's Avatar
      BarbarainBham

      SpecialT, I totally agree with you, and I've had two primaries.

      over 3 years ago
    • DonnainRI's Avatar
      DonnainRI

      SpecialT that is a very good point. There's a misconception that anyone that's survived cancer is thrilled with life but that's not true.

      over 3 years ago

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