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I thought survival rates were better. Negative thinking.

blah333
blah333 Member Posts: 68
edited April 2021 in Young With Breast Cancer

So, having a scare about recurrence I am doing all kinds of research and basically rotting my brain and increasing my worry.

I have to say the mainstream media portrayal of breast cancer is that most people can live a long time now after it but then I see the rates of survival for some cancers and they act as though 5 year survival rate or 10 year survival rate is good. I'm 37... I still haven't accomplished anything in my life. If I were to get a cancer where I could maybe live 3-10 years (and with time consumed by treatment) I'm not sure what I would do or how I would spend my time. That's not long to build or create something meaningful. "Sadly" I did spend my younger days messing around or exploring, music, arts etc. Having to get a mastectomy at 35 I totally felt my prime of life is over. But I recovered from surgery and have been feeling good and was finally feeling optimistic about the future, but I've recently felt a lump and need a scan soon.

ANYWAY - based on the media I thought survival rates were at least 15-20 years for some invasive cancers. I do have to remember that the median age for breast cancer is 55, so people who are 65 stage II, living 8 years would put them at 73, which is not a bad lifespan. I wish I had been more cognizant of that fact I could have a deadline and premature death. I thought after my mastectomy I would be good to go for quite some time. Maybe I still will be but it's hard to feel optimistic with swollen nodes (since surgery) and a lump appears. I wish I had some kind of warning. My grandmother got breast cancer in her 70s, I didn't take it that seriously or think it was hereditary due to her age. But my mom got it at age 50... that should've been a wakeup call but I arrogantly thought my diet and different lifestyle would protect me, at least until I got older.

Being told prognosis is good, likely you'll live 5-10 years! But also having physical impairments, I'm not sure I would see the point. What a sad life. Breast cancer ads are so obsessed with mammograms and "survivors" but I guess they don't do an update that that survivor would have a recurrence in 3 years.

Perhaps I have been reading this board too much. I hate to see how people jump from one diagnosis to another then eventually Stage IV. I was looking through old threads of other people in the ""Not Diagnosed with a Recurrence or Metastases but Concerned" section, and multiple instances there were women getting a lump checked out which turned out to be benign, yay! But I see in their footer that they would become Stage IV within 1-5 years.

Anyway - I knew I would have to be monitored and screened and have ultrasounds but based on the %s DCIS/mastectomy I wasn't anticipating needing biopsies so soon, or having multiple scares. I could definitely "carpe diem" more but it's hard, and has been difficult (economically) for the past 10 years, since the recession. I tried to tell myself, why not just act as though I only have 10 years and really live it up, but it's hard to imagine what that means. I can easily enjoy small moments each day but I haven't accomplished anything. Not sure how to plan my life. I never have been, never had a dream job, never met a partner, I am kind of just a dreamer and wanderer. I thought I had time and that 40-60 was going to be really good. I've always liked older people and they made being older look easy. Now (at 37 post-surgery body) I can see why our society idealizes youth, and I wish I had enjoyed it more. "Take it day by day" doesn't work so well, I've done that and ended up nowhere.

How do I adjust my expectations that .. realistically I will probably die before my peers, I will probably have physical impairments (I do - minorly from swelling/rib issues but would get worse with recurrence) and how do you set goals if you have no idea how long you might live and that you might die before 50?

I hate living a degraded existence. (ALSO - how do you not compare yourself to all the naive people still running around mostly carefree and oblivious that a health issue could come out of nowhere and fuck them over?)

I know I'm being melodramatic if you look at my current only diagnosis but.... I'm melodramatic and needing biopsies/scans stirs up all this shit in me. How do I not let it stir me? Time will help but... lumps are real. This is my first chest lump after surgery.

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Comments

  • rubyredslippers
    rubyredslippers Member Posts: 94

    hi. I got bc at 38. As this forum is publicly viewable I’m not totally comfortable going into detail. Feel free to private message me if you’d like to talk.

  • santabarbarian
    santabarbarian Member Posts: 2,310

    blah,

    First, I think you are right that there is a significant amount of "pink-washing" in the public discussions of BC. That's why people who don't have it are so dim about the details (as we were prior to diagnosis). We just don't get it until we GET it.

    My situation is quite different from yours (I am 58) but what we have in common is the uncertain "sell by" date, due to cancer (the one I had is highly recurrent in the first 3-5 years). How do you plan for a longer lifespan, if lucky, AND ALSO live so as to make a shorter lifespan meaningful, if that is how it turns out?

    I was a literature major and will never forget the definition of a hero by F Scott Fitzgerald as "being able to hold two opposing ideas in one's mind, and still act." This is what every BC survivor has to do. It IS hard.... hence, heroic.

    For me, my priority has been spending meaningful time with the people who matter to me. Take the trip, show up at the reunion, connect with my kids, my old friends, etc. That's not hard to do.... just make plans, and keep them. Connecting with people we care about is (to me) the whole point of being alive. Much moreso than resume-building type activities noticed by the outside world. IMO.

    One very upsetting aspect of dying early, for me, is possibly missing out on grandkids. I was extremely fond of both my grandmothers and always saw myself in that role one day, so it's hard to imagine not having that experience.

    As it happens I have a friend who is your age, with 2 little ones (2 & 4 now). Before I was diagnosed I began dropping by once a week to give her a break and play w her kids so in case of emergency they would be familiar w me and I could help out. Well, once diagnosed and in treatment I decided to KEEP doing this, so that way, just in case I never got grandkids, I could still have the experience of "grandmothering" THESE kids. And it has been one of the highlights of my week to go rock a baby for a few hours or read books on the floor. I *cherish* that time. Kids don't give a F if you are bald as long as you engage with them and make silly noises and dangle them upside down! They *literally* jump up and down when I opened the door. And I just focus my mind on drinking in that joy, in and savoring it. Loving these kids is something I can do that has value and meaning. It has deeply mattered to my friend, and that love/attention/pleasure will be inside the kids forever as part of them, and it has been joyful for me. Win/win/win.

    So I would suggest, maybe don't focus on an accomplishments suitable to a resume, but rather on connecting and deepening meaning. Do things that feel meaningful to you. That could be anything... if YOU derive meaning, joy, or satisfaction from an act, do it. Nobody else has to think it "counts" but you. It can be making food for someone needy, fostering an animal, loving on some kids, creating something beautiful, registering voters, visiting the homebound, or whatever floats your boat. Volunteering is a wonderful way to give others happiness, and giving other people joy is a great way to swiftly feel satisfaction and meaning.

    At the same time, those acts may lead you to ideas that you can build on for the longer life span too. You may discover some longer-term life pathways through doing short-term meaningful acts.

    Last, though I am dinged up a bit, I am alive. Many aren't. If I don't realize I am very lucky just to be here, that discounts the experience of every person who isn't, who would LOVE to have traded places with me. So I think it's right to feel lucky, and grateful.

    My very dear friend has stage 4 lung cancer. She is FULL of joy. She elevates every room she walks into. She spreads her joy around. And she has BLASTED past all the medians (and even the maximums) for survival in stage 4. Now more than 4 years. She is my mentor! When I was diagnosed she told me: " the most important thing is to keep your mind on your purpose for being alive."

    So I guess my life's purpose is blowing raspberries on the bellies of little kids!

    I send you a hug!!!



  • mountainmia
    mountainmia Member Posts: 857

    SB, that's one of the best responses ever. Thanks for sharing your perspectives on this hard question.

    blah, all of us, if we're honest, have moments of melodramatic worst-case-scenario thinking. I don't have a lot of good advice for you. One thing I'd say is, there is nothing to do about how you spent time in your past. It's over and you can't change it. It will help you if you can focus less on it. And you don't have control over the future, so worrying about that also isn't very helpful. EASIER SAID THAN DONE! :)

    From my own experience I can tell you I got enormous help from a program called Mindfulness Based Stress Reduction, or MBSR. It is an 8-week program that helped teach me to focus on NOW. My local teaching hospital runs it here, but there are locations all over the country. I highly recommend it to everyone I know who spends time writing stories about the past and the future. The people who took the course with me dealt with a range of issues including anxiety, anger, grief, disappointment with health issues, etc. I think without exception we all had more productive thinking by the end of the 8 weeks. Here is a link to the wiki entry on it. I encourage you to see if it would help you, too.

    https://en.wikipedia.org/wiki/Mindfulness-based_stress_reduction

  • minustwo
    minustwo Member Posts: 12,989

    Yes SB - great post. And you too Mia.

    Blah - yes, as you said you're "rotting your brain". Remember a large majority of people who come to these boards for help drop off once they have benign results, or are finished with treatment and currently NED. You must look for & engage in something positive to do that is NOT related to continually researching the worst possible things that might happen. It's hard, but important.

  • mitziandbubba
    mitziandbubba Member Posts: 18

    What MinusTwo said. I know it is hard. I started my life after diagnosis living inside a breast cancer bubble. I worked, slept, did as much exercise as I could handle, and spent every other spare second I online researching cancer, talking to survivors, etc. I came to these boards before I ever signed up to post just to read and basically scare the heck outta myself. Oh and cry. A lot.

    My husband told me to please STAY OFF THE INTERNET. I had so much trouble listening but finally, I realized he was right. I only really came back to the internet post treatment.

    As time went on I found myself catastrophizing less. I'm a worrier by nature so of course I still do it but I am improving. I watched The Great British Baking Show during treatment and was inspired to cook more. I'm actually a far better cook now that I was pre cancer. I got really good with makeup. I spent a lot of time writing, reading, volunteering, hiking with my dog and my husband. And of course my work (which I love) takes me away from everything. I had great fun at work this past year despite everything!

    I struggle now a bit but there are not hours each day dedicated to cancer now. Now it is more like minutes unless I'm having a particularly bad day, which happens. :)

  • trishyla
    trishyla Member Posts: 698

    I'm not sure where you're getting your information about survival rates, but what you've quoted seem to be for stage IV cancer. Your stats show you at stage 0, technically not even a cancer. A pre cancer, if you will.

    I think if you were to look at survival rates for stage 0 dcis you'd probably find almost a 100% 10 year survival rate, and about a 99% 20 year survival rate, and about a 90+% 30 year survival rate.

    It's crappy that you have to deal with any of this at such a young age. My mother was 28 when she was diagnosed with uterine cancer. Boom, full hysterectomy and instant menopause at 28. It took her many years to get to a point where she stopped thinking about cancer every day. But she did. And she watched her daughters grow up, get married, have careers. She also got to watch her grandchildren grow up, and even got to know her great-grandson. It may not seem like it right now, but It is possible to live a long, full life after a cancer diagnosis.

    I know it's hard. That damned cancer radio blares at full blast sometimes. The only thing you can do is what Santabarbarian suggested. Find those things that mute the volume. Volunteer, start a new career, love someone with all your heart.

    Don't give up, sweetie. Just keep trying. It may take a while, but eventually you will find your place in this world.

    Good luck to you. Keep us posted, okay?

    Trish


  • siciliana
    siciliana Member Posts: 61

    Santabarbara, thanks for that excellent post! I love that you "grandmothering" those kids of your friend. How blessed you ALL are to have that experience!

  • EuroAmerican
    EuroAmerican Member Posts: 2

    Trish,

    Love your post.


    Blah,

    You are killing yourselves with worry. I remember feeling like you 4 years ago. I was diagnosed with 2 different early stage cancers in 1 year of age 39. No family history, no genetic link / that is currently known. Please tell yourself to stay off the internet completely. Or set up a specific time a day that you can be consumed by your cancer. The rest of the day / you have to live and enjoy. With this my life completely turned around. You are making yourself sicker with negativity. You need to live

  • blah333
    blah333 Member Posts: 68

    Trishyla this post is about possibly having a recurrence - not my original diagnosis. If my recurrence is in my chest wall that would put me at Stage IIIB or IIIC or IV. In my post I talk about reading the boards and how I see a lot of people in their footers jump from DCIS to Stage II to IV in just a few years. (Or even just DCIS to IV). I was remarking that I thought survival rates were better in general for later stage cancers. Based on how cancer organizations present breast cancer, you'd think outlooks have come leaps and bounds - but that's only true for early stages. Stage 3 and 4, prognosis is much worse than I expected. I even hear people say "you can live a long time with Stage IV" but 10 years seems lucky. As someone younger with breast cancer history, this is very dismal to me. I already know my supposed odds for DCIS but these repeat biopsies make me feel much less hopeful. I am pretty sure the 20 year survival rate for DCIS is not 99%... Of course these boards make recurrences seem more common than they are. I wonder what the REAL recurrence rate after mastectomy is. The 1-2% figure seems inaccurate and too low. I remember seeing my Tyrer-Cuzick score that assesses breast cancer risk AFTER my mastectomy and it was still like 35%? Removing both breasts only lowered my risk by 10% and I'm still more than 2x likely to get it than the average women who still has breasts? wow, depressing. (not putting tons of stock in that though, but I have to see this number on every clinician notes thing any time I have a radiology appointment).

    Sorry to be a bummer. I just wanted to make a thread where people could deal with these tendencies to go on a downward doom spiral of thought. It doesn't help that I will have to wait probably 2-4 weeks to figure out what is going on! Eventually I do get tired of reading. I've already scrolled through all the posts (I did not read them all) In the "scared of recurrence" and "2nd or 3rd cancers" sections and am now scrolling through the "just diagnosed with recurrence" topics - after that I will have nothing more to read!

    I don't think reading about it is making me sicker, but the stress feeling a bump and after hearing "CT scan" "it feels deeper, closer to the chest wall" - I got a cold the day after my appointment for the referral. My mom was diagnosed with DCIS 5 years before me. I didn't worry at the time because I was very healthy (still am but my diet declined slightly due to lack of money and a ..fuck it doesn't matter attitude though still healthy) and active, my thinking was "positive' "It won't get ME" yet making the right choices and thinking that way didn't save me. So I don't believe my worries will create a bad diagnosis either. But I do need to be more productive, especially if I'm "gonna die soon" lol. Or at least do an "early spring cleaning" for myself to make the next few months easier. I wish I could be energized by adversity like I used to but I've been pressed down for some time.



    santabarbarian - thanks for your comments. I was a literature major and will never forget the definition of a hero by F Scott Fitzgerald as "being able to hold two opposing ideas in one's mind, and still act." This is what every BC survivor has to do. It IS hard.... hence, heroic. This is interesting and useful to me... suppose I need to get more creative about this. I definitely need more nourishment/help of this kind from books/films. Though last year when I needed a biopsy I was obssessed with reading journals by people who knew they were going to die or had an ailment that would mean premature death. I am so morbid lol. Maybe it's astrology's fault though, I have a lot of planets in the 8th house.

    Regarding trying to live a meaningful life, I supposed I've been kinder to others, and helpful. I feel like if I'm "a waste" maybe I can at least give little pieces to other people to make their lives better OR at least express gratitude (via gifts or acts of service) to people who have helped me so those people do know that they mean something to me and I appreciate them.

  • mountainmia
    mountainmia Member Posts: 857

    blah, do you have an appt to get that lump checked? When is it? You haven't really made that clear. It's really really normal to have a freak-out while you're waiting for information. If you feel freaked out all the time, please get some help for it. Speak with a therapist or talk to your doc about an anxiety medicine, and/or find other ways to manage the stress like exercising more, attending more live music events, etc.

    Good luck.

  • santabarbarian
    santabarbarian Member Posts: 2,310

    Expressing love and gratitude to people we love is probably about the best thing any of us can do. Its one of the pinnacle things a human being is capable of: receiving and giving love. So I think that's a great place to start. If your time is shorter, you have richer relationships. And if your time is longer, you also have richer relationships! Writing a real paper & stamp letter is a great way to break through the electronic noise and connect, and express our deepest thoughts/appreciation.




  • "In my post I talk about reading the boards and how I see a lot of people in their footers jump from DCIS to Stage II to IV in just a few years. (Or even just DCIS to IV)."

    blah, you have to be careful with that. I can't tell you how many people come to this board with a diagnosis of "DCIS" and then talk about possibly requiring (or having had) chemo and lymph node involvement, etc.. Approx. 85% of IDC diagnoses include some DCIS, and the term "DCIS" seems to stick in people's heads when they hear it. So it's not uncommon for women to think that they have DCIS when in fact they have invasive cancer (or more specifically, a combination of DCIS and IDC). I used to try to gently probe about this but it's awkward to suggest to someone that they may not understand their own diagnosis. There was one individual recently who came to the site with DCIS and talking about having had chemo, and she did go back to read her report and found out that in fact it said that she had "ductal carcinoma" with no reference to DCIS. If it doesn't say "DCIS" or "in situ", "ductal carcinoma" refers to IDC. But many people don't know that (few of us start this journey having already been trained in breast cancer terminology, after all) and therefore misinterpret their reports. There is someone else who is on the Stage IV boards who's signature line says DCIS but who has mentioned that she had a microinvasion at the time of her first diagnosis. As someone who had that diagnosis, I know that we tend to think of DCIS-Mi as being DCIS, but it's really Stage I and while the risk of mets is low, it's there.

    That said, certainly there are cases where someone started with DCIS, had a localize invasive recurrence and developed mets. I can think of 3-4 people from this site who I'm familiar with who've had that happen. I'm sure that there are others. But then I've been here for 14 years and I've seen a lot of DCIS patients come through here. As for the 1-2% recurrence risk figure, it might be off by a percent (I recall one study that had the recurrence rate after a MX at 97%) but not more than that. Keep in mind that in North America 66k women per year are diagnosed with DCIS. Of those, approx. 1/3 have a MX. So that's over 20,000 women per year who face this 1%-2% risk, which means that of each year's cohort, there are 200 - 400 women who will have a localized recurrence after having had a MX for DCIS. Given that these recurrences might occur after 1 year or after 20 years, the number of women out there at any time who face this risk is in the thousands.

    My understanding of the Tyrer-Cuzick tool is that it is specifically for women who have never had breast cancer, including DCIS. Additionally, I didn't think that it takes into account that someone might have had a BMX, which would reduce future risk by approx. 90%. Maybe there is a different Tyrer-Cuzick model for women who've been previously diagnosed, accessing their risk to develop a new primary breast cancer, but I've never heard of it. I'd be interested to know from anyone if they are aware of such a thing.

    "I'm still more than 2x likely to get it than the average women who still has breasts?" Absolutely not, if you've had a BMX. This higher risk estimate for women who've previously had breast cancer applies to women who still have one or both natural breasts. You mention that you see a note to this affect (2x more likely) on reports from your Radiology department. My guess is that this is a standard statement that your Radiology department puts on all reports, to make Radiologists aware that the patient has a history of breast cancer and is therefore higher risk. Any Radiologist would realize, looking at you, that the statement would not apply because you've had a BMX.

    All that aside, low risk is not the same as no risk. Even if the risk of a recurrence after a BMX for DCIS was only 0.1%, it still means that 1 patient out of every 1000 will have a recurrence. Someone will be that unlucky person. And in reality, the risk is higher - it's 1 or 2 out of every 100 patients. In your case, with the one narrow surgical margin (1mm), your risk is probably higher than that. The risk is still low, but it's there.

    I hope that you end up landing on the high side of the odds, and that this turns out to be just a very scary false alarm.

  • illimae
    illimae Member Posts: 5,506

    We can’t help worrying, don’t be too hard on yourself, just don’t stay in dark places too long. I was diagnosed stage IV from the get go at 41 and once the shock wore off, I was able to go on enjoying life. I stopped working and go to the gym instead, I travel, do a 5k each year, cook, go to concerts, pretty much do whatever I want. It’s not always easy but I’m having much more fun than most of my friends.

    You’ll find balance, it just takes time 🙂

  • EuroAmerican
    EuroAmerican Member Posts: 2

    Love your post. I am from Europe but live in the US. I had to dig myself from the dark place. Because I have two children to raise. My 1st born has just been accepted to college in California near Palo Alto. And I plan to visit often:-) Wishing you the best!


    Bla,

    Sorry, I didn't mean to be insensitive. I was trying to help. Life is way to short. Wishing you many healthy and happy years. Both my mom (surgery, chemo, radiation) and her sister had breast cancer at the same time 20 years ago. Still both living and healthy. I am high risk for breast cancer. And being monitored by a cancer center. But of course I ended up with colon (stage 1) and melanoma (stage 0) in 1 year / 2 cancer surgeries. My MDs make fun of me that if I just erased year 2016, I am completely healthy:-)

  • ctmbsikia
    ctmbsikia Member Posts: 749

    I don't put much stock in stats. What's going to be is going to be. No matter what you do--to an extent. Yes, exercise has greatly helped me feel good. It has also landed me another biopsy due to an injury (at least that's what we HOPE it is!). When the negative thoughts come I do my best to accept those too. Yes it is much harder to do when you're younger. I'm only 58 and in my mind I probably should still be 40! Ha, but I have accepted I may not live a long life. If this is my last decade you can be damn sure I'm living it up. I've been biting my tongue and just loving and accepting all the people in my life. Have removed the toxic ones, or at least just deal with them when absolutely necessary. No more judging or complaining. Using my time a little more wisely. Of course it took some anger to surface first, and then my husband getting a terminal diagnosis to get here, so let me be a testament to tell you-----it can get worse. It may get worse, but truthfully we're all leaving here someday by an unknown cause! No one knows what causes all these cancers!!! We early stage gals just don't know who will recur and who won't. We won't know we survived BC until something else kills us. I told my husband I'll probably be right behind him. Not sure I should of put that out in the universe, but I did.

    Best wishes to everyone for good outcomes!

  • trishyla
    trishyla Member Posts: 698

    Caring for a loved one after a terminal cancer diagnosis is so damned hard, ctmbsikia. But it can also be a time of great joy and closeness.

    I wish you a peaceful, love -filled year, ctmbsikia.

    Trish


  • Yogatyme
    Yogatyme Member Posts: 1,793

    Listening to NPR today and they had a story about improvement in cancer survival and treatments. Breast and lung cancers have had the most improvements. Breast cancer deaths are down by 40% since the late 1990’s and lung cancer even more. The lung ca stats are thought to be a combination of better treatment and reduction in people smoking. Breast ca stats totally related to improvements in treatment. My BS told me this when I had BMX. She said that not many years ago they would have recommended that all the lymph nodes in armpit to be removed.....now just sentinel and maybe 1 or 2 more. For the men in our life, prostate ca has had an increase b/c they are no longer routinely screening PSA b/c too many men were being treated unnecessarily for prostate ca. Apparently it is a slow growing ca and men were being treated for it at ages when they were likely to die from something else before prostate cancer would become significantly pathological. So, now when they do get dxed, it is usually advanced.

  • blah333
    blah333 Member Posts: 68

    Yogatyme you prove my point exactly. The media makes it seems like things have improved by leaps and bounds, but they haven't, much. Just by one step or two. OF COURSE breast cancer deaths are down since the 1990s, because imaging improved and DCIS diagnoses have exploded, and yes, most people with just DCIS aren't dying. That doesn't mean that a lot more Stage 3 and Stage IV people no longer go on to die of breast cancer. Yes, we can get simple mastectomies now vs. radical mastectomies, and you can have a sentinel node removal vs. having to lose all of the axillary nodes - great. But women still only get to choose between removing part of the breast or the whole breast, radiation, chemotherapy. Hormonal drugs are newer but that seems like the only innovation, aside from making surgery less brutal. Most Stage IV people won't make it to 10 years, perhaps even 5. my impression from hearing little blips like you mention on NPR or the news made me have the idea that people could live longer than that nowadays with advanced stage diagnoses. But looking into it further I see that is not the norm.

    Honestly - to me it seems like breast cancer organizations/breast cancer awareness month and the way they portray it in "get checked" mammogram billboards and news blips about cancer [supposed advancements] exist just to make the rest of the population feel more comfortable with breast cancer vs. actually help people who have it or might get it.

    --------------------------
    I finally ran out of relevant things to read on this board (going through all of the posts). My eyes are tired and feel burned from the screen and my mind is finally exhausted or bored lol. But I will say ruminating can help me. I had to wait 18 days between my first "you will need a biopsy" and the results - and reading this board and about microcalfications made understand I was probably looking at DCIS. This time around from all I've read and drowned myself in reading, I realize --- wow this could be anything from nothing/scar tissue/fat to more DCIS, to IDC with or without lymph node involvement, or chest wall Stage 3b? or 3c or even IV. That is literally the WHOLE spectrum..... and I just won't know until I get more information. I suppose I feel more comfortable and less angry about the possibility of getting this thing removed and needing radiation than I did a week ago. But it's still annoying. You're not "supposed to" get breast cancer in your 30s and it's not "supposed to" come back after mastectomy, and only missing two nodes was "supposed to" have a low risk of lymphedema. Tired of feeling picked on lol. This board helps me put things into perspective. Though it also stinks trying to accept your current situation by bombarding yourself with "it could be worse" scenarios. I don't think that's any way to live life. Appreciate what you have because you could be living on a piece of cardboard on the sidewalk! sure, I'm glad I have walls and a roof but that's still bare subsistence living (my life is).

    ANYWAY end rant..... I need to feed myself other topics of thought. I spent all yesterday afternoon reading breast cancer posts in the archives. I am a maniac. Don't want to repeat the same today. The comments here have been helpful to me.

    MountainMia - unfortunately I have to wait 2 weeks for my CT scan. Hopefully they can tell me soon after that what's up, but needing a biopsy will take even longer for answers. But it should reveal some indication how serious or not this is.

  • Yogatyme
    Yogatyme Member Posts: 1,793

    blah, still no cure, but any improvement in mortality is good news. I agree that at this point, more advanced bc (and other advanced cancers) continue to be challenging at best.

  • blah, I get very frustrated with how positively (and unrealistically) breast cancer is presented in the media, so I don't disagree with you there.

    But that doesn't change the fact that survival rates for invasive breast cancer (i.e. excluding those with DCIS) have increased significantly over the past 30 years. And treatments have improved.

    There is nothing wrong with this being discussed, but of course it would be better if the information is put is context, explaining that the mortality rate remains much higher than most people understand, and that even those diagnosed with early stage breast cancer face a not insignificant risk.

    As an FYI, here are breast cancer survival rates from the latest available SEER report. I have highlighted the 10 year and 15 year figures. The longer term rates have improved significantly as well, but the most recent year for which 20 year survival is available is 1996 (i.e. those diagnosed in 1996) so it's not very current.

    image

    As for medical advances, try doing a google search on the number of new meds approved for treating those with advanced, and specifically Stage IV, breast cancer. Over the past 15 years there have been many more advances than just hormone therapy.

  • mountainmia
    mountainmia Member Posts: 857

    Beesie, I can't blow up the table enough to see the numbers. I'm sorry to ask, but could you give a 3-sentence summary? Thanks much.

  • MountainMia, here you go:

    For those with invasive breast cancer,

    - 10 year survival rate for those diagnosed in 1975-1979: 62.5%

    - 10 year survival rate for those diagnosed in 2006: 85.9%

    - 15 year survival rate for those diagnosed in 1975-1979: 56.1%

    - 15 year survival rate for those diagnosed in 2001: 80.3%


  • blah333
    blah333 Member Posts: 68

    It would be interesting to see this information divided between Stage 1-2 vs. Stage 3-4 over time.

    I admit I get too fixated on people's footers and their individual stories. I often say "oh my god!" out loud - how did that happen to her?! she went from X to Y in a year? how? or seeing a stage IV person hasn't been here in 2 years - "this person is dead...." I will look at their post history and it is so strange to see how people just trail off and disappear. Or mention being in hospice. Or stopping treatment. It's real...

    However I have always been a little obsessed with death and the finality of things when people are gone. There are some mass murderers I got intrigued by learning more and more about the event or wondering about their victims. There was also a big concert fire in the bay area some friends of friends of mine died in (36 people) - I was very obsessed with how it all happened, I watched the press conferences, I wondered the layout of the building, who burned to death or who died of smoke inhalation. The finality of death is fascinating to me. The reality of GONEness also - a person who once existed is now irretrievable. This is a little different than the threat of disease but in reading posts my worries about health + my fascination with death come together.

    OK, it's evening now I did avoid getting morbid in the afternoon.

  • minustwo
    minustwo Member Posts: 12,989

    blah - again - remember that the majority of people who post on this thread drift away when they finish treatment. They are NED and never come back. So you don't have much positive feedback.

    Hope you'll find a good book that has nothing to do with cancer & dive in to pass the rest of the time.


  • mountainmia
    mountainmia Member Posts: 857

    MinusTwo, exactly. It's a hopelessly biased sample here. People with DCIS who were treated successfully almost all go away, never to be seen at bco again. The ones you DO see are those that have had recurrence. Makes it look like recurrence is inevitable, when in fact, it's a pretty small risk.

  • blah333
    blah333 Member Posts: 68

    Trying to hang in there, best when I am busy. I had the weekend off and squandered it worrying, mostly. At least now I have less than a week until my scan (I was able to move it up 3 days). But I talked to my dad today on the phone and he expressed alarm about my mom's recent weight loss. I saw them at Christmas and I have never seen her this lean in my life. She has always been consistent, worked out regularly (very routine) and her weight has been about the same my whole life (with slight seasonal fluctuation). I think she lost maybe 25lbs last year (from 150 to 125 or so or 155 to one 130lb or so?) I thought she looked good, and seemed energetic as usual, wanting to walk around and explore and not sit around etc. But looking back I remember I hardly saw her eat much. My dad says she has been losing muscle, which is strange for someone who works out. She had DCIS in 2011 then again in the opposite breast 5 years later. Strangely, she is 58 and has not gone through menopause yet? my dad says she has been perimenopausal for years. ANYWAY ------- terrible me goes ahead and googles unintentional weight loss and of course most common cause of it is cancer. I have no idea why someone with a cancer history would wait this long about this issue to see a doctor. Normally she's super on the ball. She seemed into her weight loss, like it was caused by her exercise but now it's January, most people start gaining a few pounds over winter. I think she finally realized maybe something else is going on and luckily she has an appt at the end of the month.

    Now I feel more worried about her than myself at the moment. Breast lumps are serious but there are also several benign possibilities... Excessive unintentional weight loss seems more alarming and indicative of mets or cancer of a more serious organ (breast cancer is of course serious but breasts aren't that necessary for our bodies to survive) . Her dad had colon cancer and her brother died of Non-Hodgkins Lymphoma in his 40s. I was pouting about the possibility of not living a full lifetime, but I never pictured my mom leaving my life early (she had me young and is not even 60 yet). Not sure how I could handle her having an advanced recurrence or new advanced cancer, let alone if I also need treatment of some kind at the same time. Again I am jumping to conclusions but this all feels very heavy to me. I think it's even making me walk slower.


  • runor
    runor Member Posts: 1,612

    Blah, my husband rides a snowmobile up in the mountains in some extremely dangerous terrain. (stay with me, I think this is going somewhere). His riding buddy last year had a terrible accident. It was utterly unavoidable. When the conditions are all white snow you can't see the contour of the land. He drove off a cliff. His machine jammed into the snow below and he hit the handlebars, doing what we call The Scorpion. That's when your feet come backwards over your head, bending your spine into a shape that no adult spine should ever be bent into. He was hurt. His sled was damaged. Since then Hub has remarked, with some impatience, that his sled buddy no longer keeps up. He's dogging it. Will never take the lead in breaking trail. Gets into trouble because when the going gets tough he eases off the gas instead of booting it, which is what you have to do in many sledding situations, gas it to get out of trouble. And now sled buddy has put his sled up for sale. His sledding days are over. He knows he has, in his words, lost his balls. Tried to grow a set but couldn't. The sled is a goner. He has no stomach and no nerve for the sport anymore.

    As Hub was telling me this I was nodding. I know EXACTLY what this is. This is the memo:' Hey Dude, hate to tell you, but you are going to DIE!' Dear Hub has never had one of those moments where he thought he was about to buy the farm, bite the big one, drop dead. He is one of those blissful and annoying' ignorants' who do not know they are mortal. But I totally understand sled buddy throwing in the towel. But here's the thing, and this may be a bit peevish and self centred of me, but I thought, jeez, must be nice to be able to sell the sled and REMOVE the risk of death by cliff falling. He drove off a cliff, it made him mortal, he is going to make sure that never happens again by not sledding anymore.

    Can we do that? Can we sell the old boobs on Kijiji and dust our hands off, walking into the sunset knowing that we're good to go. Safe and sound? Took care of that problem? No! No and no! Unlike sled buddy who is safe from falling off a cliff if he never gets on another sled, we are NEVER safe. No matter what we do. Eat right,exercise, be nice, wear pink t-shirts, paddle a boat, donate your hair, wear donated hair, it doesn't fucking matter. You are not safe. You are a sitting duck. You can sell everything you own and give up all sports that happen in the winter on steep mountainsides and you are still a sitting duck. I thought, if your buddy lost his balls over a sled accident, what the fuck would he do with breast cancer? Pussy.

    In that moment I felt strong. I felt I had the balls of 10 men! Because here I am. Frantic, hypochondriac, swollen with lymphedema, all happy happy joy-joy as my vagina shrivels from tamoxifen and my joints hurt like hell, thinning hair...here I am with NO option to weasel out of this in any way. Every step I take this burden goes with me. It has made me view things in a different light. I feel utterly defeated and grossly inadequate for the task of carrying on life after breast cancer. Because nothing is the same. Everything is glossed with sadness and loss and such a sense of grief and sorrow. Yeah, Blah, the stats are shitty. Being here is shitty. The shadow this has cast on your life is shitty and you DO NOT have the option to bail out. But if you're here, it's cause you've got balls. No matter how miserable you rightly feel. Balls of steel. Like the women here who surround you. This will not help you feel better. But it's something important to know. That's what I thought about myself as buddy sells his sled cause he's scared. I'm scared too. Here I am. Every damn day. We live every damn day knowing that at any moment there's a cliff waiting for us. We keep on, because we're not pussy losers.

  • minustwo
    minustwo Member Posts: 12,989

    Runor - well said. Thanks for sharing.

  • Yogatyme
    Yogatyme Member Posts: 1,793

    blah, I hope your mom’s weight loss is not due to cancer. It is alarming but could be something much less concerning. I have a friend who had significant unexplained weight loss and it ultimately got dxed as severe hyperthyroidism and is successfully treated with Synthroid

  • B-A-P
    B-A-P Member Posts: 409

    Blah, I haven't read through all of the comments but Runor is right. We are mortal. All of us. Having cancer and surviving, doesn't mean that we are impervious to all the other things in the world that could take us. And of course I know you know that.

    The difference is . is that our mortality was made painfully obvious by getting a disease that most of us literally dread. We always believe that it happens to other people , but not us right ? And then it does. and then suddenly, we feel less invincible than we did before we were diagnosed. We know that It could come back. In my case, I didn't have the chance for it to come back.. I was stage four right from the start.. and at 30... and had a 3 year old... when I begged for years for someone to listen to me. Now that I'm NED, I'm afraid of recurrence too. But I try to remember how well I'm doing, and that every day that I wake up alive, is a good day, for I know that I could be living with mets still and not enjoying my time.

    I live with this. I live with the constant tests and monitoring, the menopause at 32, the AI's, the bone strengtheners, and do my best to lead a healthy lifestyle. Those are the things I can control. I try to live every day as normally as possible and try to really enjoy my time. I appreciate it so much more now . I soak in the little things, and try to treat myself a little more than I did prior to diagnosis. I was very restrictive because I always felt like I needed to save money. Butmoney isn't everything.

    I focus on making memories .. I'll never regret that because I could die tmr or in 50 years ( Ideally but not likely), and I could say that I Lived and loved. I don't live it up every day but I make a conscious effort to live on my terms :)


    I know this shit is hard especially in our prime. Our lives are supposed to just be beginning and now we have this constant worry of recurrence and dying from this disease.

    Just remember, Stats are information and not condemnation. According to the stats, I'm supposed to be dying this year.. but I"m not. I defied the stats. The Drs say I'm an exceptional case and they don't see many like me around. Especially with mets to the liver. Try not to focus on the numbers, and focus on you. :)