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Is there any hope for long term survival?



  • msphil
    msphil Member Posts: 185
    edited May 2016

    honey i am a 22yr Survivor Praise God u have to be Positive in your thinking n Always have HOPE thinking negative is not hood for your body your Spirit.msphil idc stage2 Lmast chemo n rads n 5yrs on tamoxifen.

  • ruthbru
    ruthbru Member Posts: 46,928
    edited May 2016

    With your diagnosis, you are very, very unlikely to die from BC EVER. I am nine years out, one of my best friends is 10 years out, another is 30 plus years out (her three children born AFTER her treatments have made her a grandmother several times over), my aunt had BC in her mid-50s and died at the age of 88 without ever having a YES, there is great hope for long term survival!

  • dtad
    dtad Member Posts: 771
    edited May 2016

    I agree with Ruth. There is a very good chance you will not die from this disease. Good luck and stay positive!

  • Shirlann45
    Shirlann45 Member Posts: 2
    edited May 2016

    Well, I am an 18 year survivor. I am not sure where you got your info, but it is wrong, of course depending on many things. Breast cancer today is around 83% curable. It is a rough year, very scary, but you should be just fine.

    Gentle hugs, Shirlann

  • tmh0921
    tmh0921 Member Posts: 518
    edited May 2016


    I was diagnosed with Stage 1B IDC 16 years ago when I was 27 years old. At the time, it was very rare for someone my age and it shocked the heck out of my pathologist and surgeon. I had a 1cm, grade 2, node negative tumor that was ER+/PR+.

    There are a LOT of long term survivors out there, you just don't hear from them because they've moved past treatment and cancer isn't so much of their 'everyday' life as it is when you're first Dx and having treatment.

    I have a coworker who is now 35 years out from a stage 2 ER-/PR-, 2 lymph node positive breast cancer diagnosis.

    We are people, not statistics. Google is NOT our friend 😄. All of my doctors told me to ignore any stats on the Internet as they are usually outdated and don't consider variations in cancers.

    BTW - I also had two babies after BC - both boys, now 13 & 8 years old. I plan to be around to spoil my grandbabies one day in the distant future 😉


  • farmerlucy
    farmerlucy Member Posts: 596
    edited May 2016

    I "heart" you Tracy/Tmh921!!!!!!

  • Srh242
    Srh242 Member Posts: 139
    edited May 2016

    Awesome Tracy!

  • traveltext
    traveltext Member Posts: 1,051
    edited June 2016

    By and large, if you have a low stage and grade of BC you will likely die of something else than the disease. The studies showing 70 percent survival rates are weighted down by late stage diagnoses. Obviously there's no cure yet, but good initial treatment is keeping recurrence rates down and those moving to stage IV are getting improved treatments to prolong their lives. When my mum died, aged 40 in 1962, after two years of treatment consisting of a radical mastectomy and super high radiation doses, it was the era before chemo and hormone blockers were available. Today, treatments are improving by the year, rather than by the decade.

    I'd like to point out, however, that males with BC (one percent of those diagnosed) have a worse prognosis. In a 2012 study that assessed more than 13,000 male breast cancers from the US National Cancer Data Base, men with breast cancer were found to be less likely to survive the disease than women. It is estimated that, this year, 2,360 new cases of breast cancer will be diagnosed in men in the US, 350 in the UK, and 150 in Australia. Around 540 men will die from the disease.

    Because breast cancer groups and charities are mostly fixated on using pink to denote breast cancer, the community is not aware that males get the disease as well. Obviously there's no screening program for men, so they tend to be diagnosed later, and at a later stage, due to their tardiness to present themselves, and because their health practitioners are not recognising symptoms of the disease early enough. And lack of male-specific clinical research and trials means that treatment for men is based on that for women.

    But things are changing, and activist male patients are building and promoting a consistent profile and narrative within all cancer groups for male breast cancer that enables a more balanced perspective and supports improved health outcomes.

  • mustlovepoodles
    mustlovepoodles Member Posts: 1,248
    edited June 2016

    Abbey, my aunt had BC at age 24 in 1912. Back then they took the whole breast, including the chest muscles. Auntie Gladys lived well into her 90s, about 70 years, and died of dementia. She never had radiation or hormone suppression, and she never had reocurrence.

    May you live long and prosper.

  • marie5890
    marie5890 Member Posts: 111
    edited June 2016

    This is an old thread from 2012. :)

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited November 2016
    So, here I am just shy of 8 years later and NO I have NOT HAD RECURRENCE... Well at least until I get checked next week.
    I wonder what happened to OP, she never posted again. Well, she did, but then she deleted her post. Natch, I wish her well.
    Here's what I can add...
    I left BC org and started my own list from friends made here because the moderators wouldn't relieve me from a forum troll. We had a couple threads here, picked up on Bottle O Tamoxifen and then started a sisterhood thread. Of those friends who stayed in touch, we pretty much mirrored the statistics. One had a brca gene, she had a recurrence, I believe it was a new cancer. Another BRCA gene friend found a metastasis when she went for recon. Both of them returned here for support. We lost the Stage IV friend. I don't know what happened to the other BRCA friend, she may have gone for the mastectomy and possibly the oomph as well, since she didn't the first time.
    As it happens, my best (male) friend's sister was dx'd, and had BRCA, and even though I had all this information ready, she chose a totally different tx than I suggested. One had such a low oncotype and a hard time with hormone therapy, she just had the mx and stopped tx. One had possible uterine cancer.
    We all wandered off to our new normal lives, which is all any of us ever wanted.
    I post to the list every so often, but the gals have mostly moved to Facebook. Some still check in here :)
    I don't like social media.
    I thought many times about coming back to post but additional to the bad feelings I have about how the troll was handled (and she/he may still be here and come for me again) I also kind of liked having a reason to move on.
    But I have my check up next week and I am losing my mind, started googling about long term survival rates and found this thread... And thanks to all who posted great info.

    I remember that it helped to hear from other patients who came back years later, so once again hoping that I can help others while getting help myself.

    So the bad news is that you might be like me, and some others who have replied, still pretty much terrified for the rest of your (probably long) life.

    I saw Bette Davis on TV last night. Did you know she also had breast cancer? She got it in her 70s, and it didn't recur but the TX likely caused her 4 strokes. I remember looking up famous women who had SFBC (that's what we used to call BC here, fill in your favorite expletives for the S and the F). Marianne Faithful had DCIS. I don't know that either of these references mean anything to patients today...
    A lot has changed in these 7 years for sure. I had to update my dx on my profile, I didn't know about stage 1a and 1b... I still don't know what the er pr Allred? Score is, and my % is listed as >90, but not as an integer.

    When I was 4 years out they came out with the study that showed that an additional 5 years of Tamoxifen reduced both all recurrence and all cause death...and although that's great news it's very strange. I forget which one was 15% and which was 30%, but they're both hella big numbers. But... Seriously, all cause death? Like somehow taking Tamoxifen helped women survive or avoid car accidents or falling in the bathroom? Statistics are all we have, it's all going to Vegas and bottom line is that it's never going to get to 0%, there's always the chance. OK, so we take our best shot based on the little we know.

    So I am taking Tamoxifen for the second 5 years. Fine. Except that my ONC and my Gyno want me to switch to AI. I think Arimidex. This because I am now post menopausal. But the study was done on both pre and post menopausal women using Tamoxifen, not an AI. They point to other studies that show Arimidex (I think that's the one) being better than Tamoxifen, but those studies were not the ones that went past 5 years. Also, as my ONC explained it, using his fingers pinching, it was only thismuch better. Also thismuch better was adding zoledronic acid. Seriously? You want to make a decision on my life expectancy based on an assumption about one drug based on a study of another drug for a benefit you can only describe to me as a gesture, not even a number? My number is 11%. That's the oncotype dx percent of distant recurrence for the first 10 years after DX. My other number from Predict (adjuvant online ) is like 94-95. Again, good numbers and again, no guarantee. After 10 years though, I don't find any numbers- although that study said those reductions in recurrences and deaths were in the second ten years after DX.

    Please forgive me if someone has already got the information I am missing.

    Please also correct me if I got this wrong.

    The best I could figure, because my ONC wouldn't answer me and I asked another ONC and they pointed me back to Adjuvant Online, incorrectly saying their projections go for 20 years, is that there were those 15 and 30% reductions in recurrences and all cause deaths *in the study group*. Who knows, maybe being on Tamoxifen really did help women (as only women were in the study group) stay safer in car accidents and bathtub falls. Tamoxifen was not even originally an anti-breast cancer drug. Maybe they survived accidents better because of other benefits from using that drug, it helps bones and I think was developed for heart disease. So if I am going to take the drug for another five years based on this study, it seems to me that I should take the drug that was used in the study. They're not even saying there is a significant improvement assumed in the assumption of changing to an AI. And it does make a difference which AI I remember from another study.

    Changing to Arimidex and starting zoledronic acid infusions opens me up to new side effects, I am comfortable with the SEs I already have. Which brings me to the next hurdle- they want me to have a hysterectomy, probably oomph. Their reasoning is that because I had very nasty fibroids and now maybe a uterine polyp, and I'm not using my reproductive system, and I might squeeze another % onto my survival expectation, and since I am becoming an old lady and will be taking AIs that may hasten osteoporosis then those infusions will be even more worthwhile.

    It seems that all that yammering about how it's my choice and my journey blah blah blah is BS. I can't get a dispassionate, empirical discussion of the issues. IMHO ONCs generally consider that they have done a good job as long as you die from something other than cancer.
    I know that the best thing I can do on top of taking Tamoxifen for another 5 years is to lose weight. There's some BIG numbers in increasing life expectancy and reducing recurrence there. I keep trying. I took aspirin daily for its 2% reduction (can't remember, was it 2%?) but my stomach lining couldn't take it.
    And yes, an oomph would significantly reduce not only SFBC but also the very scary ovarian cancer. However...
    I have read here stories of gals who had ovaries removed and still had to fight ovarian cancer because a few ovarian cells were left- discovered by MRI.
    I already have to have MRIs yearly (staggered with mammos, so I get screen checked every 6 months) and the worst part is the damn contrast, and my facility will do breast and pelvic in the same appointment, so I get that done anyway, plus I have the pelvic sonogram at every mammogram, plus I am not BRCA positive.
    So I am not in a hurry to have an oomph.
    I also disagree big time with having a hysterectomy for a polyp.

    Perhaps it is hard won cynicism but I'm pretty sure the reason they want me to get a hysterectomy rather than a hysteroscopic polypectomy is because it is so much easier and safer for THEM, not me. I had robotic laparopscopic myemectomy just before a doctor who is a gynecological surgeon's wife got stage IV uterine cancer most likely because she had a robotic laparoscopic hysterectomy without knowing that a uterine cancer was lurking in her uterus. The assumption is that if she had the hysterectomy with the uterus intact the the cancer would not have spread, and that may be true.
    So her husband started a big lawsuit and now it's quite hard to get robotic laparoscopic uterine surgery or maybe even hysteroscopic. Removing the uterus vaginally is such an easy surgery for surgeons, and so much less likely to spread a hidden cancer.
    But... Uterine cancers very rarely, I mean, like less than thismuch by a lot grow in a fibroid, and I don't believe they grow in a polyp,ever, and I only need the polyp removed and it's inside my uterus so couldn't spread to my body cavity, only inside the uterus, which, if it gets cancer, then they can take it out...
    But if you take out my organs, you can't put them back.
    I know prolapse is rare. But tell me again why I am risking it?
    Why am I taking on major surgery with all it's risks and a weeks stay in hospital with all those risks and a month of recovery, the changes that happen to a woman when she loses her reproductive system, when I could have outpatient surgery and be done with this in 90 minutes and go back to my life as usual? It's an asymptomatic polyp.

    And then I'd have to change to an AI and infusions.

    Mind you, I have lots of friends who had oomphs and are on AIs and taking infusions.

    So my ONC doesn't want to talk to me. I'll find out next week if the polyp grew, if it did I agreed to talk about surgery, but the only surgery I'll consider is removal of the polyp.

    Every 6 months I go out of my mind. Every 6 months I get checked. In 2015 I got checked in January, and through nasty twists of fate ended up finding out in a bad way that I had "bi rad category 0", which ultimately meant I had a 25% chance of recurrence, locally, either the same cancer or a new one, in the same spot. I needed an MRI biopsy to determine. I can't say it was a cruel circumstance, because none of this is anywhere comparable to the cruelty of cancer I have see on these pages and elsewhere, but it didn't help that there were several snow storms that kept my doctor from getting to her office in NYC while I couldn't get a doctor to do it in Philadelphia, and the insurance companies unhelpful actions... Anyway I was sure it was going to come back positive. I was making arrangements for child care and doing the research - I had a vacation scheduled I couldn't cancel and because of the biopsy not allowed to swim or bathe in Jamaica, and I told the doc before I left I would not take messages because this could be the last days I was not an active cancer patient( and I couldn't figure out how to only get GOOD news).
    It wasn't cancer :)

    And then I had to have another MRI in April to create a new reference baseline with the scar tissue that formed after the biopsy. So I didn't go again in June for the usual 6 month MRI check, and returned in November for mammo-sono. That's when they saw the polyp.
    I informed my Gyno, promised if it grew to discuss surgery. It won't be hysterectomy or oomph as I have said, so that will tick her off if it goes that way.

    In June I found a mole on my 8 year old son's head that was scheduled for biopsy and the very next day he broke his arm scootering. I got so caught up with that and still had so fresh in my fear-mind that whole bit rad category zero scare I thought it had been this year, not last year. (son is fine, biopsy negative, arm healed)

    In September I went for my Gyno appt and that's when she pointed out I had missed my 6 month check up. !!!! Oops.

    I was away for a month, got the bone scan and physical done (all good, yay!) and now next week is the mammo/sono, and by which I also mean US/TVUS...

    I have been trying to figure out why I am sort of depressed. I feel fine. I have plans. I lost a very close friend-he was 90. My son is great. Our life is good. This election has certainly stressed me out, I have VERY strong political opinions and have been working for my candidates and seeking out the news and I did think maybe that was the cause... But now... I think it's SFBC.
    I think I have been happy and free for most of a year, and I may have forgotten how I lost my mind every 6 months for the last 7 years the same way I forgot to get that damn MRI in June.

    So there you have it,it took me 3 hours to write this, and I am thankful to this forum for being here, I don't know what I'd do without it, without you.

    I came upon this thread looking for help. I started posting thinking maybe I could help others. I said the same as others did (they were far more succinct!), that stage I means SFBC isn't going to kill you any time soon, that you must learn to be discerning about the information you read on the Internet, even here but less so...
    And that the likelihood is that the only effect SFBC is going to have on your life after this one year of major suck is the fear, and the friends you made- and lessons learned.
    Oh and one more thing, you get to play the cancer card any time you like, you earned it.

    Ok, indeed I owe you one more thing, I promise to come back and post my results here.
  • Lucy55
    Lucy55 Member Posts: 2,703
    edited November 2016

    Heidi ..Hi ..Just going to say that I had a LAVH + BSO two weeks ago , and the recovery has been very easy ..I stayed in hospital 2 nights ...but that was really only because I didn't come out of surgery until 7.30 pm the first night ...and haven't taken a pain killer of any kind since coming home ...Not trying to talk you into the operation , only letting you know in case you do decide to have the surgery ..I know I was very frightened beforehand...but didn't need to be .

    Also wondering ...Did the doctor say the surgery would squeeze an extra percentage point off your risk ..even having it after menopause ..??

    I wish you all the best (( Hugs )))

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited November 2016
    Hi Heidi and YAAAAAAAY for the easy recovery!!!!! I am (gratefully) out of the loop so I don't know what an LAVH or a BSO is... Either I used to know or maybe they are something new and hopefully better? I get it though that it's something like an oomph ( removal of ovaries and uterus I think?). TAKE IT EASY wouldja please? My friend (from here) was gardening the day after her oomph because she felt so normal but she wished she had taken some real rest, so don't overdo if you're feeling good please :)
    THANK YOU for the words of encouragement.
    Just unbelieveable the generosity of spirit from fellow sfbc patients... That you'd take the time to help someone 8 years out....

    On your question I am less helpful, my onc hasn't spoken to me about this - or anything -since I saw him in 2013. I don't know what his deal is, like I offended him by questions? He is an old family friend first, I had known him before he became my onc and he was my onc for 4 years, not like this was new behavior on my part. No idea. Anyway, if I could remember what he said it would be 3 years old, and I can't remember, plus I don't think I got the figures from him, I think I got it researching.

    Hmmm which surgery and which cancer risk? Must be about the oomph, but I am sure you get the reduction in risk from an oomph on all cancer fronts,yes? And yes I do believe it reduces even post menopausal risk, for all cancers... A lot. More than a percent for sure. Especially hormone positive cancers. So you absolutely have all that going for you.

    I used to be great at researching this stuff, I will go see if I can find some links...
  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited November 2016
    Just started and basically they are saying if a woman has an increased risk of ovarian cancer -like a brca gene- it's definitely going to help, like a 40% reduction ovarian cancer, which they still have no real way to dx before its too late. The study I read though kept talking about an oomph WITH estrogen therapy, which last I heard, we can't use... But there was some question about that.
    Depends on those risk factors, and age.
    I'll look more for you if you like? The pre/post menopausal issues had to do with heart disease and such, but either pre/post definite big reduction in cancer risk :)
  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited November 2016

    ALL GOOD results. :)

    Polyp probably should be removed, but as she explained it (and she is a cancer hunter without parallel) the chance of it being cancer when it doesn't grow or bleed is crazy low. I didn't know that was the issue. She also thinks a hysterectomy/oomph is not indicated, as I don't have BRCA. I will get it removed, not a big deal. Whether to have an oomph depends on each situation. She also didn't make a pitch for AI. So I am floating on air. I love my life. Going back to making plans for the future.

    I'm kinda glad I skipped that exam, I had a whole year of ignorant bliss.

    So... this is long term survival. Different for all but in my case, it means I go nuts every 6 months. Or as my dear friend (male, throat cancer, misdiagnosed :( died a couple years ago) used to say, we live for 6 months at a time.

    Rachel- out :)

  • msphil
    msphil Member Posts: 185
    edited November 2016

    sweetie i am a 22 yr SURVIVOR Praise GOD HOPE N POSITIVE thinking .msphil idc stage2 Lmast chemo rads 5yrs on tamoxifen. God Bless UD ALL.

  • meow13
    meow13 Member Posts: 1,363
    edited June 2019

    Bump, interesting thread!

    I would like to have another uneventful 20 years!