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Life expectancy for grade 1 cancer without treatment?

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sos1125
sos1125 Member Posts: 6
edited March 2018 in Just Diagnosed

Hello, I've been preparing for surgery for my apparent grade 1 breast cancer, and surgeon is futzing around with my surgical schedule and creating all sorts of stress, and I am absolutely dreading the side effects from the anti-hormone medication I know will be prescribed, and it just occurred to me to wonder... has anyone here researched how long it might take to actually be really ill from grade 1/stage 1 breast cancer? I have an 8-year-old I am determined to raise to adulthood, so was figuring to get treatment. But it also has occurred to me that I am going to die of something, and if I could live another 15 years or so with reasonably good quality of life, I would be okay with just letting the breast cancer progress and not going though all the hell of breast cancer surgery and treatment. Has anyone considered a non-treatment option? Has anyone researched life expectancy with grade 1/stage 1 breast cancer and no treatment?

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Comments

  • Skittlegirl
    Skittlegirl Member Posts: 138
    edited December 2015
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    Unless it's strictly IDCS, I would not do watchful waiting. Once it's invasive it's time to fight it, IMO. My oldest is turning 8 in a few weeks. For me, it's not just seeing her into adulthood, but seeing her married and maybe even seeing my grandchildren, so that's like at least 20 more years that I need. One year of treatment for many more years of being there for my kids is doable.

  • patoo
    patoo Member Posts: 5,243
    edited December 2015
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    Hello sos1125. Sorry you have to join this team of wonderful people but glad you found these boards to ask questions, get answers, rant if you want or just browse.

    You say you are determined to raise your 8 yo but are willing to take the chance of not having treatment. BC affects all of us differently and no one can give you stats or answers to whether you will still be around with or without treatment. Many of us just plan on throwing everything possible, or available, at this beast. Others follow complementary or alternative plans which you can also research. It is an individual choice and you probably cannot find any research that can give you the assurance you want to be around until your child reaches adulthood. Yes, you are going to die from something, we all are, but you will need to do the research to find out if no treatment at all with the possibility of progression will be uneventful or might it be horrific and your child will also have to live through it. Please don't misunderstand, I am not trying to persuade you one way or the other, but think about it from all avenues.

    You say you are afraid of the anti-hormonals but there is no guarantee you will have any of the SE's or that, if you do have them, they won't be manageable. Many of us, myself included, did not experience bad SE's. Yes, many who post have had SE's and had to stop or change meds and that may be what you would have to do as well instead of not trying them at all.

    I understand your fear but doing nothing at all, either standard care, complementary, alternative, is definitely not the answer.

  • etnasgrl
    etnasgrl Member Posts: 185
    edited December 2015
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    My diagnosis is very similar to yours. For me personally, I can't imagine just sitting back and not doing anything.
    True, some of the treatments are scary and can come with various side effects. But not even giving the treatments a chance simply because you may have side effects and don't want to deal with them? No, I couldn't do that. I will do ANYTHING that my doctors tell me to do, if it will help destroy this cancer. If I end up dealing with side effects, I will handle it then. I will talk with my doctor about what I can do to lessen the side effects. If they still don't lessen and my quality of life goes down hill, I will discuss with my doctor trying a different treatment option. In other words, I will cross that bridge if and when I need to.
    Perhaps I will be fortunate and not experience many side effects. However, I won't know until I try the treatment.

    I have an 11 year old and I plan on being here for him, (and the rest of my family!), for as long as possible! Not just 5 years, 10 years, 15 or 20.....but another 50 years would be great! I want to see my son grow up, go to college, get married, and have a beautiful life. I want to meet, hold, adore, and love my grandchildren! I want to grow old and gray with my husband. I want to live this amazing gift I have been given, life!!! I don't want to just give up before even trying!
    Cancer steals a lot from us.....but I would NEVER let it steal my hope or my ability to do anything and everything I can to get well.

    Please, please, please think about fighting this!

  • 614
    614 Member Posts: 398
    edited December 2015
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    Grade 1/stage 1 cancer has an excellent prognosis with treatment.  I do not know any odds if you choose not to be treated.  However, why take the chance?  Have tx and be around for your child and any potential grandchildren.  If you have se's than change the meds to a med that you can tolerate.  I am taking arimidex/anastrazole and I do not have side effects.  Good luck with your decision.  Do what you feel is right for you.  BC is scary.

  • GG27
    GG27 Member Posts: 1,308
    edited December 2015
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    100% agree with Patoo. Doing nothing, I don't believe is the answer. The Cancer agency pharmacist where I pick up my anti-hormonals was just telling me that 95% of women have very few if any side effects. So if you're reading about these issues, it is probably the 5% who have had problems. like me. And I can tell you that I have been able to change manufacturers & have no problems now.

    You wrote above....

    "I would be okay with just letting the breast cancer progress and not going though all the hell of breast cancer surgery and treatment."

    Please think about doing something now while it's very treatable & dare I say curable? whether standard treatment or alternative. I just lost my best friend to cancer & she threw everything she could at it, she would have been happy to have it start at stage 1, not stage IV. The last year, she could no longer drive, she was in great pain even with narcotic drugs, couldn't walk or get out of bed without help, Good luck with your decision but hope you rethink this. GG

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,956
    edited December 2015
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    Hi,

    I understand your fears and the emotions connected with a breast cancer diagnosis. However, I think you need to do some research to truly understand the facts of what you're dealing with. Surgery and treatments have improved greatly and are not hell. Stage I, grade 1 most likely puts you in a very favorable position. There is an excellent chance that treatment will keep you cancer free in the future. I had a bilateral mastectomy (with one step recon) and it was not even close to "hell" , nor is any treatment I've had. I have been on hormonals for over 4 years and manage the side effects fairly easily. I lead a full and (almost) normal life and I am stage IV.

    You will not die from untreated stage I breast cancer. It has to metastasize to other parts of your body, usually lungs, liver, brain and bone, to kill you. Treatment may not always be pleasant, but it's nothing compared to the true hell of dying from metastatic cancer.

    Please educate yourself about the position you're in (which is very good!) and then think of your 8 year old and about how he/she needs to have you around for a very long time!

  • ceanna
    ceanna Member Posts: 3,120
    edited December 2015
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    sos, I understand your frustration with delays and rescheduling, and wonder if that has led you to your current questioning. I, too, had Stage 1/Grade 1 ICD and had a lumpectomy. The surgery was not difficult or painful, definitely not hell, and I was back to my normal routine within 2 days, with limits on lifting, etc. The goal is to get the cancer out, then you will be in a better position to determine if you and your doctors choose radiation or hormone therapy. Everyone encountering BC needs individualized treatment and based on your doctor's recommendation, it is still your choice on what additional treatment you select. Waiting and doing nothing isn't something I would choose--talk about raising the stress level. Take the first step of surgery, then decide the next steps as needed. You can always decide to start and stop hormone treatment. Let us know how you're doing!!

  • everymoment
    everymoment Member Posts: 6,656
    edited December 2015
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    Hi sos1125: Another consideration is that after surgery and you have the final diagnostics on your tumor, then a medical oncologist will use the Adjuvant online tool to provide you with probabilities of 10 year survival with no treatment and with one or more treatments. Having that conversation with a MO is valuable in providing some answers to your concerns. Unfortunately, even though the tool is online you will not have access to it without a health care provider who subscribes to it, reviews the findings with you and jointly decide on treatment options. I wish you the best in this most difficult and confusing time and as others have said, there is no rush. As you already know, medical decisions and appointments move slowly. From the time of my surgery to seeing a MO was about 6 weeks, so I had lots of time to think.

  • meow13
    meow13 Member Posts: 1,363
    edited December 2015
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    I don't know of any statistics of doing nothing but I have heard 70 percent are cured with surgery alone. But with breast cancer you are never sure if you have been cured.

  • Sjacobs146
    Sjacobs146 Member Posts: 155
    edited December 2015
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    sos1125, a dear friend of mine died from metastic Breast cancer this past summer, and let me tell you that the treatment I went through was a picnic compared to how.she suffered. I was back to work two days after my lumpectomy. Chemo sucked, but I am basically back to normal now. I did the radiation treatments during my lunch hour. I have been taking tamoxifen since April and have no SEs except for the occasional hot flash. I know many women who have had treatment and are basically back to normal now. I know that there are a lot of horror stories on these boards, but there are a lot of success stories too. Until you have the surgery, you really won't know what comes next

  • dtad
    dtad Member Posts: 771
    edited December 2015
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    sos125 Hi there. Your question is actually valid IMO. Im 62 and was diagnosed in March with Stage one bc. I actually thought about doing nothing too. Some of that thought process is denial. I decided to have the most aggressive surgery but refused any other treatment. QOL is very important to me since Ive had a debilitating autoimmune disease for 15 years. Its a very personal decision. I don't think you will find any studies on this subject since almost all women do treat their bc. I would urge you to at least consider surgery if you decide to forgo other treatments. Good luck....

  • sos1125
    sos1125 Member Posts: 6
    edited December 2015
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    Thanks for the input, I have thought along this line. But also occurred to me that if cancer is slow growing and with the stress of treatment pursuit and all the focus I am putting on cancer, a heart attack is likely to kill me way before the cancer ever would. Of course I realize there's no guarantee I would get enough good years to raise my youngest, but if I could at least accomplish that, would be okay to not have incredible longevity. The cancer has definitely made me think about my own mortality and not be so worried about reaching extreme old age.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,956
    edited December 2015
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    sos,

    I don't mean to belabor the point, but you appear to have a very treatable cancer. I understand thinking about the possibilities, but assuming the final pathology after surgery is the same as your biopsy pathology, you have every reason to believe that , with treatment, you will live a good long life.. None of what you will go through during surgery or treatment will be hell. It won't be a party but it's quite manageable

  • MusicLover
    MusicLover Member Posts: 777
    edited December 2015
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    At a minimum you should do surgery, there is a doctor who does laser surgery and I have heard great things about him. There is also a doctor performing a procedure with liquid nitrogen to kill the tumor, not very invasive. You should look into those. The therapies that follow surgery do not increase survival by much so you would be pretty safe with just surgery. Best wishes.

  • sos1125
    sos1125 Member Posts: 6
    edited December 2015
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    To the posters who lost loved ones to stage IV BC, thanks for sharing your stories, and I do understand. I also lost a dear friend to stage IV--this after 15 years of being supposedly cancer free. Her last five years were really tough, she fought like hell to stay alive. I know cancer progression can be hideous, just weighing all the options. Will probably end up at least getting surgery as I am too much of a worrier, but if I had the ability to just not dwell on the cancer I suspect I would do just as well without treatment in the long run as the stress is probably causing it's own damage.

    Thanks again to all who weighed in, it really is hard to find good stats on average longevity with no treatment or even with alternative treatments. Quality of life means a lot to me, I would rather be "the usual mom" to my kids as long as possible as opposed to "patient mom" who is worried and harried and thinking about cancer all the time.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,956
    edited December 2015
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    It's hard to find good stats on average longevity, without tx, because patients with favorable diagnoses do not forgo treatment. As for stats on alternative ttratment, surely you know that alt treatment is anecdote driven. Trials and science based research are rarely seen.

    I am a mother and an elementary school teacher. There is no "usual" mom. Life has it's ups and downs and all families get their share . Sparing children from the less pleasant realities of life, the ones that can't be avoided, is not realistic. Helping them learn to cope, become resilient and persevere is giving them life skills

  • summerangel
    summerangel Member Posts: 182
    edited December 2015
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    I had grade 1 tumors, too. I did surgery, tried Tamoxifen but quit because of very severe side effects, and now I'm done with treatment (except for a minor reconstruction surgery tomorrow). I agree that it's worth at least doing surgery, it may be all you need. Also, I feel great physically, no problems at all. My fake boobs are a bit different because the whole area is pretty numb, but there's no pain at all.

  • lyzzysmom
    lyzzysmom Member Posts: 285
    edited December 2015
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    I quit the hormonals as I am older and qol is all important but lumpectomy was a breeze compared to biopsy and rads was fine, just a bit of a nuisance and some tiredness and soreness towards the end but nothing bad! I suffer really badly with stress every day but was ok with the treatment. What I am trying to say is it may not be nearly as bad as you think to start on a treatment plan with surgery and see how you go from there



  • patoo
    patoo Member Posts: 5,243
    edited December 2015
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    One of our sisters on BCo would always post, 'SE's are easier to treat than a recurrence of BC'. I think the least option for you to consider is the surgery. After that you can decide whether to try further treatments. As you see above, some of our friends did try the hormonals and opted to discontinue which is always an option. If you do nothing will you ever be able to not think about the cancer that would continue to reside in your body? That knowledge will not leave you, causing stress in itself which may feed your tumor as well.

    Whatever you decide is your decision alone and we are here to support you.

  • muska
    muska Member Posts: 224
    edited December 2015
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    Hi Sos, I think you are probably spending too much time reading side effect stories on this website :-) As the others above have said, you have excellent prognosis if you get treatment. I am not sure how old you are but I suspect you are quite young by my standards. I went through the most aggressive treatment I could get after diagnosis at 54 and I have very few side effects if any. The vast majority of women taking hormonal treatments do not have significant side effects, they just don't post often on this website. I think that about 25 - 30% get some side effects from hormonals but that means that 70-75% don't. You are never going to know how you react unless you try.

    Good luck with your surgery and don't overthink it.

  • divinemrsm
    divinemrsm Member Posts: 6,154
    edited December 2015
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    sos, something many people don't realize is that breast cancer does not follow a linear path. By that, I mean that just because someone is diagnosed with stage I bc does not mean that if left untreated it would then go on to stage two, then on to stage three and end with stage iv. It can jump from stage I to stage iv without any kind of warning. I am writing this in case you think someone diagnosed with stage I breast cancer can leave it untreated and not progress to stage iv breast cancer for another fifteen years or so because it must progress through the other stages first. That is not the case. This disease is unpredictable. Even with the most aggressive treatment, a small percentagewomen diagnosed with stage I breast cancer will progress to stage iv and no one can say which women that will be.

    About 80% of women with stage iv bc do not live past five years. So it's possible for a woman to be diagnosed with stage I bc, not treat it, it progresses to stage iv and she is dead within five years. Just giving you something sobering to think about. Imo, not getting treatment is like playing Russian roulette

  • bluepearl
    bluepearl Member Posts: 133
    edited December 2015
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    I had good stats like you sos1125. I only did surgery for a grade 1, 1 cm breast cancer and didn't take the anti-hormone treatment. Two years later, a small 8mm GRADE 3 showed up, and it was then I decided to take the anti=hormone treatment. Tamoxifen was a breeze...not a thing to worry about. Went on letrozole and have joint pain but tylenol takes care of that. What is wrong with stopping your cancer now, while it is still stoppable? Surgery. Radiation if you choose lumpectomy, Then anti-hormone. You reduce your chances 50% which are pretty good odds. If I had taken my anti-hormone the first go, I am never have had the second one. This is all VERY doable. Do not let fear keep you away from standard care. It IS possible for you do do fine without anything but surgery...NOT fine if you don't do at least surgery....it is an awful death. Add to this, even grade 1 tumours can have high oncotypes, meaning they can spread quickly and once out of the gate, in your body they can change into grade 3 or worse, become hormone negative. Do all that you can! I think you are slipping into both depression and denial. As said above, cancer is unpredictable but the stats favour treatment. If your cancer is near the skin, you could end up with a fulminating tumour, something you never want to get to see or smell PLEASE, PLEASE seek the proper treatment and you have the best chance with such a treatable cancer to see your grandchildren get married! I feel so damned bad for the stage 4's who only wish they had this option but the majority have stepped up to the [late and gave it all. DO NOT LET THIS VERY CURABLE TUMOUR GO WITHOUT TREATMENT. PLEASE!!!!! (((((HUGS)))))

  • chisandy
    chisandy Member Posts: 11,385
    edited December 2015
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    Nip it in the bud with at least lumpectomy + radiation. And unless you already have heart disease, at your young age you are far likelier to die from an untreated cancer than a heart attack--and progress to stage IV much sooner at that. An untreated breast tumor doesn’t just metastasize, it fulminates too and takes over the breast--painful and disgusting. You can spare your kids the trauma of seeing you go through that if you remove it now and get systemic therapy to keep it from cropping up elsewhere. Much easier to explain why you’re getting the side effects of treatment, and that it’ll get better, than why you’re in such pain and why an untreated tumor is eating your breast (and you) alive and will probably kill you because you ignored it. And if you want to talk stress, what about the constant nagging doubt that comes with doing nothing?

  • leaf
    leaf Member Posts: 1,821
    edited December 2015
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    Well, I did find a paper that sort of addresses this question.

    This paper looked at women who refused surgery for breast cancer treatment. About half of this group opted for no treatment whatsoever. The numbers are quite small, but at 10 years, 64%of those who accepted surgery were still alive, 28% of those who received radiotherapy, chemotherapy, and/or hormonal therapy (alone or in combination) were still alive, and 39% of those who received no therapy at all. The actual numbers in each group are quite small,with 4 to 26 patients in each diagnostic group in the no surgery groups, so there is a lot of uncertainty in these numbers, but it may give you some ballpark idea.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1357734/

  • divinemrsm
    divinemrsm Member Posts: 6,154
    edited December 2015
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    About 20 years ago, I had a mentally ill elderly aunt in her 70s who had breast cancer. She lived an odd and sad life and had no treatment whatsoever. My two older sisters helped her out and what you say happens, ChiSandy, about the cancer taking over the breast, that is what happened to her. There were times they had to clean up much blood and she wore big bandages around her chest. It was all very sad.

  • sas-schatzi
    sas-schatzi Member Posts: 15,879
    edited December 2015
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    ChiSandy, I've only seen one tumor as you describe. It was about the size of a football. It's shape was like a spiraling lichen. I wasn't told of this before I saw it. ( I was walking by and a workmate needed help). Not easy seeing it. Not sure if I had been prepared to see it, would have made it any easier.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,956
    edited December 2015
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    Not a pretty picture at all. You can use googles images to see the horror of it

  • Crescent5
    Crescent5 Member Posts: 64
    edited December 2015
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    I don't want to be too blunt, but yeah my BFF did nothing and died. He children came to my house after her funeral .. her little boy could not grasp the concept that his mom was gone forever. Her husband could not grasp the concept that she did nothing.

    Seriously, you're considering doing nothing because your surgeon's a flake with the schedule? Is that really what you want to teach your child? Get a new dr. and stop looking for excuses. Treatment sucks, but it's not half as bad as you think. Surgery sucks, but you sleep through it. Dr shopping is a pain in the a**, but well worth it.

    I wonder ... if you had a slow leak in your tires, would you just let your car go until it could no longer be driven? Or would you take care of it whether or not your mechanic was a flake?

    Sorry to be so blunt, but I'm not going to avoid unpleasant conversation and let you slowly kill yourself.

  • MelanieBC
    MelanieBC Member Posts: 3
    edited December 2015
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    I don't have cancer but my mom does. I am an adult and at this stage in my life I would be very upset if my mom decided to not do treatment in hopes that she had a small growing cancer and would live for many more years if she did nothing.

    My mom was diagnosed on August 27, she had no clues she had cancer except that she found a lump on July 13. When it was found it was Stage III, she had a mastectomy of her right breast, she is now having chemo, will have radiation and then Hormonal therapy. The doctors suspect that her cancer was in her body for about 9 months. It had also spread to her lymph nodes and she had 33 removed and 22 of them had cancer in it. In just 9 months. We figure in another couple of months, it would have metatasized and her prognosis would be much different than it is right now. My point to this is that she went from having no clue anything was remotely wrong with her to having stage 3 breast cancer in a matter of weeks. So just because you are stage 1, don't let it fool you into thinking that it won't change very quickly and that your stage 1 couldn't become a stage IV within a matter of time and then at that point, what good will it do your son?

    None of this is pleasant at all. Chemo sucks. She has it every 3 weeks, has 2 weeks of feeling crappy and then a week of feeling normal in between treatments. For her, she would rather have her kids helping her out while going through treatment than helping her while she is dying. That's just the way it is.

    I hope that you don't find this offensive because it isn't my intent, I just think that you have a good shot at having a wonderful life and seeing your son grow and prosper, but if you don't treat your disease, you may not.


  • Bunnyhuggr
    Bunnyhuggr Member Posts: 7
    edited December 2015
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    I don't have cancer but for what it's worth I completely understand your point of view. I've watched way too many loved ones go through hell with cancer treatment & end up dying of cancer anyway.

    Another consideration is, some of us don't really have anyone to help us out with everyday tasks following surgery, or while dealing with the side effects of chemo. At least when it gets to the point where you're dying you can go into hospice care.

    However, unlike me you have a young child to consider. As others have said, bc is unpredictable. If there's a chance it could spread in the next few years to the point where you couldn't be a good parent to your son, then you should probably at least give treatment a try. It's your decision of course but that's my 2 cents