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Anyone have problems with fatigue prior to diagnosis?

cfdr
cfdr Member Posts: 308
edited January 2018 in Stage I Breast Cancer
I've been reading on the mayo clinic's website about the many possible causes of fatigue during chemo (I'm in my 3rd chemo cycle); one that is mentioned is that the cancer itself can cause fatigue. I was diagnosed in May with Stage 1 IBC, a 1.1cm tumor, no node involvement. It seems unlikely to me that it would have caused any symptoms—I couldn't even feel a lump after the tumor was found on a mammogram. But I was having a lot of issues with fatigue the year prior to dx. Some days I would be so exhausted I could hardly get off the sofa. I have mild sleep apnea, not bad enough for them to treat with CPAP or surgery, so I chalked the fatigue up to bad nights' sleep. I also had a very stressful 6 months just prior to dx, as I was taking care of my dying mother.

I'm looking forward to being done with chemo fatigue, but also wary that I'll just be going back to the fatigue problems I was having beforehand. But if it's true that the cancer itself can cause fatigue, maybe I was having symptoms that I was attributing to other causes.

Does anyone else recall having unusual fatigue in the months leading up to diagnosis?
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Comments

  • christina1961
    christina1961 Member Posts: 450
    edited November 2011

    Absolutely.  I was diagnosed 2/5/11 and Jan 2010 I had gone to my GP - I never went to the doctor; worked a zillion hours a week, worked through the flu, etc - but I was so tired that I went to get bloodwork to see if anything was wrong.  Nothing unusual in my bloodwork.  During a brief period between my first chemo (6 rounds of TAC) and surgery, I was walking 3-4 times a week and actually seemed to have more energy than pre diagnosis.  Now that I've had almost a year of treatment, I stay tired (but I'm on chemo again). I am looking FORWARD to being done with all this in February and hopefully will start regaining some stamina.

  • [Deleted User]
    [Deleted User] Member Posts: 7
    edited November 2011

    I am sure that the cancer causes an enormous strain on our whole body. I became totally exhausted a few months before dx, a coincidence ? i could not say.



    I just got dx with sleep apnea and seeing the pneumonologist week after next. The tech told me that on a scale of 1 to 10, I was approx a 5 "serious enough to do something about it", i.e, the oxygen mask :(((



    I have no doubt this is a contributing factor in my developing BC, the lack of oxygen, lack of sleep greatly affecting my immune system.



    Have you been tested for allergies or an autoimune disease, i.e. fibromyalgia or CFS or iron deficiency anemia ?

  • DFC1994
    DFC1994 Member Posts: 11
    edited November 2011

    I remember very clearly being so exhausted months before my BC diagnosis. I would talk to my daughter on the phone and remember telling her I felt as if I had been unplugged from the wall outlet. I would have to lay down for 15 minutes or so after getting supper overwith just to regain some energy. This lasted for months before my diagnosis. Now that I am 2 years since diagnosis and got rid of the cancer I pretty much keep my energy level all day long. I always got my yearly bloodwork and nothing was off in it so I now believe that fatigue is a big warning that something is going on somewhere.

  • dimidani
    dimidani Member Posts: 15
    edited November 2011

    YES. I felt unusual exhaustion 1 year prior to diagnosis. I am 1.9 year post diagnoses and I am now feeling good. Some fatigue but not the same as before

  • lulubee
    lulubee Member Posts: 903
    edited November 2011

    We were just discussing this very thing in the Stage IV forums a few days ago, in a thread entitled "?".  (Yes, just a question mark.)

    Generally, the answer was yes...  

  • jojoxoxo
    jojoxoxo Member Posts: 11
    edited November 2011

    I agree, before diagnosis I was unusually tired.  In my case, they missed the breast cancer diagnosis for quite a while, diagnosed depression and put me on amphetamines!  

  • cfdr
    cfdr Member Posts: 308
    edited November 2011

    Medici, I get 3 allergy shots every week and am on multiple meds for allergies/asthma. No symptoms of CFS or fibromyalgia, and the only reason I'm anemic is the darn chemo...before that my blood work was all fine except that my cholesterol was creeping a bit high.

    DFC1994, the analogy I used was that I had run out of gas. There were days I just couldn't drag myself to do anything. Didn't feel depressed or sick, just no energy. It actually gives me hope to think that it may have been the cancer all along, although it's also scary to think that it was affecting me and I didn't even realize it. But if getting rid of it means I can feel like my once-perky self, it gives me something to look forward to!

  • vickilf
    vickilf Member Posts: 17
    edited November 2011

    Yes I am tired a lot, then I have CLL cancer and IDC cancer, I also 63 and work two jobs, get up at 5:30 AM and get off work at 5 PM. so that could have something to do with it also. I feel drained especially today. I too have asthma and allergies and take lots of medication for my breathing problems.  So I think it is natural to be tired. After radiation I was more tired  then ever. Never had Chemo, I think it would do the same thing or worse yet.

  • Miles2Go
    Miles2Go Member Posts: 17
    edited November 2011

    Wow!  I can relate!

    1)  Took care of 95-year-old MIL for 1 1/2 years; she died December, 2010;   2) Took this past summer off from work, thinking I'd feel much better ~ not so, as fatigued as ever through the summer, especially during hot weather.  Diagnosis at the end of September - comes the dawn!

    I do not recall fatigue being touted as a symptom of breast cancer, yet in retrospect I remember being exceptionally fatigued prior to a separate primary breast cancer diagnosis 15 years ago.  How quickly we forget our history.

    I believe fatigue is a symptom that might wisely be "talked up" in our everyday conversations.  I agree with DFC1994.  We gals need to realize something! is running amuck in our bodies when we consistently feel fatigued.

  • [Deleted User]
    [Deleted User] Member Posts: 7
    edited November 2011

    In the past, whenever I brought up the dreaded F word, i was dismissively told that i was depressed, those doctors can be so upsetting ! Wish i could go back to each and every one and tell them they were mistaken. grrr.



    It is truly a wonder that we have been able to function in spite of everything. We are very strong women !



    Cfdr, you sound just like me: allergies, apnea, anemia, etcetera.....:(


    I would encourage everyone who has been suffering from insomnia to do the sleep study. Technology has improved since my last study 15 years ago which did not detect apnea.

  • elimar
    elimar Member Posts: 5,882
    edited November 2011

    Sleep is part of the foundation of good health, along with diet and excercise.  If you are not getting good restorative sleep, I imagine any number of things could start to go wrong over time; but I have a hard time thinking that it was B/C that gave some of you fatigue. More likely some other factor.  Could be a factor that would lead to both B/C and feeling fatigued.

    Remember, unless you have Grade 3 B/C, your tumor was probably in your body for a few years.  I have felt fatigued before, during and after cancer myself.  If B/C caused fatigue, wouldn't you think that bigger tumors would cause more fatigue?  Wouldn't you think all the Stage IV women would just be collapsing?  The Stage IV's are at a variety of energy levels, some are in remission, some aren't, some are fatigued, some are having more than one holiday party. I just don't see a distinct pattern here.

  • impositive
    impositive Member Posts: 102
    edited November 2011

    I had major fatigue before my diagnosis and I too attributed it to other things.  I had been "tired" in the past but never felt "fatigued."  I saw a doctor for my fatigue and was blown off as well.  People (doctors) just dont get it when you are trying to describe fatigue unless they've been there.   

    I work at home.  My office is on the second floor.  I would feel so fatigued sitting at my desk that I would just lie down in the floor.  I couldn't make it downstairs to a bed or couch.  

    I have not done chemo but have changed my diet/lifestyle and I no longer have the fatigue.  I'm still tired sometimes but the "fatigue" is gone.  I think it has to do with our adrenals and when our adrenals are fatigued, it can lead to our immune system failing...hence cancer. 

  • Hindsfeet
    Hindsfeet Member Posts: 675
    edited November 2011

    This past year I have been fatigue. Is it because I'm getting older or is it because my immune system is exhausted or because my body is fighting cancer? Or, is it all three. For me this last year has been mind over matter. I' hope to be where impositive is now... soon back to normality. Perhaps once the cancer is cut out, I'll feel more energy.

  • lulubee
    lulubee Member Posts: 903
    edited November 2011

    Elimar and all -- I was Stage 1 NED for three years and have been Stage IV for a year now.  What I have observed is that the Stage IV population has wildly variant levels of tumor load, and I think that's an important factor in what you're observing.  Some of the Stage IV sisters are even NED for periods of time when a treatment proves effective for a while.  So it makes sense that there would be a great deal of variation in the fatigue levels at Stage IV, perhaps even moreso than at any other stage.  

    It does seem, on the whole, among the Stage IV population, that generally when our tumor load is higher, our fatigue is more relentless and profound.  Both times I have had flaring tumor progression, quite often (daily) I was so wiped out that I could not fight sleep if I tried.  Now that my current treatment has zapped the buggers back, I am able to get back to cleaning out closets and decorating my house for the holidays.  It comes and goes.  

    If there is anything about energy levels which seems to consistently apply to everyone at Stage IV, I think it's that we have far lower energy reserves.  Even when our tumor load is lightened for a while, we still seem to get tapped out much faster than before... therefore we must learn to budget how we spend our energy each day.  If I have a burst, I am elated but I use it carefully, while continuing to protect myself against draining my reserves for tomorrow.

    I'm just thankful to have energy whenever it decides to come! 

  • cfdr
    cfdr Member Posts: 308
    edited December 2011

    lulubee, I went to the forum you mentioned earlier (the one with just a question mark for a name) and saw that a lot of the Stage IV sisters have had issues with fatigue. It certainly makes sense to me that the more advanced the cancer or larger the tumor, the more likelihood of symptoms.

    What does NED stand for?

    elimar, I don't know that there is ever anything resembling a distinct pattern when it comes to this disease. And certainly at Stage IV you have a very wide range of how much, and to where, the disease has metastasized, so I would expect the Stage IV group to have even less consistency. I also read that if you have a 1cm tumor (about the size of mine), you have probably already had it for about 5 years. But I also don't know enough about how a tumor might cause fatigue to know how much size is a factor. A small tumor can be more aggressive than a large one, so I wouldn't assume that a smaller tumor is less likely to cause symptoms than a larger one.

    According to the article I read (which is here: http://www.mayoclinic.com/health/cancer-fatigue/CA00032), "some cancers release proteins called cytokines, which are thought to cause fatigue". It doesn't go into any more detail, though.

    I'll be asking my onc about this at my next appt, on 12/9. I'll let y'all know what she says.

  • elimar
    elimar Member Posts: 5,882
    edited December 2011

    Several of the women with small, non-metastatic B/C were mentioning relatively recent fatigue.  The point I was going for was that even their small tumors were probably in existence for longer than some months or a year, so it would be harder to know that it went hand-in-hand with any fatigue. 

    Also, the "tumor-load" of the early stagers would be light just by the fact that it would not be throughout their bodies, no organs affected, etc.  Therefore, all women with mets could be considered to have more of a "tumor load" (even in remission, as healing tissue and bone take energy too)  than a woman with no spread, AND YET they are not all more fatigued than some early stage women.  With the point being you cannot be sure fatigue comes from B/C.  More likely it is a factor of general health.

    (As a side note:  You know how chemo or rads give many fatigue and some work full time right through treatment.  I think that has a lot to do with overall health and energy levels too.)

  • PLJ
    PLJ Member Posts: 65
    edited December 2011

    I was fatigued prior to dx, probably for a couple of years. I would lie in bed and wonder what had changed over the past few years to result in such exhaustion. I know that my tumour was there at least 1 year prior to removal because I was misdiagnosed for a year. No chemo or rads based on pathology.

  • elimar
    elimar Member Posts: 5,882
    edited December 2011

    PLJ,  So have you perked up now that the B/C is "out?" 

    Then again, so many report that getting B/C was their wake up call to adopt healthier lifestyle habits, so that alone can give an energy boost.

  • ckk
    ckk Member Posts: 79
    edited December 2011

    I share this experience! For several months prior to dx, I was incredibly tired, so tired that I went for a checkup and blood work. The tiredness was far more profound and differnt than any I had experienced before. My doctor attributed it to low levels of Vitamin D and put me on D3. Some improvement, but not much. Then in October, I found my lump. When I recently mentioned this period of exhaustion to my oncologist, she told me that she hears this all of the time from her BC patients. That it's not documented in any of the literature, but she's heard it enough from women to see a pattern.

    Perhaps it's from the tumor seeking blood supply and nourishment as it grows?

  • lulubee
    lulubee Member Posts: 903
    edited December 2011

    ckk... interesting about your oncologist verifying this, anecdotally at least.

    I was told that tumor cells do just what you said -- they command more energy than healthy, normal cells.  

    But there's more... these tumors shed inflammatory cytokines into our systems that actually cause fatigue and even depression.  If you google "breast cancer cytokines fatigue" you'll come up with plenty of info.

    Here is one study.

  • cfdr
    cfdr Member Posts: 308
    edited December 2011

    I had read a lot about fatigue and cytokines also, which is what got me thinking about it. I asked my onc today (actually the nurse practitioner on her team) if my fatigue prior to diagnosis could have been from the tumor and she answered with a quick and emphatic "no". Although with reading about so many others here who have similar tales, there's still an element of doubt in my mind. I guess I'll see how I feel once I'm finally done with chemo.

  • ckk
    ckk Member Posts: 79
    edited December 2011

    cfdr, I guess the voices and experiences of women who have felt this mean nothing until a study is done, right? :-)

  • shera
    shera Member Posts: 28
    edited December 2011

    Yes! Just diagnosed 12 days ago. Since knowing, it occurred to me that my fatigue for the past few years might have been the cancer. I've been very low energy for over a year now -- and recently it has gotten extreme, at least for me since I'd always been a high-energy person who stayed active and worked out regularly. I knew something wasn't quite right. I spent last winter doing inner cleanses and minor detoxing. This year I starting taking vitamin D -- attributing my lack of energy to possibly seasonal affected depression. I couldn't accept "age" as the reason because there are many energetic 40 year olds.  Well this thread might be a small ray of light. If, after chemo, I'm not only staying alive longer... but get my energy back... that is something I will think about and look forward to - during the next many challenging months!

  • cfdr
    cfdr Member Posts: 308
    edited December 2011

    I'm with ckk...this looks like something that would be worthy of study. It could look at women's experiences retrospectively, but it wouldn't be totally subjective, either, because it sounds like so many of us went to doctors about fatigue in the year or two before diagnosis....sot there would be a paper trail of symptoms for a lot of us.

  • flowers56
    flowers56 Member Posts: 2
    edited January 2012

    I, too felt fatigued before my dx, more so than ever before.  So much so that I had to take a nap after work, (I worked 7a.m. - 2:30 p.m.)  I thought it was just getting up earlier than usual as this was a new job for me.  Then I felt the lump in my breast and decided to get a mamo.  Sure enough, I had bc.  I also mentioned this to the oncologist, she dismissed the fatigue as any kind of indication that I had bc.  Then I mentioned it to my PCP and he agreed that the fatigue could have been a precursor to the bc.  Who knows?  Maybe a study should be done.  I'm hoping once I've completed chemo and radiation, I'll be feeling more energetic!!  Keeping my fingers crossed.

  • Mallory107
    Mallory107 Member Posts: 14
    edited January 2012

    yes.  For about six months leading up to it I knew something was wrong.  I can clearly remember laying in bed thinking "this is what it must feel like to be dying."  I was exhausted-not just tired.  And yet still couldn't sleep.  I asked my doctor if she thought it could be cancer and she said no, not at all.  I wish I would have pushed more.

  • EB009
    EB009 Member Posts: 11
    edited June 2013

    I agree Mallory107.  Not diagnosed , I just found my lump 6/7/2013 in left breast at the 3 o'clock position... I am so fatigued ...but can't seem to sleep and when I sleep  I wake up fatigued ... I'm glad I saw your post  .... I thought it was all in my head . My mammo is July 2 . I was told I have an abscessed cyst. I beg to differ . My entire world has changed this past year vesus 2 yrs ago due to fatigue.

    Thanks E

  • EB009
    EB009 Member Posts: 11
    edited June 2013

    I agree Mallory107.  Not diagnosed , I just found my lump 6/7/2013 in left breast at the 3 o'clock position... I am so fatigued ...but can't seem to sleep and when I sleep  I wake up fatigued ... I'm glad I saw your post  .... I thought it was all in my head . My mammo is July 2 . I was told I have an abscessed cyst. I beg to differ . My entire world has changed this past year vesus 2 yrs ago due to fatigue. I'm usually 145 to 150 but this last  year to 1 1/2 yrs I gained and can't seem to lose the 15 to 20 lbs I have gained .

    Thanks E

  • slinky
    slinky Member Posts: 166
    edited June 2013

    I was SO fatigued before I found my lump.  For almost six months leading up to my discovery, I was going straight home from work and went directly to bed.  I sometimes called in sick because I was so tired.  After I was diagnosed, the fatigue made sense - my body was fighting cancer!

  • cfdr
    cfdr Member Posts: 308
    edited June 2013

    5 months after chemo I was diagnosed with pernicious anemia and was started on B12 shots. I've been on them for about a year now, and still having issues with fatigue, but I'm beginning to suspect that my problem is insufficient B12. A lack of B12 can also increase your risk of breast cancer. My best guess now is that I was B12 deficient prior to cancer, which caused fatigue, and that the chemo-caused anemia, followed closely by an antibiotic (for pneumonia) that depletes B12, pushed me over the edge. I am 18 months post-chemo and still having days of paralyzing fatigue.