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Topic: Anyone have problems with fatigue prior to diagnosis?

Forum: Stage I Breast Cancer — Meet other members with a Stage I breast cancer diagnosis to share information and support.

Posted on: Nov 27, 2011 03:37PM

cfdr wrote:

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?
Dx 5/23/2011, IDC, 1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/8/2011 Lumpectomy: Left Surgery 6/29/2011 Lumpectomy: Left Radiation Therapy 7/26/2011 Chemotherapy 10/7/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/3/2012 Femara (letrozole)
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Jun 30, 2013 07:44AM - edited Jun 30, 2013 07:46AM by Alicethecat

Hello Cfdr

Hope you will find that in the fullness of time that your fatigue decreases.

I was absolutely exhausted for six months or so before I was diagnosed with breast cancer - and I've been on B12 for pernicious anaemia for 18 years...

My fatigue came and went but came on most days during chemo and lasted for two hours and then disappeared.

I finished chemo in August 2012 and by May 2013 my fatigue had practically gone. It occasionally rears its head for an hour or two and then disappears again. My onc just told me to rest when it occurred.

It's very unsettling as health appears to be back but then goes off again.

Hope you get some relief soon.

Best wishes

Alice

Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/6/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/2/2012 Breast, Lymph nodes
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Jun 30, 2013 09:06AM cfdr wrote:

I have not been so lucky. I am 18 months post-chemo and still unable to work full time due to fatigue. There are days, still, where it is almost as bad as it was during active treatment. A vigorous hike can set me back a month. I'm seeing my doctor tomorrow about doubling the frequency of my B12 shots and getting a prescription for either ritalin or modafinil.

Dx 5/23/2011, IDC, 1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/8/2011 Lumpectomy: Left Surgery 6/29/2011 Lumpectomy: Left Radiation Therapy 7/26/2011 Chemotherapy 10/7/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/3/2012 Femara (letrozole)
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Jul 2, 2013 11:04PM - edited Jul 2, 2013 11:04PM by intheclub

Yes, I definitely was fatiqued 6 months at least prior to my surgery, nearly fell asleep driving home from work, something I have never ever had a problem with, I too had blood tests and all clear, then I was diagnosed with lobular and left mastectomy.  Scarily I still feel very fatiqued at times, but hoping this is the hormone treatmen

Dx 4/12/2012, ILC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/15/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left Radiation Therapy 6/29/2012 Breast
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Jul 2, 2013 11:20PM Outdamnedspot wrote:

I was exhausted for at least three months before diagnosis. Most days I was sneaking home from my business to nap on the couch for an hour. I just thought I was working too much and not getting enough sleep at night.
I remember thinking after I found out I had BC 'that's why I've been so tired'. Feel good most days now though I take melatonin most nights to sleep.

Give in, give up or give it all you've got! Dx 8/29/2012, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/1/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 11/13/2012 Radiation Therapy 12/5/2012
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Jul 3, 2013 07:17AM cfdr wrote:

My PCP is skeptical, but since there is no harm in trying, she has agreed to giving me B12 shots every two weeks. I've also had a second sleep test; despite assurances from two doctors that "sleep apnea only gets worse if you gain weight", my incidents per hour have doubled in 4 years, plus they discovered I have Periodic Limb Movement Disorder. So now I'm awaiting my CPAP machine.

If the increased B12 and the CPAP don't perk me up, my doctor will prescribe "a whiff of ritalin" for me.

Dx 5/23/2011, IDC, 1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/8/2011 Lumpectomy: Left Surgery 6/29/2011 Lumpectomy: Left Radiation Therapy 7/26/2011 Chemotherapy 10/7/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/3/2012 Femara (letrozole)
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Jul 5, 2013 04:06AM Power-House wrote:

I am always tired. It's hard to say because I do so much and don't sleep as much as I should. I work out a lot and try to limit my carbs which makes me more tired. I am always trying to get so much done.I work long hrs. If I go to a dr complaining of fatigue the answer would be simple. According to doctors, my cancer took 8 yrs to get to be 1cm. So I doubt that I would feel more fatigued just months before diagnosis. Mmmmm... Did pushing my body and working through the fatigue cause the cancer perhaps? Did the chicken come first, or the egg? One thing is sure, I'm sure the cancer added injury to insult. Lol. Food for thought

Dx 4/26/2013, DCIS, 1cm, Stage I, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 5/22/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel
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Jul 5, 2013 07:24AM chef127 wrote:

I have fatigue for years. Treated it with provigil(modafinil) for years. Its indicated for narcalepsy and night shift work. Ask your dr to rx it for that???? It worked great but when I became disabled  the ins would not cover it, very expensive, over 10$ a pill. My pcp rx'ed aderall(ritilin). It is way cheaper but made me feel goofy when it wore off (blame the drugs.lol) He stopped rxing for me because the med group he now works with doesn't approve. They have no other solution for me. I guess they think getting it illegally is OK.

Anyway, after my surgery to remove the ca my surgeon said "now that the tumor burden is out you'll feel better". Never happened. but it does happen sometimes. It can cause fatigue.

I'm now on a herbal tea that I'm hoping helps.

Hang on and in.





























Dx 8/2011, IDC, Left, 4cm, Stage IIIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- Radiation Therapy 1/2/2012 Breast
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Jul 8, 2013 06:19AM cfdr wrote:

I asked my PCP about modafinil, but she doesn't have any experience with it so she was reticent to prescribe it. She has lots of patients (mostly pediatric) on ritalin and feels more comfortable with that. I still have a follow-up appt with the utterly useless neurologist I saw 3 months ago (who asked me what year it was and gave me a printout of info on fatigue I could have gotten off wikipedia). If I'm still feeling bad by then I may ask him for modafinil.

Dx 5/23/2011, IDC, 1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/8/2011 Lumpectomy: Left Surgery 6/29/2011 Lumpectomy: Left Radiation Therapy 7/26/2011 Chemotherapy 10/7/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/3/2012 Femara (letrozole)
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Jul 8, 2013 07:17AM chef127 wrote:

hey cfdr,

It was my utterly useless neuro that rx'ed the provigil (modifinal) It is non addictive but can be habit forming. If you have pvt ins go for it. The ritilin is addictive I think. There is a world of difference in the two drugs as far as fatigue relief is concerned. My neuro gave me samples of Nuvigil. I didn't like it at all. If you have pvt ins Nuvigil will give you a free 30 day supply and future co-pmts of only 5$ a month.

I hate the idea of drugs getting me through the day, but the modifinal did work. I have a friend who can fill my rx for cost. Any time now.Good luck with your choice.......xo, maureen

Dx 8/2011, IDC, Left, 4cm, Stage IIIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- Radiation Therapy 1/2/2012 Breast
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Jul 9, 2013 06:41AM cfdr wrote:

Sounds like your neuro was not useless at all!

Ritalin does have the potential to be habit-forming, but there are plenty of people who take it only on an as-needed basis, or take "drug vacations" (e.g., not taking it on weekends) with no problems. Since diagnosis I've been prescribed oxycodone, hydrocodone, and ativan, all of which have addiction potential, and never had a problem taking any of them only as needed.

My PCP originally suggested wellbutrin, but I'd just spent 6 weeks weaning off lexapro and am wary of getting on anything else that requires weeks to find out if it works and more weeks to get it out of your system. I'm considering antidepressants as the last resort for this, although that seems to be the only solution the oncologists can come up with.

Dx 5/23/2011, IDC, 1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/8/2011 Lumpectomy: Left Surgery 6/29/2011 Lumpectomy: Left Radiation Therapy 7/26/2011 Chemotherapy 10/7/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/3/2012 Femara (letrozole)
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Jul 9, 2013 01:17PM - edited Jul 9, 2013 01:18PM by Alicethecat

Cfdr

Just a thought but from one person on B12 to another, do you happen to be wheat-intolerant?

I've been tested for coeliacs but it came back negative but the results letter advised me to avoid wheat if it made me uncomfortable.

Only have wheat now and again now and have much more energy.

Guess you would have to ask your docs before cutting out or reducing wheat intake, especially as you are on meds, but is this worth discussing with them?

Good luck

Alice

Dx 1/4/2012, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR+, HER2+ Surgery 2/6/2012 Mastectomy: Right Targeted Therapy 7/18/2012 Herceptin (trastuzumab) Radiation Therapy 10/2/2012 Breast, Lymph nodes
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Jul 9, 2013 03:39PM chef127 wrote:

Let me rephrase that. He is not so useless as he is ignorant to MS fatigue. My second meeting w him he rx'd a disease modifying drug which is typical. I asked him to rx the provigil and he said it is not indicated for MS. It is widely used by neuros for MS. He must have researched it and aquired samples of nuvigil and gave me a months supply at my next visit. Nuvigil is similar to provigil. The following month he told me he got me another free months supply but I prefer the modifinil. he did give me a script. I guess he is not an MS 'specialist' and was unaware. I'm sort of educating him. It is the best fatigue fighter I know of, whatever causes it.

Alicethecat, I would love to give up the wheat, it works for a lot of people. But...I love my bread and pasta, etc. It is a senseable approach. Maybe I will give it a try someday. Ciliac or not. thanx for the idea.

Dx 8/2011, IDC, Left, 4cm, Stage IIIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- Radiation Therapy 1/2/2012 Breast
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Jul 9, 2013 04:24PM Patti777 wrote:

I had been going to doctors off and on for over a year complaining about fatigue. I am triple negative stage 1. Still working on doctors visits. Eager to see if fatigue at least slows down. When asking my oncologist if the fatigue could be caused by the cancer he said no. I am not so sure.

Dx 7/2/2013, IDC, 2cm, Stage IIB, Grade 3, 1/5 nodes, ER-/PR-, HER2-
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Jul 10, 2013 05:59AM cfdr wrote:

Alicethecat, I have not considered wheat intolerance. My mother was allergic to wheat, but I have never had a negative reaction to it. My digestion is just fine so I'm sure I don't have celiac disease. I've been trying to cut out refined flour, so my wheat consumption is reduced as a result of that. However, my husband has started baking bread, and I know he would be insulted if I suddenly refused to eat it! That said, though, it is certainly worth going without for a while to see if it has an effect.

Dx 5/23/2011, IDC, 1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/8/2011 Lumpectomy: Left Surgery 6/29/2011 Lumpectomy: Left Radiation Therapy 7/26/2011 Chemotherapy 10/7/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/3/2012 Femara (letrozole)
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Jul 16, 2013 11:46PM sonjaloder wrote:

I have been diagnosed with a Stage 3 breast cancer in the last week and I have been tired for the last 6 months.  I was also having night sweats.  I saw two doctors and they thought it might be pre-menopause, thyroid etc.  I had blood tests and chest x-rays with no result except that my immune system was slightly down and fighting something.  I am 41 years old and found a 6mm lump in my breast and then it was picked up. 

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Jul 17, 2013 07:33AM chef127 wrote:

When I saw my BS post surgery he did say now that the tumor burden is gone I should start to fell better, less fatigued. Never happened, for me. I guess many are fatigued from the tumor, weakening their immune system. My immune system is kicking ass, always has been normal or slightly above. But the fatigue persists and is holding me back from normal daily activities. I got my modifinal last week, 200mg, and it does help for about 3-5 hours then I crash...........zzzzztime for a nap.

I'm going to start making a better effort to exclude wheat from my diet. It is the logical approach to the fatigue issue. Pasta bread cookies ETC. If you read ingredients in foods many have a form of gluten in them. I was in the bagel business for years and they are made with hi-gluten flour. I love them.....they gotta go.

It's a never ending battle.

Dx 8/2011, IDC, Left, 4cm, Stage IIIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- Radiation Therapy 1/2/2012 Breast
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Jul 18, 2013 11:49AM cfdr wrote:

Of course, 3 days after I say my digestive system is great I come down with viral gastroenteritis. Worst and longest-lasting case I've ever had. My mom used to call these things the "24 hour virus" but I'm on day 6 and I'm not back to even my low normal yet. Don't know if it's the post-cancer or the pernicious anemia but these things seem to hit me a lot harder than they used to.

Dx 5/23/2011, IDC, 1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/8/2011 Lumpectomy: Left Surgery 6/29/2011 Lumpectomy: Left Radiation Therapy 7/26/2011 Chemotherapy 10/7/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/3/2012 Femara (letrozole)
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Jul 18, 2013 12:50PM chef127 wrote:

cfdr,

So sorry. I don't even know what it is but any digestive issue for six days, in this heat has to be tough. Are you in this horrible heat wave where you are? I know this unrelenting heat effects me. I don't leave the house much.

Feel better soon..........xox

Dx 8/2011, IDC, Left, 4cm, Stage IIIB, Grade 2, 1/8 nodes, ER+/PR+, HER2- Radiation Therapy 1/2/2012 Breast
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Jul 19, 2013 06:08AM cfdr wrote:

Haven't really been out of the A/C so heat has not been an issue. I live in the South, which, surprisingly, has been cooler than normal lately.

Dx 5/23/2011, IDC, 1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/8/2011 Lumpectomy: Left Surgery 6/29/2011 Lumpectomy: Left Radiation Therapy 7/26/2011 Chemotherapy 10/7/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/3/2012 Femara (letrozole)
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Jul 23, 2013 08:29PM - edited Apr 16, 2014 12:56PM by Moderators

Yes, I had profound fatigue about six months before my dx. I knew something was wrong--was exhausted after work and unable to do spring clean-up and gardening. Felt "fuzzy" like my brain was on hold. Had problems at work due to my lack of sharpness (still do). I was sick and tired of being sick and tired. So I went to my Dr. and had blood tests to no avail. Unfortunately, I didn't have a physical at that time and was late with my mammogram, too. Went home with another new RX for depression, then a few weeks later I found the lump.

I haven't had surgery yet and I'm less than one week into hormonal treatment, but I doubt I'll have any issues with fatigue like those of you on chemo. I'm actually feeling better physically--less tired and have more energy. That may be pyschological effect .... as in now I know what's wrong and can finally take action to fix it. OR maybe because it's summer and I LOVE warm weather, being outside, gardening, swimming. One thing's for sure, ever since I was DX'd with bc, it has made me appreciate the small moments of joy in life. Course, that could change if I get a positive result of my BRCA tests. :/ 

Good luck to all of you!

Dx 6/2013, ILC, 5cm, Stage IIB, Grade 2, 1/18 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane) Surgery Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant
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Jul 24, 2013 08:03AM cfdr wrote:

blondie101, congrats on having an oncotype score of 10. That is very good news!

Dx 5/23/2011, IDC, 1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/8/2011 Lumpectomy: Left Surgery 6/29/2011 Lumpectomy: Left Radiation Therapy 7/26/2011 Chemotherapy 10/7/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/3/2012 Femara (letrozole)
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Jul 26, 2013 11:46PM lizinmontreal wrote:

I was fatigued for months before cancer diagnosis and I developed dark circles under my eyes. I thought the dark circles were due to the fatigue. I also felt a swollen, thick area just under the armpit when lying on that side in bed at night. Then in the morning, I forgot about the uncomfortable thickening feeling so I never mentioned it to my doctor.

Dx 4/1/2010, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 6/30/2010 Lumpectomy: Left
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Aug 10, 2013 01:45PM wrenn wrote:

I have been exhausted for months and attributed it to thyroid problems since I was being investigated for thyroid cancer. After having half my thyroid removed and receiving a benign report I then thought the remaining side of my thyroid must not be working. I kept being told it was fine.

i was then diagnosed with breast cancer and have not had any treatment yet (surgery next week) but I have to force myself out for walks every day and could just lie down on the grass I am so tired. 

I hope the fatigue goes away post op. I'm grateful to have this forum to see that I am not the only one with this experience.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 11/25/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 21, 2014 05:42AM srpj68 wrote:

Gosh I'm so glad I found this thread after an internet search.  I have just been diagnosed with stage 2 LBC with lymph involvement, but haven't had all the scans yet.

I have the most crashing fatigue - feels like flu but without the fever, with nothing showing up on blood test results.  I have been convincing myself that I have secondary BC as I could only find info relating to fatigue with chemo or secondary cancer.  This has given be renewed hope - I guess I won't know until the scan results are in though.

Dx 7/2014, ILC, 2cm, Stage IIB, Grade 2, ER+/PR+, HER2+ Chemotherapy 7/31/2014 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Targeted Therapy 10/2/2014 Herceptin (trastuzumab)
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Jul 21, 2014 07:04AM cfdr wrote:

Here is the most thorough resource I've found about persistent cancer-related fatigue.

http://www.cancer.gov/cancertopics/pdq/supportivecare/fatigue/HealthProfessional/page1/AllPages

Dx 5/23/2011, IDC, 1cm, Stage I, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/8/2011 Lumpectomy: Left Surgery 6/29/2011 Lumpectomy: Left Radiation Therapy 7/26/2011 Chemotherapy 10/7/2011 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/3/2012 Femara (letrozole)
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Jan 31, 2017 09:59PM Freemanburch wrote:

I was so glad to find this. I had extreme fatigue for close to a year before my diagnosis. I would come home from work at lunch and take naps. Nap after work, had trouble staying awake at work and napped all weekend long! I could sleep sitting up. I went to the doctor because it was so extreme, but all my tests were normal. Last week I had my lumpectomy and returned to work a week after. I worked all the way through lunch before I realized I wasn't tired at all. I never attributed my fatigue to the cancer until they took it out. It is striking compared to what had become my new reality. It's like waking up from a dream. Nice to beback to being me.

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May 9, 2017 12:28PM Janney03 wrote:

I am sorry that you had fitique but glad to hear as I am exhausted and was getting really worried.

I was just diagnosed 2 weeks ago and my surgery is next week. Will be glad when it is all over.

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Jun 6, 2017 11:06AM Janney03 wrote:

I was tired and had burning pain in my breasts before my diagnosis. Although my tumor was very small 6 mm (Invasive Tubular Breast Cancer) it caused a lot if havoc in my body. I had lumpectomy surgery 3 weeks ago and the fatigue is worse and I haven't even went for radiation yet.


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Jun 16, 2017 10:00AM Leatherette wrote:

I have been fatigued for about a year. Since September, I do a two mile walk almost every day, the first half uphill, and I had been remarking to my husband, "Shouldn't this be getting easier? Every day it feels just the same as when we first started." My tumor is pretty large and deep, and I wonder if it presses on my heart and/or lungs. It certainly feels that way when I am walking. I'm sure the docs would say no if I asked. the tumor will be out Monday, so it will be interesting to see if I feel a change once I recover from the surgery

Age 45 at diagnosis Dx 5/2017, DCIS, Left, 6cm+, Stage 0, Grade 3, ER+/PR+ Surgery 6/19/2017 Mastectomy: Left Dx 6/23/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 7/25/2017 Herceptin (trastuzumab) Chemotherapy 7/25/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery Reconstruction (left): DIEP flap
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Jun 29, 2017 07:36PM Imladypeacock3 wrote:

yes. It was what made me wonder if I had some form of cancer. I had known someone who was so fatigued she could hardly move through the day let alone work. She was later found to have cancer. Someone else had told me that fatigue is often the first sign of cancer. Like you I was Attributing it to my MS, arthritis or diabetes but this exhaustion was like none other and wasnt relieved with rest. Now Ive been diagnosed with invasive ductal carcinoma triple negative stage 1

MaryLouise

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