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Topic: seeking those who had health/pain symptoms prior to diagnosis

Forum: Waiting for Test Results —

For members not diagnosed with breast cancer, but waiting for test results:  Biopsy, mammogram, ultrasound, or other screening tests. Waiting is VERY difficult but remember...

"Worry does not empty tomorrow of its sorrow. It empties today of its strength." -- Corrie Ten Boom

Posted on: Jun 22, 2020 04:21PM

CrowLuv wrote:

Hi all. I'm a 49yo (50 in August) female (not sure if relevant) still in a state of being stunned with recent suspicious breast findings on right breast UOQ and left breast LOQ (BIRADS 4c) that came out of nowhere (findings not in my mammogram from a year ago in May 2019). So what's happening I did not see coming. I'm scheduled for a definite MRI-guided biopsy in my right breast, and a targeted US with possible biopsy left breast very soon. I have a question I can't seem to find answers for with my searches here (apologies if it has been addressed). This is a very long post because I'd like to provide an overall " big picture" of what I've been dealing with - but if you're in a rush just scroll to the bottom for my question :)

While I'm stunned because this was not on my radar - I'm not "freaking out," in fact I feel cautiously optimistic because I know BIRADS 4 are overwhelmingly benign according to what I've read. But still, there's that nagging, sinking feeling in my gut I'm going to have to just deal with until I get my final answers. Distraction and optimism can only carry me so far, you know?

Anyway...point of this post: I really hope to hear from members with diagnosed BC (not those who aren't diagnosed and just worried, no offense to any intended) about my 6-month history of rapidly declining health and escalating pain, and if anyone experienced that kind of thing prior to diagnosis. I seem to only read about 2 scenarios: BC patients who either received a dx as a total shock after abnormal mammo, etc., and those who had a palpable lump or other breast change leading to dx.

For me, despite my 90% optimism - I need to go "worst case scenario" a bit so I can see if diagnosed people here find any of this this familiar: my health started deteriorating about 6 months ago, roughly last December, and it got worse every week. I was increasingly weak, no stamina, overwhelming fatigue (not just "need more sleep"), and worst of all I developed an at first just nagging discomfort in my right scapular region, then on top of that in my front right chest-wall region. It got worse every week, and although it's tolerable during the day (think 3 on a pain scale), at night it was worse and worse until at this point it is unbearable (I have to just focus on breathing, if someone tries to talk to me I bite their head off, it's a deep, relentless aching pain. I finally "tapped out" and asked my PCP for meds to help, I have Tramadol I only take at night - it takes the edge off but it never takes all the pain away - it just goes from a solid 7 of misery to maybe a 5-6, which is still awful for me. I have to just "white-knuckle" it through every single night. :(

In the middle of all this, starting in roughly March I started noticing a "swelling' area above my right breast, kind of in the pec region - definitely NOT "in" my breast but above it, kinda between the clavicle area and top of breast. It's growing - was 2" back then and 3" now (interestingly, the breast MRI now leading to biopsy found nothing to correlate with this very palpable mass that 2 doctors have felt, which is making me crazy confused! I mean how is that even possible?!)

Also in the meantime, labs revealed hypercalcemia, and that workup led to a dx of hyperparathyroidism, which led to dx of enlarged thyroid w multiple nodules and enlarged lymph nodes around the thyroid gland. Surgery was scheduled to remove what they found as possible "candidates" for adenomas, with pathology of all the nodules.

Believe it or not, I was stoked, so happy that they found something that had such an EASY and simple cure (the surgery is apparently no biggie).

THEN, my very recent OB/GYN yearly visit had her concerned about this "above my breast" lump so she sent me for a diagnostic mammogram and bilateral ultrasound. I didn't think for a second that they would find anything - but it did - Birads 4c leading to Breast MRI and now MRI-guided biopsy on the right breast and targeted US with possible biopsy on the left breast.

Ladies (and gents), my head is SPINNING. Parathyroid surgery is now postponed due to the breast findings now considered top priority (I'm a patient of 2 separate departments, endocrinology and the breast center in a large, highly respected cancer center, which makes appointments, record sharing, etc. all go smoothly so that's good).

Now with this novella-length post nearly wrapped up (thank you if you made it this far!), my mind is going NUTS wondering if the right-side scapular pain and right-side chest wall pain could have any relation to the suspicious mass in my right upper outer quadrant. I mean, maybe there are nerves around that area that are being irritated and causing this relentless pain?

So, my major question is: did anybody here with diagnosed BC have any kind of general illness, poor health and/or pain problems in the months leading up to your BC diagnosis? Thank you thank you to anyone who can provide any insight!

(again, let me emphasize I know that the majority of BIRADS 4 are benign, but I am desperate for answers and I'm in information-gathering mode to mentally prepare for any possible scenario).

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Jun 22, 2020 06:52PM OnTarget wrote:

I hope it turns out to be nothing!

I had rapid weight loss, but I felt fine otherwise.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/14/2019 Zoladex (goserelin) Chemotherapy 8/6/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 22, 2020 08:10PM CrowLuv wrote:

Hi OnTarget, thank you and I hope so too. I've lost roughly 20lbs since January, but probably bc the pain trumps any hunger so I'm probably not eating as much. Who knows. Time will tell. Thanks again!

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Jun 22, 2020 08:13PM 2019whatayear wrote:

In like feb last year I decided to sign up for the app Noom and lose weight- so prior to that I was pretty fatigued on a reg. basis. Like I would fall asleep on my train commute home. After I started working on what I was eating and focused on like 10K steps a day and like almost no wine because of the waste of calories, I started losing weight and felt more energy and slept better. Then March 2019 - felt lump- had mammo had 2nd mammo in April first week of May - biopsy and got BX dox. I was feeling good no pain in breast or under arm or anything. Every body is different and bodies are weird.

The time of having and not having cancer is super super stressful. Schrodinger's Cancer and all that.

FWIW in retrospect the health issues I had for like a yearish prior to the BC was hormonal headaches, bloating, terrible period cramps and general pelvic pain- So I had like a LOT of estrogen running around my body-

I hope it turns out your body is just being weird and you get a nice benign diagnosis and that you can get rid of the thyroid asap!

5/6/2019 IDC 2cm, micromet 1/9 nodes, BRCA2+, ER+, PR+, HER- BMX 6/2019, A/C & Taxol 2019, Radiation, BSO - preventative 2/2020, Letrozole 3/1/2020
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Jun 22, 2020 08:44PM CrowLuv wrote:

Thank you for sharing your experience, 2019whatayear - and yes, our bodies really are weird. I keep reminding myself that I can have two things at once that explain my pain and my other symptoms (and those two things don't have to include cancer, of course). The hurry up and wait stuff has been the theme for 6 months, I can wait another week and a half-ish to know what road I'll be routed to next. Thanks again.

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Jun 22, 2020 09:12PM Beesie wrote:

CrowLuv, this isn't to scare you, but to set expectations. While on average a BIRADs4 lesion has a 70%-80% chance of being benign, the odds are not so favorable for BIRADs4c. On average approx. 80% of 4c biopsies are cancer, with a range of 50% - 95%.

So there's still a reasonable chance that your biopsy will be benign - and you should hope for that - but you should also prepare yourself to hear that this is breast cancer.

As for your suspicious findings coming out of nowhere, that's how it usually happens. Most women who are diagnosed with breast cancer go for their annual screenings every year, and every year they get the "all clear", and then one year something shows up in the imaging, they have a biopsy and they end up with a diagnosis of breast cancer. While most breast cancers have been in the breast for 3-5 years before they are discovered (some as long as 10 years), during this time the cancer is too small to be detected by any imaging. And then, at some point, the cancer grows to the point where it can be seen on imaging, and that year, it shows up and is detected. Complicating this is that different modalities of screening "see" different things, and screening can be less effective/accurate for those with dense breast tissue. So while a lesion may start to become visible on imaging at about 5mm in size, depending on how the lesion presents and where it sits in the breast, depending on patient's breast density, and depending on the type of screening done (mammo, 3D mammo, ultrasound, MRI), often breast cancers are not found until they are significantly larger than that. Except for women who are being monitored for a lowly suspicious lesion, for most women, the finding of a breast lesion comes out if the blue.

Good luck with the biopsy! I hopes yours is a benign 4c

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Jun 22, 2020 10:00PM CrowLuv wrote:

Beesie, thank you so much for your detailed reply, it was very helpful, and no, you did not scare me. I'm the kind of person who wants to have every bit of information possible for mental and emotional processing - for me, having more knowledge about something I'm dealing with (medically valid info, not your standard WebMD lol) actually calms me. Being in the dark does the opposite.

I guess maybe (?) many women, myself included - during workup, think "it won't be me, they're just being careful" - I don't know...but I should know better for sure. I have a history of some significant health challenges, but not cancer, and I guess my mind just defaults to "nope" on that? Opening my mind to the possibility that I could possibly, in fact, be dealing with BC makes my mind go into instantaneous denial, but OTOH, I'm still trying to learn as much as I can about a world very foreign to me (you know, the "it doesn't run in my family," "I don't have the risk factors," state of mind and so on), and the first part of calming myself is to consider it, take a deep breath and then educate myself on what that could mean, so I'm not completely gobsmacked.

All of this rambling is my stream of consciousness right now and my oddball way of saying, "okay, I have this new information, I need to do process it, and do some more mental prep" and I want to thank you for all of the helpful information. Hope for the best, prep for the worst, etc. etc.

Take care!

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Jun 23, 2020 03:07AM SondraF wrote:

I had depression and fatigue for up to two years before diagnosis that I attributed to highly stressful work situation and being at an age of feeling profound disappointment with everything overall (42 at diagnosis). Then I had a back injury about 4 months before diagnosis that I dismissed as it was a standard, recurring injury for me (to the pelvis) and I have a bad back anyway. Only I did start to feel nauseous after the injury and wasn't feeling well at all last summer. Having had no breast cancer (or any cancer at all really!) in my family, I didn't even think about that, although I did have some breast changes, which I attributed to an old reduction requiring an update. Looking back I feel like such an idiot, but if its not on your radar you just don't get it. Too young, never smoked, no family history, ate reasonably well, rarely sick, walking almost 3 hours a day, hell I hadn't even taken any form of hormonal birth control in over 12 years. But here we are. I do think had we remained in the US this would have been caught far sooner as the UK does not do mammogram screening before 50 and you do not do annual exams - its every 3 for a pap (I had to request one!), its done at your GP, and no one touches/looks at your breasts.

I hope your outcome is better than mine, but its amazing what some of these drugs can do. I had forgotten what it felt like to have energy and pep and now mentally feel back to how I felt about four years ago. My back is still a mess though its a lot less painful than it was and I can mostly move and exercise within reason - actually, I have to keep it moving otherwise it hurts more.

Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Targeted Therapy 11/29/2019 Ibrance (palbociclib) Hormonal Therapy 11/29/2019 Femara (letrozole), Zoladex (goserelin)
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Jun 23, 2020 06:23AM Rah2464 wrote:

Crowluv what a great name. They are fascinating creatures aren't they?

Sorry you are finding yourself here waiting for results but I am so thankful that you are checking everything out. I truly hope all your symptoms are related to your thyroid issue.

I had extreme fatigue for several months before my diagnosis. You definitely could not sleep it out. I remember having to just lay down for 15 min or so after working on the farm, then back up and at it only to have to lay down again an hour later so absolutely no stamina. I also had a heavy sensation in my breast although I could feel no particular lump (I had dense breast tissue and the mass was close to my chest wall). I will admit to also having that inner voice telling me repeatedly "something is wrong".

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 23, 2020 12:34PM CrowLuv wrote:

Hi SondraF, thank you for sharing about your experience, I would take issue with you saying you "feel like such an idiot," be kinder to yourself, I can 100 percent empathize with how random awful symptoms just don't add up to "something is wrong in my breast(s)" - it's understandable.

I'm sorry you had a delay in getting your dx from being in the UK, I'd feel bitter about that myself. It sounds like you are doing well (?) and I'm happy to hear that. Thanks for your input, really appreciate it.

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Jun 23, 2020 12:55PM CrowLuv wrote:

Hi Rah2464, thanks for chiming in with your symptoms and experience, it's very helpful. I'm so glad you like my username! I'm nuts about crows, they are so funny and clever, I collect figurines and anything crow related (my coffee mug has a crow and says "CAWFEE" ha ha).

The fatigue and lack of stamina you describe is EXACTLY what I've been enduring for months now. I can't do anything (doing housework, running errands, etc) without then being hit with such a wave of fatigue I have no choice but to lay down and rest/nap to "recover." And I'm way too young for that (49 almost 50). I'm going to bed earlier and earlier every night, I get plenty of sleep but during the day, there's a definite difference between feeling "sleepy" and feeling a bone-deep fatigue and the no stamina is awful. I cook dinner and it wipes me out kind of thing.

When you wrote: "I will admit to also having that inner voice telling me repeatedly "something is wrong"." it gives my mind that "DING DING DING, BINGO" nod of agreement. Something is definitely wrong with me, my health is just in the tank. Whether or not it's just the parathyroidism or that PLUS something else amiss, I don't know. But I will say this much: after that dx, and before any of this out of the blue breast workup - I felt deep in my gut, "this is more than my thyroid" - I keep thinking in my mind "I feel like something inside of me is eating me from the inside out." Sounds kind of gross, but my point is, I think my body is telling me something. Of course, doesn't mean I have BC - but maybe I do, it wouldn't at this point be "crazy" to consider it a possibility.

Whatever the case, I so appreciate your sharing about your experience, thank you.

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Jun 23, 2020 01:05PM Sabbymama wrote:

Hi CrowLuv,

I'm so sorry you are dealing with all this stress and I certainly hope things turn out for the best. I found a lump back in April 2019 and had an ultrasound, which (incorrectly) indicated that these were normal glandular changes. I foolishly waited several months to confirm that with a mammogram as we were in the process of an international move and I simply was too busy. Big mistake. In March 2020, the mammogram was followed by two immediate biopsies and an MRI the following week, all of which confirmed malignant tumors (lobular carcinoma, DCIS, and positive lymph node). It's been a whirlwind and I have been back in the US receiving treatment, separated from my family, ever since.

Prior to the diagnosis, I can say that I was very fatigued, had overall weakness, and found myself napping daily, which my husband found alarming as it is something I was never able to do in the past. I attributed it to the stress of the move, some health issues my daughter was facing, and the stress of settling into our new life in Belgium. In hindsight, I think it was probably the cancer. I also had some strange rashes, including a dry, blistery patch of skin on my palm that persisted for almost a year. My doctor thought perhaps it was dermagraphia or severe dyshydrotic eczema and we tried steroids, creams, antibiotics, etc. to no avail. Amazingly, it disappeared after my mastectomy. Very odd.

I hope you get positive news and can move forward to good health. Being fully prepared and educated is indeed very important and useful, but please be careful not to read too much. It can be completely overwhelming and counterproductive! Take each step that you need to take and focus on one day at a time, that is the only thing that has kept me sane ;). Good luck!


Dx 3/2/2020, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- (FISH) Surgery 4/9/2020 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 5/25/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/13/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/11/2020 Arimidex (anastrozole)
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Jun 23, 2020 01:58PM Sunshine99 wrote:

Interesting topic. Personally, I hadn't noticed a big difference in my level of energy, although I did have pneumonia last November. My husband said to me after my most recent diagnosis that he had seen a big change in me in the past year. Just not so much energy, etc. I started having some pretty bad hip pain last year starting around the end of September. An X-ray (I think in October or November) just showed some arthritis. I'm pretty sure that what I was feeling was the mets to my hip. It showed up on the bone scan in March/April of this year.

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Jun 23, 2020 02:42PM CrowLuv wrote:

Thank you for sharing your experiences, Sabrina - I'm so sorry you had to go through all of that PLUS the misleading ultrasound. I had an abnormal diagnostic mammo, but the ultrasound said "benign" and I at that point was under the (mistaken) impression that ultrasound trumped the mammogram - I was wrong. Doc, unconvinced by the US, sent me for breast MRI - and well, here we are. I feel lucky the MRI was ordered as I can at least get to the bottom of this sooner than later.

Funny you mention the skin issues, I have some weird ones too, odd rashes - plus very easy bruising - huge ugly bruises all over my legs that don't correlate with bumping them into anything, and yet, my CBCs don't show any platelet problems, so it's just a shrugged shoulders from the doctors situation about that (nothing against them, what else is there to look for when you look like a rotten banana if it's not a platelet problem?). It's all so...weird! My symptoms seem so....random...I just feel like my body is falling apart and I really want something to tie it all together. Maybe it's all the parathyroid/thyroid, but the endocrine surgeon doesn't think so. We shall see.

Good advice on not reading TOO much. I'm not on a Googling spree - mostly I've looked up some (though not all) of the specific language used in my MRI and dx mammogram report because I hadn't heard them ever before (architectural distortion, focal asymmetry, things like that). What I find hasn't made me panic, it just gives me an answer as to why they are continuing to "investigate." Hope that makes sense.

Mostly I'm catching up on reading books I've procrastinated on for awhile. :)

Thank you so much again for sharing, hearing from other women about their experiences is helpful for me!

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Jun 23, 2020 04:00PM MBPooch wrote:

This is an interesting post. A couple years ago when I was diagnosed with Pagets/DCIS the pagets made it pretty obvious something was going on. Been rolling along on the blissful train for almost 2 and a half years when I noticed an achy feeling in the outer edge of my left breast going up to my collar bone and armpit, even in my back on the left side. I think I'd been feeling it for a couple months but always attributed it to a hard workout until the ache was constant a couple weeks ago. Neither my GYN or myself can feel any lump, just this constant ache. I had an MRI today so will be interested yet terrified of those results. The tech asked me afterward if I wanted to look at my scan, she couldn't get over how little scar tissue I had and that you can't even see it on my incisions. Kudos to my surgeons I guess! My untrained eye was trying to find something ominous but I had no idea what I was looking for, will be anxiously awaiting the results!

Dx 10/16/2017, DCIS/Paget's, Left, 1cm, Grade 3, 0/3 nodes, ER+/PR+ Surgery 11/29/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 23, 2020 07:23PM CrowLuv wrote:

Hi Sunshine, thanks for sharing your experience with me - interesting that your husband noticed, the ones who love us notice little things we shrug off, I think. Very sorry to hear about the mets to your hip, it's upsetting that things like that can be missed and dx as arthritis, I see that a lot in the stories here...

Wishing you all the best.

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Jun 23, 2020 07:26PM CrowLuv wrote:

MBPooch, I'd be terrified too, I'm so sorry you're having to go through this. I'm sending you all my best wishes that the report is good, AND that you get relief from that pain! If you have the time, I hope you'll update here, as I'll be thinking of you. If not, I understand, you have bigger things on your plate/in your mind. Regardless, please take care.

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