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Lots of symptoms and worried

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please tell me if I'm over reacting, or under reacting. I tend to under react and don't go the the dr until things are at a breaking point, and really bad.

Short back story...family history of BC, dense breast, 3 benign masses in rt. Breast 3 yrs ago. Was suppose to follow up at 6 months to watch things, and never did because of covid.

About 2 yrs ago I started getting shoulder pain in the rt. Side, but know I didn't have an injury to go with it. Had an xray done, it showed nothing. So they sent me on my way. Pain came and went, came and went. But the last 9 months has been a steady constant pain. Worse at night, feels deep...not muscle/tendon, as it doesn't hurt to touch it. Pain has now moved to my right collarbone, and the upper part of my spine(radiating through my right side scapula area.)

In the last 3 months, I have lost almost 20 pounds, which is unheard of for me. I can NEVER lose weight even when I'm doing everything in my power to do it. This is going down about a pound a week without trying. I have be slightly nauseous for the last 2 months, and less appitite, but am forcing myself to eat as normal as possible. So that's not where the 20 lbs has gone.

I've also been having crazy night sweats for about 3 months. But my thyroid levels are good, and I'm still young for menopause (37). And extreme fatigue for the last year or so.(10-12 hours of sleep at night, plus a 2-3 hour nap during the day...and still exhausted).

Then to top it all off... I found a breast lump about a month ago. It is pretty high up and was out of the area that the mammogram could see. It is below my collar bone, about 1.5 inches below, and maybe 2-3 inches away from my armpit on the same side of all the bone pain. Armpit is also slightly swollen.

When they did the mammogram and ultrasound, they only found other masses on the mammo(which he assumed were cysts, but didn't biopsy). Then with the ultrasound, the tech. And radiologist couldn't find anything where my palpable lump is. It's large enough to be felt by multiple people, and feels like 2 lymph nodes(maybe under the pectoral muscle). And they could even feel it with the ultrasound wand. But nothing showed. The radiologist finally pulled up what he called a tiny little lump of fat under the skin(even though my lump feels deep down). It was so small, he didn't even take pictures of it or measure it. And it only appeared on the screen everyonce in a while while he was trying to show me. A tiny mass he can barely find in the ultrasound just doesn't match up with the 1.5 inch lump we can feel. They also did not scan my swollen armpit. But he said I was young, so come back in a year.

Followed up with my PCP a week later. And he said I should just trust the imaging. But wanted to do basic bloodwork for my other symptoms, and get me in to the ortho for my shoulder pain. (Still haven't got that appointment). My bloodwork came back mostly normal. But my calcium is right at the border (10), my alk.phos. is higher(105), my protein is right at the border (8.1) and my anion gap is right at the border (12). All of these numbers are pretty large jumps from all of my previous bloodwork from over the years.


Wow. Sorry for my book. I guess I just need to hear if I'm being crazy for thinking they could be missing something big that my body is trying to tell me. Or if I'm just overly dramatic, and need to just trust the results and deal with it. I just can't shake the feeling of something not being right with my body.

Comments

  • rah2464
    rah2464 Member Posts: 1,192
    edited May 2022
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    SSC you have been through the wringer sounds like. Yes, you are young for menopause but perimenopause is difficult and those symptoms can start in your thirties for sure. Symptoms and impact to your body can be all over the place and make you think you are losing your sense of reality. Hormonal imbalances can change the way you burn calories, impact sleep you name it.

    You mentioned that there is a family history of breast cancer and that you have dense breast tissue. Are you under the care of a breast surgeon? And if so, has there been a discussion of doing an MRI to get proper imaging of that lump that you feel (which may very well be a swollen lymph node). No one knows your body quite like you do so there is grace in speaking up until you are heard.

    I think you have to try process of elimination which is what it sounds like you are doing. Weight loss and fatigue coupled with lymphatic swelling, your body is fighting something. Did you by chance have covid? I hope you are able to get additional imaging to clarify what you feel and that you get some answers.

  • wondering44
    wondering44 Member Posts: 252
    edited May 2022
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    ssc,

    You are not overreacting. Please keep looking if you are not 100% sure you are okay.

    Here's my storybook -

    I found nipple discharge on breast exam 09/2021. Ultrasound found no correlation. The breast surgeon politely told me to eat crap. My night sweats started end of 12/2021. I had swollen lymph nodes seen on ultrasound 01/2022. Two additional ultrasounds in 02/2022 showed no swollen nodes. I did have covid in 01/2022. That probably explains the swollen nodes. I also had a mammogram in 02/2022 with one of the ultrasounds due to my complaint of continued nipple discharge and two lumps I found during breast exams. The ultrasound and mammograms came up empty. The results read that there was "no correlation to patient findings." My PCP sends me to get an Endoscopy for nausea, upset stomach, and weight loss (next week). I start thinking I must be a tad crazy and need reassurance that I don't have cancer. I switched my care to an out-of-state facility and begged not to have further imaging done at my local facility (due to prior cancer dx). The new facility chose to re-scan, and all of the patient breast findings were correlated on 04/2022. I have two biopsies scheduled this coming week at the new facility. The two lumps I found appear on MRI are oval and are most likely benign. It was great to read "most likely benign" and that I'm not crazy since the lumps were there (Persistent enhancement and T2 hyperintense). MRIs are set up to follow the two lumps. The two biopsies I have scheduled are for the nipple discharge (linear/ductal non-mass enhancement/T1 enhancement and washout) and seven areas of clustered Microcalcifications not found on my 2022, 2021, 2020, 2019, and 2018 mammograms. I pulled my prior imaging and correlated both areas of concern on all imaging (areas are larger now). Now I wait for biopsy results and cross my fingers I get benign results this year. The good news is that the out-of-state facility did not find any spread of cancer to other areas. Today, I know I have peace of mind and moving forward I will have the proper care if I need further cancer treatment.

    Doctors read Radiologist reports, and Radiologists don't always get it right. Perhaps some cancer missed on mammograms is the lack of radiology skill sets, and women should stop thinking they did something wrong between mammograms.

    Keep pushing if you are not satisfied with the results. I didn't know years ago to push for additional imaging or that a negative mammogram didn't mean I did not have cancer. Had I known, I may have been able to keep my other boob.

    Women should not have to push to get scans. I read that "pushing" seems to be a correlated finding for breast cancer patients. It doesn't seem right.

  • alicebastable
    alicebastable Member Posts: 1,939
    edited May 2022
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    Issc110907, think that since this thread is for the possibility of recurrence or metastatic cancer, your question might belong elsewhere since you haven't had cancer. I'll tag the moderators (if it works) to move it to one of the appropriate newcomer threads.

  • kbl
    kbl Member Posts: 2,682
    edited May 2022
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    Hi. Please read my post. You'll have to scroll to the top. Do not give up trying to find what's happening. I would go for an endoscopy and ask for biopsy, even if it looks normal. Mine did. Thank goodness, he took biopsies anyway.

    https://community.breastcancer.org/forum/8/topics/877339?page=2#idx_17

  • wondering44
    wondering44 Member Posts: 252
    edited May 2022
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    kbl,

    I read your post.

    Thank you for sharing your story. I hope other women who question results read it.

  • Ssc110907
    Ssc110907 Member Posts: 22
    edited May 2022
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    wondering- thank you for the kind words and sharing your story with me. I'm amazed reading about so many woman on here who had mammos and ultrasounds show nothing, when cancer was clearly there. That's another part of the picture I haven't even thought about. I had an area of microcalcifications on my 2019 mammo. And on this last one, it was noted that " calcification in both breast have become more numerous". But...that was that. No biopsy. At the 2019 appointment, the radiologist wanted to biopsy anything she saw just to make sure. But this radiologist was the opposite. He said multiple times, "I'm assuming this is...just a larger cluster of cysts...just a fatty lump...just dense breast tissue."


    Rah- I know I need to push for answers...I just suck at it. Haha. I really so not like going to the drs, and have a hard time voicing my thoughts to them. I was seen at Seattle Cancer Care back in 2019, but the breast specialist there was not kind. She pretty much laughed at me because of my age. She wouldn't even agree to do genetic testing until I asked my father to do it first( he has prostate cancer, both his sisters have BC, his mom had BC and his dad had Colon Cancer). So... I probably should just go back to SCCA and hopefully get someone else. Because I'm in a tiny town that doesn't have great medical reviews. Most people in my town go to Seattle for anything medical. 🙄 In the mean time, I'm going to keep pushing my PCP to keep doing the process of elimination. There has to be SOME reason for all these symptoms. Even if they arent all connected. Do breast MRIs see higher up than mammograms? Or would I need a chest mri because how high up the lump is? It's about a 1.5 in below my collar bone.


    Alicebastible- sorry if I posted in the wrong spot. I read the thread as "not diagnosed but worried about reccurance or metastasis ". And that would be me. I'm not diagnosed, but I am worried that my symptoms line up very closely to bone metastasis. And I have read lots of ladies on here who go from nothing to bone metastasis right from dx. Again, sorry if I'm in the wrong spot. But I did get many very helpful responses of woman who were once in my same shoes with similar symptoms, but clear scans.


    KBL- I actually have read your story on other posts. Thank you for sharing. Your story is exactly what I am afraid of. Im afraid that because I'm not in the high risk age group, the drs tend to brush over us like like we aren't at risk at all. I worry that something is getting missed, as all my symptoms are just getting more severe. And maybe it's my fault, because I don't question the drs answers and push for more tests. I just let it be and hope it does away. My HOPE right now, is that at my ortho appointment for my shoulder pain, they will do a scan, and find an answer for atleast that. And maybe that will help lead us to answers on the other symptoms going on. How much weight did you lose before your dx? That's one of my biggest symptoms I worry about, because it is sooooo un like me to lose weight, even when I'm busting my butt to try. So 20 pounds in 10 weeks is crazy.


  • kbl
    kbl Member Posts: 2,682
    edited May 2022
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    Wondering, thank you for reading.

    Ssc, thank you for reading my story as well. I lost 17 pounds in a matter of months. I weighed 134 to start, so if I had kept losing, I would have been in trouble. I have been as low as 114, and I'm short, 5'1". Are you having trouble eating or getting full quickly? That was my symptom.

    I am another way cancer spread can happen. There has never been cancer found in my breast, so I am occult and de novo. No cancer seen in my breast to this day. The new FES PET for lobular sees it in my stomach but not in breast. Scans aren't always helpful.

  • barbojoy
    barbojoy Member Posts: 47
    edited May 2022
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    I agree with the others who recommend that you continue to pursue. I wish I had followed my gut, but when a biopsy came back negative in 2020 and the doc left me a voicemail that it was not cancer, I simply accepted that because it was what I wanted to hear. I was diagnosed w/ breast cancer a year later. I should have pushed for an MRI or additional biopsy but I just didn't know enough back then. It may be nothing to worry about at all, but with dense breasts (as you know) detection can be challenging. There is also genetic testing to consider- there are many markers (not just BRCA) that can be tested- your PCP could probably order that... Best of luck!! Keep us posted.

  • sabbymama
    sabbymama Member Posts: 82
    edited May 2022
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    I would definitely get a second opinion. I was living in Lithuania on a diplomatic assignment when I found my lump, and I had an ultrasound where they told me it was just "normal glandular changes" and not to worry so I let it go and planned to do a follow-up mammogram when I was back in the US. Unfortunately, I couldn't get an appointment for a mammogram during my time there, so it got delayed by a few months and when I finally went for a mammogram after moving to Belgium, the doctor did an immediate biopsy of my lump and two lymph nodes. She then called my doctor at the Embassy and told her that I have cancer and she ordered an MRI to see if there was any additional spread. I turned out to have not only the IDC, but a large area of DCIS, and 4 positive lymph nodes. Like you, I was sleeping a LOT and that was very unusual for me. And while you may be young for menopause, I did start mine at roughly 41 years old, so it is possible you are "premenopausal". I think you should seek out a breast surgeon and have them order some scans. At the very least, it will provide you with some peace of mind and hopefully rule out cancer. Good luck!

  • Ssc110907
    Ssc110907 Member Posts: 22
    edited May 2022
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    KBL- yes, I am feeling full after maybe 1/4 of what I would normally eat. I'm trying hard to push past it though, so I know I am atleast eating "enough". I also have added in more high protein and high calorie foods, so it can make up for the eating less.


    Barbojoy- thank you. I do need to just keep pushing until I have answers to the symptoms. One set of imaging and one round of blood tests isn't enough to just say nothing is wrong, and ignore all the other symptoms happening with my body. Its obviously trying to tell me SOMETHINGS not right.


    Sabbymama- uhg. It's so frustrating hearing soo many woman's cancer gets missed. Especially when there is a lump shouting.."Look at me...look at me!" I'm glad you pushed on and got checked out a second time.

  • kbl
    kbl Member Posts: 2,682
    edited May 2022
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    please ask for an endoscopy with biopsy. It could be a hernia, but you don’t want to wait. It’s not something to mess around with when you lose that much weight and have appetite changes. I waited six months. Don’t be me

  • jelson
    jelson Member Posts: 622
    edited May 2022
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    Hyperparathyroid causes high calcium level and fatigue amongst other symptoms. I believe levels of the parathyroid hormone are not usually checked. Might be something worth pursuing with your primary doctor. Sorry for all that you are going through - I hope the cause for your symptoms is found quickly and easily corrected.

  • rah2464
    rah2464 Member Posts: 1,192
    edited May 2022
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    SSC good point about the location of this lump it could be outside the field of a breast MRI. I would have a conversation about imaging strategy with that new, responsive, concerned breast specialist you are going to find. Please let us know how you are getting on.

  • Ssc110907
    Ssc110907 Member Posts: 22
    edited May 2022
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    after waiting 2 weeks for my PCP to get back to me on my blood work, and anything else he wanted to check for....nothing. he never reached out after he got the results like he said he would. And never even put in the referral to the ortho. For my shoulder pain like he even wrote in my after care notes. Frustrated!

    I mychart messaged him, and he said to just let him know if my symptoms get worse, or my lump gets larger. 😒

    So...I called and got myself scheduled for an ortho appointment on my own. And got me scheduled for a second opinion back at Seattle Cancer Care. Hoping one of them can get me some answers!

  • rah2464
    rah2464 Member Posts: 1,192
    edited May 2022
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    Keep working at it SSC I know you will get the answers you need. Sorry you have to push.

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited May 2022
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    I just found this thread and wanted to add my voice to the group saying you are doing the right thing to push for answers. I was 37 and people told me for years before that my lump was nothing. It sucks to have to be the one to push but do it. I wish I had known I should have.

  • katg
    katg Member Posts: 206
    edited May 2022
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    To all i agree. Get to the cancer center. I went to the City of Hope and for everything they found, they kept looking and ordering tests and keeping me filled in. If the Dr. did not, the PA did. They always send surveys and always ask.

    ssc110907- You are doing the right thing. A lump of any size needs a look. When the doctor says they will do it, their team needs to help. If they do not have a team, find that Dr. that does. I checked my insurance with every Dr. that was added to make sure they were in my plan. From my Breast surgeon to my MO, to my gyno to my plastics. All were referred by the original. All read my report and talk to one another. I now right now in May of 2022, that going to the COH in July of 2021 was right.

    I agree with what was said earlier. You know your body. If it does not heel, it is not ok.

    Take good care of you.

  • Ssc110907
    Ssc110907 Member Posts: 22
    edited May 2022
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    katg- I wish I would have just gotten back in with the breast center right when I found the lump...instead of all this stress of staying at our local small town hospital. But I think having a bad experience 3 yrs ago with the dr. Telling me I was too young, and I should come back when I'm 40...made me not want to go back. Fingers crossed I end up with a new dr. Who will ACTUALLY be on my side.


    Parakeet- so was it your original lump that did turn out to be cancer when they finally dx you? Had they ever biopsies it before? What makes me so irritated with this situation, is the radiologist literally couldn't find anything on the ultrasound. And then looking back in my notes from my pcp at my follow up appointment, he wrote "reviewed mammogram and ultrasound findings, and no mass was found." And yet when I went into the followup appointment I told him my concern was that I have a large palpable lump, and the radiologist couldn't see anything, and I was worried something was getting missed or over looked. He smirked and said "must be a pretty tiny lump if he couldn't find it." I was so flustered, I didn't even have a response. But...he never once felt the lump himself. It's like he just assumed it was all in my head. If my husband can feel it (and gets grossed out by it)...its not in my head.

  • sondraf
    sondraf Member Posts: 1,581
    edited May 2022
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    Ive got nothing to add here other than I hate HATE the "too young (in your 30s) it cant be cancer so why are you worried/getting imaging" and "no family history so why are you worried/getting imaging" messaging that has filtered through everywhere. Ive seen this tale repeated a bunch of times on various forums,hell, my own mother said it to me. Logically I believed it. And so you question your judgement or believe what the doctors say, until its very, or too, late.

    Just a little fact from the American Cancer Society:

    image alt="" style="width: 453px; height: 110.967px;">

    So.... perhaps we should do something about believing younger women when they say something isn't right,especially as their cancers tend to be more aggressive! SEER data shows that new breast diagnoses in the 15-39 yr age group are up 0.5% per year over the last 20 years while the mortality rate is flat.

    https://seer.cancer.gov/statistics-network/explore...

    Id also argue (though with no proof) that ladies younger than 50 have lived through an era where new types of synthetic ingredients, plastics and packaging, and other potential (or now proven) carcinogens were introduced as markets and products expanded at a rate not known before 1970. Correlation is not causation,I know, and there are a lot of suppositions and unknowns in that statement above I am not going to put the time in to digging out statistics that may or may not exist, but it does make me wonder. At the very least I think messaging needs to change from the blanked Pink Awareness! to something more targeted. "rare under 40" doesn't seem so rare when its 10% of all annual bc diagnoses.

    Ok Ill stop my rant now, but keep pushing (and also -- the parathyroid question is a good one too, it may not be breast cancer but possibly a different one or a thyroid issue to be resolved)

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited May 2022
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    It was the same lump all along that turned out to be cancer. They never recommended a mammogram or did any testing on it. They just felt it during my regular exams and said it was nothing/normal/cyst/etc. It wasn't until other obvious symptoms began occurring that they finally sent me for a mammogram.

  • edwards750
    edwards750 Member Posts: 1,568
    edited May 2022
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    I think we are all in agreement no one knows our bodies better than us and being DX with breast cancer means you need to be your own advocate. Case after case of ladies questioning their doctors decisions when in the past what the doctors said was considered gospel. Do your homework. Ask questions.

    I lost a lot of weight before I got my BC DX in 2011. I thought it was because I had stopped eating sugar. Months later I got the call one breast is larger than another. BC, IDC Stage 1b, Grade 1. So far so good. I hit the 10 year mark last year. No guarantees but encouraging nonetheless.

    I have a friend who got the all clear on her mammogram but one of the attending physicians insistedshe could see something. Thank God she did. They found Bc. My friend had ILC and had a double MX. She’s alive today because of that doctor.

    Trust your instincts. After all it’s your body and your life.

    Diane

  • Ssc110907
    Ssc110907 Member Posts: 22
    edited May 2022
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    I'm still anxiously waiting for my Thursday appointment with the Ortho for my shoulder pain. And think I may have ruled out a few things, and possibly found out what's causing the shoulder pain. (Based on arm movement tests).

    I'm almost positive my ulnar nerve is being pinched at my pectoral muscle spot. My symptoms align perfect with it. (Shoulder pain, worse at night, tingling in pinky and ring finger, and certain arm tests will make the tingling happen almost immediately).

    But here is the kicker.... the spot that the ulnar nerve runs under the pectoral muscles is the exact spot that my palpable lump is!!! So it's possible that lump is either putting pressure on the nerve, or is wrapped around the nerve.

    So im feeling hopeful that the ortho. Will be able to get the ball rolling with both my shoulder, lump and weightloss.

    I wish Thursday would get here soon!!!!

  • lulu1985
    lulu1985 Member Posts: 1
    edited May 2022
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    hi! I’m in a similar situation and just looking for words of encouragement. I’m 35 years old, had bariatric surgery in December and have lost 100lb so far. Noticed a fairly large lump on Sunday. I am on my period. Saw my Dr this morning. She said she isn’t overly concerned, but wants mammogram/ultrasound and surgery consult because of its size. She said it is mobile and That was a good thing. I have worried myself absolutely sick over this though. Just need encouragement. :(

  • kbl
    kbl Member Posts: 2,682
    edited May 2022
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    lulu1985, I know how scary this is. We are here to support you, so as hard as it is to be patient until you have the screening, try to take a deep breath and know most lumps are benign. I’m sending you virtual hugs. Please keep us posted

  • moderators
    moderators Posts: 7,914
    edited May 2022
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    HI lulu1985, and welcome. We're so sorry for the worries that bring you here, but we're really glad you've found us. As KBL says, try to remain calm until you can get some answers. We're here to support you until you do, and beyond!

    Can you tell us if this is your first breast cancer scare? This thread is for those who have had breast cancer before and are concerned it is back or has spread. Just want to make you aware of the type of info you'll receive here. If you have never been diagnosed with breast cancer before, we'd suggest introducing yourself in the Not DIagnosed but Worried forum.

    Please keep us posted with what you find out!

    --The Mods

  • Ssc110907
    Ssc110907 Member Posts: 22
    edited May 2022
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    lula1985- when is your mammo/ultrasound scheduled for? I'm glad they are getting you in for that!


    So I had my appointment today with the Ortho. For my shoulder and nerve pain. Xray looked good. Showed a tiny bit of arthritis in there. But he didn't think it was enough to be the cause of everything going on. 😕 He also was concerned about the location of the mass, and said that it feels either in-between the pectoral.muscles, or below both of them on the chest wall. But definitely NOT right under the skin like the radiologist said. And thinks that it is possible the mass is putting pressure in the Brachial Plexus (causing the nerve and shoulder pain). He was not happy that they saw nothing, and just sent me on my way without any additional imaging or biopsy. So he ordered an MRI for my shoulder, and an MRI for the chest wall. And hopefully that will show us the mass, and what it's connection is with the shoulder pain. Then he said the next step will be to biopsy it most likely. He was fantastic, listened very well to my concerns. Told me there is no such thing as "too young" for cancer. And that he hates when drs. Say that. He said I know my body best, so he is going to let that take the lead. And if we don't get answers from this first step...we just keep looking. Which is exactly what I needed to hear!

    I also have an appointment over at SCCA on the 8TH of june. So im hoping this mri gets done before that. So they can also look at those. For a second set of eyes on that too.

    And...I JUST got a mychart message from my PCP this morning (almost 3 weeks after I saw him last and did bloodwork). And he made a note on all my results saying that everything looked good, and to come back in if my fatigue gets worse. !!!!! I was so livid about that. The fatigue was the least of my worries. And he blew every other concern and symptom off. He sent me on my way with major unintentional weight loss, night sweats, extreme fatigue, loss of appetite, a lump on my chest, and the shoulder pain....all with no answers because my blood work looked good. 😢 I don't think I want to go back to him.

  • rah2464
    rah2464 Member Posts: 1,192
    edited May 2022
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    SSC i am thrilled you have found a medical partner to determine what is going on with your health. You are a strong advocate for yourself and I truly hope that you find answers quickly.

  • wondering44
    wondering44 Member Posts: 252
    edited May 2022
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    ssc,

    The doc sounds great! Keep us posted on your MRI results.

  • Ssc110907
    Ssc110907 Member Posts: 22
    edited June 2022
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    hi everyone. Just wanted to jump on with an update. I ended up with covid, so my appointment last week at SCCA was rescheduled for this Wednesday.

    I had my MRIs (shoulder and chest) done this morning and have a copy of them to bring out to SCCA on Wednesday.

    The results give me a few answers...but still not enough. It looks like the cause of my shoulder pain is Caclific Tendonitis. So that's great to have an answer to for the 2 yrs of shoulder pain. I have a follow up with the Ortho next week for that, so I can figure out the next step there.


    Then for the lump.... the chest MRI does show something there, right up against the chest wall. But I think it's still unclear what it is, because the report says that i need further breast imaging (mammo and ultra sound...which I've already had, and shower nothing). So im not sure if they will redo the ultrasound, or move to a breast MRI (will that show better than the chest mri?) The report says that the findings look like asymetrical breast tissue (not a mass) that has signal abnormality. Not sure if any of that means anything though. 😕 so....guess I keep waiting till my appointment on Wednesday with scca, and the follow up with the Ortho next week.


    Is there specific questions I should be asking at my next appointment?

  • kbl
    kbl Member Posts: 2,682
    edited June 2022
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    ssc, I've had calcific tendinitis. My shoulder was so bad, it locked. It did that when I was 40 and then again when I was 50. Excruciating pain. I had injections both times, and thankfully, I haven't had it since. I hope you can get relief for that.

    I hope you get the answers you need at your appointment. I’m so sorry you got Covid and had to reschedule. The waiting and not knowing are also excruciating.

    Thank you for the update.