Advice needed - symptoms ongoing for over 18 months now
Hello everyone. I posted on here a few times many months ago, but considering I’m still suffering with no answers, I decided to come back for some advice. First, I no longer have a gynecologist that I feel comfortable with as the woman I was seeing left the group and since then I’ve been bounced around with no relationship whatsoever with anyone new. I do like my primary care doctor, but he’s not an expert on women’s issues. I’ve already been to him for my problem and didn’t really get anywhere. My issues are ongoing pain and swelling in my left armpit, on and off swelling in my left arm and hand, and swelling in my upper back next to me armpit. I cannot put my arm flat to my side due to the swelling. I have on and off left breast pain, nipple tenderness both sides, and occasional pain in my right armpit. I also have pain in my ribs on both sides that comes and goes. I’ve been experiencing all of this for over 18 months now. I’ve had a mammogram, breast exam, ultrasound, and armpit exam. Nothing has been found. However, since this all started I’ve been researching and come to find out that the typical screening tests are not all that accurate, particularly for those with dense breasts like me. Anyway, I need relief but I don’t know where to go from here. Do I ask my primary for an MRI, do I find a breast specialist, I just don’t know. I’m so tired of the pain, fear, and anxiety. I’ve had a horrible few years caring for my mom during her battle with lung cancer ( which she lost in September) and I’m at my breaking point. Has anyone experienced the same symptoms as I’m having? Everything I read points to breast cancer that has spread to the lymph nodes which I know is a very bad thing. Since it’s been so long I am afraid that if it is cancer, it’s got to be pretty bad by now. Can anyone help with where I should go from here? Thank you if you got this far.
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Oh, @anxious66 we're so sorry that you continue to have so much discomfort! It does sound like you should ask your doctor if they could do an MRI. It doesn't mean that it's cancer, but you do need some answers and resolution! And if your primary doesn't offer that, perhaps seeking out a breast specialist would be the easiest approach to get the additional tests you need. We're sending you gentle hugs.
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Thank you for responding. My primary has already offered to order an MRI if I want one ( this was the last time I went to him when he ordered the ultrasound) so I will start there. I typically go to my local hospital’s breast center for my mammograms and ultrasounds. Do breast centers typically do MRI as well?
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Sorry you don’t feel heard by your care team. The number one thing I tell everyone is to seek another opinion at an outside facility, like another women’s health group. I’m not a doctor or expert on anything except getting second and third opinions, and coming to terms with health anxiety. It sounds like an mri could be reassuring to you, but also try getting a counselor to help. You can have pains and inflammation from so many natural and benign reasons, so it’s good to have skills to help manage that roller coaster of anxiety. I have another cancer and had three months of extreme tenderness in my lymph nodes and breast bone I was sure was cancer progression, but turns out it was inflammation. Radiologists are good at distinguishing between cancer and normal inflammation from illnesses, so find the provider you feel safe with then let them be your guide.
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Thank you for responding. It’s not that I don’t feel heard - my primary is very kind and caring and listens to everything I say and will order any test I ask for or that he deems necessary. The problem is that I’ve had the recommended investigations, everything checked out fine, yet I still have the pain and swelling. I definitely suffer from anxiety on a regular basis but it normally manifests itself in the form of nausea. On top of the issues I already have, today I noticed some light vaginal spotting and I’m almost two years post menopause. I know that post menopausal bleeding is not normal so something new to worry about. Looks like I need to find a good gynecologist for this new development. I’m not sure I can take much more. Caring for my mom during her cancer battle has really left me traumatized. She was so brave and I’m so not brave. I’m terrified of all things medical. Sorry for the whiny rant. I’ve not told anyone about any of this so posting on here is my only outlet.
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First, I'm so sorry for your anxiety and for what you went through with your mother. You are not being whiny whatsoever; all of that is so much to handle and process. :(
I've had a somewhat similar experience. Peri-menopausal with left sided consistent armpit pain for 6 months. I have dense breasts and have had several biopsies over the years, so I'm always on high alert with breast changes. During my mammogram they put a sticker where I was having the pain to focus on that area and didn't see anything. I had a clear mammogram which rarely happens, usually I'm back for a biopsy or another scan. But, my PCP was proactive given I was having consistent pain and had me go in for an ultrasound. I'm near all of the Boston area hospitals with excellent cancer care centers; they were really thorough on that armpit area and saw nothing (however, they did pick up another - what we feel is likely benign- mass that the mammogram didn't; following that for 6 months, it's presenting really similar to all of my other cysts which were biopsied).
My armpit pain has some pattern to it which seems related to my hormonal cycle. After my ultrasound, I saw a breast specialist who also looked at the area, the ultrasound and mammogram and said she felt strongly it was hormonal. It almost feels like a clogged duct similar to what I had when I was nursing my daughters 15 years ago.
The breast specialist calculated my risk score and because I was greater than 20% (family history, dense breasts, etc.), I was approved for an MRI. I just had that last week and they saw nothing on the MRI related to the armpit area (all lymph/axillary areas were fine/clear). They did find one very small (5mm) non-mass enhancement that was concerning (BI-RADS 4), so I'm going back for an MRI guided biopsy next week, but they reassured me that my armpit area looked completely fine on the MRI (I was VERY concerned about the pain and lymph node involvement…even if it wasn't breast cancer, I have family history of many types of cancer).
Long story short, I feel reassured that it likely is hormonal (which makes sense based on how the pain ebbs and flows around my cycle), but it's essentially always there causing me to worry. I spent many sleepless nights convinced I had cancer, so it was helpful to know my lymph nodes look totally fine. I would take your doctor up on the offer for an MRI for that reassurance. I also have health anxiety that has gotten worse in my peri-menopausal years; it's exhausting to worry so much. I'm sorry you are dealing with these worries; I hope you get some answers.
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Thank you so much for your detailed response. I really appreciate that you took the time to tell me your situation. I’m post menopausal so no more cycles but oddly enough all my pain and swelling started when my cycles stopped. Do you still have the swelling? Mine ebbs and flows too but is never completely gone. I did notice the more anxious I am the worse it gets. Do you have breast pain too and are all your issues just on one side? I’ve no history of any female cancers in my family but I know that doesn’t mean much. Hardly any cancer at all actually. Mostly heart disease. I think I need to put my big girls pants on and get the MRI. I’m due to see my primary soon so I’ll have him order it. I’m just so very afraid that it will be cancer because I’m not sure I can handle what would need to be done to take care of it. I had a skin tag removed from under my eye yesterday and nearly had a panic attack while waiting and then while the eye surgeon was removing it. I wish I were braver.
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@anxious66, the best advice I can give is to get the test and take one day at a time. I hope you get some answers. But I note that - as wonderful as the medical profession is - there are still things that science has not discovered about the human body. Sometimes there are no answers.
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@anxious66
I strangely enough never had swelling per se; just consistent pain where my armpit meets my left breast that peaks in the few days leading up to actually getting my period. On the months where I don't get my period (I go through stretches of 3 or 6 months, but haven't gone an entire year), I still feel the same general cycle of pain, but don't get the relief from the pain like I would if I were to actually get my period (if that makes sense). The only breast pain I get is also consistent with cycle pain. My armpit pain is also never completely gone and while they did a thorough review via mammogram and ultrasound, it wasn't until I had the MRI that I felt more convinced it was hormonal (when my lymph nodes/axillary checked out fine). As anxious as it sounds like the MRI will make you, I think you should schedule one. Even though my MRI revealed a small suspicious area, knowledge is power. I advocated for the MRI for this reason (to catch something early if it is indeed something knowing the mammograms and ultrasounds weren't revealing everything). I'm relieved that what they found is very small and they don't think it's at all related to my armpit pain which they feel is hormonal given the rule-out process. As you said, put those big girl pants on and get the MRI, you'll be happy you did because you will have more information instead of wondering/worrying. Be brave, rely on friends/family where you can to support you through the appt! And we are here to chat anytime!
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i will be asking for the MRI. I have been researching nearby places to get it done. I’m just petrified that I’ve let it go on for too long and if it is cancer it is going to be really bad. I’m also angry that I’ve never been told that the mammogram coupled with the ultrasound isn’t always enough to detect problems in dense breasts. For the past 15 or so years I had thought I’d been doing everything right only to find out that I should have been doing more. Then there’s the slight bleeding I’ve been experiencing that needs to be dealt with. I can only handle one thing at a time though. I’m surprised I haven’t had a stoke from all the stress this is causing me. Thank you to everyone who has responded.
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how are you doing? I can very much relate to the stress of this and not having a stroke yet.
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I’m afraid I’m am no further forward then when I made this post. I haven’t plucked up the courage to see the doctor for the MRI. I’m simply beyond petrified of finding out I have cancer. Caring for my mom during her battle has traumatized me and made my health anxiety so much worse. I don’t think I could go through with treatment even if I do have cancer. I could barely walk I to the infusion center with my mom when it wasn’t me getting treated. I’m still struggling n a lot of pain and still having such anxiety though that it’s my life miserable. I know I have to do something about this I just wish I had my mom or a sister to hold my hand and help me through. I’m miserably terrified.
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I can certainly relate. Being that it’s further along in the month, I hope in this time your symptoms have improved. I can tell you that I was the same way. I couldn’t bring myself to test. The doctor can also give you Xanax leading up to the test I have learned.
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I did get the order for the MRI but did not schedule it yet as we left for vacation a few days afterwards and just returned yesterday. I will be scheduling it tomorrow as I need answers before I head back to work in the fall. I already have Xanax thank goodness otherwise I’d have gone crazy by now. As I stated already I am scared of all things medical so I’ll need the Xanax for the test. If you don’t mind sharing, what was your outcome after your testing?
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My last test was November. I had a mammogram and ultrasound. My MRI is scheduled for 9/23. I am trying to get it moved up. I am not a doctor, but I hear a lot of stories like yours on the fibromyalgia board. Women start getting pain in that area and we freak out. I have been having symptoms for almost 10 years and nothing has shown up. I am scared that I have something that they are missing. My last MRI had liver cysts that weren’t there a couple years ago. Geez- what a wild ride we are on, I hope you get some clarity with the MRI.
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unfortunately I had to cancel my MRI that was scheduled for today because I have Covid and I’m really sick. I’ve about had all I can take at this point. I’d say that after 10 years of negative tests that you don’t have cancer but obviously something is going on that is causing you discomfort. I hope you too find the answers you are looking for and I appreciate that you responded to my post.
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