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DCIS + mastectomy now swollen clavicle node & other symptoms

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I'm worried, though statistically this "shouldn't" be happening, I had DCIS on my left side but got a double mastectomy due to my young age (35) and the fact my mom had her breast cancer return just 2yrs later on her opposite side. But now I'm having some issues with my right (prophylactic) side. I forget what happened first, but I had some numbness in my hand, I could feel my lymph nodes in my armpit kind of throbbing, and I've also had some swollen lymph nodes in my throat, I went to urgent care about 10 days ago, because I had discomfort swallowing and thought I may have some kind of infection. They were quite dismissive of me, and did some bloodwork. I don't have covid or strep or anything like that, most levels were normal. (Hgb was the only thing out of range - just a little high)

A few days after my blood was drawn I noticed a swollen node in my clavicle. Or at least I think it's a node, it's on top of a muscle so it's kind of hard vs being a nodule. I contacted my breast clinic about all of this and they gave me an appointment ONE MONTH from now. I'm on medicaid and go to an educational hospital, it's quite terrible actually (the insurance is good but the hospital serves mostly low income Latinos, and often has no regard for human life ie. used to sterilize women without their consent etc). The breast fellows I deal with are morons. The surgeon who did the right (prophylactic) side of my chest left tissue behind - I have a whole row of tissue below my scar, which makes me worry even more about recurrence (and has been more disfiguring than losing breasts, I've complained about it on here before but still almost 5yrs later have not found anyone to do a revision). I'll be pissed if I'm going to die over someone's incompetence. I know a clavicle node would be like Stage IIIC or IV. I am only 40 now.

Other symptoms -

back in July I felt some weird sensations around my scars on the left side. One night after laughing a lot I felt odd sensations deep on the right side of my chest only.

Back in March, after 2+ years of fatigue (I really haven't felt 100% since before my DCIS diagnosis in 2017) I FINALLY saw a doctor who listened to me and realized they should check my Vitamin D levels, it was at 8!!! when it should be 30-50. It is back to normal now, but I still have some fatigue. I also haven't been sleeping properly. That's alarming because I know vitamin D is linked to cancer. I live in a very sunny place, I didn't think having such a huge deficiency was possible.

Also a few (2-3) years ago my body odor changed, I used to ride a bike a lot and "never" sweat really. I could commute to work and not smell at all. Though my diet is much worse now (but better than the average American) and I started taking adderall for my fatigue. But I've heard BO can be a symptom.

I know I need to go in to get this checked out, but Urgent Care was useless, my breast clinic is useless and actually the place that makes me feel THE WORST out of any place I go in my life, because I did not get reconstruction. Arrogant young doctors who pretend to listen then twist my words and write inaccurate things in my patient notes/reports. It's like a rotating cast of incompetent people.

On my left side I had two lymph nodes removed, and have had swollen lymph nodes in my axilla since my surgery. It meant needing to get a biopsy on my very first yearly check up. I spent 1.5hrs with a needle in my armpit only to find they got muscle tissue. Then had to wait a month to redo it (hell) and the head radiologist decided to go after a different node because it was larger than the one with the clip/the one they did last time, and was closer/easier for the inexperienced radiologist fellow to get to. They only got two samples, benign. They are supposedly stable now. But I still feel like they botched that biopsy, in a way. I also had a biopsy on a cyst on that side blow the scar area, and they could not find the clip when I had a follow up ultrasound a year later.

I feel kind of doomed. I have never had this lymph node swell in my life. I guess my only option now is to go to the ER. This will be the 2nd time this year I will go to the ER (at another hospital) because of substandard care where I get healthcare. The other time I had a 5-6cm ovarian cyst. It's the first time cysts have been palpable or caused me discomfort/alarm. I guess estrogen is wreaking havoc on my body. I am very vigilant about my health but 8 out of 10 doctors I see are terrible, don't care and/or don't know what they're doing.

I looked through all of the posts in this section. It's alarming to see other women with swollen clavicle lymph nodes post and it ends up being a recurrence. OR - there are countless posts - the women say "thank goodness - it was benign!" but I can see in their signature that like 1yr later they were diagnosed with Stage IV. Or even a few years later.

Edit: I also have some shortness of breath sometimes when walking. I currently have a job where I walk a lot.

Comments

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    Have you been to your primary care doctor yet? They would normally be the first stop for these kind of symptoms. You know this but you need to get seen and evaluated asap. If the doctors you've seen aren't helping you'll need to find new ones. There's really no other option.

    This forum is pretty quiet lately so you may have more luck joining a breast cancer Facebook group and asking people for suggestions based on where you live. Since you had a mastectomy and are flat, you could start with the Fabulously Flat group: https://www.facebook.com/groups/328465773967406
  • blah333
    blah333 Member Posts: 68
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    Thanks for responding. Primary care at my hospital is also useless and takes months to get an appointment. They don't know about breasts/breast cancer, so I don't see what the point in waiting weeks to go there would do. In the past I contact the breast clinic, because they're the ones that actually operate on women and know the signs of recurrence etc.

    That facebook group doesn't really talk about recurrence scares. I guess reading through old posts here is as close as help/input I will get online. Plenty of clavicle node talk but it's all bad lol. Being flat is not really that relevant to my situation.

  • alicebastable
    alicebastable Member Posts: 1,939
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    If you think all the doctors you've ever been to are useless and clueless, I'm not sure what advice you want, since of course everyone here will tell you you need to see a doctor. It's very difficult for you, but also for anyone wanting to help you, under those circumstances. Good luck with whatever you decide to do.

  • dnazyme
    dnazyme Member Posts: 16
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    is the only breast clinic that takes Medicaid in your state? I’d keep the appointment you have and in the interim research other hospitals/clinics that take your insurance.

  • blah333
    blah333 Member Posts: 68
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    I wasn't looking for advice...... I was trying to alleviate worry about a recurrence.

    Obviously I know I needed to see a doctor but don't really have access to one that can help me. Finding a new doctor would take months. Most people "accept" Medicaid but then really don't. It's not really worth getting into. My only option to get actual healthcare sometimes is to just go to the ER, which I did (though outside of my usual health campus). They did a lot of imaging, and told me I have a nodule on my thyroid but did not see any instance of cancer. Though I do have a cyst of some kind on my liver and a 6cm ovarian cyst. My body has never been the same since this dumb DCIS.

    I was luckily able to get a follow up appointment with primary care in about 10 days, at least I will have something specific to discuss. It took me 2 years of malaise before a doctor suggested we test Vitamin D. It never occurred to me I had thyroid issues though I noticed my skin got super dry about 2yrs ago. My throat burns from this. It stinks I do not have an oncologist or anyone helping oversee my general health. Every time I go to primary care I speak to someone different. I was so naive to think I would just have breast surgery then be on my way. Things are really imbalanced and it's hard to figure out how to fix these issues on my own. Going to start taking DIM and get my diet back on track though.

    Hopefully this post helps someone in the future. I have not encountered anyone who had a "node" on their clavicle and it just ended up being a thyroid nodule. I guess mine wasn't even a node, just swelling around some arteries in that area? Once I read about the supraclavicular artery I realized I should really get myself in to the ER.

  • blah333
    blah333 Member Posts: 68
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    I went to that primary care appointment in October 2022, the doctor was dismissive - "your bloodwork looks fine and you look great for 40" (yeah compared to all the short fat people at the county hospital). I only have access to inexperienced 30 yr olds, it is terrible.

    Now it's May and my problems are getting worse, I still have shoulder pain, mysterious aches, trouble swallowing, burning throat - this is all on my prophylactic side. But thats' my bad side because I'm on medicaid and again - forced to use inexperienced doctors and that's the side the breast fellow did. She left tissue behind and I've never had access to anyone who can fix the problem. I have discomfort from this daily. And now I feel convinced I have an occurence on that side. I occasionally have a lump above my clavicle but it comes and goes. My visit to the ER said it was not lymphatic so I didn't worry about it, but everything is getting worse. I will not be able to handle mentally being Stage IV at 40, probably due to another person's incompetence. I already struggle with feeling like DCIS and mastectomy ruined my life. I just highly doubt my issue is muscular at this point… I have a primary care appointment this week but am already dreading to hope someone will listen to me. The doctors I deal with don't know anything or care.. I feel like I'm in medical h e l l endless invalidation

  • jo-jo2018
    jo-jo2018 Member Posts: 139
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    Hi blah333

    I'm sorry you are going through this. I know how frustrating it is waiting for things to start happening

    Your symptoms sound very similar to mine, unfortunately mine turned out to be a recurrence and I truly hope yours is not.

    Can you perhaps get onto a cancelation list for you breast clinic?

    Please keep us updated. You are in my thoughts.