Rib pain, reconstruction nurse has me spooked

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Lefty_Lucy
Lefty_Lucy Member Posts: 50
edited May 2021 in Not Diagnosed With a Recurrence or Metastases but Concerned

I was diagnosed with DCIS in December 2019. Luckily we caught it then, as it was very large and aggressive, but (obviously) early stage. I did not test positive for genetic markers, but do have a strong family history of early breast cancer and other markers (like the grade, my age, the size) that made doctors treat me as a unique/possibly higher risk case.

I had both mastectomies in 2020 as well as phases 1 & 2 of DIEP flap. It's been more than 6 months since phase 2 but I've had this spot on my rib, opposite side from my cancer, several inches below armpit, that started having a distinct ache maybe a couple months ago/a few weeks? It reminded me of the lipo pain, but a little higher than I had that. It came and went, felt like a deep, aching soreness, like touching a bad bruise or swollen lymph node.

I really only became aware of it in the past week, when it's amped up to being more constant. It's worse at night and worse with activity, but I can't find any yoga stretch that offers relief (I was hoping it was muscular).

Since it reminded me of the lipo pain, I reached out to my reconstruction nurse first, as I didn't know where to start/didn't have to see a MO very much due to not needing further treatment as of last year. After asking lots of details about the pain, she told me I needed to get in with my MO "urgently," which of course my fear brain is latching onto. I really anticipated (or hoped, I guess) that this would be brushed off or explained away by my phase two surgery last fall.

This is my second recurrence scare. The first came over December, when I developed a knot in my skin on my cancerous breast, near the closest margins I had (<1mm). I was worried with that one, but not this worried. I saw my breast surgeon and she did an ultrasound in-office and said she felt sure it was edema from the trauma of surgery, I was mostly relieved, but have had a slight lingering fear since my original cancer could not be seen on initial ultrasounds, and was only caught because a cautious radiologist ordered an x-ray when my ultrasound was clear. The knot is still there.

I mostly wanted to vent to people who get the fear, I guess. I sobbed in bed last night in a way I hadn't in quite a while. I'm not OK. Thankfully, I'll see the MO Tuesday and hopefully be put at ease once again.

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited April 2021

    to you. Know you are worried. Being checked is the best way to get confirmation you are ok. If your MO s like mine they do labs for cancer markers too regularly which should also help as well. Best wishes and keep us posted.

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  • 1openheart
    1openheart Member Posts: 765
    edited April 2021

    Breathe....it sounds scary, and it may turn out to be something, but it may also turn out to be nothing. If it is something, now you know about it and you can move toward taking care of it, just as you have done before. Your diagnosis sounds much like mine except my DCIS, at diagnosis, wasn't as large of an area as yours. It turns out that after all of the mastectomy breast tissue was biopsied, there were more area's of DCIS that the mammogram missed. So mine was multifocal and multi centric, grade 3, ER and PR positive. All of my doctor's have told me time and time again that a mastectomy is the cure for DCIS and that any reoccurrence is extremely unlikely. So, I hope and pray that is the way it will be for you. Someone very wise once told me that when you worry and imagine the worse outcomes, then you are living through it even it doesn't happen. I hope that you can stay busy and that the days pass quickly until you can see your doc and get some answers. Take care.
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  • saltmarsh
    saltmarsh Member Posts: 227
    edited April 2021

    Hang in there! Thinking of you and I hope you get relieving answers on Tuesday.

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  • Wonderland
    Wonderland Member Posts: 3,288
    edited April 2021

    Lefty: I had a diep in 2009. During my surgery a small portion of one of my ribs was removed. I realize that was 12 years ago and the procedure has probably changed. But I mention this in case surgeons still need to remove a portion of rib, depending on circumstances. It might be something to look into. Glad you have an appointment with your MO. Hope tonight is better for you. Please let us know how you are doing.

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  • Lefty_Lucy
    Lefty_Lucy Member Posts: 50
    edited April 2021

    Thanks, y'all. I'm hanging in. Last night was much better, no outright panic and no tears. 1openheart, I totally get what you're saying about living through the worst outcomes even though they're not happening. I feel like I'm usually pretty good about keeping my brain in check, but sometimes my body goes there whether I want to or not... if that makes any sense. And my cancer does sound a lot like yours, multifocal and multi centric, but my two biggest areas were each 5cm+. I looked into odds a lot when deciding on treatment, and best I could understand, with the particular markers I have (there might be more I'm not remembering now), I'm just on the high end of the relatively low reoccurrence of DCIS, though the numbers for cancer like the one I had are so low it's hard to say. I did get several opinions because both my initial surgeon and initial oncologist expressed a lot of concern about reoccurrence and wanted me to be more aggressive than the double mastectomy alone. But second opinions were that, no, even if I am at higher rate of reoccurrence (and we can't know, because the research is suggestive but not confirmed), the more radical surgical option and further treatment wouldn't affect survivability.

    Wonderland: they did tell me that they opened my ribs a bit during surgery, but near my sternum, and then they were replaced. I remember the pain from that well! This is on my side, under my arm, but my first hope was still leftover reconstruction pain (it was a whopper of a surgery/recovery for me). That's why I tried with my reconstruction nurse first, hoping she'd tell me it could still be that.

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited April 2021

    The chances of your pain being cancer are extremely low. Not zero, so you should consult with your doctor, but very low. I have pain in my rib that started about a year or two after my diagnosis. I had a CT scan and x-rays and a bunch of other tests (like a HIDA scan to check my gall bladder), and nothing. I'm convinced it has something to do with my ligaments or maybe my muscles and my ligaments together.

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  • 1openheart
    1openheart Member Posts: 765
    edited April 2021

    I am glad to hear that you had a better night. I remember thinking that all of the waiting associated with my diagnosis was so hard. I felt so much better and more in control when I knew what I was facing and had a plan in place to address it. I, too, had several opinions and I had BRCA testing before we decided on which surgical route to take. I have a lot of breast cancer in my family, but no primary relatives. But, both grandmothers had breast cancer and the one that had a premenopausal diagnosis eventually died from metastatic breast disease. When the BRCA tests came back negative for mutations, I decided to only remove the breast with cancer. Several docs encouraged me to go the lumpectomy/radiation route, but because of some other pre existing conditions I was hesitant to have radiation. In retrospect, I am glad that I had the mastectomy because of the other areas of DCIS that showed up in pathology. So, I had the Unilateral mastectomy and took Tamoxifen for 5 years.

    Luckily, I have not had any scares since my surgery, but I am now having problems with my foob that required an MRI last week. And the waiting was hard with that, too. I have been having increased aches and pains around the implant off and on for over a year and over the past 3 or 4 months the pain has become much worse. From what I have read, it feels like what one feels with capsular contracture, but my foob is still very soft. The MRI did not show a rupture, but did show an area that has an inflammatory reaction which corresponds to the area with the most pain. Another artifact was noted in the axilla area which they think may be a clip or calcifications from the surgery. So, I am now trying to get in to see a new plastic, my old one is no longer on my insurance and is no longer doing reconstructive work. Luckily, he agreed to see me for a consult, but if he thinks I need to consider a revision, I will have to see someone else. So far, everyone that I have called is booking out into July and August! More waiting....

    I'll be thinking of you and hoping for good news next week. (((HUGS)))

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  • Lefty_Lucy
    Lefty_Lucy Member Posts: 50
    edited May 2021

    My doc was totally unconcerned, which is mostly great, but I have some hesitation as she didn't ask me anything about the quality of my pain. No labs ordered, offered an ultrasound but I don't think that would show anything in the bone anyway? I am trying to decide now if I try more to push for something more or just assume it's all OK.

    SummerAngel, thanks for sharing your story. It's definitely reassuring to hear other's stories that are "it was just pain!" I feel like I keep seeing the scarier stories a lot more. Thank you.

    1openheart, oof, the waiting is the worst, right? I have been thinking about that a lot the last week or two, and I think there's this expectation people have (I don't know, maybe I'm just biased because of the stoic family I grew up in?) that if you have something iffy and go through getting it checked out and it's not THE WORST THING, then everything is fine and you are retroactively fine. But that's not my lived experience. I hope your waiting hasn't been too bad... maybe someone will have a cancellation? Hope you have answers sooner than later. <3

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  • smc123
    smc123 Member Posts: 71
    edited May 2021

    lefty-Lucy, I wouldn’t worry about labs but if your doctor offered an ultrasound I would do it. Especially,if it would help put your mind at ease. I’m five years out but still worry about every ache and pain. Good luck:)

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  • 1openheart
    1openheart Member Posts: 765
    edited May 2021

    LeftyLucy...I agree with you. Anxiety is anxiety, whether the outcome is not what you are worried about, or, if the worst happens and your fears are confirmed. That is why I try to so hard not to live that fear by worrying about the bad outcome. Admittedly, that is a work in progress and I can't always turn off the monkey in my brain.

    There was a cancellation and I got in today! I did get some good news. My plastic surgeon does not think that I have capsular contracture. So that means that I don't need surgery to replace the implant. Yay! He thinks that there is scar tissue and adhesions between the capsule and my pec muscle. And he believes that I have strained the pec, as well. He wants me to have physical therapy and ultrasound for about 6 weeks. And he prescribed a muscle relaxer to take at night. I am hopeful that these measures will help reduce the pain. If they don't, I'll guess I'll cross that bridge when I get to it. Thank you for your kind words and I hope that you find some peace and answers soon.

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