Rib pain 2 years after diagnosis

Melissa919
Melissa919 Member Posts: 15
edited April 2020 in Pain

Not sure how much advice I can get on here, I haven't been on this site in a long time.

Originally diagnosed 2 years this Friday. I was 27 DX with stage 3 IDC hormone positive.

I had a double mastectomy(37ish nodes removed), chemo and then radiation.

I have had mild issues with lymphedema since the beginning and did PT(I need to go back) but for the past couple of months I have had constant rib pain on the cancer side. It was on and off and now it's constant. I had ultrasound which was normal and then xray which didn't show anything( I know a good thing)

Now I don't know what to do, my drs seem to think it's lymphedema related but I honestly don't think so(I know I'm not dr) but I have had lymphedema this whole time and this is different...it's constant dull achey pain, sometimes sharp. It feels like bone deep pain (not inflammation). I'm lost and I don't know what to do anymore. I feel crazy, I think my drs think I'm just extra worried. I'm not being taken seriously, I just don't know what to do.

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  • AnnC2019
    AnnC2019 Member Posts: 203
    edited February 2020

    Hi Melissa919,

    I had rib pain and had a pet/ct scan. The area where there was pain had some uptake in the scan so I have to repeat the scan. Have you had a pet/ct scan?

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  • Melissa919
    Melissa919 Member Posts: 15
    edited February 2020

    I had a petscan over a yr ago that did show some type of uptake but my drs(2 of them) weren't concerned. I guess it didn't light up all crazy. So last month I had an ultrasound and xray that didn't show anything.

    I just called and explained I still have pain and it's worse. Waiting for a call back...I just think they aren't taking me seriously. I was 27 when diagnosed now 29

    Maybe I am extra paranoid, I just want answers. This pain isn't normal

    I hope you get some answers as well, let me know when you hear something.

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  • Lexica
    Lexica Member Posts: 259
    edited February 2020

    I also have had pain - worse directly after radiation and surgery, but still persists at a lower level. So not quite the same as you, but I think radiation can cause this issue. I would push for a PET though, or at least a bone scan or MRI, especially if the pain is getting worse. I don't believe an US or xray is very good at detecting mets. I do understand the paranoia - I hope that goes away, but I fear that it comes with the territory for us.

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited February 2020

    I've also been having some rib pain - in my case it's some bone damage from radiation. Hopefully your Drs can order some imaging and determine the cause. Best wishes to you.

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  • JennieTibben
    JennieTibben Member Posts: 3
    edited April 2020

    Hi. I also had rib pain, after a CT scan for another issue, turns out I had several rib fractures (from radiation). It helped ease my mind to at least know what it was.

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  • 1verypainful
    1verypainful Member Posts: 3
    edited April 2020

    Hello,


    I am 8 years post mastectomy. I can relate to pain following surgery and treatment. I have still have myofascial pain syndrome and rib pain. The cause of my situation was unknown until this past year, it was due to a severe adverse drug reaction to the hormonal therapy which reacted to other medications I was placed on to treat for pain. Therefore my question is you is are you on a hormone therapy (Tamoxifen)? If you are one of the side effects is bone pain. I would recommend seeing if you could get a bone scan and make sure they do a scan of your shoulders and ribs. You have to ask otherwise they will only do the wrist and your hips


    I wish you good luck


    1verypainful
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2020

    Get Hyperbaric Oxygen therapy. Your pain is from the radiation. It damages ribs and cuts off oxygen supply to the muscles and nerves causing pain.

    Hi Everyone,

    This is another example of a huge problem in the cancer industry. In June 2011 a study was released that the majority of women who receive lumpectomy and radiation will be in moderate to severe pain for a year. Was this ever explained to you by your doctor? Did they explain how much radiation would help you? In some women it only lowers the chance of their cancer coming back by 7%. Is that worth a year of pain...and is that right for your doctor to decide that for you by telling you you must have a treatment. Also, did he tell you that there is treatment? The only treatment is HBOT with is FDA approved for radiation pain and damage. MOst radiation oncologists do not know this. SO they give you a treatment that causes you pain, don't tell you how much it is helping you and then they don't even know how to treat it.

    I need your stories!I am currently writing a book on stage 1 breast cancer as I had a horrific experience that didn't need to happen.These ranged from gender bias where my symptoms and pain were not believed, resulting in unnecessary suffering and damage, to doctors having very little knowledge in their fields, for example Hyperbaric oxygen specialists that not only unaware that it is the only approved treatment for radiation damage, but even after giving them studies to support this, they still didn't believe me and refused treatment.

    On top of this, there is the industry's constant over simplification of guidelines (mastectomy or radiation and lumpectomy for every stage 1 BC case) and the over treatment of patients.In 2018 a study came out that 70% of early BC patients did not need chemo.Then why were they giving chemo patients that didn't need it!Why were they testing a treatment before it was administered! Women are never told how much each of these treatments will help them so they cannot weigh the benefits and costs to treatment.They are just told they have to do it.For example, some women will only receive a 7% reducing in the chance of their cancer coming back from radiation and this is according to the NCCN the governing body or cancer research. Shouldn't these women get to decide if that benefit is worth permanent damage and the possibility of severe side effects?)Then to top it off, there is no accountability in the industry (please read "Unaccountable" by Dr. Makary) and completely driven by money (please read "The Price We Pay" also by Dr Makary. Dr. Makary is a surgeon and teacher at Johns Hopkins Bloomberg School of Health)

    So I want to hear from you.Were you ever told how much different treatments will help you?Were you ever in pain and a doctor said it was in your head or it wasn't that bad?(Both of these were said to me.)Were you told about all of the side effects of treatments, before you started the treatment, such as a long-term safe effect of chemo is cardiovascular damage?Or that you would have permanent damage to your skin, muscles, ribs (and heart of it was done on your left side) from radiation?Post-cancer did you have issues and no doctor had the knowledge to help you?

    To all of my BC sisters I want to thank you for your time and we will get through this!!

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