Really regretting radiation

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Heather2018
Heather2018 Member Posts: 32
edited July 2019 in Radiation Therapy - Before, During, and After

I'm 2 and a half months out from 20 radiation treatments and have been in agonizing pain for the last 7 weeks. My ribs underneath my radiated breast have been hurting. Beyond hurting. I've had 2 xrays which show nothing. I can't sneeze, laugh, breathe or cry (made that mistake today). RO says they have never seen this and I should talk to my PHP because they are "radiation focused". Maybe they felt bad because they called back to offer a ct scan.

Any advice? I used to be super active, now I cannot open a jar. I'm becoming depressed.

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  • TB90
    TB90 Member Posts: 992
    edited June 2019

    Heather: I am so sorry you are experiencing this. This is not typical. Rib pain post surgery and radiation is typical, but not to the extent you are describing. I am five years out and still have odd pains, but nothing I would describe as painful. This is still very early for your recovery but I would insist on meeting my RO for an assessment. They should not brush this off. I doubt this is anything to worry about, but the discomfort is unacceptable. Good luck.

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Heather - I'm so sorry you're going through this. It's awful and I truly understand what you may be feeling as I have something similar, Mine has been going on since the end of Feb. RADs ended in Oct. RADs was awful for me, I'm a zebra...everything that can go wrong, weird SE, etc...happens. So it happened again, surpised my RO with my SEs from RADs and surprised my PT with my LE, Fibrosis, Rib Dysfunction, and more.

    Anyway, they did a bunch of blood/urine labs to rule out kidney/liver issues. Clear. Pain continued. They did a CT Scan on my Abdomen/Pelvis -- nothing found. No breaks. No masses. Clear. I did have a healing rib on my L side that was discovered during my Bone Scan in Dec, but never had pain then and no pain after they told me about the rib either. It's still a mystery.

    Anyway, this has been going on since Feb. I'm still in tremendous pain all throughout my ribs on both sides in the back. It's like there's a metal tennis ball with spikes hanging out directly underneath my ribs putting pressure all along a horizontal section of my ribs, trying to bust out. Owwwww. It wanes in severity but never goes completely away.It started on the L side, but now covers both sides from mid shoulder blade to the bottom of my ribs.

    My PCP says it nothing kidney/liver/other wise. My Cancer Rehab PT says it's likey Costochondroitis , inflammation in the rib joints/tissues/etc due to RADs, directly or indirectly due to muscle shortening/inflammation/range of motion changes. My PCP gave me some rx pain meds to help with it but other than that nothing has been of help. Not even Acupuncture has helped. My PT does manual work during our weekly appts but really there's not much she can do that we're not already doing or have tried, to no avail.

    I wish I had better news, but pretty much it seems like I"m going to have to wait for my body to get over this on its own.

    I agree with TB90, talk to your care team asap, if you haven't already. Also, if you can afford the CT Scan I'd take them up on it. Maybe they may discover a hairline fracture in a rib or something? You never know. Wishing you a ton of luck. This pain is not fair for us to suffer with, on top of the battle we've already waged. hang in there. If your team finds someting or you find something that helps, keep us posted. I'd love to bring any new suggestion to my own team to get this pain to stop!


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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited June 2019

    have anti inflammatories been tried? Or natural anti inflammation nutritional compounds?

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  • macb04
    macb04 Member Posts: 1,433
    edited June 2019

    Oh Spoonie77, I am so sorry to hear about this. No one should suffer like that. On my Deep Regrets Radiation thread, someone wrote about thousands of women experiencing spontaneous rib fractures after rads.

    It makes me furious how the bc industry screws women over, and then acts clueless about fixing the painful aftermath.



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  • Heather2018
    Heather2018 Member Posts: 32
    edited June 2019

    macb04 - what a great point. I'm going to one of the best hospitals in my city (probably one of the best in the world) and they are almost refusing to deal with the unwanted results of radiation. My RO team looks at me like I have 3 heads. I don't understand the clueless act.

    Spoonie77 - I have a ct scan scheduled for Saturday. I'll let you know what they find. I've read where a visit to the chiropractor can help with rib pain - I might explore that as well. Please keep me posted on how you're doing - you're in my thoughts!!

    I'm truly grateful for everyone who takes the time to reply - THANK YOU!! Now, I'm going to drink my anti inflammatory tumeric tea...

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  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    Heather - I'm so glad to hear that you took them up on the CT. Good luck and I sure hope you will get some answers! Please keep us posted.

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  • macb04
    macb04 Member Posts: 1,433
    edited June 2019

    Heather2018, I had that happen to me too, the clueless act. One weekend my throat started closing up, felt like I was drowning in my own saliva. I spent a miserable weekend barely able to sleep. Almost went to ER, but thought, big bill, nothing they can probably do. When I saw the RO on Monday, they said they were surprised " this had happened so early". .......WTF.

    They never told me choking to death on my own saliva, as my throat closed up, was a potential side effect of radiation.

    The RO used to tilt her head to the side while I was talking. Reminded me of my old dog. Hardly what I expected from a doctor at world famous SCCA.

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  • Heather2018
    Heather2018 Member Posts: 32
    edited June 2019

    That sounds horrible, macb04! I hope you're better now. It baffles me that the RO departments are clueless when it comes to side effects!!

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  • macb04
    macb04 Member Posts: 1,433
    edited June 2019

    Thanks Heather. I don't get it either. I guess we don't know if they graduated at the top or bottom of their class.

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  • marijen
    marijen Member Posts: 3,731
    edited June 2019

    If an RO miscallibrated the radiation machine, how would we ever ever know? I think I was over radiated. My throat got very sore on the radiation side and I never get sore throats. Now I have a hot thyroid nodule on that side. After radiation I refused to have anything to do with my RO as it also caused lymphedema. Took two years of PT too get it under control.

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  • EngJojo
    EngJojo Member Posts: 24
    edited June 2019

    Heather2018...How did your scan turn out? I hope they were able to find the problem and offer a solution to help you get relief.

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  • Heather2018
    Heather2018 Member Posts: 32
    edited July 2019

    Scan showed nothing going on with my ribs. Scan did show pulmonary nodules in my lungs that need a second look, ugh. Rib pain did get better for a little while, but i'm back to ice packs and ibuprofen! Baby steps...

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  • GiddyupGirl
    GiddyupGirl Member Posts: 240
    edited July 2019

    Hi Spoonie just found this post and I really hope your costochondritis has healed up. I am new to breast cancer but have had costochondritis a few times since my son was born. It hurts and you feel like you can't breathe. The internal medicine guy gave me nsaids but I had problems with them so actually went to see my chiropractor and he helped. I also soaked a towel in water and epsom salts and laid it over my ribs for about twenty minutes and that really helped and I tried to alternate sides I was sleeping on to give the ribs a break. If it has cleared up (and I really hope so) I apologize for the long post. If it is not better I hope some of this might help. Be well.

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