Osteoradionecrosis and Pain from Breast Radiation

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GeorgieGirlKC
GeorgieGirlKC Member Posts: 132
edited December 2017 in Radiation Therapy - Before, During, and After

I just wanted to post this if it would be helpful to anyone else who might encounter this particular issue. I had breast radiation in early 2014 after chemo and a single mastectomy. In April of 2016 I started having pain in the area of my tumor. I reported this to my oncology N.P. and had a br mri which showed nothing. I was referred to my breast surgeon who referred me to the pain clinic and PT thinking it was probably nerve pain. I tried gabapenten, lidocaine patches, acupuncture...Fast forward through physical therapy, nerve blocks, nerve ablation, chiropractic therapy and 2 more breast MRI to Oct 2017. I had my regular annual follow up with my breast surgeon who ordered br mri and an unhealed 5th rib fracture showed up on the mri on my affected side, the same place I'd been having that darn pain for all those months. He ordered a PET/CT and then a bone scan suspicious of solitary bone mets. I followed up with my oncologist this week who said it was very unlikely bone mets but that it could not be ruled out without a biopsy. She wanted my radiology oncologist to review my scans. I saw him yesterday and I found out that the pain I've been having all this time is most likely osteoradionecrosis, a rare side effect of radiation therapy. After 18 months of searching for an answer to this issue, feeling like I was crazy and fearful that this was my new normal, I found out it is probably this rare s/e. So the treatment is a year on a drug to help increase blood supply to the rib area, 1000 units of vit e...if in Dec of this year the pain is not gone, I will have a bone biopsy to rule out mets. If it is not mets I will have hyperbaric therapy to help the rib healing along. I hope this is helpful to someone out there. I am so glad to finally have an plausible answer!

Best,

Georgie

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  • Carrye
    Carrye Member Posts: 43
    edited October 2017

    This was very helpful. I finished my five years of treatment in January 2017, only to find myself with new worsening and spreading breast/chest pain. Saw all 5 of my cancer team doc and have three different working diagnoses; neuropathy from surgery, radiation damage and costachondritis. All of my test are normal, MRI, mammo, X-ray, ultrasound. I feel good other than this pain, sweats, fatigue and mushy bowels. I have best medical care at top research oriented health center. Have seen oncologist, surgeon, radiation oncologist, pain specialist and primary care doc and nurse. My move now is to take my gabepentin and steel,myself for the excruciating mammo I will have next Spring. But really-- I feel fortunate.

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  • GeorgieGirlKC
    GeorgieGirlKC Member Posts: 132
    edited October 2017

    Carrye,

    Thank you for your share. I am sorry to hear you are having pain too. It seems like many sisters I have talked to have some kind of pain that is unexplained or difficult to pinpoint and treat. I am so glad you have a great team at a top research institution. That is such a blessing! I hope the gabepentin helps and your other symptoms subside. I hear you on the mammo's. Ouch! Take care friend and update your status on pain relief.

    Best,

    Georgie

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  • sdianel
    sdianel Member Posts: 49
    edited November 2017

    I had my radiation May 2017. I have been in pain for 6 months. Breast is red, swollen, hot and extremely sore. Had bad radiation dermatitis where all skin fell off and was open wound for 3 weeks. Last week I developed severe knife stabbing pain in my ribs and around my back to my spine. Radiation Oncologist said "referred" pain from breast?? I don't think so. If that's so, I would have had it for 6 months. No x-ray or scan ordered. She put me on pentoxifylline ER 400 mg 3x day and vitamin E 400 units 1x daily. Told me to take Tylenol 1000 mg in am and 1000 mg in PM 12 hours apart. Can't take NSAIDS because I have an ulcer. Tylenol does nothing. She filled the last pain prescription this week and referred me to: Physical Therapy for massage for lymphedema and fibrosis first appt 11/21 then 11/29 then 12/5 although the PT wanted 3x a week for 2 weeks and 2x a week for 2 more weeks they have no openings; Pain Management Clinic (first available appointment Dec 5th!!); and acupuncturist. Haven't booked the acupuncturist because was waiting for other appointments to be made. Rib pain seems to be getting less painful so maybe it will resolve on its own?? Can't sleep at night because of the breast soreness. I am at my wits end!! I am trying to stay positive and do everything they recommend but it's getting more difficult and I'm getting so frustrated. Had I know about all these severe side effects I would not have had the radiation. I would have insisted on a mastectomy!! Anyone had acupuncture for breast pain following radiation? Did it help??

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  • GeorgieGirlKC
    GeorgieGirlKC Member Posts: 132
    edited December 2017

    sdaniel, I sent you a pm. Curious how your treatment is going and how you are doing.

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