Radiation Damage to sacrum/sacral insufficiency fractures

@pjebp I had a sacral insufficiency fracture following pelvic radiation for endometrial cancer. I didn't know I had the fracture as it showed up incidentally when I had a CT scan for one of my regular cancer follow-up appointments. I didn't have any symptoms. Since was in the osteopenia range I asked for a referral to endocrinology. It took 6 months to get the appointment. My DEXA scan showed I'd experienced more bone density loss since the radiation therapy which the radiation oncologist warned me could happen.

My endocrinologist said I was already doing everything possible on my own to maintain bone density but the sacral insufficiency fracture and my bone density loss from radiation meant that I should consider medication. So, that's what I did. Twelve months of Evenity injections, and a Reclast infusion with the weight training I did with my personal trainer resulted in a 10% gain in lumbar bone density and healed fracture. I also had a 4% gain in bone density in my hip.

At the time the sacral insufficiency fracture was found I was already working with a personal trainer. I'd been weightlifting and active for many years prior to the endometrial cancer and radiation therapy. My personal trainer made adjustments in my training. Had I not been already working with the personal trainer I would have asked for a referral to physical therapy. To me, a physical therapist is the best resource for this kind of thing.

I don't know what recommend for exercise because my situation was different than yours and I don't know what your pain levels are like. Have you worked with a physical therapist who can give you home exercises?

Hi, pjebp.
You might get a Pelvic MRI. Your primary shouldn't have any trouble ordering it. And take it to an endocrinologist. I think your best bet is with an osteoporosis medication Forteo or Tymlos because these two medications speed healing. I'd want the MRI to tell me if there were fractures and if there are fractures, are they stable.
If there is any chance of metastasis, it could be wise to repeat the PET/CT.
It sounds as though you may have had osteoporosis in the sacrum before radiation, though impact injuries can also cause sacral insufficiency.
I closing with this link because it outlines the diagnostic processes followed by others https://pmc.ncbi.nlm.nih.gov/articles/PMC8350190/
You probably want avoid any exercise where you are twisting or turning, sit-ups or crunches, toe touching, lifting any weight, or bicycling until you have the MRI results. I hope you aren't in pain.

@gently My endocrinologist said forteo is off the table for patients who have been through radiation. I was radiated near tailbone and in pelvic lymph nodes. She recommended prolia injections every 6 months. I am trying non pharmaceutical options first as I am still trying to overcome many longer term chemo and radiation side effects. I am 75 yo-not sure if that makes a difference in Endo recommendations.

Good morning @pjepb,
My goodness, you certainely are experiencing your share of challenges and indecisions: I too, was feeling a bit desparete and searching for a "safe place" to hide and lick my wounds, so to speak. My, our challanges began in 1999 with the diagnoses of colon cancer. It was all very frightening and sureal at the time. We, I say we because, my wife and I experienced the scary threat together. My surgeon pointed out that I didn't have a choice regarding any outcome and spouses or significant others do have a choice in the matter. So, I was informed by my medical team at the Mayo Clinic to be sensitive to my spouse, Cecilia, because she was determined to ride the challenge to the very end. I didn't really know at the time, how significant those words were to be in our lives.
Currently, 01, 2026, 26 years subsequent to my radical surgery, Cecilia and I are enjoying bike riding frequently, experiencing adventures together by cycling through the various parks in our state of Florida and realize, because of this site, The Connect Site, that we were never really alone in our trials. My cancer has never returned; I have a permanent colostomy since 1999, our sexual relations ceased in 1999, but as we were soon to learn, human beings are so much more dynamic and complex beyond ones' sexual abilitites: We learned that our togetherness, our patience, and any trials we were to face, would be replaced by a magical and new appreciation for each other, than either of us could have possibly imagined.
Sharing ourselves in open awareness of our situation proved to be life changing attitudes that fostered greater rewards than either of us had ever been aware of. Your sharing your "scarry times" with us on the Connect site, is yet another miracle of lifes' greatest rewards to patience and love beyond the physical part of we humans. Please be patient with yourself and your care team: keep asking questions and exploring what your tomorrows may bring you. Life is just what we make it: And alone or together with someone else, can be enhanced when we help others and be constantly aware of each days opportunities to enjoy ourselves and include all others that may cross our paths along the way.
Best to you and keep us posted regarding your progress to stay in the game.
Jofree

@katme, hi.
I had radiation near the tailbone also in the lymph nodes, and have been on Forteo for almost three years. While Forteo is no longer suspected of causing cancer, if your radiation was very recent, it is true that radiation continues to effect tissue after treatment and is more effective on growing tissue, you might be wise to wait a year before beginning Forteo after radiation.
I had areas of very low bone density in the hip after radiation. I only mention this because those areas represented edema and fat infiltrates not recognized as such on dexa, only recognized as very low bone density. Those areas often resolve on their own, as mine did,
Prolia or Zometa are often used to prevent metastasis that our nodes have given warning to the possibility of. You might ask for Zometa in lieu of Prolia, if the prospect of Prolia is daunting.
Bless your choice.