No information provided about late effects of radiation before treatment
I'm not sure where this goes with respect to topics, as I am no longer in treatment, so I am taking a stab at it. There was no mention of the possibility of radiation induced fibrosis when I met with the nurse or the radiation oncologist. The written resource they gave me was a booklet from the National Cancer Institute with one page about breast cancer. I don't recall any information about fibrosis on that page. There may have been information in another part of the booklet. I can't locate it to check. I am stunned. Had I been told about this I certainly would have sought advice about the advisability of radiation treatment for me. I do not have the mental, physical, or financial resources to manage this very painful condition.
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Hi @mgradie, I'm sorry that you are one of the unlucky ones who ended out with permanent damage from radiation. I was given a hospital handout which mentioned "cough" but not the pulmonary fibrosis that I ended out with. I met with my RO to let him know that words like that as well as "skin changes," "arm changes " separate from lymphedema which was mentioned, "spider veins," and "rib discomfort" did not alert anyone to the serious side effects which were a possibility. The latest version now says "inflammation of the lung," "skin changes including hardening of the breast", "changes in arm strength which may be permanent," and "late occurring cancers." The medical terms still aren't given but there is now enough information provided to let patients know the procedure can have serious SEs even if they are rare.
The only contraindication to breast radiation that has been proven is schleroderma. From what I have read having any autoimmune disease raises the likelihood of serious side effects. The ILD pulmonologist I was referred to for treatment told me that a lung cancer radiologist would have seen the red flags in my medical history (Barrett's esophagus, esophagitis and an upper GI bleed) and warned against radiation. I also ended up with some radial plexopathy, damage to my esophagus, and regrowth of an excised thyroid goiter which deviated my trachea. While my RO doesn't treat any of this he will still see me and refer me to other providers who do (pulmonologist, gastroenterologist, thyroid surgeon, neurologist, PT.) He even sent me to the ED for brain/cervical spine MRIs when he saw the numbness in my right hand at an appointment to review a brachial plexus MRI.
In your situation I would request an appointment with the RO or another doctor/advanced practitioner where you had radiation. Hopefully they could refer you for PT, LE treatment or anything else that your health insurance would cover. They have tried using vitamin E, pentoxifylline, and hyberbaric oxygen for breast fibrosis with little success. PT, massage and meds for nerve damage (caused by compression) seem to be what provide some relief. If you put the words "radiation side effects " into the search bar under "All topics" you will come up with many threads related to this problem. All the best getting help for your fibrosis. You are not alone.
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Thank you for your response. I feel bad when I hear about people who have been much more seriously affected. My complications seem relatively minor. My problem is that I have no margin to cope with additional problems because of other concerns I have to deal with. As hard as I tried to make the oncologists understand that and take it into consideration in my treatment, they were all confident that I would "tolerate treatment well." I will take into consideration your suggestion that I contact the radiation oncologist. My problem is that I no longer have confidence in them.
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mgradie, so sorry you’re dealing with that. Do you live in an area where you could “shop” for another RO? I’d also strongly suggest meeting with a physical therapist trained in breast cancer issues. I had radiation in 2006 after my first dx and no one ever told me that meant my breast would slowly shrink for the next 20 years. Honestly, when I was dx’d with a recurrence this year, I was not unhappy to choose a bilateral mx. Seeing the difference in my right and left breasts the last 20 yrs was more upsetting, to me, than losing both breasts. Anyway…I’d be happy to try and help you find a good physical/massage therapist in your area if you’d like.
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mcgradie, so sorry - I know how difficult this is. I think radiologists reason the benefit outweighs the risk, but that may not be of comfort when the pain and stiffness is overwhelming.
I know you say you are short on resources in dealing with this. But, as others here have said, you might want to try PT. I learned stretches I can do at home any time (often while watching tv) and they have helped tremendously. Insurance will cover it, and if you don't want to go back to your RO your primary care physician may be able to write the prescription.
Regarding pentoxifylline and vitamin E, studies have been mixed, but I had significant improvement. It is no guarantee, but might be worth a shot. Some doctors also recommend botox shots, which can help with muscle spasms. Finally, regarding hyperbaric oxygen therapy, the 2024 HONEY trial showed significant relief for many women. The trial was very limited, though, and many study participants did not complete therapy. This is likely because of the time commitment, 2-3 hours a day for eight weeks. You may not have the bandwidth for that, but many local hospitals have hyperbaric chambers and Medicare will pay.
Finally, major cancer centers usually have physiatrists on staff, doctors who specialize in helping patients recover physically from treatment. They know all the studies, and would be best able to guide you. Or the American Academy of Physical Medicine and Rehabilitation (AAPM&R) has a search engine to help find physiatrists in your area, by zip code and specialty (pull down menu "cancer".)
Hoping you can find some relief…
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