Post Radiation Side Effects
While my radiologist shared all of the pros and cons, he didn't share the "by the way" side effects. On a positive note, I discovered, thru trial and error, that calendula GEL is very helpful in healing the deep pitting and leathery issues post radiation. On the not so positive side, about a year after the radiation, I started experiencing a random clicking when swallowing sensation in my left ear. When I scheduled my annual ear, nose, throat visit, I learned the clicking is a dysfunctional side-effect from the radiation and also to prepare for hearing loss in one to three years in the affected ear. Also as a result of the radiation, the lumpectomy breast has become half the size of the nonsurgical breast. I am told all normal as a result of radiation. Please share your thoughts and experiences.
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Hi again @suzannmb63 (just answered you on another thread 😉) ,
Thank you for sharing more of your experience. It’s so true — sometimes the “big” side effects are discussed, but the quieter, later ones can catch us off guard. That can feel frustrating and lonely - and maddening!
We’re really glad you shared what’s helped your skin. Calendula is very much discussed, though we need to look into the gel! Those practical tips mean a lot. And hearing about the ear/hearing changes and breast size difference is important, too. Many members have found that radiation effects can show up or evolve over time, and it helps to talk about it openly.
We hope others will jump in and share what they’ve noticed. These honest conversations are such a gift to this community. 💛
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Hi @suzannmb63, There are various problems that affect only a small percentage of those who have radiation but some of them are serious and permanent. My lungs, thyroid, esophagus, brachial plexus and breast (enlarged by lymphedema) were all affected.
About five months after finishing rads I developed a cough. My PCP treated me for pneumonia/anemia but things continued to get worse. Eventually a chest CT which led me to contact my RO was ordered but I was past the pneumonitis stage where a course of steroids can cure it. Much of my right lung became fibrotic.
I had a discussion with my RO about being blindsided by permanent SEs as LE was the only one mentioned that affected me. As a result he and his colleagues rewrote the pamphlet given to patients before radiation to include some of the more serious side effects including other cancers. The vague "cough" mentioned was expanded upon to warn against permanent lung damage if it is not promptly treated.
I wonder if more could be done to identify people who should not have radiation. The only recognized contraindications are schleroderma and previous chest radiation. I told the RO about my relevant medical problems but he thought the scatter dosage would be too low to matter. When I asked the ILD pulmonologist I was referred to why I was among the unlucky .3% of those who have chest radiation he told me that a lung cancer RO would have seen the red flags in my medical history: an upper GI bleed and Barrett's esophagus. They would have known I most likely had subclinical ILD from inhaled stomach acid and radiation would pose a danger to my lungs.
Radiation scatter caused my previously excised thyroid goiter which had slowly grown over thirty years to regrow to that same large size in several months requiring a repeat surgery to open my compressed trachea. It sounds like you had ENT issues before rads that were made much worse as a result of treatment. Nearly five years later new issues are still showing up. Currently scarring from radiation scatter in my thoracic outlet is being investigated as the cause of recent severe neuropathy in my arm. The phrase “Radiation, the gift that keeps on giving” was coined for a reason
While the most common radiation SEs are skin issues and fatigue which are temporary, some of the damage a small percentage of people suffer is very disabling. Gated breathing has helped reduce cardiac damage but there may be more that can be done. It might be worth consulting a plastic surgeon to see If anything can be done to compensate for your severe breast shrinkage. I still see my RO who refers me to whatever specialist might be able to help. All the best.
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@maggie15 Thank you so very much for sharing. First, I am comforted that I am able to be with a very supportive group of women who have shared the "cancer-free" journey, and now we share another type of jouney. We each have significant physical and emotional scars, but in time we may be able to help each other heal in some ways, in support of each other.
More importantly, however, we have life-changing health issues that will be long-term that we were not only not told about before, but in many cases, no one knows what to do for us now. We are hands off in some ways. So we are all searching for medical practitioners who are trying their best to help us manage these side-effects which in some cases, sadly, are more intensive and invasive than the initial cancer journey. I am very grateful each and every morning knowing that I have another day to celebrate, and try to go to bed at night with a sense of mindful peace, praying for all those with whom share this jouney.
"The meaning of life is to find your gift. The purpose of life is to give it away." - Pablo Picasso So every day I try to realize what gift I have to give.
I promised myself this year to find a new female oncologist who understands senior women's needs as well as a new female ob/gyn who also understands senior women's needs. I know this is a will be a mindful search, but I anticipate that will help some of my concerns. Once I transition to a new insurance carrier, hopefully this month, I am going to try to request a (post-cancer) case manager who may be able to provide some specific guidance.
One thing that I have been working on for some time, and I will try to publish in later March, is an editorial to one of our local papers (not magazine journals) regarding the burden we carry for each other in silence. What I do realize is that our positive prayer for each other is forceful. And hopefully in prayer we can begin to feel a healing strength.
Just as a note, this Friday I have an afternoon doctor appointment, and next Friday we have a surprise visit from our son and our grandaughter from Texas. So I won't see everyone until our March 6 gathering. Stay strong in spirit. Talk soon. - Sue
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