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Throat pain 6 weeks after breast radiation

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I am curious as to whether anyone has experienced throat pain weeks after radiation. I had radiation to both breasts, on the left my lymph nodes in the clavicle area were also radiated and I did experience short term throat discomfort during radiation but it resolved quickly. .I have been finished with radiation for six weeks. For the past two weeks I have been having pain in my throat right at the base of the throat. It is painful when I breathe deeply and the throat expands. Right now it is hurting on its own. I am not having any problems yet swallowing. I do have hashimotos and I am concerned that the radiation has affected my thyroid which I have been told is quite possible. But I have no symptoms with regard to the thyroid. I’m also wondering if it’s my esophagus that is once again inflamed. Or maybe it’s silent GERD. Of course now I’m worried that I have throat cancer from the radiation but I’m sure that’s just my anxiety peaking. I have an appointment with my primary physician in a couple of days and an appointment with my endocrinologist in 3 weeks (earliest appointment I could get). Does anyone else have a similar experience or thoughts they could share?

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Comments

  • maggie15
    maggie15 Member Posts: 950
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    @sonya16 , I'm sorry that you have more throat pain. It may be due to radiation or something else but it would not be throat cancer from radiation. I just had that conversation with my gastroenterologist a few weeks ago. While nodal radiation more than doubles the chances of esophageal cancer the odds are still very small and the cancer appears anywhere from 3 to 20 years later.

    It's a good idea to get your thyroid checked. I had a large goiter removed over four years ago; a small 1cm strip was left to preserve two parathyroid glands. Since completing radiation the thyroid remnant has been rapidly growing and is now a visible goiter displacing my trachea. I've had two benign biopsies and my endocrinologist is keeping an eye on it. I will probably need a second surgery but I'm supposed to avoid intubation (thanks to another rads side effect) so I'm putting that off for as long as possible. As they say, radiation is the gift that keeps on giving.

    How is your reconstruction healing? I continue to be amazed at the weird side effects that can occur.

  • sonya16
    sonya16 Member Posts: 57
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    Hi Maggie15, it’s good to hear from you. I’m so sorry you are having the problems with your thyroid. Boy it’s so true that radiation just keeps doling out all these additional problems. Sometimes I do wonder if the benefits outweigh the risks. The funny thing is I had a feeling radiation would have an effect on the thyroid and when I asked the oncologist that question at a follow up appointment last week,I was told “oh yeah it can knock it out”. Gee, was anyone going to suggest that might happen given that hashimotos has been on my medical record for years?

    The reconstruction has been healing well as much as I can tell. It still hurts to try to sleep on either side since the radiation and I continue to do my arm stretches. If I miss a day the entire side gets very stiff. My lymphedema pt has been out on sick leave so I won’t see her until next month sometime. My back is still giving me problems but for now I’m just dealing with it.

    Have you been doing ok otherwise? Is your cough still doing better?

  • maggie15
    maggie15 Member Posts: 950
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    Hi Sonya16, My inhaler is working great for my cough and my lungs. Unfortunately my prescription insurance just changed from covering everything to a formulary which does not include it. When my pulmonologist applied for an exception saying that I could end up in the ICU using their alternative he was told that if I did they would approve it. It's very expensive but sporadically there are coupons that can help. It's not worth taking a chance on never coming home from the hospital again so I'll find a way. I looked into paying for a Medicare part d plan that covers it (cheaper than the inhaler cost but with a 2/3 copay for oncology meds) in addition to my retiree insurance but it turns out that is illegal. My PCP who is Canadian but not licensed there suggested going to a dual licensed doctor on the border, getting a prescription and crossing the border to fill it. There's always something.

    I'm enjoying summer since I can meet people in real life and do things outside. The rain and air quality sometimes get in the way (as well as GI issues) but I'm doing as much as I can before I have to go back into hibernation again.

    I hope your PCP has a solution or a referral for your throat and your LE therapist returns soon. Let us know how it goes.

  • sonya16
    sonya16 Member Posts: 57
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    Hi Maggie15,


    Could you tell me what your first symptoms were with the radiation Pneumonitis and fibrosis?

  • maggie15
    maggie15 Member Posts: 950
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    Hi Sonya16, I developed a severe dry cough, low grade fever, shortness of breath, fatigue and sky high wbc count about 6 months after radiation ended. An NP could hear crackles in my right lung and thought I had walking pneumonia. I took two courses of antibiotics with no improvement and chest x-rays showed progressively more of my lung with infiltrates. Since the NP thought my cough sounded like I had lung cancer she ordered a CT which showed consolidation, ground glass opacities, pleural thickening, reticulation (net like scarring) and traction bronchiectasis. The radiologist, NP and a local pulmonologist didn't know what it was but the pulmonologist's comment that strangely it did not follow anatomical boundaries inspired me to contact my RO who diagnosed RIPF from the CT and referred me to an ILD pulmonologist.

    Most people who get pneumonitis, the usual precursor to RIPF, get a cough about 3 months after finishing rads. If this is treated right away with a short course of steroids it clears up without leaving much scarring. Every once in a blue moon this warning stage doesn't occur. I was on high dose steroids and oxygen for a while. Fortunately it was stopped before migrating to my left lung but only a bit of my right lung works. My orders are no respiratory infections, no intubation and no meds that have ILD as a side effect (since any of these could start it going again) so I live like it's covid lockdown. However, I'm very grateful that I'm here.

    I know you worry about symptoms and while pneumonitis from bc radiation is uncommon axillary rads are more likely to cause it. My advice would be to not ignore a dry cough. While a cough could be caused by allergies, viruses, asthma and all kinds of other things, contact your RO to check it out. Is your throat pain improving?

  • sonya16
    sonya16 Member Posts: 57
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    Hi Maggie15,

    no, my throat is still giving me problems. I feel like I have a lump in my throat and whenever I eat, it gets worse. I did go to an ENT this week and he just said it could be three different things that being, acid reflux, allergies, or sensitivity from the radiation. He did expressed concern that it could be fibrosis in my throat, but wanted to see if it would go away with over-the-counter acid, reflux, meds, and nasal spray. He did scope my throat looked at my voicebox and my glottis. There was some mucus there, but not a lot. The glottis looked a little swollen and a little red, but that was it. It definitely gets worse when I eat. I’m on my second day of Prilosec, so I guess I’ll give it a couple more days to see if it helps. What’s weird is I’ve never had a problem with acid reflux before. And yes, I’m a little worried about this.

  • sonya16
    sonya16 Member Posts: 57
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    by the way, thank you for sharing your symptoms with me because I will know what to look out for.

  • maggie15
    maggie15 Member Posts: 950
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    Hi Sonya16, I hope the swollen glottis is just an acute symptom and gets better. Fibrosis in the throat would not be good. Another poster, @only4mel, ended out with a paralyzed right vocal chord and right side of the diaphragm from fibrosis 19 years after she finished radiation. This radiation recall reaction is rare but something that can happen. I have silent reflux (discovered after a GI bleed) so it's possible even without symptoms. It's good that you have an ENT keeping an eye on your throat.

    In spite of all my precautions I ended out with covid (probably because my husband who tested positive but is asymptomatic didn't wear a mask at his last PT appointment.) They kept me overnight at the hospital since I had a fever of 105 and my O2 was at 90. They put me in a recliner in an infusion room but it was comfortable enough and I was isolated. After IV fluids, oxygen, steroids and molnupiravir I'm better enough to finish out the meds at home.

    In my RIPF reading I have come across research that says pentoxifylline and vitamin E can improve radiation induced fibrosis in tissue (but not the lungs.) That might be something to ask your ENT or RO about if your throat doesn't get better soon. Let me know how things go.

    Here's a reference MDs can access:

    https://www.uptodate.com/contents/clinical-manifestations-prevention-and-treatment-of-radiation-induced-fibrosis/print

  • sonya16
    sonya16 Member Posts: 57
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    Hi Maggie15,

    so sorry I haven’t posted in over a month.

    thank God you got through the Covid! Sometimes no matter how careful you are the stuff seems to happen. I’m so glad you’re doing better.

    In regard to the throat it is still the same. Since I last messaged with you, I have been to the gastroenterologist, who put me on prescription strength, Prilosec. This did not resolve my throat problem. I have an endoscopy and colonoscopy scheduled for early next month. It still hurts when I breathe deep at the base of my throat. And lately when I breathe deep, I have a dry cough. Last night I woke up with a real bout of coughing. When I lay down, even slightly elevated, it seems to get worse. I don’t feel particularly short of breath, but I do feel like my chest is tight when I breathe deep. I’m getting very worried and I don’t know what to do. I’ve also been to my endocrinologist, thinking it may be my thyroid, and I have a thyroid biopsy procedure scheduled for next week.

    But now, with the cough, I am very, very concerned. I have no fever. Should I call my radiation oncologist? My primary would just send me somewhere else, but I don’t know what that would be.

  • maggie15
    maggie15 Member Posts: 950
    edited September 2023
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    Hi Sonya16, I'm sorry that your throat has not improved. It's good that an endoscopy and thyroid ultrasound are going to be done to see if anything in those areas is part of the problem. I have esophagus and thyroid issues that predate radiation but since treatment my almost totally excised thyroid is growing back with a vengeance. 1 cm in the left lobe has grown to 7 cm while the right lobe was totally removed and is now 2 cm. A couple of nodules were biopsied (benign) but it keeps on enlarging. My RO discovered this at my 3 month post rads appointment. It will probably need to be removed at some point since it is deviating my trachea but I'm putting it off as long as possible since I'm supposed to avoid intubation to prevent the RIPF from activating.

    If you have a dry cough and tight chest I would contact your RO to check it out. Even if it is pneumonitis it can be cleared with steroids if caught early enough. I somehow skipped the pneumonitis warning stage and ended out with the progressive fibrosis. Many doctors (even pulmonologists) are not familiar with it.

    This bout of covid was quite different from the one I had in Feb 2020 when it was supposedly just in China. I had bronchitis but thankfully not pneumonia like last time. The weird part was neuropathy, fevers and headaches for a month. The feeling in my fingers is starting to come back but the left side of my face has random shooting pains (trigeminal neuralgia.) I'm taking a higher dose of gabapentin and hoping that it eventually clears up.

    My son and daughter came to visit from NYC for an afternoon last weekend since we have to stay outdoors (unless everyone is masked for a short time) and the cold weather is coming. I never minded winter before but because I can't attend anything inside it's pretty isolating. Last year my husband and I bundled up and went to Thanksgiving dinner in my brother's ex's sister's open garage since she has AAT, a liver protein deficiency that affects her lungs. Other than her grown children we were the only guests. She bought a second home in Charleston SC where she will be living from mid fall to mid spring. I will just look forward to spring and hope for no rain on days with outdoor plans.

    I hope you can find some answers to your throat issues. Let us know what your RO says.

  • ratherbesailing
    ratherbesailing Member Posts: 118
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    Sonya 16, barging in on this conversation you have going with Maggie.

    Please get your lung checked out. And, I hate to say it, but I would not rely on the RO. I had pain on inspiration about a month after radiation. CT showed penumonitis, which is an absolutely normal finding. Then about eight months later I started getting shortness of breath on exertion. RO ignored it, but my pneumonitis was turning to permanent scarring. Another RO I consulted said, because I was symptomatic early on, I should have been put on steroids immediately. If your RO doesn't have answers perhaps a pulmonologist can order a CT and find out what's going on.

    Regarding the throat, I have had a similar experience. My thyroid went crazy after treatments, mimicking Hashimoto's, then eventually settled down. But I was left with the sensation of obstruction in my trachea and had difficulty breathing when turning my head to one side. The one thing that has helped is a steroid inhaler I was prescribed to treat my radiation-induced lung issues. I think it just helps with inflammation.

    Hope things improve!

  • maggie15
    maggie15 Member Posts: 950
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    Hi Sonya16 and ratherbesailing,

    Ratherbesailing is right that pneumonitis needs to be treated with steroids immediately so that fibrosis doesn't develop. I somehow skipped the pneumonitis stage and developed fibrosis six months out. A local pulmonologist and radiologist who looked at my CT didn't know what was wrong with my lungs. My RO was the one who diagnosed it and got me in with an interstitial lung disease pulmonologist right away. Those ILD pulmonologists are hard to get an appointment with since there are so few of them. My pulmonologist told me that someone can always politely steer a doctor to the website radiopaedia.org where there are sample CTs of all the different patterns of lung scarring and diagnoses (along with many other things.) Also, lung cancer ROs are more familiar with this SE since they target the lungs.

    I wouldn't survive without my steroid inhaler. According to my pulmonologist the coughing is caused by the fibrosis exposing nerves which are normally covered to the air. The steroids calm the inflamed nerves.

    Ratherbesailing, it was interesting to see that your thyroid went crazy, too. I'm a bit worried about what my next surveillance EGD for Barrett's esophagus will show since that was in the radiation field as well. And I thought radiation was easy since I came out of treatment with just a minor sunburn.

  • gailmary
    gailmary Member Posts: 435
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    Hi there. I've been following this thread as I have some concerns with lungs and throat. Finally got results of US of thyroid. Showed only 1 nodule. T-rads3. But something in a test result at onetime suggested Hashimotos. At any rate a dull ache in throat for months now. Scan in July was good too.

    My scans over several years also mentioned some lung scarring but not where. I hate that the reports all use different terms to describe same thing. I know the big thing is to watch for progression. Mom died of pulmonary fibrosis. MO knows my concern. Wonder if I should see pulmonologist. He says no. I'll discuss with my new PCP in a few weeks. Also watching lung nodules. I feel pretty good otherwise. A bit better changing blood pressure pills.

  • maggie15
    maggie15 Member Posts: 950
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    Hi gailmary, I sent you a PM on your comment here (mixed up the thread names.)

  • sonya16
    sonya16 Member Posts: 57
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    Hi everyone,

    I really appreciate all the comments regarding the lung and throat issues. They are really very helpful. My R0 ordered a chest x-ray upon my insistence and although there’s some weird things on the report that I don’t understand and were and still are concerning to me, the RO also read the film himself and felt everything was fine, but he was just making sure that the lungs are well-aerated and free of infiltrates which they are as per the report - I do have an albuterol inhaler that I use once in a blue moon for allergies. I will try that more often

    I’ve had Hashimoto’s thyroiditis for 20 years now and I’ve always done fine on 75 Synthroid per day I do have a node on my thyroid that’s been there just as long (scanned every couple of years) that looked a little suspicious this time on my pet scan so I finally had the thyroid biopsy done Wednesday. So we’ll see. in the meantime I’ve been on 40 mg Prilosec for a little over a month now to see if that would resolve my throat issue. It has not done so to date

    The Last few days I have had constant migratory joint and muscle pain. Sort of like if you have the flu and you are achy all over. But I have no fever. I do feel generally unwell. I’m feeling very confused as to whether this is my thyroid acting up or could it be the Prilosec is keeping my Synthroid from absorbing properly? Or am I have any other problems who knows? In any event because of the way I’m feeling now, The gastroenterologist wants me to postpone my endoscopy/colonoscopy which was scheduled for Tuesday until the thyroid results are back. I will hopefully speak to my endocrinologist tomorrow but he’s not really all that responsive. Has anyone had any experience with any of this?

  • maggie15
    maggie15 Member Posts: 950
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    Hi Sonya16, I'm sorry that you are still feeling unwell. The Prilosec (and all PPIs) can lower the absorption of Synthroid and other meds which could lead to SEs. I have to take omeprazole for Barrett's esophagus and my transferrin saturation was at 3% (normal 20% - 50%) even though I was taking oral iron every day for anemia. I had to have iron infusions to reach normal levels and my gastroenterologist reluctantly reduced my omeprazole to 20 mg a day. Since your Prilosec has made no difference in over a month ask your gastro about discontinuing it. There are Synthroid injections but insurance would probably not pay for them since there is an easier possible solution. If something shows up on your EGD requiring PPIs it would be a different story. If endo and gastro can't find anything you might have to keep looking.

    I hope the thyroid biopsy finds nothing concerning but it is a good idea to rule out all possible causes. I'm under surveillance by four different specialists; it simmers in the back of my mind but thankfully my symptoms are currently well controlled.

  • ratherbesailing
    ratherbesailing Member Posts: 118
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    Sonya16, an x-ray is not sensitive enough to detect lung fibrosis - you would need a HR (high resolution) CT scan. Your RO know this.

    If you had radiation recently and are symptomatic you should really see a pulmonologist, ideally one who has experience treating radiation patients. I would also ask the RO for a copy of your radiation plan, which would tell exactly how much radiation your lung received, and take that the pulmonologist. You may be fine, but if not treating it early is important. I hate to say it, but your RO may not have any interest in admitting radiation did damage, even if they did nothing wrong that to cause it.

    Again, you may be fine! But it is your body and your future to protect.

  • jrnj
    jrnj Member Posts: 407
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    Hi Sonya, I had a similar story. During radiation I had a lump in throat feeling when I swallowed. After a few weeks it went away. A year later after Covid shot and a steroid shot I have this weird sensation again. My primary sends me for throat ultrasound. Three nodules, one large. I’m freaking thinking it’s cancer. Biopsy was benign. I have a million tests, and consults, throat swallow test, endoscopy/ colonoscopy, ent, endocrinologist, gastro, throat surgeon. All drs say everything is normal and nodules not causing the problem. Put me on omeprazole and Flonase. It took a few months, 6 start to finish, but it eventually went away. I have severe body aches and pains from letrozole, by so hard to know if omeprazole makes it worse. It might. I’m still taking it as it helps with my loose bowels.

  • sonya16
    sonya16 Member Posts: 57
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    Thank you everyone for sharing the similar issues you’re having or have had. That migratory joint and muscle pain and feeling unwell must’ve been a little bug because I did have some lower intestinal distress soon afterwards for two days and once that was over I felt better. But now the colonoscopy/endoscopy is not scheduled until mid November.

    I’m feeling very frustrated because I did call my radiation oncologist on Friday to press them further to investigate what is going on with my throat. I received a call back from the receptionist - not the doctor, and not even a nurse, who told me that he said I should call my primary or my oncologist. I couldn’t believe it, so I spoke to my primary and for now we decided I’ll go to another ENT for direction. The ENT I went to in the beginning of August really was of zero help and although I agree with a lot of natural remedies, he really couldn’t decide whether I had nasal drip, GERD or sensitivity from radiation and the things that he suggested were of no help. It is very concerning because when I breathe deeply and expand my throat

    , I get pain at the base of my throat-right where the notches of the collarbone are. This does not happen when I breathe through my nose only when I breathe through my mouth and it’s more painful when I wake up in the morning , obviously there’s something going on. I’ve been taking prescription strength Prilosec for about five weeks now and I don’t have heartburn but this sensation is still in my throat. I agree they probably don’t want to admit that the radiation has created this problem, which I think it’s quite obvious that it has. Meanwhile, what might’ve been able to be caught early has now been going on for three months and it is getting worse as far as the pain in my throat.

    In the meantime, my thyroid biopsy did come back benign so thank God for good news and my follow up mammography and ultrasound also came back fine.

    so I have an appointment tomorrow with a dermatologist because I noticed that the mole that I had on my body is looking strange now, very black and raised and hard, so I need to get that checked out and Tuesday I have an appointment with another ENT. I’m also going to call a pulmonologist because I have got to get this taken care of whatever it is. Somebody must have an answer.

    I spoke to a relative who is a doctor in California about my frustration with this last night and she felt that it is a good idea to see another ENT first (she didn’t feel the first ENT was of any help at all), and also to make an appointment with a pulmonologist to possibly do a bronchoscopy.

    I would just love to have just one week with freedom from all of this stuff!!!

  • gailmary
    gailmary Member Posts: 435
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    Sonya, best of luck finding out what's going on with your throat. Mine are very similar but I haven't gone as far as an ent or pulmonologist yet.

    I too was told gerds or post nasal drip. I cant believe its either. Had ct scan in July. Showed nothing. Ultrasound last month. Just 1 benign nodule. I believe it's delayed radiation damage. Radiation was back in 2009. We are watching lung nodules. It's something I notice but it doesn't bother me much.

    Good luck with figuring this out.

  • sonya16
    sonya16 Member Posts: 57
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    Hi gailmary, thank you for your reply. I agree with you in that I also think that it’s delayed radiation damage. Do you also have the sensation of something in your throat in addition to the ache? I have also been losing my voice on and off, becoming hoarse.

  • maggie15
    maggie15 Member Posts: 950
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    Hi Sonya16, I'm sorry that you haven't found any answers yet. Your throat issue sounds like it could be radiation damage. Hopefully the second ENT will investigate further. Did the first one check your throat with a laryngoscope?

    If you are still coughing you should definitely see a pulmonologist and ask for a HRCT to check for lung damage. It's too bad that your RO was so dismissive. My RO was actually helpful and diagnosed my RIPF. Tissue damage from radiation happens infrequently but it is a documented side effect. No doctor intentionally causes this damage but it happens with the toxic treatments needed to destroy cancer cells.

    I'm glad your thyroid biopsy was benign. I hope you also get good news about the mole. It is frustrating when you have to try to figure this out on your own. Hang in there.

  • sonya16
    sonya16 Member Posts: 57
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    Hi Maggie15,

    At the beginning of August, after I had been experiencing the throat issue for about 2 weeks, the first ENT did place a scope and viewed the glottis and voice box. He showed me the views afterwards, stating that there may have been some inflammation but that this could be caused by acid reflux, nasal drip or sensitivity to the radiation. However, a straight diagnosis was not given, just a sheet explaining natural solutions such as saline nose spray, aquiline water for the acid reflux. It was then that I consulted with my gastroenterologist to schedule a endoscopy along with the colonoscopy that I am due for. He prescribed the prescription strength Prilosec which i have been taking for 5 weeks with no relief. As I was not feeling well last weekend, the endoscopy/Colonoscopy was reschedled for mid November. I have asked that office to put me on a waiting list to get in sooner.

    Since then, I have developed the worsening pain at the base of my throat when breathing deeply and it is even worse in the morning. In the morning when I get up when I try to breathe in just a little deeply, I have the pain and I cough involuntarily. The pain is also now occurring at times when I breathe deeply in the very upper part of my chest in the center middle area.

    Perhaps I don't have lung damage, but I am concerned about the trachea/windpipe which could be causing these problems. After some research I have found that evidently this does happen after radiation sometimes. I will run this by the ENT I am seeing tomorrow but even so, I am going to call my oncologist and discuss with her my wish to consult with a pulmonologist. It is a shame that all of this is left to the patient to try to resolve with no help whatsoever from the very physicians that are supposed to help you. As I said, the most disappointing thing to me was the response from the radiation oncologist. And I will inform the oncologist about this which I feel I have to do, so she understands why I'm asking her and not him!!!

  • maggie15
    maggie15 Member Posts: 950
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    Hi Sonya16,

    In spite of the time and frustration involved I'm glad you are continuing to investigate your throat issue. If there is a narrowing of the esophagus it can be stretched during the EGD. Fibrosis in the throat is a bit more problematic. The current recommendation for that is PT for dysphagia and dietary changes. I know they do laser surgery to remodel throat tissue for sleep apnea but I don't know if it is ever done for fibrotic areas. My burn surgeon used a laser to reduce deep scarring in my hand and face to reduce nerve pain but didn't touch the area around my right breast since the thermal burn accident was just six weeks after I finished radiation. He couldn't find any information on how to treat the area near a malignancy and didn't want to chance it. Research is not done on unusual situations so it's hard to get answers. Doctors who treat head/neck cancer deal with the side effects of radiation in this area so consulting one of them might help if the second ENT has no suggestions.

    After a set of whole mouth x-rays (done once every 5 years) I need loads of dental work. I go to the dentist every 4 months, have bite wing x-rays often and have had dental work including a couple of crowns done but everyone was shocked at how much trouble showed up. It turns out I have dry mouth syndrome, probably from meds I take. I never noticed it because I drink water regularly (elevated BUN on blood tests) and SEs like pain and difficulty breathing are much more evident. The dentist will replace the bridge that is less than a year old gratis but I'll need to get root canals done on the anchoring teeth. I also need a bridge on the other side, some other crowns and fillings. My jawbone is not in the best condition between osteoporosis and bone that was removed for osteomyelitis. I'm having a yearly set of whole mouth x-rays going forward to try to prevent additional trouble.

    Let us know what you find out from your ENT visit. I hope your MO can provide referrals if you need them.

  • gailmary
    gailmary Member Posts: 435
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    My goodness Maggie. What a pain. It's hard to believe you didn't notice all the damage going on in your mouth. I'm trying to remember if you had any radiation for thyroid issues. My SIL has thyroid cancer and she's lost all her teeth due to dry mouth from radiation.

    Gailmary

  • maggie15
    maggie15 Member Posts: 950
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    Gailmary, you might be on to something. I had an emergent near total thyroidectomy (1 cm residual to save two parathyroid glands) for a large benign goiter compressing my trachea nearly 5 years ago. Post radiation (whole breast and nodes) my thyroid started growing like crazy so it is 7 cm on the strip side and 2 cm on the side which was totally removed. When my lung problems developed the RO showed me the scatter field (including thyroid area and esophagus) but never mentioned salivary glands. About 50% of my trachea is closed again due to deviation this time. I'll need a re-excision eventually but intubation can reactivate the RIPF and repeat surgery can injure the larynx so I'm trying to buy time. If I knew about the serious SEs that would occur I would have declined the nodes and the 7% benefit. Hindsight is 20/20.

    I tend to ignore SEs which fall into the discomfort category (too many real issues) but dry mouth is turning out to be very expensive. Hopefully others will benefit from knowing about this.

  • sonya16
    sonya16 Member Posts: 57
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    Oh Maggie15 you certainly have had a time of it. It is amazing you have such a great attitude after all that’s happened to you. And it’s absolutely wonderful that you reach out and help others like me with our questions. problems with teeth can get extremely expensive, I know.

    Funny you mention the salivary glands because last time I went to the dentist for a cleaning. I asked him about these little lumps I get on the inside of my cheeks that fill up and disappear and fill up and disappear, and he told me that it was most likely the salivary glands and was from the radiation. I agree that if I had known what I know now I would not have had the lymph nodes irradiated, but then again, no one told me any of this stuff could happen either.

    The second ENT I went to earlier this week said she did see some Adema in the back of one of my nasal passages and noticed the post nasal drip. The funny thing is after she sprayed my nose with lidocaine and something else before doing the scope my throat feel clear for a full day and a half. However, the sensation of a lump in my throat came back, She prescribed a nasal spray that completely dries up the mucus but so far it really hasn’t helped.

    I see my oncologist tomorrow, and I’ll mention all this to her again, but I do have my endoscopy/colonoscopy scheduled for mid November. Hopefully I can get some answers and get rid of this finally.

    The past week I’ve also been noticing that I am developing some swelling in my left arm, which is the side I had the surgery and radiation to the nodes under my arm and at the collarbone area. I always continue to do my arm exercises and I tried doing the massage myself the past couple of days. However, I made an appointment with the lymphedema physical therapist later this week. I need to brush up on how to self massage. There are videos online but I want her to do an assessment anyway.

  • maggie15
    maggie15 Member Posts: 950
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    Hi Sonya16, Since whatever the ENT sprayed made your throat feel normal for a day and a half there should be something to help. If it’s a topical decongestant (which I think an ENT used before scoping prior to my thyroid surgery) or a steroid spray to reduce the swelling it would be good if you could use it regularly.

    I’m sorry that LE is starting to affect your left arm. I’m glad you are going to the therapist for an assessment and specific instructions for self massage. I ended up with LE in my right breast, uncomfortable but not as annoying as in the arm.

    I hope your oncologist has some helpful ideas. It’s frustrating when they can’t find the cause of a problem.

  • sonya16
    sonya16 Member Posts: 57
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    Hi Maggie15,


    I have a question about your Prilosec medication while you were on it. I was taking 20 mg OTC during the month of August and then in September the gastroenterologist switch me to 40 mg a day. It hasn’t helped and I’ve been getting rushing in my ears with my heartbeat, and I see that my blood pressure has gone up considerably, I was always around 120/70 and now I’m up to 150/85 since the Prilosec hasn’t helped me with my throat issue, and I have a sneaky feeling it has something to do with the blood pressure I decided to stop at two days ago. I did call my Gastro doctor about this and he left a message with his assistant that he didn’t think it was the meds. Well, after some research, I see that it actually can affect your blood pressure. So I stopped it as I said, and I hope that everything goes back to normal in the next few weeks. Did you experience any side effects from the Prilosec? As I said, I was on 20 mg for a month and then the 40 mg a day for two months.

  • maggie15
    maggie15 Member Posts: 950
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    Hi Sonya16,

    I was originally prescribed 80 mg a day of omeprazole (after being hospitalized for a severe upper GI bleed) and decreased to 40 mg a day after six months. After a year I begged to go down to 20 mg a day because of the long term side effects (osteoporosis, c.diff, malabsorption of minerals and others.) I have had problems with all three mentioned but my gastroenterologist reminds me that bleeding to death is worse so I am taking the minimum dose and supplementing with iron, magnesium, and vitamins D, E and B complex which are all low on blood tests. I have had high blood pressure for a while so I don't think the omeprazole caused it. However, when I was on IV PPIs which must have been pretty strong my blood pressure was measured at 325/240 and had to be brought down by cardiac meds before an EGD. Two years later a nurse in the busy hospital scoping dept recognized me by sight as "the woman who ended up here when she was supposed to be boarding an airplane to Rome," what had actually happened. She told me she remembered me since I was the highest bp she had ever seen in her 23 years of nursing. The esophagitis stress could have caused the super high bp (although initially I passed out from low bp in the ambulance) but at that time I was full of PPIs. They have bad side effects (even though they saved my life) so I wouldn't take them if they don't help your swallowing issues.

    I hope your blood pressure returns to normal. Depending on what your EGD shows you might be prescribed PPIs again but I am in favor of avoiding them if possible. Hopefully a reason for your swallowing problems will be found.