CancerCompass message board discussion started by Blessed2 on 1/19/2008 http://www.cancercompass.com/message-board/message/all,19885,0.htm Sat, 19 Jul 2008 00:00:00 GMT Sat, 19 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mom was treated for SCLC (chemo & radiation) followed by prophylactic radiation to the brain. She was starting to get her stamina back 6 months later, starting to get her hair back, but then her hair stopped growing, she was increasingly fatigued, she stayed cold even in the summer, and last she complained of having bags under her eyes. There was concern that she may have a cancerous tumor in her esophagus, plus she has a pleural effusion that remains from the original cancer. So, everyone and every doctor assumed her symptoms were related to the past and/or present cancer. It wasn't until we took her to the hospital with an intestinal ileus (bowels stopped working) that one of her doctors looked for an underlying cause other than cancer. While one was looking for mets, he was checking her thyroid function - ZERO thyroid function. This causes all of the symptoms including the ileus. He started her on thryoid replacement, her bowels regained function and over time the other symptoms will improve as well. He explained that while they try to protect this area, it is often damaged and that over time the function continues to lessen until there isn't any...fitting perfectly with her recent increase in symptoms.  It is painful to know that we could have prevented the pain and this recent hospitalization, that she could have felt much better and perhaps be without her wig by now had we known to ask for this or had her physicians monitored it for her as a standard of care. I hope this helps someone else. Blessed2 Sat, 19 Jan 2008 00:00:00 GMT You posted this months ago, so maybe you'll never read it. I wish patients were more educated about late effects of treatments. I had trouble with my thyroid also after radiation treatments. As a patient, I didn't realize that I needed to educate myself. Once I stopped following up with my oncologist, I didn't realize that the average doctor isn't very educated about treatment effects. I'm glad that your mother is feeling better and I hope that she continues to do well.  zarya Mon, 12 May 2008 00:00:00 GMT Thank you for the response. It is sad but true, doctors seem to know and focus on their little piece of if patient. The gastro guy looking for cancer because she was a cancer patient, forgetting the rest. Thankfully the one physician looked at her holistically and looked beyond cancer itself. We are so thankful for him. There is a lot for the physicians to keep up with and likewise a lot for patients to keep up with, but I would think that this should be standard patient education, standard patient screening on an ongoing plan of care.  While off from work I could spend more time learning and researching but when you work 50-60 hours a week, have your own family to care for too, or when you are a patient exhausted with no energy, or when your needs are really complex, it is very difficult for the patient and family to do it well, and you assume that if you are seeing 3 docs a month, someone would put it all together. I posted to hope that it might prevent someone from going through what Mom did.  It is sad to think that as a lay person you have to really own your care and help to ensure that you receive what is needed...and in Mom's case nothing more.  The GI guy was so fascinated by her benign esophageal tumor, dying to get in there and see it for himself. He is asking her to undergo yet another (makes her 5th I believe) GED just so that he can take a peek himself - forget the risk the pain, let's just do this!  You caught me on a day that I am very frustrated with the medical community - in reality there are some very kind and thorough physicians and they are very stressed with the expectations placed on them these days. I am not sure what the answer is but our healthcare system, while the best in the world perhaps, is in peril. Blessed2 Mon, 12 May 2008 00:00:00 GMT