Moogy Posted March 20, 2007 Share Posted March 20, 2007 My dad, who will be 91 next summer, recently moved in with me and my husband. (My mom died of a stroke in 2005, and since then, he had been living alone.) We live on a cattle ranch in west Texas, 50 miles from the nearest thing that could be called a city. Background: Papa had surgery for lung cancer (non-small cell) in 1998. The cardio-thorasic surgeon removed the top lobe of Papa's right lung. Papa never saw a cancer doctor, and he did not have radiation or chemo or any other treatment, since the cancer had not spread into any lymph nodes. Papa was also diagnosed with emphysema in 1998, and that has been progressing slowly. He is on oxygen most of every day, and a recent test shows he has about 50% of normal lung capacity. However, he is still reasonably active for his age, working a bit in the garden, etc., although he tires easily. Current situation: He had a suspicious annual xray in January 2007, so we got his xrays from last year (in his old hometown) for comparison. The comparison looked bad, so the primary care doctor ordered a CT scan, which he had a couple of weeks ago. It showed a 9 mm star-shaped mass that looked very suspiciously like a malignancy, plus another 1.5 cm mass that was questionable. Problems: I think we don't have any idea what his options are until we have a firm diagnosis with type of cancer, etc. Papa says he doesn't see any reason to try to extend his life, since he is over 90 already, but neither of us know what treatments might help make him more comfortable as the disease progresses. Now I am having trouble locating a pulmo doctor who will consult with us about whether he can have needle biopsy, given his compromised lungs. Our primary care doctor says the pulmo doctors do the biopsies, and that is who we should see next. (I am confused by this, because a radiologist did his 1998 CT-guided biopsy.) Apparently we live in an underserved area. There are only 3 pulmo doctors in the nearest city, which is 50 miles from us. One of these doctors just got called into active duty military service. Another wants to review Papa's test results before deciding if he wants him as a patient (Is this common?)and I am working to get the results to him. I called Papa's pulmo doctor from 1998, who is still in the old hometown (150 miles or so from us). The receptionist said no, don't sent any test results, we aren't allowed to give out the fax number, the nurse will call you in a day or two after reviewing your case (how can she review it, since they didn't ask for anything except my brief phone description?). After hearing nothing for several days, I called again today and was told both the doc and the nurses are on vacation this week, and we are sorry no one called but we can't do anything until they come back, and besides, we are fully booked for 6 weeks anyway. If I don't hear back soon, maybe I should give up and try for an appointment at a cancer center in a larger city? Dallas is about 4 hours away, and we have relatives in that area... Is it typical to get the runaround for a while when trying to get a specialist? I never had trouble getting doctors when I lived in Austin. Is the problem the rural area, or that my dad is on Medicare, which pays very low rates? Does anyone have experience with treatment and diagnosis for such an elderly patient, with emphysema also? Thanks for any advice or suggestions etc. Moogy Quote Link to comment Share on other sites More sharing options...
wendyr Posted March 20, 2007 Share Posted March 20, 2007 Hi Moogy: so sorry to hear of Papa's bad news. First of all my husband is on medicare & we have never had a problem with them paying for his treatment.We go to MD Anderson Cancer Center in Orlando,a satellite of the Houston facility,and 180 miles round trip from where we live. We took the back seats out of the mini van & made up a bed & I just haul him over there that way. You don't say what part of Texas you're in but if there is a major cancer center near you, like MD Anderson in Houston, give them a call. They're straight shooters & will tell you what you need to do. Get an appointment with them so that their specialists can check out Papa and give you their opinion as to what the course of treatment should be. Good Luck & God Bless wendy Quote Link to comment Share on other sites More sharing options...
Welthy Posted March 20, 2007 Share Posted March 20, 2007 Moogy, Welcome and sorry about your Dad's new problems. I echo Wendy about Medicare. We've never had a problem with any Doctor accepting Medicare. There could be some out there not willing to take the extremely reduced negotiated rates that Medicare pays. I'm going to venture out on a limb here and wonder if his age is what is putting Doctors off. I could be very wrong, but have read different things about problems getting good treatment for geriatric patients. Just a thought. M.D. Anderson could be your best bet or, as you mentioned, a larger medical center in Dallas. Good luck to your Papa and keep us posted. It really stinks to find yourself in this situation. Welthy Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted March 20, 2007 Share Posted March 20, 2007 Hi Moogy, Sorry to hear about Papa. A PET scan would indicate, I think, whether or not the spots were metabolically active. I think that's much less invasive than a biopsy, and less stressful. At this point, I believe they would consider any tumor to be a new primary rather than the old one come back. I agree about a specialty facility. If that's what Papa wants to do. Regarding his lung capacity -- I am running about 45% lung power now, and they had no problem putting me down for bronchoscopies. This was after my cancer surgery,and I have COPD, but I am years younger than your dad. I think it's terrific that you're willing to go all out to help your dad get the best treatment possible ( I think you're going to have to travel from the sound of it). You haven't said much about what he thinks of all this, and what he wants to do. Glad you found us, and welcome... XOXOXX MaryAnn Quote Link to comment Share on other sites More sharing options...
Moogy Posted March 21, 2007 Author Share Posted March 21, 2007 Thanks for the replies. Papa hasn't said much about what he wants to do. That is typical for him--he isn't big on talking about critical issues. I need to make all the phone calls and go with him for visits. His mind is still very sharp, but he doesn't hear well, even with his hearing aids. So he counts on me for help communicating. The primary care doctors office sent some of his reports to a pulmo doctor today, after several days of me calling and bugging them. (The doctor and his nurse are on vacation, so they had to find someone else to do it.) Tomorrow I need to go to the radiology lab to pick up his CT test, since the pulmo doctor wants to review that instead of just the CT report. Then we will find out if he is willing to take Papa as a patient. I will wait for that decision (at least if the decision comes soon) before I tell Papa we need to think about traveling to Dallas or Houston. Papa says he thinks cancer treatments are largely ineffective. (This is strange considering the good results he had with his surgery in 1998!) I am reluctant to insist on a conversation about options when neither of us understands what options are currently available. P.S. Can someone tell me how to make the signature info into the tiny text? I couldn't see how to do that on the signature page. Thanks again for your input, Quote Link to comment Share on other sites More sharing options...
Shelley (MLC) Posted March 21, 2007 Share Posted March 21, 2007 Moogy, Good luck with your dad. I'm sure this is very scary and frustrating for both of you. As far as the font size...I borrowed this from the tech site. To change your font size: At the beginning of everything you want a smaller size, put ; and, at the end, put ..... Try plugging in 9 for your font size. Shelley Quote Link to comment Share on other sites More sharing options...
Don M Posted March 21, 2007 Share Posted March 21, 2007 Hi Moogy and welcome. I have noticed that the response time is much quicker at a major comprehensive cancer center. Good luck to you and your dad. Don M Quote Link to comment Share on other sites More sharing options...
Moogy Posted March 24, 2007 Author Share Posted March 24, 2007 Another doctor called today and said, sorry, but they are too busy to take Papa as a patient. This was the pulmo doctor that he used in 1998 when he had his lung surgery. Currently, I am waiting on one more possibility before we have to go to a larger city. There is one remaining oncologist that will give us a consult if we get a referral from Papa's primary care doctor. However, the referring doctor is on vacation for another week. His nurse was on vacation last week, too. My hope is that when she returns on Monday, she will be able to handle the referral. Quote Link to comment Share on other sites More sharing options...
Calintay Posted March 24, 2007 Share Posted March 24, 2007 I am praying for you to get Papa a consult as soon as possible. My prayers being said that someone will be able to help soon. The city may be better than Quote Link to comment Share on other sites More sharing options...
recce101 Posted March 25, 2007 Share Posted March 25, 2007 [ Moogy ] There is one remaining oncologist that will give us a consult if we get a referral from Papa's primary care doctor. However, the referring doctor is on vacation for another week. His nurse was on vacation last week, too... Doctors' vacations seem to come at the worst possible times, don't they? There's a lot to be said for the rural lifestyle (I grew up in three very small towns in Central Texas), but it's true that specialists are a lot easier to find in the big cities. If a particular one is on vacation or a business trip, there's usually a colleague to fill in for him, perhaps one of the other doctors in the specialty clinic they formed to share overhead costs and give themselves a bit of scheduling flexibility. And if it's an oncology clinic or major cancer center, I doubt if the Medicare question is a factor in their accepting new patients, since Medicare patients form a large part of their business (no one has ever told me that -- it just seems reasonable ). Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
fillise Posted March 25, 2007 Share Posted March 25, 2007 Moogy--keep us up to date on finding specialist for your father. It may take some agitating on your part. Your father should not be written off and should not be pushed aside.--Susan Quote Link to comment Share on other sites More sharing options...
Welthy Posted March 31, 2007 Share Posted March 31, 2007 Any updates on this frustrating situation? Keeping you and Dad in my thoughts. Welthy Quote Link to comment Share on other sites More sharing options...
Moogy Posted April 4, 2007 Author Share Posted April 4, 2007 After numerous rejections, I finally have a pulmonary doctor appointment for my father! I was shocked at the number of doctors who declined to see him, often without even getting the specifics of his situation. This doctor has already reviewed the CT Scan, and he says although the area is too small for a traditional biopsy, a biopsy is possible if it is CT-guided. That is the type of biopsy Papa had in 1998, so we are familiar with the procedure. I asked for a consultation, before being scheduled for a procedure. I want my dad to know what his options are before he decides if he even wants any more tests or interventions. I also want to know the options for myself, so I can help him wade through the information, although of course the actual decisions should be his, not mine. I have ordered his records from the 1998 diagnosis and surgery, for use by the new doctors. We should receive those records in plenty of time for the upcoming appointment (a bit over 2 weeks from now, which is soon compared to the other doctors that I called.) Thanks for all the support as I struggled to find a doctor for Papa. Quote Link to comment Share on other sites More sharing options...
recce101 Posted April 5, 2007 Share Posted April 5, 2007 Moogy -- at least there's some movement now. Thanks for the update, and best wishes for less frustration down the road. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Maryanne Posted April 7, 2007 Share Posted April 7, 2007 I am so glad something is fianlly getting done! Thinking of him and really hoping for good results. G-d bless him to make to to his ninedies. I pray for more time for him to be with you. Keep us posted. Maryanne Quote Link to comment Share on other sites More sharing options...
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