richinsdakota Posted July 4, 2004 Share Posted July 4, 2004 Hi all; thx so much for all your encouragement and info... Can u help me again with 2nd opinion info? Is it worthwhile...are more options sometimes included? Ive seen your references to MD Andersen, and Bloch...is this where a 2nd opinion can be obtained? whats involved...traveling there, or forwarding path and films? or..? Afraid I dont know diddely about this stuff yet...thx for any advice. Also, has anyone had RF ablation of lung mass, in lieu of surgery? Ive seen data suggesting its just as effective as tumor removal, and is a lot less invasive..? dunno...jus exploring options all I can...thx for any info....Rich Quote Link to comment Share on other sites More sharing options...
ljdub Posted July 4, 2004 Share Posted July 4, 2004 Hi Rich, I see you seem still to be looking for options in lieu of surgery, and i'll be interested in the replies you get, as well. Too late for me, I had the surgery in May and am glad I did, but the one thing I said in my very first post was that it all seemed to be moving so quickly, I didn't have time to think before my gp was referring me to a surgeon, and then on to an oncologist. I think I would have held out for a little more time to explore options if I had it to do again, but then again, once you know it's there it's natural to want it OUT of there, if that's an option. I have also seen the posts about the cancer specialty centers, and there seem to be mixed reports about the results, but I can tell you that I feel very fortunate to be living in close proximity to the Mayo Clinic and their cancer center here in Arizona. Their professionalism has been very impressive, and I found it reassuring that they see SO many people with our disease. I wanted someone who does this kind of thing all day long, has much experience in the field, and who I was confident would be up on the latest developments, etc. I feel comfortable that I found that at Mayo. Wishing you the best in your search for the right answers for you. Quote Link to comment Share on other sites More sharing options...
Octobergrace Posted July 4, 2004 Share Posted July 4, 2004 We were interested in exploring RFA for my dad and I learned by net research that Wake Forest School of Medicine has a good multidisciplinary lung cancer clinic for new lung cancer patients which evaluates all treatment options including RFA and has a very experienced radiologist Dr. Peter Kavanaugh over that program. I emailed the director of the clinic and received a personal reply within 6 HOURS! We arranged for my Dad's scans to be sent for review by Dr. Kavanaugh to determine if he may be appropriate for that treatment before driving to Wake. The biggest holdup was getting the local oncologist to send the records. Unfortunately, my father had too many tumors in difficult locations for RFA to be an option. But, I was amazed that the RN in charge of the clinic responded to every email I sent within 24 hours, arranged for Dr. Kavanaugh to review the records and was ready to set up an appt. within 1 to 2 weeks (the lung clinic is held 1 day/wk.)if Dr. Kavanaugh gave the go-ahead. My biggest regret now is that my Dad did not go ahead and attend the clinic for a 2nd opinion and to get that multidisciplinary input early on. When RFA option fell through, he said he would just stick with the local oncologist (didn't want to risk alienating him)...I think the new diagnosis and chemo regiment were already so overwhelming that he couldn't cope with incorporating anything more about cancer into his life. Looking through the major cancer treatment hospitals/university cancer centers websites, I found many had ways to contact the program as a patient without a referral (of course, you may have to have a referral or at least insurance approval before an appt. if your insurance requires); they are surprisingly accessible. The Wake Forest program was the most professional, prompt and compassionate group of medical professionals that I have ever dealt with - and that includes a lot of medical folks since my work is with dually diagnosed children. I wish you the best and want to share my experience with others so that they can avoid the same mistake that we made. If I had another chance, I would have insisted that we make the trip to Wake Forest for a second opinion - from a multidisciplinary team. Best wishes, Octobergrace Quote Link to comment Share on other sites More sharing options...
Terry Posted July 4, 2004 Share Posted July 4, 2004 If you do a "Search for Author" for Terri here on LCHELP, you will get a lot of information about RFA. It is common to want to act quickly once diagnosed, especially when it seems to take so long for test results and local doctors to decide what that diagnosis is. Here are some of my hindsights which can be your foresights: Second opinions might be more candid if obtained before a treatment has been started. I suspect that doctors are extremely reluctant to negate what other doctors have already done. My husband and I recently went for a second opinion in New York City and the doctor there did nothing but confirm that the treatment he has received so far is appropriate. Did the doctor truly agree 100% with the treatment or was he just confirming the treatment out of professional curtesy? I will never know. Try to get the whole picture as soon as you can. That includes CT scans, MRI of head, PET scan for whole body, and bone scan. Otherwise the doctors will string you along, waiting until there are serious symptoms before they will perform these expensive tests. If the cancer has spread, you need to know to what extent so you can come up with the best path. For example, my husband was complaining of serious back pain for weeks before they sent him for a bone scan and found cancer on his spine. I can't help but wonder, WHAT IF this had been found sooner! You are doing the right thing by educating yourself. Good for you. Terry Quote Link to comment Share on other sites More sharing options...
richinsdakota Posted July 5, 2004 Author Share Posted July 5, 2004 Thanks for the info from all; I go for surgeons diag/options opinion ...consultation tues. Gonna ask for more screening scans...yes, Ive had severe back pain for years...always told it was degenerative joint arthritis....no tests, just prescribe vioxx and such . Wonder how they know its D. joint arthritis, huh.... Ok, Ill take your cues and run...still learnin lot...thx Quote Link to comment Share on other sites More sharing options...
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