Octobergrace

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

I don't have to tell anyone here that lung cancer is a disease of extremes; I certainly have experienced emotions in extremes unknown to me until I walked this journey with my father. Extreme anger: botched diagnosis, lost time. Extreme happiness: he, my mother and I sighted a perfect double rainbow the evening of his first treatment. Extreme bittersweetness: he called me outdoors at midnight to watch a lunar eclipse with him and then drew a picture for his greatgrandson(4yrs.)of a man on the moon waving to his wife on earth. Extremely good days are followed by extremely bad ones and symptomless hours lull one to al-most forget for a moment -until some extreme change/symptom/reaction reminds one of the land mines all around and precipice somewhere up ahead in the fog. My dad lost his voice in less than a week's time and has a dr. completely insensitive to the emotional impact of losing one's primary means of communication quite suddenly. Drs. miss a lot of stuff. It seemed that you felt you needed to further define and explain your anger in the second post. Don't...your anger is justified and right for the moment. I have found that my anger ebbs and flows (sometimes in extremes) as the ocean tides but that my love for my Dad is the Ocean and all comes into balance in good time. Remember, at the bottom of anger is usually fear. And fear demands courage, strength, and often action from us. It also informs our spiritual selves...by the way, I like your screen name. PS re diagnosis: My Dad's oncologist said he believes that the rising incidence of young, non-smoking and predominately female adeno. diagnoses are related to hairspray/makeup/personal care products often used and inhaled several times a day??? Sorry for the book...

Hi Nadri, Reading your post reminded me of where my Dad, family and I were last summer. My dad's NSCLC was also "overlooked" for months and suddenly we found ourselves in a biopsy and oncologist's office after I took him to the doctor for a bronchial infection. He was stage 4 and I, too, desperately searched the web and every other resource I could think of to educate myself (ha) and to find some ray of hope for him, in his shock and despair worrying about my mother, finances and the Great Unknown ahead of him. Finding this site has been more helpful than I can say, but also lets me know that though the road we have travelled this past year seems long, remarkably blessed at times and also unspeakably hard, we have just begun to understand hard. My advice to you is that you encourage your Dad to get several opinions early on while you are still in the earliest decision/research stage that follows the shock of the diagnosis and before he and you are pulled into the dependency that one who is fighting for life comes to feel for the doctor "in charge". I would also recommend that you get the evaluation of a multidisciplinary team either at a medical university treatment clinic or at a clinic which uses the multidisciplinary approach to try to get information about what options may be available, now and in future, by each of the treatment modes - chemo, radiation, holisitic, etc. I have learned the hard way that the drs. of each discipline tend to be resistant to treatment in another modality until they themselves have exploited maximum treatment profit...and then it is too late to be eligible for other treatment since the lung cancer and treatment so compromises one's stamina. And, believe me, they know all this in the beginning when they recommend that one exhaust the treatment at hand before looking into other options. If I sound angry, I am. I fear that my Dad has been just one of many participants in his doctor's chemo mill. The doctor delayed conversations and contacts to get a multidisciplinary consult and now after all has failed says that he "could" look into protocols but because he "could doesn't mean he should." My dad had an exceptional performance status for most of the year until he contracted chemo induced pneumonia, which he now cannot shake. And that's not all. As my Dad's primary caregiver, I have determined that I will honor his right to make his own decisions with dignity and respect; my dad is older, smarter, braver and better than I am. The doctor speaks right through him to me, as though he isn't there and I cannot confront him about his medical and/or bedside arrogance without usurping my dad's dignity (as his dr. does) and contributing to his fear of insulting the dr. and hearing whatever further bad news this doctor may have to spring on him at any given appt. One is very vulnerable in the journey to accept and deal with this disease. In short, I think this dr. has decided that it's no big deal that my Dad is dying since he is 79 years old and really has no repect for his heroic effort to live on, to fight, to ask his questions on his own terms and in his own time. If we could start again and if I could know what I have learned the hard way, I would encourage my Dad to hear opinions from all modalities before settling on any one treatment and any one doctor. Options really narrow as time goes on and one becomes less emotionally and physically equipped to confront medical stonewalling and the ugly competitiveness for your treatment dollars. In the meantime, make all the memories you can and make sure you are there and available for the unpredictable and unscheduled moments that are more important than I can tell you. My best thoughts and prayers for strength go with you and your Dad...and with each person whose posts I have read and learned from here. Octobergrace