Don M Posted March 1, 2006 Share Posted March 1, 2006 I saw Dr. Sui, my oncologist yesterday. He is pretty much convinced, as am I that the nodule is a cancer. His plan was to do a fine needle aspiration biopsy, but I declined that. I told him that fnas were usually inconclusive. He said he suggested the fna because that was the standard next step. I told him I had a plan and he was very receptive to what I wanted to do. I told him I wanted to have a PET scan. I wanted to see if the PET scan also indicated cancer. I also wanted to use the PET scan to see if there was any other cancer. Dr Sui agreed with that and also suggested having an MRI to rule out brain mets, which I agreed to do. I have never had a brain MRI before and it is probably about time since this would be my third cancer. I have no symptoms indicative of brain mets. Then he talked about seeing a pulmonologist to see if I was a candidate for surgery. I told him that I did not want conventional surgery this time and that I wanted to have cyberknife surgery to preserve my pulmonary capacity and kill the tumor. Then, I would do a chemo followup. I said that I would see my pulmonologist before the cyber knife surgery just to run everything by him and see if he agrees that my pulmonary capacity may be too compromised. But, thinking about it after the appointment, I may skip that step and go straight to cyberknife if it is cancer. I had described my past history and current situation to the cyberknife message board, and 2 doctors said I was an ideal candidate for cyberknife surgery. The cyberknife guys say that the track record for treatment of primarys is just as good as conventional surgery based on the number of cases so far. There is not nearly as much data for cyberknife compared to resection and there have been no studies designed to compare the two so one cannot categorically say that cyberknife is as effective as conventional surgery. However, it becomes more appropriate to use cyberknife when one’s pulmonary capacity may become too compromised by surgery. Dr Sui agreed that my plan was sound and was willing to refer me to a cyberknife facility at the Swedish Cancer Center in Seattle. They are a premier outfit. The cyberknife equipment uses robotics that runs software called "synchrony". It allows the equipment to very accurately target the tumor while I am breathing, It is supposed to be more accurate than shaped beam equipment such as Novalis. I called them yesterday, and they would be willing to proceed based on data from the CT scan and PET scan if cancer was indicated. I would not have to do a biopsy. I asked the oncologist how likely it was for one to have 3 primarys in the space of just over 2 years. He said that it was very unlikely and that he thought my disease may be metastatic. My last tumor could have been a metastasis. However, if there is no disease anywhere else in my body, the treatment is the same whether it is a new primary or not. I had the MRI yesterday and it was an interesting experience. I had no idea it would make such loud noises. After an infusion for contrast, I experienced momentary nausea, a rapid heartbeat and excess salivation. It soon subsided, but I had to swallow a lot of saliva during the scan. I hope I held my head still enough during my swallowing. I get the results from that this Friday. So, my first hope is that the PET scan is dark. But if I have cancer again I hope it is just the nodule only. I will zap it, do chemo, and if I am lucky it won’t come back. The third time is a charm they say. Yesterday, I asked Dr Sui for a Rx for xanax and lexapro. I will use it for a while. I feel a little sad, but it is not just for me. It is for others on this board too. One thing I have learned from this disease is compassion. Also, I wonder if cyberknife would be appropriate for those who have suspected tumors, but can't have surgery because of past radiation scarring? Maybe you should look into it Cindi and Frank. http://www.cyberknifesupport.org/forum/default.aspx?c=4 Don M Quote Link to comment Share on other sites More sharing options...
Kasey Posted March 1, 2006 Share Posted March 1, 2006 Boy, Don, sounds as if you had really done some homework and were armed and ready for your appt. GOOD for you. It sounds like a good plan.......but must admit I have absolutely no expertise in any of what you were talking about. I DO read EVERYTHING, though, that folks post to learn all I can. I always offer you my best.......be it prayers, hopes, wishes. Best of luck as you move forward and please keep us all up to date. Kasey Quote Link to comment Share on other sites More sharing options...
ginnyde Posted March 1, 2006 Share Posted March 1, 2006 Don, I am glad to see that you are such a strong advocate for yourself. Often, I think we, in conjunction with the drs. advice, know what is best for our bodies. I hope it goes well. Quote Link to comment Share on other sites More sharing options...
dchurchi Posted March 1, 2006 Share Posted March 1, 2006 Don, I am sorry to hear of your new upcoming battle. I like the fact your Dr. is so willing to LISTEN to you and what you want done to YOUR body, there are not enough of these Drs. Praying your MRI results will show empty headed. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted March 1, 2006 Share Posted March 1, 2006 Don, Good thing I ALWAYS read your posts . Always find good things in there. I was thinking about cyberknife as I was reading and then to have a link for Frank and me to actually follow; how cool is that? I like that you are smart and are taking charge and have gained the respect of Dr. Sui and that you know where to go to get what you need. Xanax is a good idea and anti-depressent is good to help keep you on keel and steady on your feet. Love that Ativan and I won't be without lexapro. I am off to the cyberknife board to learn something that may be of use to me. Thanks, Don. You have had compassion all this time, it is my belief. Cindi o'h Quote Link to comment Share on other sites More sharing options...
tatlyn Posted March 1, 2006 Share Posted March 1, 2006 Don, all the best to you. You are amazing!! Lynda Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted March 1, 2006 Share Posted March 1, 2006 Hey Don... I was just at your CK board. Very impressive. I know where I will be tonight til 2 am with a cup of coffee in my hands. Thanks for the link! Cindi o'h Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted March 1, 2006 Share Posted March 1, 2006 Wow, I'm glad to see you know your stuff! Seriously, it's good to see when you can have a good discussion with the doctor and come out with a game plan for you. Sounds like you're ready to tackle this again. Prayers for you, Don. Joanie ((())) Quote Link to comment Share on other sites More sharing options...
carolhg Posted March 1, 2006 Share Posted March 1, 2006 It sounds like you have a very good plan Don. I am praying for the best for you. Prayers Quote Link to comment Share on other sites More sharing options...
Maryanne Posted March 1, 2006 Share Posted March 1, 2006 Hi Don, What can I say, I know what a well informed gentleman you are through all your posts, but you really know how to take the bull by the horns. You are truly amazing. I admire you so much fot that. Also, your compassion to help others is very appreciated and you truly are an asset to this board. We are lucky to have you. I have my mediatation prayers going out to you for you pet to be dark, and if it is just a nodule that they can zap it and that will be it. Take care my friend, and take some comfort in knowing you have mega prayers sent your way from all over the world. Maryanne Quote Link to comment Share on other sites More sharing options...
gail Posted March 1, 2006 Share Posted March 1, 2006 You go get em!!! I can hear the calvary cry from here! Definitely do the meds. My other thought--after my lung cancer I saw a therapist (a cancer related one), because it was my third primary. I decided there in the hospital that it was definitely time to change my life and stop growing tumors. Now my therapist gets mad when I say that--You didn't cause the tumors and such--next month I will be 5 years cancer free--and I haven't gone that long without a cancer diagnosis EVER Have you discovered Bernie Siegel's books? gail Quote Link to comment Share on other sites More sharing options...
Connie B Posted March 2, 2006 Share Posted March 2, 2006 Don, I know you already know this, that even IF this nodule lights up it doesn't mean it's cancer either. We all now that PET scans can show HOTSPOTS as well that are NOT cancer. The first PET scan we did on my nodule it lite up, and then when we went back a year later, and two years later, it didn't light up! I just want to think POSITIVE in hopes that you don't have to face a third cancer issue. (((DON))) Sending Positive Vibes Buddy your way. Adding lots and lots of prayers as well. Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted March 2, 2006 Share Posted March 2, 2006 Don,I'm glad you have a well researched plan of attack,and an attentive dr. Still hoping though that all that won't be needed. Quote Link to comment Share on other sites More sharing options...
Nancy B Posted March 2, 2006 Share Posted March 2, 2006 Don, sounds like you are armed and ready. Many prayers coming your way. Hugs, Nancy B Quote Link to comment Share on other sites More sharing options...
Don M Posted March 2, 2006 Author Share Posted March 2, 2006 Thanks again for you kind words and support everyone. Cindi: I got that link from someone on the board, but I can't remembr who. I am glad I saved it. Gail, I ordered a Bernie Siegel book from the library: Love, medicine & miracles by Siegel, Bernie S. I have always thought that cancer is a peculiar mind/body disease....attitude is very important. Connie B; I know that PET scans are not proof of cancer one way or the other. I think they can be 90% reliable for a tumor of 2 cm in size. If the PET scan shows negative, I think I may have it zapped anyway if they will do it. I just have this one lung left, and a conventional biopsy is sure to take some good lung tissue with it. It may be benign or it may be malignant when they zap it, I will never know for sure. But this thing is 2 cm in size and I don't want to take the wait and see approach. As far as I know, the only risk from cyberknife is that a cancer could develop at the site many years hence. I do have a very good pulmonologist and maybe I should run all this stuf by him before I jump in. Don M Quote Link to comment Share on other sites More sharing options...
Connie B Posted March 2, 2006 Share Posted March 2, 2006 Boy Don, if it were me, I sure would run it by my Pulm Doc before I decided anything. I must have read your other message wrong, because I thought you wrote it was a (mm) and not a cm size. None the less, I like the cyber knife idea as well. Please chat with your pulm doc first?! (((DON)))) More is better when it comes to information. Quote Link to comment Share on other sites More sharing options...
kimmek Posted March 2, 2006 Share Posted March 2, 2006 Wow Don you really know your stuff!! But thats really the only way to be in these situations. You are very lucky to have a responsive doctor and one who listens as well. Any idea on how soon all this could take place? Wherever t happens im sure you will have excellent results!! Kim Quote Link to comment Share on other sites More sharing options...
chloesmom Posted March 2, 2006 Share Posted March 2, 2006 Don, I'm glad you had a plan going into the onc's office today and think it's the best thing to take the proactive stance you are with this. I absolutely wish you all the best with this. Please take care and keep us posted. Cindy Quote Link to comment Share on other sites More sharing options...
blaze100 Posted March 2, 2006 Share Posted March 2, 2006 Don, I'm sorry the news was not better. It sounds like the cyberknife is an excellent option, I don't understand how it works exactly, so will be very interested in reading your experiences. You are in my prayers tonight for a good MRI. Barb Quote Link to comment Share on other sites More sharing options...
Sheri Posted March 2, 2006 Share Posted March 2, 2006 Thanks Don for keeping us updated. I'm so glad you are knowledgable and can direct the team. We are our own best advocates. If you don't take care of you, who will? I'm sorry about the news, you've been through so much. But I'm glad you're smart and you can make the best decisions for yourself. Sounds like you have a great laid plan. Let us know how it goes Quote Link to comment Share on other sites More sharing options...
Kaffie Posted March 2, 2006 Share Posted March 2, 2006 Don, Your knowledge and understanding of all you are reading is amazing. If any one can beat this, you can. Your attitude and determination is an inspiration to us all. You are right, cancer does teach us compassion for others and you are a perfect example. Kathy Quote Link to comment Share on other sites More sharing options...
hollyanne Posted March 2, 2006 Share Posted March 2, 2006 Don - It is apparent that you take every step as a fight for your life which is fantastic. Your knowledge and perseverance is so admirable...I have great faith that you will deal with whatever you find out. My prayers are for a very positive outcome and for peace of mind for you -- take the Xanax...it will get you through the next days until you know exactly what you are dealing with. I have the utmost respect for you and your amazing spirit. All my love, Holly Quote Link to comment Share on other sites More sharing options...
gail Posted March 2, 2006 Share Posted March 2, 2006 Hey Don-- concerning Bernie Siegel-- I read that book with the first cancer, and it was in the middle of the book that I decided I would be all right. When the second one came, I bought the book on tape, and every other one I ordered through the library. I also ordered some of his mediation tapes, and had one on the entire time in pre-op. To this day his voice calms me With the third cancer, I meditated every day for a month after surgery. With my last doctor's visit coming up, I pulled his book out on tape and listened again. Instant calm. Works for me gail Quote Link to comment Share on other sites More sharing options...
KarHart Posted March 2, 2006 Share Posted March 2, 2006 Don, I am very impressed with your plan. We had looked into cyberknife when Ken only had one liver tumor. In retrospect I wish we had gone that route instead of the liver resection. It was such a major, painful surgery. I think if we had done the CK and chemo right away maybe things would be better, but no point in second guessing now. I really hope this works for you if the PET is positive. Good Luck! Quote Link to comment Share on other sites More sharing options...
trish2418 Posted March 2, 2006 Share Posted March 2, 2006 Don Good luck with CK -- hope all goes well. Trish Quote Link to comment Share on other sites More sharing options...
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