lynne Posted December 10, 2003 Share Posted December 10, 2003 Dean has been having chest pain for months, but on Sunday morning and early early Monday morning he had a 'different kind' of chest pain. He had been given Nitro by the onocologist a month or so ago to take for chest pain to see if it might be cardiac related but he had never taken it because he just did not think it was. Well, Sunday, the pain was different, so he took one. It stopped the pain....Then at 5am Monday, the pain started again....again it was relieved by the Nitro. He called the doctor on Monday. They have set him up with a cardiologist for Friday. Today, Dean and I saw the radiation doctor. They are starting radiation therapy this Thursday.. He will have it monday through Friday, for 7 to 71/2 weeks because the tumors are no longer responding to the chemo the way they want it to. The area they will be radiating is very large...the entire chest sternum area...and rib cage. He said it would "kill' the cancer or hopefully kill it..., but that adenocarcinoma is notorious for moving to bones, brain or liver. He wants to do an MRI to make sure that the brain is clear. He said that a CT of the brain is really not sufficient...that you really need an MRI of the brain to be certain. A PET scan of the brain is not as good as an MRI because the brain using glucose to work anyway, so it would be inconclusive. Not sure when they will do the MRI. He starts the radiation on Thursday morning, along with chemo on the same day. The chemo will now be smaller doses every Thursday instead of large doses every 3 weeks. He said the radiation can only be done once....if it works, wonderful..if not, that is it. He also said it would damage the heart.....but we would not notice any damage for possibly 5 years...then added something to the effect that we would probably not have to worry about the heart damage. He then said that lung cancer has less than a 5% survival rate for five years. He was note ven encouraging for 5 years...that is for patients whose lung cancer is caught much earlier than Dean's. He said it would not "cure" him...that lung cancer is just not a good cancer and they really cannot do alot,especially when it is this extensive. Dean left there very very down....so did I.....We had hopes that the radiation would really do the trick....now we know that it will only buy us some time....which we had already been told,...but did not want to believe. He said it would also do damage to the trachea, esophagus..etc. ..but we don't have a choice. The lymph nodes around the trachea and esophagus are already extensive and big..and causing pressure on them already. If we don't try this, they will continue to grow and shut down the trachea and Dean will suffocate to death. He showed us the ct pictures and showed us the lymph nodes....trachea..etc. and how they are surronded. It looked like the trachea and esophagus were a small pipe in the middle of a rock pile....for lack of a different way to describe it. We have no choice but to do radiation..... Lynne Quote Link to comment Share on other sites More sharing options...
Hebbie Posted December 10, 2003 Share Posted December 10, 2003 It sounds to me like it is time to seek out a more compasionate doctor. I could say more about your doctor's attitude, but it probably wouldn't be very nice..... I will ask this: Is he a LUNG cancer specialist or just a general oncologist? There truly is a difference! Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted December 10, 2003 Share Posted December 10, 2003 ((Lynne)) I am so sorry to hear this about Dean. You will both be in my prayers. I have to agree with Hebbie on this also. You don't want your Dr. to lie to you but you do want them to have some compassion. I was telling my Rad. Dr. about this board and how some Dr.s say you have x amount of time. His answer was "How can they say that, they aren't God". I agree with him. They are not God and they don't know. A best guess is all they can offer. Please keep your chins up, alot of people are rooting for you both! God Bless, MO Quote Link to comment Share on other sites More sharing options...
beckyg Posted December 10, 2003 Share Posted December 10, 2003 I echo Heather on that doctor. Shame on him for his lousy attitude. I appreciate that he did talk to you about the risks for long-term damage--mine radiation oncologist made a big deal about the short term effects on my esophagus and on my skin but didn't say anything about what it could do to me months after treatment ended. That said, some people have had amazing responses from radiation--don't let yourselves get too down. Becky Quote Link to comment Share on other sites More sharing options...
Guest canuckwebgrrl Posted December 10, 2003 Share Posted December 10, 2003 I agree with above posts. Dean should have a Dr. he feels comfortable with, and you both don't seem comfortable with your present Dr. Those statistics are so outdated, so don't let math get you down! Quote Link to comment Share on other sites More sharing options...
karen335 Posted December 11, 2003 Share Posted December 11, 2003 Lynne, Everyone is right, maybe you should find a new doctor. Just to let you know. I had chemo and radiation at the same time. I had 38 radiation treatments and 8 weekly treatments of Taxol/carboplatin. I don't know how larger Dean's tumor is, but I was diagnosed with a 17cm tumor. That was in March 03. I had a broncocopy on 10-16-03, Pulmonary doc could not find tumor and biopsy came back negative for cancer. Have you asked about Taxol/Carboplatin, it is supposed to be 1st line of treatment. There is hope out there and don't let a doctor tell you different. They are not God. My #1 physician was Jesus. I truly believe that. Keep the faith and believe. Hang in there and praying for both of you... God Bless Karen Quote Link to comment Share on other sites More sharing options...
lynne Posted December 11, 2003 Author Share Posted December 11, 2003 Thank you all for the suggestions and support. I may have given you all the wrong impression of this doctor. Dean and I both really liked him....despite what he had to say. He was very straight forward and honest. He spent over an hour just talking to us. He did add that everyday there are new advances....that only God knows when our time is up...but that we did need to know what could/might happen. He said in 20 years they would look back on the treatments today and say we were very archaic! That there were many roads to improvement to make! Dean and I both like people to be honest..not sugar coat things. We want to know what we MIGHT have to face....but we both know that could also NOT happen. We are in much better spirits. In fact, Dean just called me on the phone about 10 minutes ago. He was very up....said the chemo and radiation both went very well. He was through by noon with both. Said he felt really good! He is meeting our grown daughter for lunch at a Japanese restaurant for lunch today. We both have a VERY strong faith ....we know only God has the answers..but we also want to know what we might be faced with while doing chemo and radiation...we both want to know what kind of odds we are facing...THEN when we beat the odds...we will feel even that much happier...if we don't beat the odds...well,....we will face that if/when it happens. Lynne Quote Link to comment Share on other sites More sharing options...
Bonnie Posted December 11, 2003 Share Posted December 11, 2003 Lynne, Run, don't walk to another doctor! Again, shame on that doctor for being so negative! Maybe he needs to find another line of work. There is always hope and success. My husband, Howard, had a 6.5 cm tumor and went through the treatments, radiation and chemo, and is back working full-time. He is doing great. Yes, we have good days and bad days, but overall the good days out number the bad ones. May God bless you and your family. Bonnie and Howard Quote Link to comment Share on other sites More sharing options...
bobmc Posted December 11, 2003 Share Posted December 11, 2003 Hi Lynne; My heart goes out to ya, you two got alot on your plate, so very sorry Dean is having to go through this. My only thoughts are that regardless of the dr. , I still would seek a second opinion. It's just a smart thing to do. There may be alternatives, trials, new technology in radiation that your present doc is unaware of. I know MD Anderson's in Texas, you might want to try them. It may not change anything but I'm sure it will provide you with additional comfort. In any case you'll both be in my thoughts and prayers. God bless and be well Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01 " absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
Carleen Posted December 11, 2003 Share Posted December 11, 2003 Hi Lynne, Although you and Dean like your Doctor, I am a strong supporter of second, third, fourth, tenth opinions. There is so many different philosopies on treatment, and more minds are better than one. My husband and I are currently seeing a doctor regularly, but we are also doing online and mail consultations with two other doctors. Our doctor is receptive to any other opinions, because as he says, it isn't a matter of ego it is a matter of life. Another doctor out there might have some more encouraging ideas. I will be praying for you both, and hold you in my daily thoughts and talks with God. Carleen Quote Link to comment Share on other sites More sharing options...
lynne Posted December 12, 2003 Author Share Posted December 12, 2003 Dean is feeling much better...day by day since he got out of the hospital he is stronger. He was up to going Christmas shopping last night! We have had second and third opinions. We went to Dallas and saw a thoracic surgeon and onocologist there. Same treatments recommended...same theory on not being able to do surgery. Dean is on Taxotere and Carboplatin. He had an allergic reaction to the Taxol so they had to switch him to the Taxotere. Our onocology center works a great deal with MD Anderson. They do testing of new drug therapy. Charles (the person in research and testing) keeps abreast of new therapies, etc. We talk to him all the time! We are still hopeful....Dean said he is not planning on checking out anytime soon! He is shooting for breaking the 5 year survival record! We are ok...and holding our own! Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted December 12, 2003 Share Posted December 12, 2003 Good luck today with the radiation. I'll keep you in my prayers. MaryAnn Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted December 12, 2003 Share Posted December 12, 2003 Lynne, You and Dean are in my prayers. God Bless, MO Quote Link to comment Share on other sites More sharing options...
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