kimblanchard Posted June 10, 2003 Share Posted June 10, 2003 Hi, My boyfriend is very sick. We will find out his results of four biopsies this afternoon. I fear that he has cancer everywhere and that we wasted so much time. He felt ill over 2 months ago! He refused to see a doctor...he is the kind of person that would rather wait and see if he gets better. He finally went in early May and was told he had pnuemonia. He was given a strong antibiotic for ten days and it didn't do him any good. He then waited a few days to call the doctor. He went in and his doctor was concerned. He went immediately to the ER and had tests done and a cat scan. There was a big (4cm) white spot on the CT. He was sent to a pulmonary specialist (a few days later). The specialist ordered him to do 3 sputum cytology tests. Almost a week later he had a follow up appt. The tests came back negative but he was told that that doesn't mean anything (so why did they bother doing them!?!). His specialist setup an appt for a biopsy the following day (Thurs). My boyfriend wanted to go to a different hospital and they couldn't get him in until Monday! So we waited ANOTHER 4 days. He finally had the biopsies done yesterday and several more cat scans and x-rays. The doctor legally could not say anything until the tests come back but he said it is likely cancer and if so it is at least stage III. I have a really bad feeling that it is in his brain. He is really really sick. He has lost alot of wait and he is sweating profusely with really big temp swings (96 to over 103). I am so scared for him. I wish we had not waited so long but we were confident in his doctor and really felt that all he had was pnuemonia. He is so sick. Does anyone here have a similar situation with a positive ending...or at least some positive news? God forbid, if the cancer is everywhere is there an effective treatment? He is so young...he is only 50. This came on so suddenly. Any good news is greatly appreciated. Christina Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted June 10, 2003 Share Posted June 10, 2003 Christina, There are many people on here stage 4 living, fighting, and revocering from this disease. It is fightable even if it has spread, granted its a little more difficult and involved, but it is still fightable. Never give up hope, there are people in every stage who are survivors! Get an oncologist (if it is cancer) and get informed about his particular type, stage and then seek the best treatment, but your his advocate and he has to want to fight as well. This is the place to come for both of you, survivors and caregivers (like me) all are her for you. Its a tough road, but this board makes the road easier to take some times. Quote Link to comment Share on other sites More sharing options...
Donna G Posted June 10, 2003 Share Posted June 10, 2003 Christina , most of us have similiar stories. There is no accepted screaning for lung cancer so most of us had our cancer found when treatments for infection etc failed to "cure' our problem so our doctors ordered further studies. The good thing today is there is hope. There are many different chemotherapy drugs, new types of surgery as radiofrequency ablation and video assisted thorocotomies . This is a very scary time for you and your boyfriend. As others have said " Knowledge is power" The more we learn , the more we feel in control, and it eases the worry up some. Stay with us. We want to help. We are survivors. Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted June 10, 2003 Share Posted June 10, 2003 I can only reiterate what people have said here. Most people find out due to a cough or something along those lines. Let us know when you find out the results. you never know it may just be contained to the lung as of now. Not sure what gave the dr. a clue if it was it would be at stage III??? I mena i am sure they may be certain signs, but my dad had no clue he was at stage IV neither did his doctor at first without the tests. Quote Link to comment Share on other sites More sharing options...
Candy Posted June 10, 2003 Share Posted June 10, 2003 Christina, You can't let yourself feel guilty about that, you could second guess yourself forever. My husband went through 2 rounds of antibiotics before the doctor realized it wasn't pneumonia. By the time we got all the tests and actually got treatments set up he was so sick he could hardly shower himself. Now he is planting flowers and mowing the lawn. I have learned to not look back, and to live one day at a time. When I get too far into the future I really try to kick myself back into today. This nasty stuff gives that saying "one day at a time" a whole new meaning and significance. Good luck with all of this. I am thinking about you. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 10, 2003 Share Posted June 10, 2003 Christina, doctors are not perfect. They have to go with their experience and resources just like the rest of us. Unfortuantely, many cancers go a long way before symptoms show up. Your boyfriend is typically male in the wait and see department. We think we can outwait it. I have since gotten over that. As has been said, don't second guess now -- look forward to what you can do and will do. Plan ahead. Good luck, and keep in touch here. Lots of support. Don Quote Link to comment Share on other sites More sharing options...
Carleen Posted June 10, 2003 Share Posted June 10, 2003 Christina, I am praying that things are not what you are fearing. Please try not to get overcome with anxiety and fear of the "What if"s as we often call them. There is plenty of time to worry, when things happen. However, just know that there are successful treatments out there for all stages of lung cancer and all metasis. I haven't heard anything in your posts that sound like something that would make me think brain mets. However, if there are brain mets, they are quite often treatable. There is the gamma knife procedure that targets the tumor with a high degree of accuracy so it doesn't damage surrounding tissue, and has a high success rate of wiping out brain mets. Whole head radiation can treat multiple brain mets effectively. It only changes the treatment protocol the doctors use. All that means is that the doctors treat the brain mets then they go forward to treat the lungs, one problem at a time. Brain mets are not a death sentence, and really I have heard a lot of cases of people with them that have treated them, completely. Hang in there, and hold onto faith, Keep us posted, and come here to receive any incouragement, inspiration, support and information you need. Blessings, Carleen Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 11, 2003 Author Share Posted June 11, 2003 Hi, Yesterday we got more bad news. The doctor told him that if he doesn't seek treatment he has 3 to 6 months to live. The doctor said that there hasn't been much success in treating his condition. He was told that he is not a candidate for surgery that his cancer would not respond to radiation or chemo. He signed a DNR to have at home with us and his dr told him to get his will in order. I am still in shock but trying as hard as I can to stay positive. I found a really good oncologist in Valhalla at the Westchester Medical Center. He is a research doctor and he has broken some kind of federal law to distribute unapproved drugs to his patients (I feel that that is a good thing,,,I want a doctor with balls who will try anything for his patients). I gotta go, I'll check in later Christina Quote Link to comment Share on other sites More sharing options...
Carleen Posted June 11, 2003 Share Posted June 11, 2003 Christina, Fire that first doctor!!! I can't believe an oncologist would say something like that. He has NO WAY of knowing whether your father's cancer will respond to radiation or chemo!!!!!! There are people here who have stage IV LC with Mets to distant organs that are fighting this da_n disease and can win; my husband included. Find a doctor who is positive and a fighter. This doctor just sounds like he doesn't have the, you know whats, to try. It's a fight, but one worth fighting. Quote Link to comment Share on other sites More sharing options...
cathy Posted June 11, 2003 Share Posted June 11, 2003 Hi Christina. You are probably so overwhelmed with fear and devastation right now..Everyone here understands exactly how you feel so you have come to the right place..try to find out what type of LC it is and what stage and anything else you can find out from the doctor..Then you can come back to the boards and read about some of the survivors here, that are probably in the same situation as you and your boyfriend...Its so much easier to fight this awful disease when you educate yourself about it. So many questions can be answered here, I think you will be amazed..We are all in this together and here to support each other.Keep us informed.. Quote Link to comment Share on other sites More sharing options...
Fresca Posted June 11, 2003 Share Posted June 11, 2003 Christina- Like Carleen said, FIRE THAT DA*N DR!!! There is absolutely no WAY to tell whether or not a cancer can respond without trial. Find another ONC to deal with. Please don't let fear get in the way of the fight. Let your boyfriend know there is a way to fight everything. Get all the info you can. Look into trials, and nutrition etc. WHY is surgery not an option? Has it spread? My mom has stage four with mets to skin kidney and liver, and she is DOING GREAT TODAY!!!!!!! So, don't let them knock ya down. Please know that you have alot of new friends here PRAYING FOR YOU and YOUR BOYFRIEND!!!!!!!!!!! Rana Quote Link to comment Share on other sites More sharing options...
Carleen Posted June 11, 2003 Share Posted June 11, 2003 Christina, Just wanted to give you a success story to hold onto. If you get a chance, look in the good news forum for a post from Ginnyd & Earl. Earl had LC with metasis to the brain. He had a crainiotomy, he had a lobectomy on I think it was his right lung. And on 5/27 they announced that he is NED (NO EVIDENCE OF DISEASE). There are so many other stories like that here. SandyS, diagnosed in November with Small Cell LC, went through chemo and radiation and is now also NED. It CAN be done. Hang in there, and find a doctor with the same beliefs and who is willing to fight with you. Have faith!!! Quote Link to comment Share on other sites More sharing options...
MargoLubbers Posted June 12, 2003 Share Posted June 12, 2003 I agree that its time for a new doctor. When I was dx, my doctor said that I was stage 4 with a 20% chance to live 1 year, but she has known people with my stage to live 15 to 18 months. I decided to get a new doctor, one that has 3, 4 and 5 year survivors of this stage of NSCLC! I am also putting together a list of stage IIIB / IV NSCLC folks who are 2 years of more out from dx. If anyone would like to join this list, please give me a hollar! Thanks! Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 12, 2003 Author Share Posted June 12, 2003 Hi guys, I just got back from Chris' first appt. The dr was very nice but nothing other than getting a referral to a really good oncologist came out of this visit. In about an hour and a half from now I am taking him to the oncologist he was referred to and finally we will get some answers. He is so sick the doctor asked him if he was going to be ok...he was out of breath and he walks so slow. I am hopeful about this afternoons appt. The doctor who told us he has 3 to 6 is his primary care doctor. He openly told us that he hasn't had any training in lung cancer and the last he had heard any info on it was 18 years ago. Of course a lot has changed since then! Thanks for all of the encouraging stories. Margo, I would also be interested in talking to long term survivors of NSCLC. If you get in touch with any and they would be interested in contacting me please let me know. My email address is Christina871@yahoo.com. Christina Quote Link to comment Share on other sites More sharing options...
teresag Posted June 12, 2003 Share Posted June 12, 2003 Christina, you wondered why they did sputum cytology when the negative test was not meaningful. A good question; perhaps I can answer it. Sputum cytology, when it shows cancer cells, can be a non-invasive way of diagnosing cancer and determining the cell type of the cancer. This is the first step (in addition to staging) in deciding how to treat the disease. When the cells show up in the sample, therefore, it can be a sensitive test. Unfortunately, those nasty cancer cells don't always come up with the sputum sample, so there are lots of "false negatives." This is why the test is not useful when it's negative, but it is useful when it's positive. Hope that makes sense. Best wishes to you. And remember to take care of yourself, too. Quote Link to comment Share on other sites More sharing options...
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