didier Posted February 7, 2004 Share Posted February 7, 2004 Hi everyone. Things pretty much suck for me. Last Friday my Dad was diagnosed, by way of CT scan and bronchoscopy, with sclc. I don't know at this point what stage it is. He had an MRI tonight and is scheduled for a PET scan next Wednesday. He sees his oncologist the following Monday (ten days from now). I hate waiting. I just completed seven months of treatment with my Mom who was diagnosed with stage IV oral cancer last Spring. Now this. At times like this, minutes can feel like days. As if all of this isn't enough, cancer took the life of a very dear family member earlier this week. I'm walking around in disbelief. The one good thing is that my Mom is recovering relatively well. Her CT scans came back today looking good, so I've got that going for me. On the flipside, I've got my Dad's illness seriously messing with my head. He's a 60 year smoker so I am beyond scared. This is such a nightmare. I don't have to tell any of you that though. I just don't know what to expect. My fear is that my Dad may not seek treatment. I think he is waiting to see how extensive it is before he decides what to do. I suggested he see my Mom's doctors, who would have seen him immediately, but he has decided to stay put at the hospital where he was diagnosed and wait it out for his next appointment with the oncologist. My only concern is that this doctor just completed her fellowship. Granted she did so from what I have read is a good institution (Sloan Kettering), but I was hoping he would see the doc my Mom goes to because this guy has been dealing with cancer for quite a number of years. He's kind of stubborn, my Dad. I realize this is hard for him psychologically and physically, but I don't sense urgency in him. I, on the other hand, am giving him names of experts, trying to expedite appointments with doctors, etc -- but he doesn't seem very interested...although he did ask me about some of the various chemo drugs that I became familiar with as a result of my Mom's illness. They appear to be pretty much the same: Carboplatin, Taxol, Iressa. He was curious about the side effects and whether or not he'd be able to drive himself for treatment, etc. He is very independent, and I don't want to step on his feet, but I'd like to do as much as I can to help. Well, that's my story. Quote Link to comment Share on other sites More sharing options...
karenl Posted February 7, 2004 Share Posted February 7, 2004 Whatever stage your father is diagnosed at, the word "cancer" strikes fear in the heart of all of us. I don't think I was anymore terrified after my mum's final staging than I had been at the beginning when we were only aware of the primary tumour. And it must be hard for you to be in this position again, after supporting your mother through her battle. Know that everyone on this board has been where you are, and will help in any way that we can. Hoping for the best for your dad and you. Karen Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted February 7, 2004 Share Posted February 7, 2004 Welcome to our little place here. I'm sorry you had to seek us out, but VERY glad you found us. This is a special place with special people. Since you've been through some of this with your Mom you already know the rollercoaster ride this can be. And you know, while the waiting is hard, how important an accurate diagnosis is. So hang in there with all that. The questions will get answered. The one thing I can say here that I understand your Dad's feelings right now. He's facing one of the toughest decisions in his life. If he's anything like me he'll need his time with himself to make that decsion. I know I did and I will be forever grateful to my family for giving me that time. I know it was hard for my wife and daughter, but they loved me enough to do it. So give your Dad the information you have, let him know how you feel him and about what is happing, then give him the time and space he needs. He'll appreciate it, believe me. Many prayers for you and your Dad. Dean Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 7, 2004 Share Posted February 7, 2004 Glad you are here. Keep us posted. And keep supporting your dad the way you have. Usually, it is not a good idea of drive oneself for chemo treatments because of side effects. Also, if your dad takes meds for pain, that is another reason not to drive. Be patient with your dad -- he all of a sudden is not the problem solver, and some of his independence has disappeared. It will take him a while to be receptive to help. Good luck. Don Quote Link to comment Share on other sites More sharing options...
David P Posted February 9, 2004 Share Posted February 9, 2004 Hey didier. Sounds like you have a lot on your plate right now, and I know it also sounds like there's not much time to be patient, but if your father is as stubborn as you say, there's not much you can do to speed things up and keep a good relationship with him. Let things fall into place. It's great to hear your mother is doing well. Take care. David P. Quote Link to comment Share on other sites More sharing options...
paddy Posted February 9, 2004 Share Posted February 9, 2004 Welcome! I can't help you much either I'm afraid, however I am sure there are others on the board who will be able to. Waiting is so hard, it gives our minds so much time to imagine the very worst. Just wait until you get all the facts together and you may find it is not as bad as you think it is. Paddy Quote Link to comment Share on other sites More sharing options...
JenniferB Posted February 9, 2004 Share Posted February 9, 2004 I'm sorry you are going through this terrible time. The inital diagnosis was the worst part for me. I was so terrified, didn't know what to do. My mother was very independent and was determined to beat it. Since your father is very independent also, you need to give this to him. I would go to the doctor with him, only as support and to hear what the doctor has to say. My mother reacted very well to chemo, she actually felt better on it. She was able to drive herself, I just always made her promise if she didn't feel up to doing things herself, then she would call on me for help. Just follow up with the doctor, find out how extensive this cancer is, and stay on top of it. SCLC is very agressive and spreads very quickly. My mother fought it will all her might and I enjoyed all the time I got to spend with her. I'll pray for you and your family. Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted February 9, 2004 Share Posted February 9, 2004 gosh can i relate. my mom died 6 months ago of NSCLC and my dad was just dx. on 1/21 with SCLC. I am living in the nightmare with you. Quote Link to comment Share on other sites More sharing options...
didier Posted February 12, 2004 Author Share Posted February 12, 2004 I thank you all for responding. Yes, this is without question the most difficult time of my life. Met with the doc today, and from the way she was talking it sounds like extensive stage to me. She hesitated to answer where it's staged pending the radiologist take on things, although she did say that she saw the PET scan. The doc made it sound that we had about eight months. This is hard for me to comprehend. When I look at my Dad, he looks fine. With the exception of a periodic hacking cough, and evidently he is frequently tired, he seems fine. It appears he is willing to move forward with treatment, which I am happy about, but it appears the outlook is grim. I just don't get it. This sucks. Sorry for my bitching. I hope you guys are doing well. Thanks again for your input and for listening to me rant. Best wishes. My thoughts and prayers are with you all. D Quote Link to comment Share on other sites More sharing options...
Snowflake Posted February 12, 2004 Share Posted February 12, 2004 D., Welcome to the board, first off. Secondly - see if you can work with BOTH doctors for your dad. The one your mother is seeing has "tried and true" methods and someon just out of a big hospital would have cutting edge. Try to get ideas from BOTH on your dad's treatment options... Hang on to your bloomers, this ride ain't for sissies... Becky Quote Link to comment Share on other sites More sharing options...
betplace Posted February 12, 2004 Share Posted February 12, 2004 Didier, If your onc is sending you to a radiologist, it is probably limited rather than extensive. From everything I have read, treatment for extensive is exclusively chemo, no radiation, no surgery as it has spread so much. Any radiation given would be pallitive only for specific mets that are causing excessive pain. Having said that, of course I am no oncologist, and don't know anything so could be completly off base. I only know that this disease really does suck and I am sorry your Dad has it, and I hope you can find some hope, help and comfort here with us as we chart our ways through the roller coaaster ride! Blessings Betty Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted February 12, 2004 Share Posted February 12, 2004 Didier, my mom also has sclc. Treatment can be a real bear, but sclc can be extremely responsive to chemo. Sclc moves very fast. Your dad can always change his mind about treatment if it doesn't go well. There are always exceptions to the rule. My mom is extensive stage, but will be getting radiation because she only has 2 sites and has had a very dramatic, positive response to chemo. That said, the chemo is very tough on her. She's really dreading the upcoming 5 weeks of radiation. But she's a fighter. The problem is, we have no crystal ball. There are options for treatment, but nobody knows which patients will respond and for how long. The way my mo looks at it, the name of the game is get into remission and wait for the next advance in treatment. A vaccine for sclc is in clinical trial right now. Best wishes to you both. Quote Link to comment Share on other sites More sharing options...
didier Posted February 13, 2004 Author Share Posted February 13, 2004 Well, its been confirmed that it's extensive sclc. Chemo begins in about 10 days. I've been in contact with my mom's oncologist and he tells me the treatment is the standard for this disease (Etoposide and Carboplatin). I spoke with my dad today and he sounded great. Upbeat and moving on with life. I wish I could do the same. I feel as though I've been hit by a truck. This poor guy is the one facing an ugly disease and I'm lost in space somewhere. Not sleeping, not eating. I'm trying to put it into perspective, honestly. I guess it makes sense to live and enjoy as much as one can because realistically none of us knows what tomorrow brings. I'm trying to force that into my thought process. I love my parents and I don't want them going anyhwere, or to suffer. Unfortunately I have no control over that, and I hate that. I've got to switch gears and get strong so that I can deal coherently with all of this, otherwise I'm not going to be helpful to anyone. Quote Link to comment Share on other sites More sharing options...
karenl Posted February 13, 2004 Share Posted February 13, 2004 Hey D The weeks following my mum's diagnosis were easily the hardest time I have ever gone through. It felt like the breath had been sucked out of me, and it was almost impossible to carry out the tasks of daily life - you know, like shopping, cooking dinner etc. It all seemed so pointless. But give yourself some time!! It takes a while for a cancer diagnosis to sink in, and even longer to learn how to live with it. And yes, your dad is the one who has the cancer, but it is definitely a family affair!!! As Becky says, it's a rough ride - when you need support, you know where to come!! All the best Karen Quote Link to comment Share on other sites More sharing options...
betplace Posted February 13, 2004 Share Posted February 13, 2004 Didier, I am soooo sorry! I was hoping for you. I am on Etoposide and Carboplatin on a 3 week cycle. If I can be of help just pm or email me, I will be glad to tell you my experiences and just be a listening ear for you. The whole thing can leave you reeling, I found that researching the disease helped put a face on my fear and I am more able to deal with it on a day to day basis. Ignore the statistics is the number one rule. Your Dad is not a statistic! Anyway, again sorry you have to be here, but welcome Blessings Betty Quote Link to comment Share on other sites More sharing options...
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