cindy0519

Welcome! I too am fairly new to this board. But the amount of knowledge and support to found here is truly inspirational! Again welcome! Cindy

Kasey, I AGREE 500% with your statement "There must be another facility available - even if it is a drive to get there. Get there and fast". My trouble (both pratically and emotionally)is that I am not sure that Dad is there yet! I think he is beginning to get there but not sure he is completely sold on the need for another opinion yet. And until he says "GO" nothing I can do will matter. I have contact information for 3 oncologist at MD Anderson who specialize in lung cancer (from a patient at MD Anderson) and am at the ready to get the appointment set up, tickets purchased and make the journey...but I gotta have Dad too . Anyone have any advice? I really want to respect his wishes but when do I say enough is enough? Stuggling for sure, Cindy

Well Dad had now been to his primary care physician and back for a post radiation check up with the radiologist oncologist. He had a bit of an infection in his tear duct and has had some issues with rashes that mysteriously come and go on various body parts, so he finaly made an appointment with his primary care doctor. He has also had some swelling and rash in his scrotum that has been a bit concerning. (TMI -I know but was curious if anyone else experienced this) His primary Dr. is VERY concerned that nobody has really sat down and gone over treatment options (good/bad) with him and finds it hard to believe that the oncologist would just take a "wait and see" approach. Dad really thought that the radiologist oncologist would order another scan (based on the info from the medical oncologist at his Dec appt there) at his appointment yesterday. She (his primary dr) went over all his test results and helped him put together a list of ? to ask and told them that getting "good" medical care today requires being an informed patient and "really pushing" the medical team for answers!! She encouraged him to "raise hell" until his questions are answered and his is given some type of triggering even for chemo or a full blown treatment plan. She agreed that after seeing scan results -- she might release him to go back to work (32 hours/limited duty) and told him if the radiologist did not order a scan (and she said insist on PET) she wanted to be called and she would order the scn -- either way she didn't think it should wait until March when he is scheduled to go back to the medical oncologist. She told him to have the radiologist look at the scrotum issue as well. Yesterdays appointment with the radiologist oncologist was totally uneventful!!! (this is the first appt I have not flown to AZ for). Basically all he got was a "if it ain't broken, don't fix it" type of response and was informed that doing another scan at this point and time was not possible because insurance will only allow a PET every 6 months. The other areas (groin/hip/thigh) that have been untreated were discussed breifly when Dad raised a question about them .. but he was informed that due to internal organs in this area, they were not inclined to radiate this area until it was causing significant pain. And was informed to return to his primary care physician that she should handle whatever is going on with the scrotum. He said he got really mad and told the radiologist that he is feeling like he is being told "go home and die and when you are close to death we will see if we can do you in completely with chemo. Until then, enjoy life". He is going to call his primary Dr today and hopefully she will take on the insurance company regarding a new scan. I also asked him to "PLEASE" ask his primary to give him a refferal for a second opinion. Its one thing when I am uncomfortable with what the doctors are saying but when he feels all he is getting is a "death sentence" then it is TIME TO FIND ANOTHER DOCTOR! Sorry this is so long...really needed to vent! Hope everyone's New Year is off to a good start! Cindy

I am relatively new around here but have read several of your post and wanted to add my thoughts and prayers as well. And to say that your thoughts of wanting complete peace for your mom don't sound at all selfish or ungrateful to me...actually quite the opposite! You seem to be an incredibly strong and loving daughter/person! I pray that I have your strength and grace as our family continues to battle this disease. Peace be with your family! Cindy P.S. Your new blessing is beautiful! Cherish each moment for the slip away way to fast.

Wow! Thanks SOOO much for the overwhelming welcome! I am blown away by all the words of wisdom, advice, and support that you all have posted. I will post an update in the NSCLC section. Again, many thanks to all!

I wanted to add and forgot... Dad stuggled with exactly the same issue as your are pointing out during his "journey" to diagnosis. He was in immense pain and though they suspected lung cancer -- they could do nothing to treat the cancer or his pain (other than to medicate to mask the pain) until he had an offical diagnosis. Our family, lived in this HELL for almost 5 months and watched Dad slowly become more overcome by the pain each day. During this time I was in almost constant contact with his lung specialist who was gracious enough to talk with me and to reassure me that they were doing all they could to achieve a quick diagnosis. As he pointed out (numerous times ) they cannnot start treatment until they know what exactly they are treating. To begin a treatment with an offical diagnosis would likely be without benefit and may in fact even be harmful. I know waiting and watching your Dad in pain is hard! One suggestion I do have (Dad struggled with his) is this... encourage him to "really" tell the doctors honestly about his pain, ask for a stronger med if he needs it to control pain and not to be afraid to take the pain med's as precribed (if he is in pain he will not become addicited!). Dad was really afraid of the Morphine and we had a hard time controlling his pain because he would not take the med's on a timely basis. His Morphine was an extended release Morphine and it took awhile to act, so if he waited until the pain was really bad bad the time the Morphine started to work he was overcome with pain. Hopefully the will reach a diagnosis quickly and can move on to things that really will help to relieve your Dad's pain and not just mask it.

Bobby, My Dad was iinally "offically" diagnosed in mid October. He started on with various forms of testing in June. He had the usual chest ray, CAT scan, MRI, bone scan, a bronchioscope which provided inconclusive results, and then a fine needle biospy which collapsed his lung so he was hospitalized for 3 days -- only to get an "inconclusive" result and was followed by a PET scan which revealed exactly what areas of his body were infected with the cancer. Shortly after the PET a very talented radiologist was able to get a good biospy from the tumor in the hummeral head and we got the diagnosis we had all been knowing we would hear but had been praying was not would we would hear. As far as physical changes for my Dad, thus far the have run the gamit I think, before radiation and surgery to stablize the shoulder, he was racked with pain and unable to do much other than medicate and sleep quite fitfully for short periods of time, he had no desire to eat and we were doing good to get one protein shake a day into him. This period was VERY difficult for him! He had a hard time with the fact that he was in such immense pain from the shoulder and all the doctors seemed concerned about was his lung which was causing him no pain. It was extremely hard to watch him go from the active, vibrant man who could cut off his arm and continue to work -- into a man who was phyically unable to tolerate the amount of pain he was in,even with Morphine! Since the surgery and radition he has become much more like himself, he is now back to eating normal sized and frequency of meals, is more active and as I indicated before is now only using pain med's on occassion. He feels so good now he thinks he is ready to go back to work (he is a heavy duty mechanic). From mid October to his appointment last week he has lost a total of 15lbs, his weight continues to steadily drop but he looks good now, feels great and seems to be more of his "old self" right now. I wish I could give you the answers you are searching for. I truly do know the pain and stuggle you are feeling and pray that you too find peace with all of this!! Please keep us up to date and ask all the questions you want/need to to help make sense of all this. Cindy

Thank you everyone for the welcomes and words of wisdom. Its really great to see that others are going through many of the same things! ...Thank you for sharing your experiences so openly so that we can all learn from them! I have been going to all of Dad's oncologist appointments regarding treatment plans (he is in Arizona and I am in Ohio - so I have been flying out for the dr appointments, surgery etc.)and he has told the Dr. that he may discuss treatment with his children - though this particular doctor is very reluctant to do so. The biggest issue I think I have will all of this is that the Dr. doesn't respond to my questions or concerns other than to say "he is not dying today you know" (which I find really quite distasteful)and still has not "dicussed" treatment options with us -- he simply comes into the room, makes an announcement of his treatment choice, makes his standard "he is not dying today" comment when I ask questions and sends us on our way with more questions unanswered/unasked than answered. Dad however is very comfortable with this Dr. (he is much like my Dad so his approach to things "fits" well with my Dad if that makes any sense -- both are gruff, cranky old men ) so I really need to figure out a way to find some peace with all that is happening and the choices that are being made because at this point Dad does not want to look into seeking an additional opinion. He has graciously listened to my concerns and constant chatter about treatment and some of the fantastic results (and in fairness the sickness and progression that others might have) that some patients have had with various drugs but remains steadfast that he wishes to remain with the "wait and see" approach until March. At that time if the oncologist is not more forthcoming with information Dad says he will "consider" seeking another opinion. My gut tells me that ultimately my Dad's wishes to choose "the path less traveled" and is still struggling with making/committing to this decision, as he "thinks" that our family wants him to have treatment. We have had multiple discussions about what he wants and each time it seems to change (of course dependant on how he feels at the time I think)but I have several times told him that we want him to do what is right for him and that regardless of what that is we will be there to support and love him! I have told him that we "want" him to do chemo (or other treatments for that matter) because he has made that choice and believes that it will help him to feel better (and maybe fight the cancer) not because he "thinks we want him to do it". The very last thing we all want is for him to be sick and misserable only because he thinks that is what we "want" him to do. Ok -- more rambling ---I'm SO sorry! but boy does it feel good to do ! Thanks for listening and again thanks for all the great welcomes! Cindy

bobby22: My dad was recently diagnosed with Stage IV LC with mets to the bone. He too was in considerable pain -his hummeral head was almost erroded away and the humerous had a pathologic fracture as a result of the cancer. He had a sugerical procedure to place a rod and nails into the arm to stablize it and then followed after healing with radiation. The radiation made a world of difference (from Morphine to pretty much no pain med's post radiation)! As far as prognosis goes -- we to wonder about this. It seems to sort of be the "unspoken" when we go to see the doctors. They (the doc's) don't volunteer information about prognosis (other than to say that it is not curable) and we haven't been brave enough to ask . Sometimes I think knowing would be better, then there are times when I am thankful that we don't know for sure. At this point, we take one day at a time and are thankful for the good days and pray that the bad days will pass quickly and without much event. The best advice I can give you, with my limited experience, is to live for today and spend as much time as you can enjoying being together - and try not to worry too much about what terrible thing(s) tommorow might hold. We truly never know how much time we have -- even without cancer being a factor! Talk to the doctors about prognosis if you really want to know. They may give you an idea -- but each person and situation is different so they may not be 100% correct. I'll keep you and your Dad in my prayers -- God Bless! Cindy

My father (age 65) was recently (mid-October)diagnosed with sqaumous cell non small cell lung cancer with mets to his hummeral head, the lymph nodes of the chest, the abdomen and pelvic and a small spot on his right thigh. Our "journey" toward this diagnosis began in June when he began having pain in his shoulder and was unable to pull back a bow as he was preparing for an bow hunting trip he and my brother were scheduled to take in the mid Sept. It was a LONG tedious journey to this diagnosis and sadly it appears that our true "journey" is just beginning! At the end of Oct Dad had surgery to stablize his shoulder which had a pathological fracture and a good portion of the hummeral head missing due to the cancer in this area. He also began 5 weeks of radiation to the tumor in the right lung and surrounding lymph nodes during this time and after healing from the surgery 2 weeks of radiation to the hummeral head was also completed. The radiation has been a HUGE success from a pain relief standpoint! Prior to the radiation the pain was so immense that Dad had progressed to having to take Morphine twice daily to get any pain relief. At this time he is no longer taking any Morphine, only an occassional Percoset. He had relatively no bad side effects from the radiation other than a rash that seems to come and go as it pleases. We were scheduled to go back to the medical oncologist last week to discuss chemo treatments but rather than this discussion we were suprized to hear the oncologist say that his recommendation is "no chemo at this time". His advice is to wait until something else "pops up" (and in his words ...it will)and then discuss chemo. Of course since Dad wasn't thrilled with the possiblity of having to face chemo treatment (not like anyone is) he is thrilled with this decision. I find myself in constant struggle with this recommendation daily! Walking the line between my understanding and wanting to repect Dad's wishes,specifically that quality of life be maintain above all else, while struggling to ensure that he recieves the best medical care possible so that he might also have quantity of life as well as quality is a constant internal battle for me! I have to constantly remind myself that while I might personally choose to battle this disease in more agressive manner and seek the advice/input of multiple doctors --it is my Dad who has this disease and he who must make the choices that best suit him. Sorry for writing a book as an "intro", I find that this has so deeply affected our family that it is difficult for me to talk about in a short and simple manner. I look forward to sharing our "journey" and learning from everyone here. Cindy