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mandycat

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  1. I wanted to say thanks, I agree a second opinion seems in order. You have just given me the courage to move forward. My gut has been saying the lack of any follow-up to check for progress is making me uneasy (keeping in mind I have her PET scan that showed questionable findings in the right lung as well). This is a situation where I don't think too many tests would be considered unwarranted. I have just been doubting myself and haven't wanted to "rock the boat" too much. Aw baloney! I will be talking to my mom about this tonight. Thank you again!!!! Michele
  2. Thanks for replying, My mom had radiation planning CTs, I asked the technician if any evaluation of the Ca is done, she said no-the CT is limited and used for mapping the field. No other scans after chemo to present day. Could someone please help me with second opinion initiation? Do I call another oncologist and ask for a consult appt? How do I address this to the present oncologist? If I can get my mom to agree, I believe this is the appropriate course. She is no longer seeing the pulmonologist. No one (including the nurses or doc at time of port removal) said anything about her 94% ox saturation. Supposedly (according to online sources) this is "normal" for someone with emphysema I personally have felt this is too low, have encouraged her to resume oxygen but she insists she is o.k. My stepdad is there with her but having lost his previous wife to lung cancer, he prefers to stay off the side (he is convinced she is going to die). Other than that, I have found support and hope here with all of you along with guidance. Maybe a second opinion will bring answers and maybe some sleep at night for me. Thanks always, Michele
  3. Thank you again for your reply, We haven't had ANY tests to monitor progress. There have been no follow-up scans of any sort. The treatment planning CTs are nondiagnostic as I had asked, they are only used for marking the radiation field. PFT/VQ scans don't address lung Ca only lung capacity. This is what has been concerning me so much. I honestly like her oncologist he's a very nice man but when we discuss her situation, he says very little and answers only when I ask very specific questions. I am clueless on her progress, if any . She finished four rounds of chemo in Feb. and on to radiation after a six week "rest". No x-rays, scans etc. have been taken, just blood work assessing the usual RBC/WBC counts, CMP(kidney & liver function). I came to this site because I was becoming depressed. I have been by my mom's side since she was diagnosed, the rest of my family has gone on with life as usual. It has been difficult. My mom doesn't like to talk about her cancer, certainly wants no sympathy, just does what the doctors say, no questions. All of this puts me in a weird position as her advocate. I have not been able to understand why she hasn't had any follow-up scans so I asked. Unfortunately the onc. told me he will be doing a CT a few months after she finishes radiation, that means her first scan will be in August--her one year anniversary (what??). After reading so many profiles here, I am even more concerned. I have hope knowing there are so many survivors, but I somehow feel she is being neglected without work-ups. There are stones left unturned and I am uncomfortable with that. When I am in the onc's office asking questions I feel like a kid in the principals office or something. It's almost as if we are not talking about a life or death issue, just the flu and I am over-reacting. Not sure where to go from here... I'm glad you understand, thanks Michele
  4. Thank you again for your reply, We haven't had ANY tests to monitor progress. There have been no follow-up scans of any sort. The treatment planning CTs are nondiagnostic as I had asked, they are only used for marking the radiation field. PFT/VQ scans don't address lung Ca only lung capacity. This is what has been concerning me so much. I honestly like her oncologist he's a very nice man but when we discuss her situation, he says very little and answers only when I ask very specific questions. I am clueless on her progress, if any . She finished four rounds of chemo in Feb. and on to radiation after a six week "rest". No x-rays, scans etc. have been taken, just blood work assessing the usual RBC/WBC counts, CMP(kidney & liver function). I came to this site because I was becoming depressed. I have been by my mom's side since she was diagnosed, the rest of my family has gone on with life as usual. It has been difficult. My mom doesn't like to talk about her cancer, certainly wants no sympathy, just does what the doctors say, no questions. All of this puts me in a weird position as her advocate. I have not been able to understand why she hasn't had any follow-up scans so I asked. Unfortunately the onc. told me he will be doing a CT a few months after she finishes radiation, that means her first scan will be in August--her one year anniversary (what??). After reading so many profiles here, I am even more concerned. I have hope knowing there are so many survivors, but I somehow feel she is being neglected without work-ups. There are stones left unturned and I am uncomfortable with that. When I am in the onc's office asking questions I feel like a kid in the principals office or something. It's almost as if we are not talking about a life or death issue, just the flu and I am over-reacting. Not sure where to go from here... I'm glad you understand, thanks Michele
  5. Thank you for your reply, It seems part of the work-up for later stage nsclc includes an MRI, especially when there are symptoms. The onc has his own agenda. Finding out all of the other health concerns worries me a little, but my focus is getting rid of her menace. Early detection seems to be of utmost importance for reigning in the beast before it takes over. Sometimes I am strong and other times I worry so much about my mom. I agree it is a double edged sword, knowing too little vs. knowing too much. I did voice my concern to the onc to no avail. Since her dx in Aug of '07 we haven't had any follow-up images in any form and I want reassurance, am I being proactive or a worry wart? I hope your dad gets his scan and it is o.k. The headaches concern me too. Blessings to all, Michele
  6. Hi all! I accompanied my mom to her follow-up appt. today with the onc, first one since chemo completion in Feb. (she finished chemo and is now getting radiation). She has a cough presumably from radiation starting to irritate her throat(?) I asked about an MRI and his response to me was he prefers CTs (although she never had one of her head so far). Also his protocol doesn't include a head MRI and I quote "unless it's small cell because it likes to metastasize to the brain". I may be seeming paranoid but doesn't nsclc 'like to go there' too? Well, he did blood work and white counts were a little low, assuming side effect of radiation. He sent out for CMP to check on kidneys too. I have a hard time relaxing about things so I obtained her path reports, chest x-rays and PET scan will try to get CT scans soon. PET scan showed "suspicious" activity in her right hilar and aorticopulmonary window as well as a focal area of bronchiectasis in the right upper lobe that were also seen on CT. First time I've heard of these particular findings Thanks for letting me get that out, Blessings to you, Michele
  7. Hi again Patti! We have been very fortunate and have avoided flooding (fingers crossed) but we are close to the worst areas and always have to re-route due to street closings. I drive to Akron for my moms treatments, she is receiving hers through the Summa Health System at Akron City Hosp and the onc is across the street. I work for the Cleveland Clinic trascribing for Hillcrest and Euclid pathology, we interact with the main campus all the time, do you go to the main campus (downtown) for treatment? They are very good. A co-worker had treatment there a year ago and is now NED. What a small world Sometimes I don't know how my mom is doing all that she is. I notice positive attitudes, strong faith and determination are common factors here, my mom definitely qualifies. You all have given me strength vicariously and boy am I grateful. Hugs back, Michele
  8. Thanks Patti! It's a fine line for me to walk concerning her treatment. I want to remain proactive but I don't want her to think I'm over-stepping boundaries. My mom doesn't like to "bother" the docs. I know they do know what is best, it's just I have noticed continuity in others treatments and I don't want anything missed. I posted on the 'introduce yourself' page again but forgot to include a subject line (I'll get the hang of this!) and I wanted to include a few things about my mom that are a testament to her character. She lives with my stepdad who is 75 and has COPD, my 45 y/o brother with cerebral palsy, and raises my 5 y/o nephew who is in preschool. A lot of people need her, including me. By the way, I am a neighbor, I live in Eastlake Michele
  9. Hello all! Thank you for sharing with me. It never occurred to me her symptoms could be a chemo-related side effect. I think I am going to ask about having an MRI when mom and I go in for follow-up on Wednesday. I admit to being very antsy when things don't seem right to me, but I would rather err on the side of caution so I maybe should be more pushy? I noticed that many survivor stories have early detection of mets in common, I want my mom to be in this category. So I watch for any "blip" on the radar, sometimes I just can't be sure. I will say her oncologist has stayed positive throughout, never giving stats except positive ones, he just always seems so busy. Several things we were told concerning her treatment changed, not for the sake of changing course in treatment but rather that he forgets what he told us I will also use onctalk, what a valuable resource. Thanks again, Michele
  10. Thank you for all of your warm welcomes! My mom completed her first week of radiation, she expressed only feeling the need to suddenly take naps as her only side effect. She did sound a little hoarse, did anyone else experience this? I wanted to tell you a little more about my mom who has been such a trooper through this. She lives with my stepdad who is 75 and also has COPD, my 45 y/o brother who has cerebral palsy, and my 5 y/o nephew who is in pre-school. I have never appreciated her personal strength as much as I have now. She has given me a whole new perspective on life and never taking it for granted, I think cancer itself does that. My mom doesn't have a particularly sunny outlook on the situation, rather she is stubborn about it, but it works I'm rooting for her as well as all of you! Michele
  11. Hi all, Newbie here, just joined today. I hope my moms profile is showing up (trying to figure this out!) She was diagnosed last October with stage IIIa nsclc. She has had numerous tests, the usual battery, x-rays, CTs etc. but no MRI has been done. I mention this because before her dx she had vision problems and an odd head pain that radiated into her face. She went to an ophthalmologist and had dx of early glaucoma (according to her, luv my mom but she is really bad at remembering what docs say). She was given 2 different rx drops and seemed to be o.k. but of course the cancer dx came right after. Never sure if this was incidental or somehow related. She never mentioned this to the oncologist. Now to present, she has had one eye with redness in the corner, symptomless but a little concerning to me. Despite the fact that I worry easily, she hasn't had any scans of her head. I have been working on retrieving reports from various tests but I don't have the PET scan result. I have heard MRI scans are more sensitive in lesion detection. My question if I can articulate one, is when would an MRI be ordered? Does the doctor need to have suspicion before ordering this test? Thanking you in advance, Michele
  12. Hello everyone, I am Michele and I confess to lurking here for a long time I feel ready to participate. You all have helped me more than I can express, if only I had found you sooner I would have saved myself a lot of worry and tears. I had very little hope (statistics are a monster ). I am so glad I found you. A little background here, I have been driving 2 hours to every appointment/surgery/treatment you name it that my mom has had since her surgery in October so I can help her navigate her journey. I am a medical transcriptionist (believe it or not pathology!) trying to decipher medical jargon etc. but I was not expecting a crash course in lung cancer. But here I am, I find there are more questions than answers with the docs. Thank you for sharing your experiences to me this is more helpful than the bazillion websites I have visited trying to understand this, that or the other thing as the emotional aspect is 50% of what is going on at any one time. Looking forward to sharing with you! Michele
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