Lung cancer, refugee from H&N

denistd
denistd Member Posts: 597
Hello, I am posting here for the first time, was told today that I had lung cancer by the radiation oncologist at Hershey Medical Center. In 2009 I had chemo and radiation for laryngeal cancer. All check ups and scans since then were clear. In May I was hospitalized in my hometown hospital for an abnormal heart beat. The cat scan they did of my chest showed a 4mm lung nodule. I got a cd of the scan and showed it to the doctor on Hershey. He said it was nothing. On Monday I had my regular yearly scan and once again he said it was clear and the nodule had not changed. This morning he called to say that indeed I did have lung cancer. I know nothing more than he said they were arranging a biopsy and that if it was a new cancer it was in a very early stage, 1 he said. If it was from the laryngeal cancer then things would be different. I see that a few of the head and neck people are over here now in the same boat as me. Any advice, recommendations or just comments would be great. Denis
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Comments

  • z
    z Member Posts: 1,411 Member
    Denis
    Hello, Sorry you had to find us. I have had anal and lung cancer which were 2 seperate primarys, so my tx was chemo/rad for anal and surgery vats lower right lung removal for the lung. Both were squamous cell, but the lung had no hpv whereas, the anal did, so therefore not a met. Since you have follow up scans if it is a cancer, it would have been caught early.

    Until the biopsy, theres no way to tell if its cancer. It could be inflammation. I had a 5mm lung nodule, and had to have a follow up scan 3 months later and it was gone. I had a cold before the ct scan and ct scans pick up everything.

    Keep us posted. Lori
  • Puggle
    Puggle Member Posts: 88
    I'm also over here from the H&N boards...
    I'm a caregiver for my husband. He was diagnosed with H&N in June of 2011. At the time of his diagnosis they mentioned that they were also "watching" a spot on his right lung. He went through chemo (cisplatin) and rads and got the all clear in October. He did end up with some kidney damage and neuropathy from the chemo but they said he was NED.

    In January of 2012 when he went for his scan (CT w/o contrast because of the kidney issues) they said his throat was clear but it looked like the spot on his lung has grown. A fine needle biopsy came back positive for cancer. It was adenocarcinoma rather than the SCC that was in the throat so it was a second primary and not a spread from the throat. Doc said that was better because they could do surgery. If it has spread they would rely on chemo and radiation.

    He had VATS surgery in February and they removed middle and lower right lobes as well as numerous lymph nodes. Surgery went well except for some complications due to the existing kidney issues as well as some air leaks that took awhile to heal. The air leaks were probably due to adhesions that were existing from a car accident years ago. The issue with the kidneys was that they went into shock I guess from the surgery. He was feeling fine and drinking a lot of water after the surgery but wasn't producing any urine so his sodium levels went out of whack. Took a few days in ICU to get his system back to where it needed to be.

    The biopsy on the removed lymph nodes came back positive. There were trace cancer cells. The surgeon was surprised because the lymph nodes looked normal when he removed them so they weren't enlarged. Because of the lymph node involvement he was diagnosed as stage 3A. Once he recovered from the surgery, he was offered rads and chemo. After discussing with both doctors we elected to do rads and no chemo. The onco said they could monitor for kidney issues (we were leery about that because his kidney issues didn't start until after all 3 of his previous chemos) but they had no control over the neuropathy.

    He went through 5 weeks of rads on his lungs without too many issues. The radiation oncologist said that this would be a walk in the park compared to the H&N treatment and he was right. No skin burning, just some feelings of indigestion as well as feeling like there was a lump and the food wouldn't pass. Little bit of burning but again, nothing like the previous H&N rads.

    We just went for his 2nd scan post surgery/rads and he is NED! We're hoping that continues, but you know the drill as well... right now we're living in 90 day increments until the next scan.

    Sending positive thoughts and prayers your way for the biopsy. Hopefully they were wrong and it isn't cancer but if it is, it does sound like they caught it early. Please keep us posted.

    -- jc
  • denistd
    denistd Member Posts: 597
    Puggle said:

    I'm also over here from the H&N boards...
    I'm a caregiver for my husband. He was diagnosed with H&N in June of 2011. At the time of his diagnosis they mentioned that they were also "watching" a spot on his right lung. He went through chemo (cisplatin) and rads and got the all clear in October. He did end up with some kidney damage and neuropathy from the chemo but they said he was NED.

    In January of 2012 when he went for his scan (CT w/o contrast because of the kidney issues) they said his throat was clear but it looked like the spot on his lung has grown. A fine needle biopsy came back positive for cancer. It was adenocarcinoma rather than the SCC that was in the throat so it was a second primary and not a spread from the throat. Doc said that was better because they could do surgery. If it has spread they would rely on chemo and radiation.

    He had VATS surgery in February and they removed middle and lower right lobes as well as numerous lymph nodes. Surgery went well except for some complications due to the existing kidney issues as well as some air leaks that took awhile to heal. The air leaks were probably due to adhesions that were existing from a car accident years ago. The issue with the kidneys was that they went into shock I guess from the surgery. He was feeling fine and drinking a lot of water after the surgery but wasn't producing any urine so his sodium levels went out of whack. Took a few days in ICU to get his system back to where it needed to be.

    The biopsy on the removed lymph nodes came back positive. There were trace cancer cells. The surgeon was surprised because the lymph nodes looked normal when he removed them so they weren't enlarged. Because of the lymph node involvement he was diagnosed as stage 3A. Once he recovered from the surgery, he was offered rads and chemo. After discussing with both doctors we elected to do rads and no chemo. The onco said they could monitor for kidney issues (we were leery about that because his kidney issues didn't start until after all 3 of his previous chemos) but they had no control over the neuropathy.

    He went through 5 weeks of rads on his lungs without too many issues. The radiation oncologist said that this would be a walk in the park compared to the H&N treatment and he was right. No skin burning, just some feelings of indigestion as well as feeling like there was a lump and the food wouldn't pass. Little bit of burning but again, nothing like the previous H&N rads.

    We just went for his 2nd scan post surgery/rads and he is NED! We're hoping that continues, but you know the drill as well... right now we're living in 90 day increments until the next scan.

    Sending positive thoughts and prayers your way for the biopsy. Hopefully they were wrong and it isn't cancer but if it is, it does sound like they caught it early. Please keep us posted.

    -- jc

    Found out more about cancer in my lung today. It is the original nodule that was found in May. He missed it because it looked like the nodule had not grown, upon further review it has grown very, very, slightly and is classified as ground glass opacity. If anyone has any experience with this would love to hear it. Denis
  • denistd
    denistd Member Posts: 597
    denistd said:

    Found out more about cancer in my lung today. It is the original nodule that was found in May. He missed it because it looked like the nodule had not grown, upon further review it has grown very, very, slightly and is classified as ground glass opacity. If anyone has any experience with this would love to hear it. Denis

    Puggles
    I saw you had posted a friend invite and now I can't find it, can you do it again. I too have kidney damage from the cisplatin, have to have my creatinine checked every few months, no contrast on cat scans and only take tylenol for pain, all NSAID's are OK. Denis
  • Puggle
    Puggle Member Posts: 88
    denistd said:

    Puggles
    I saw you had posted a friend invite and now I can't find it, can you do it again. I too have kidney damage from the cisplatin, have to have my creatinine checked every few months, no contrast on cat scans and only take tylenol for pain, all NSAID's are OK. Denis

    I had to remove you from my friend list and then I added you again. Hope that works.

    No mention about the ground glass appearance from my husband's diagnosis. What type of biopsy are they going to do? They first tried a bronchoscopy which was done as an out patient under anesthesia but the nodule wasn't close enough to an airway to get to it. They took a bunch of samples from around the area but they were all negative.

    Then they did a fine needle biopsy. He was awake for that but he said it wasn't too bad except that he had to stay extremely still and he was still having mucus issues from the H&N treatment so that part was rough. That's the one that came back positive. The doctor was about 90% sure from the CT that it was cancerous but they needed to see if it was new or mets to figure out the treatment.

    Creatinine is hovering around 1.8 here down from the all time high of 4. Same with the tylenol and he must watch how much protein he takes in. Dr says no protein shakes ever again.

    Sending good thoughts and prayers your way for the biopsy.
  • denistd
    denistd Member Posts: 597
    Puggle said:

    I had to remove you from my friend list and then I added you again. Hope that works.

    No mention about the ground glass appearance from my husband's diagnosis. What type of biopsy are they going to do? They first tried a bronchoscopy which was done as an out patient under anesthesia but the nodule wasn't close enough to an airway to get to it. They took a bunch of samples from around the area but they were all negative.

    Then they did a fine needle biopsy. He was awake for that but he said it wasn't too bad except that he had to stay extremely still and he was still having mucus issues from the H&N treatment so that part was rough. That's the one that came back positive. The doctor was about 90% sure from the CT that it was cancerous but they needed to see if it was new or mets to figure out the treatment.

    Creatinine is hovering around 1.8 here down from the all time high of 4. Same with the tylenol and he must watch how much protein he takes in. Dr says no protein shakes ever again.

    Sending good thoughts and prayers your way for the biopsy.

    Creatinine
    The highest mine ever got was 2.09 last check was 1.59, did not know about the protein, glad I do now. Denis
  • dennycee
    dennycee Member Posts: 842
    Welcome to the LC section.
    Welcome to the LC section. So sorry to hear about this possible second primary but as z said, it's not cancer until the biopsy says its cancer. Did your doctor indicate why he thought it might be cancerous? The ground glass opacity can be a symptom of of other conditions as well. I am going to think positive thoughts your way that it is a simple infection. If it is cancer they can do a wedge or a lobectomy and you can be free of the lung cancer. If they do want to do surgery ask for the VATS. It is far less invasive and there is faster recovery time. Please let us know what happens.
  • ackack
    ackack Member Posts: 4
    denistd said:

    Creatinine
    The highest mine ever got was 2.09 last check was 1.59, did not know about the protein, glad I do now. Denis

    Creatinine
    My creatinine level was fine all through chemo and radiation (Feb/12 to July/12). In August my level was 3.3. Doctors were stumped because if it was the chemo that raised the level - it sure did take a long time. Last blood test - 2 weeks ago was down to 2.5. So slowly coming down. Am concerned - can I have chemo again. Currently cancer is stable.
  • dennycee
    dennycee Member Posts: 842
    ackack said:

    Creatinine
    My creatinine level was fine all through chemo and radiation (Feb/12 to July/12). In August my level was 3.3. Doctors were stumped because if it was the chemo that raised the level - it sure did take a long time. Last blood test - 2 weeks ago was down to 2.5. So slowly coming down. Am concerned - can I have chemo again. Currently cancer is stable.

    Hi
    Welcome to a wonderful supportive site. Creatinine was never something that was an issue for me. I had cisplatin and never had any kidney issues so I never thought to check it although they checked my levels I'm sure. So a round about way of saying maybe this is a good question for the oncologists who monitor the website at cancergrace.org.

    Would you let us know what they say? Honestly I cannot say this question has come up here in my memory. Thanks!
  • denistd
    denistd Member Posts: 597
    dennycee said:

    Welcome to the LC section.
    Welcome to the LC section. So sorry to hear about this possible second primary but as z said, it's not cancer until the biopsy says its cancer. Did your doctor indicate why he thought it might be cancerous? The ground glass opacity can be a symptom of of other conditions as well. I am going to think positive thoughts your way that it is a simple infection. If it is cancer they can do a wedge or a lobectomy and you can be free of the lung cancer. If they do want to do surgery ask for the VATS. It is far less invasive and there is faster recovery time. Please let us know what happens.

    Denny
    Will keep you informed Denny, procedure is at 6:30am tomorrow in Hershey (Penn State) will be there for 5 hours. Denis
  • dennycee
    dennycee Member Posts: 842
    denistd said:

    Denny
    Will keep you informed Denny, procedure is at 6:30am tomorrow in Hershey (Penn State) will be there for 5 hours. Denis

    You will be in my thoughts.
    So five hours in surgery, two to four hours in recovery. So you will be back on line and ready to report at 4 pm right? Sorry, my twisted sense of humor. Although I do look forward to your reply. Teaching hospitals are the best!
  • denistd
    denistd Member Posts: 597
    dennycee said:

    You will be in my thoughts.
    So five hours in surgery, two to four hours in recovery. So you will be back on line and ready to report at 4 pm right? Sorry, my twisted sense of humor. Although I do look forward to your reply. Teaching hospitals are the best!

    Biopsy
    Had my biopsy this morning, was a needle biopsy and quite painless although somewhat complicated, was in a CT scanner most of the time while it was running and showing the doc where to insert the needle. Won't know for a few days the results but he said the reason for moving quick on this is that they want to get at it while it's still tiny and early. I did have a sedative before the procedure and some stuff was used at the insert site. Got home and slept for while. My son got back from his 4 days of striped bass fishing in Montauk, that's his passion, he is in school to become a RN will be done in 8 months he brought some nice fillets home, know whats for dinner tomorrow. All in all not a trying day, just the effects of the sedation, will be hitting the sack soon. Denis
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    denistd said:

    Biopsy
    Had my biopsy this morning, was a needle biopsy and quite painless although somewhat complicated, was in a CT scanner most of the time while it was running and showing the doc where to insert the needle. Won't know for a few days the results but he said the reason for moving quick on this is that they want to get at it while it's still tiny and early. I did have a sedative before the procedure and some stuff was used at the insert site. Got home and slept for while. My son got back from his 4 days of striped bass fishing in Montauk, that's his passion, he is in school to become a RN will be done in 8 months he brought some nice fillets home, know whats for dinner tomorrow. All in all not a trying day, just the effects of the sedation, will be hitting the sack soon. Denis

    HI Denis..
    Just wanted you to know, keeping an eye and a prayer out for you my friend....

    Don't forget us over in H&N :)


    Tim
  • denistd
    denistd Member Posts: 597
    Tim6003 said:

    HI Denis..
    Just wanted you to know, keeping an eye and a prayer out for you my friend....

    Don't forget us over in H&N :)


    Tim

    Biopsy results
    Got the results of the biopsy done last Tuesday on the nodule in my lung. The doctor said that the results were inconclusive. Apparently I have had this nodule for a while but it grew slightly over the Summer, hence the biopsy. The nodule was identified as ground glass opacity and that can sometimes mimic cancer and can also be cancerous. Said we could do one of two things. Wait 6 months and do another scan or have it removed and be done with it. I decided to have it removed, he said that is what he would do if he had to make the choice. Not thrilled about more surgery but will ask about VATS whatever that is. Thanks for all of your help and encouragement, will keep you posted. Denis
  • dennycee
    dennycee Member Posts: 842
    denistd said:

    Biopsy results
    Got the results of the biopsy done last Tuesday on the nodule in my lung. The doctor said that the results were inconclusive. Apparently I have had this nodule for a while but it grew slightly over the Summer, hence the biopsy. The nodule was identified as ground glass opacity and that can sometimes mimic cancer and can also be cancerous. Said we could do one of two things. Wait 6 months and do another scan or have it removed and be done with it. I decided to have it removed, he said that is what he would do if he had to make the choice. Not thrilled about more surgery but will ask about VATS whatever that is. Thanks for all of your help and encouragement, will keep you posted. Denis

    VATS
    Hi, sounds like a good choice to have the surgery. VATS stands for video aided thoracotomy. They make an incision about two inches long, a miniture camera and tools are inserted and the surgery done. But I am thinking now that this may be one that they do as a bronchoscopy. I would be interested in learning more.
  • Puggle
    Puggle Member Posts: 88
    denistd said:

    Biopsy results
    Got the results of the biopsy done last Tuesday on the nodule in my lung. The doctor said that the results were inconclusive. Apparently I have had this nodule for a while but it grew slightly over the Summer, hence the biopsy. The nodule was identified as ground glass opacity and that can sometimes mimic cancer and can also be cancerous. Said we could do one of two things. Wait 6 months and do another scan or have it removed and be done with it. I decided to have it removed, he said that is what he would do if he had to make the choice. Not thrilled about more surgery but will ask about VATS whatever that is. Thanks for all of your help and encouragement, will keep you posted. Denis

    Biopsy
    Hi Denis,

    It's got to be tough to make a decision like that with the biopsy coming back inconclusive. At least with the surgery you'll know it's out of you and then they can probably do a better analysis so you know for sure if it was cancer or not.

    Agree with asking for VATS for the removal. You will get 3 2 inch incisions on your side rather than having them cut you from your ribs all the way around to your back for the regular surgery. Even though it's still major surgery it does have less recovery time. I mentioned above that my husband did have some issues with the surgery but keep in mind he went through the surgery less than 6 months after finishing the H&N chemo and rads. You know what that does to your body and I'm sure he wasn't totally recovered from that which caused some of his issues.

    Good luck and let us know when you are having your surgery.
  • denistd
    denistd Member Posts: 597
    Puggle said:

    Biopsy
    Hi Denis,

    It's got to be tough to make a decision like that with the biopsy coming back inconclusive. At least with the surgery you'll know it's out of you and then they can probably do a better analysis so you know for sure if it was cancer or not.

    Agree with asking for VATS for the removal. You will get 3 2 inch incisions on your side rather than having them cut you from your ribs all the way around to your back for the regular surgery. Even though it's still major surgery it does have less recovery time. I mentioned above that my husband did have some issues with the surgery but keep in mind he went through the surgery less than 6 months after finishing the H&N chemo and rads. You know what that does to your body and I'm sure he wasn't totally recovered from that which caused some of his issues.

    Good luck and let us know when you are having your surgery.

    Puggle
    Still waiting to hear from the thoracic guy. My Onc doctor said that I am in good shape, which I think I am, feel a lot better these days (physically) than I have in 5 years, no long lingering effects from the chemo or rads, except for a slightly dry mouth and the teeth loss. I live my life like anybody else my age, well, the old rock and roller still lurks, energy levels good etc. Will go with the Vats, hope it is at Hershey. Denis
  • ToBeGolden
    ToBeGolden Member Posts: 695
    Just Arrived From H&N
    Denis: Seen you often at H&N. I'm relatively new in this neighborhood. PET showed nodules suspicious of cancer. But I'm still holding onto a hope that it's pneumonia. Have lot of questions to ask, but I'll put them in my own thread. Very happy you told me that the biopsy was relatively painless; since one may very well be in my future. Glad you made a decision about your treatment. Decision and action is better than indecision (or the temporary waiting game I find myself in). Rick.
  • denistd
    denistd Member Posts: 597

    Just Arrived From H&N
    Denis: Seen you often at H&N. I'm relatively new in this neighborhood. PET showed nodules suspicious of cancer. But I'm still holding onto a hope that it's pneumonia. Have lot of questions to ask, but I'll put them in my own thread. Very happy you told me that the biopsy was relatively painless; since one may very well be in my future. Glad you made a decision about your treatment. Decision and action is better than indecision (or the temporary waiting game I find myself in). Rick.

    Decision
    Hi Rick, I have an appointment with the thoracic surgeon this Thursday at Penn State Hershey, am hoping for VATS surgery and still hoping it's not cancer. Hopefully no more beg negative surprises on Thursday. I think iy was me that turned you onto the lary life board in the UK. I still stop by there every now and then, some great people. Denis. Surprising how may musos on these discussion boards, lifestyle maybe?
  • denistd
    denistd Member Posts: 597
    denistd said:

    Decision
    Hi Rick, I have an appointment with the thoracic surgeon this Thursday at Penn State Hershey, am hoping for VATS surgery and still hoping it's not cancer. Hopefully no more beg negative surprises on Thursday. I think iy was me that turned you onto the lary life board in the UK. I still stop by there every now and then, some great people. Denis. Surprising how may musos on these discussion boards, lifestyle maybe?

    back from Hershey
    Met with the thoracic surgeon on Thursday (he's a professor no less)he thinks it's cancer bronchio something but explained that the biopsy could not rule out a benign lesion or inflammation. It is small (the needle missed the target at first attempt) it was interesting, he showed me the video of the biopsy and an enhanced scan. I could see the tumor, which he described as fluffy. Will be having vats, the tumor board met last evening and the doctor e-mailed me this morning, he said all was in agreement that a simple resection was the correct procedure. He was much more interested in my music and googled stuff about my bands after I left. When I got home I e-mailed him a couple of songs, one from one band and another from another band. He wants to know what music I want on in the OR when I go in, said anything but Billy Joel. They will biopsy again on Tuesday. Will let you all know. Denis