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Lung cancer, refugee from H&N

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

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

z's picture
z
Posts: 1267
Joined: May 2009

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's picture
Puggle
Posts: 88
Joined: Aug 2011

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's picture
denistd
Posts: 511
Joined: Apr 2009

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's picture
denistd
Posts: 511
Joined: Apr 2009

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's picture
Puggle
Posts: 88
Joined: Aug 2011

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's picture
denistd
Posts: 511
Joined: Apr 2009

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

ackack's picture
ackack
Posts: 4
Joined: Jan 2012

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
Posts: 685
Joined: Mar 2011

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!

dennycee
Posts: 685
Joined: Mar 2011

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.

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

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

dennycee
Posts: 685
Joined: Mar 2011

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's picture
denistd
Posts: 511
Joined: Apr 2009

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's picture
Tim6003
Posts: 1497
Joined: Nov 2011

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's picture
denistd
Posts: 511
Joined: Apr 2009

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
Posts: 685
Joined: Mar 2011

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's picture
Puggle
Posts: 88
Joined: Aug 2011

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's picture
denistd
Posts: 511
Joined: Apr 2009

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's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

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's picture
denistd
Posts: 511
Joined: Apr 2009

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's picture
denistd
Posts: 511
Joined: Apr 2009

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

dennycee
Posts: 685
Joined: Mar 2011

The dreaded double entry.

dennycee
Posts: 685
Joined: Mar 2011

Glad you had a great experience at Hershey. VATS resection is the least invasive way to go and since they are comfortable doing the surgery it is safe to figure that they are confident that there are no mets. There are, of course, no guarantees. Was the term your doctor used bronchioalveolar carcinoma (BAC)?

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

Yes that was the term he used, he said that's what he thinks. I feel confident with the team they have there. Naturally I am afraid, had some major anxiety today but my wife and son are great anti-depressents. he never mentioned mets and my other oncologists said that he did not think it was from my larynx. The thoracic guy said my hand problems and music were far more interesting than my lung

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Denis: You know that I am following you on a parallel road. However, my oncologist said my highly probable lung cancer was not curable. Presumably, mine are mets. I do have a number of new nodules. When you have recovered from your surgery, and if you are willing, please speculate what makes docs think of mets or no mets. I will use your (and any other discussion) to frame questions for my healthcare professionals.

Best wishes on your surgery. I know you are determined enough to overcome any new challenges thrown your way. Rick.

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

Will be only to glad to Rick, I too have been following your progress from HN and lary life. I am sorry to hear that the doc said it's not curable, but they have told a lot of people that, Soccerfreaks, Hondo etc. Keep the faith and keep rocking on. I will be taking my laptop in to the hospital with me. Denis

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Should have made this clear: Not curable does NOT mean not treatable. My cancer can be knocked down but not knocked out. So it's going to be a life-long battle, in a very literal sense. Rick.

Puggle's picture
Puggle
Posts: 88
Joined: Aug 2011

Hoping everything goes smoothly through your surgery.

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

Have to be at Hershey at 5:15am so early surgery. Here we go again. Denis

dennycee
Posts: 685
Joined: Mar 2011

After decades of working in and managing clubs my body stays on that schedule. I could give you wake up call. Lol! Will be thinking strong positive thoughts your way.

Puggle's picture
Puggle
Posts: 88
Joined: Aug 2011

Keep us posted as soon as you are able.

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

Well now we know, it was cancer, Dennis tit was what you said bronchioalveolar, they removed the little nodule, never got near the mass id, the doctor said all went well and don't need to see him for anther month then on 6 monthly schedules. had some A-Fib heart issues that were resolved by shocking the heart back into a normal rythym. Now just have to heal up. Sure is good to be home. He believes that no chemo or radiation is necessary, which is fine by me, good job I had a heart issue in May, that's when they found the little ctitter. So now we see. Denis

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Denis:
You know we are on similar paths. However, I am thinking of not having the biopsy (at least, not right away). Everyone is different, and thinks differently. But to my way of thinking: If there isn't going to be any treatment, why test?

I am going to live each day to the fullest, try to enjoy myself and bring a little joy to those around me. Knowledge of whether or not I have cancer won't change a thing.

By the way: this also means the fact that you know shouldn't change anything either. Just go out and get the most out of every day. In that way, we will be doing very much the same thing.
Rick.

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

Hey there Rick, tough crap to go through.Knowing or not knowing, you may be right that even if you know it makes no difference if no treatment is available, until it gets so rough you have to seek something. I, personally would get another opinion on it and go from there. As you know I am a transplanted old rock musician and I look at all of my old pals, most are gone. some from cancer, others from really bad life styles, so you are right in the context of enjoy every day. Good luck to you old lad.

dennycee
Posts: 685
Joined: Mar 2011

So stage one BAC, who'd a thought a heart problem would save their life. Unfortunately that's the way it is with the "lung thing". Most early stage lc are found by accident. Usually it's like mine, symptoms don't manifest till stage 4. Is that the way it works with head and neck cancers or are there early signs?

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I'll take a shot at answering this. I think most with Head & Neck cancers have some early warning signs. For me it was a hoarse voice, since my primary tumor was on the vocal cords. Others have a sore throat or trouble swallowing. Or a lump in their neck. Most patients go to the doctor for some symptom.

Also I thing the outcome for H&N as a group is better than for Lung Cancer. Nevertheless, the statistics for H&N as a group does not apply to certain individuals. Denis (for certain) and I ("highly suspicious for") have metastasis to the lung. So even though we had our H&N issues resolved, we are in a ship with other very advanced lung cancer patients.

I have had my larynx (vocal cords) removed. I use all three methods for restoring speech: electrolarynx ( a vibrator held to the neck or chin), a voice prosthesis (a one-way valve surgically implanted between the trachea and esophagus) and classic esophageal speech (swallowing air and burping to speak). For anyone facing the removal of the vocal cords the take away is: You will lose your ability to speak for 1 to 3 months, but you will regain functional speech with a little effort. Some will regain speech in less than 1 month.

I'm new to this board, and I am just starting to learn about lung cancer.

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

Had my six month CT last week for lung, doctor exclaimed "everything looks fantasic" then we all sat down at looked at the scan,she did not see anything, I did not see anything. It's been a year now since the VAts and it has flown by. Had the throat scoped in July and ENT said it's great, if it is the same next July he will consider the throat cancer cured. Denis

z's picture
z
Posts: 1267
Joined: May 2009

Thank you for letting us all know the great news!  We all need to hear the great news, and I wish you continued great news!  Lori

dennycee
Posts: 685
Joined: Mar 2011

Great news indeed.  Thanks for the update, good news is always welcome.  

denistd's picture
denistd
Posts: 511
Joined: Apr 2009

had my 6 month scan last week. All was clear, the little nodule is still 4 mm and there are no new ones, the rest of the scan area, from neck to pelvis show nothing remarkable. pulmo Oncologist said if scan is same in September I will go to a yearly schedule. See the ENT in July, if throat is same he will consider that cancer cured. By the  way Denny it was adeno carcinoma.

dennycee
Posts: 685
Joined: Mar 2011

So glad to read that things are stable and hope they stay that way!  My doc proclaimed me NED finally after three years with no progression.   enjoying this getting old thing!

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