Can I ask for some advice?

SherryS · Regular Joined: 18 Jun 2009 Posts: 12

I have been reading this forum for over a month and find you all to be wonderful people. I am hoping that you may be able to steer me in the correct direction.

I am 48, overall healthy, and have always been a non-smoker. May 15 I started having chest pains and shortness of breath. I went to the ER. My heart was fine, they thought I may have a blood clot. Xray showed a "mass" on my left upper lobe 1.5 x 2 cm. They confirmed it with a CT scan.

The following week I saw a pulmonary specialist. He took an extensive health history and said he truly believed this was not cancer (I have no other symptoms, either). I do have a history of pneumonia and bronchitis, with the latest bout being this past February. He scheduled me for a broncoscope just to be sure. The results of that were inconclusive. He could not get a piece of it but was able to do the saline wash.

He said that while he was in there, the mass moved and that tumors typically do not. Also, the pathologist did not see any tumor cells. He just cannot say what it is. I have had several xrays and it has not changed at all in the last month.

He has now recommended me to a thoracic surgeon to have it removed. I really am afraid of the surgery.

I have read so many stories on here where people have something similar and are taking a more of a wait and see approach. I am clueless as to why they keep telling me it is likely not cancer, but rushing me to surgery.

Can anyone offer any advice or tell me what types of questions I should be asking the surgeon? Is it foolish to want to wait a few months and see what happens with it?

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2400

Hi Sherry,

Sorry you have to drop in to ask questions and I hope there is no need for you to hang out here in the future!

Have they done a PET scan? Seems like that would be a no-brainer at this point in the diagnosis process.

The biggest reason I can see for them moving in a surgical direction, in my opinion, is exactly how you described it --- a mass. You are in cm territory, not mm's. Most nodules are mm size. It also is located in an area that is causing you obvious symptoms. IF this is lc, this size isn't indicative of a wait and see approach.

See what the surgeon has to say. Odds are he's going to want to operate -- it's what they do. Shocked

Is there any reason why they can't do a fine needle aspiration type biopsy? (I don't know much about those so maybe somebody else can jump in here.) Certainly, if surgery is determined to be a must for removal, they can do a VATS procedure which is much less invasive.

Good luck and feel free to ask any questions. This is quite a shock to you, I'm sure.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

SherryS · Regular Joined: 18 Jun 2009 Posts: 12

Thanks so much for your response.

One thing I need to clarify is the symptoms. The symptoms were just that one time and only for a few hours. The dr. has basically determined that the chest/back pain was muscular due to exercises that I was just doing the day before (with weights). After the initial pain, it turned into a basic soreness that was relieved with tylenol and gone the next day or so. He thinks that the shortness of breath was panic from convincing myself that the pain was something else. (My husband had a heart attack a few years ago, so that's why I was thinking that way that day.)

I have had nothing like that since that day and would never have even gone to the dr. if I had waited even a few hours.

No, a PET scan has not been done, nor been recommended. That is why I am so confused as to why they think surgery is the right course of action.

melkissa · Posted: Fri Jun 19, 2009 12:01 pm Post subject: Re: Can I ask for some advice?

Hmmm. Weird situation. Wish I could help. Good luck with everything!
_________________
My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2400

Hi again,

This does seem odd. Go see what the surgeon says and maybe get a second opinion from a different pulmonologist, in a different practice. Get copies of all of your reports, etc. to see the second opinion doctor.

If the SOB and pain were cancer related, it wouldn't suddenly disappear. I can see the reason for your confusion. I think the doc is as confused as you are in how this is presenting.

At least hear the surgeon out. Do yourself a favor and post all your info to Dr. West at CancerGRACE.org. He's an oncologist with a specialty in lung cancer and has a lot of lc specialists on his site. See what his opinion is of what should be the next step. If you can find a pumonologist site online, I'd also ask there so you have a little more info from a professional to go on.

Keep us posted. This sure is different and I pray it is not anything to be alarmed about. Stay on top of it though. Always better to be safe than sorry.

Just think of yourself as "special!" Wink

Hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

deena2288 · Regular Joined: 01 Apr 2009 Posts: 11

My husband had a cm nodule in his left lower lobe in December 2008. He had a PET scan and it lit up. He then had a fine needle aspiration and it turned out to be adenocarcinoma. We were shocked since he was a non-smoker. He had a left thoracotomy and had his left lower lobe of his lung removed. Just remember that thoracic surgery is major surgery and you can have complications from it. I feel that you should more testing to determine if it is benign. Remember thoracic surgeons make their living by doing surgery. It could very well be a granuloma due to your previous history of bronchitis. I know this sounds very scary but please don't rush into anything. Good luck.

UneasyRider · Regular Joined: 21 Aug 2008 Posts: 40

Hi Sherry. Yes, many doctors take a wait and see approach. But this nodule (and it is a nodule, 3 cm or bigger is called a mass) is pretty big for a wait and see approach. If it is cancer, it is big enough that there is a real danger of it spreading, and that is the big thing that you do not want to happen.

I tend to agree with the aggressive approach, including surgery if there's no other way to tell for sure if it's cancer. See what the surgeon has to say. If he wants to do open surgery, I think you should get a second opinion from another doctor who does VATS, instead. The nodule is small enough that you should be a good candidate for VATS, and it is a lot less invasive and has a lot faster recovery time than open surgery.

Good luck, and let us know what happens.
_________________
57 year old male in Texas diagnosed with Stage II NSCLC
Upper left lobectomy on December 20, 2007, then 3 rounds of adjuvant chemotherapy
July 2008 CT scan - NED
December 2008 CT scan - NED
June 2009 CT scan - NED
My story is in this thread: http://cancerforums.net/viewtopic.php?p=39609#39609

SherryS · Regular Joined: 18 Jun 2009 Posts: 12

Thank you all for your support and advice. This is truly the most frightened I have ever been in my life and, unfortunately, you all know how I feel.

I took the advice offered and posted on Cancer Grace. What a wonderful site! After reading Dr. West's advice, I felt very uncomfortable with the course of action my dr. was heading in. Fortunately, I live near Pittsburgh and was able to get into the Lung Center at the University of Pittsburgh.

I saw the pulmonologist there yesterday and he ordered an xray to compare with the ones I have already had. No change. On Monday or Tuesday, I will go for the needle biopsy. He is scheduling a PET for the next day in case it will be necessary, but he said that appointment could always be canceled.

The lesion has smooth edges but is non-calcified. Dr. told me today that if it turns out to be malignant, he felt that at this point surgery could be curative as it is small and xray and exam is not showing any evidence of spread. He really gave no opinion if he felt it was cancerous or not, but I do believe that he feels it is - just a gut feeling.

Is it true that surgery could actually be a cure? I have not read anything that says that. Sad

UneasyRider · Regular Joined: 21 Aug 2008 Posts: 40

Sherry,

Yes, with stage I NSCLC (small nodule with no lymph nodes involved) surgery is a cure somewhere between 70 to 90 percent of the time, depending on what study you believe. With Stage II like I had, the cure rate from surgery drops to 40 percent (closer to 50 percent with adjuvant chemotherapy after the surgery).

Of course, it's not too late to hope that your nodule isn't cancer at all. Good luck!
_________________
57 year old male in Texas diagnosed with Stage II NSCLC
Upper left lobectomy on December 20, 2007, then 3 rounds of adjuvant chemotherapy
July 2008 CT scan - NED
December 2008 CT scan - NED
June 2009 CT scan - NED
My story is in this thread: http://cancerforums.net/viewtopic.php?p=39609#39609

SherryS · Regular Joined: 18 Jun 2009 Posts: 12

Thank you for posting hope when all I have read is negative. Wink

I have a needle biopsy scheduled for Tuesday. Hopefully it will give me some kind of answer. At first I was just terrified of the whole idea of cancer. I still am, but am also at the point that if this is what it is, tell me and let's get started on a treatment program.

Your story is truly inspiring.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 2400

Hi Sherry,

Glad to hear you did go to CancerGRACE.org and get Dr. West's opinion. He's the greatest, isn't he? I often hesitate about offering personal opinions, because we are all lay people here, but some situations just raise red flags. I thought you were on a bizarre journey for a diagnosis. Their approach made no sense to me, so that's why I recommended Dr. West. Whew!

The other component has been answered and I concur that I've seen many people, IF diagnosed at a very early stage, do well with surgery. That is putting the cart before the horse however.

Let's just hope again, that this is not malignant. At least you are getting to the bottom of it in a logical, measured way now. I know this is a frightening time for you, but we're around if you need to share your feelings.

God bless and keep us posted! (Thanks to Uneasyrider for his great comments and reassurances. He's speaking from experience Sherry!)

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

SherryS · Regular Joined: 18 Jun 2009 Posts: 12

Thank you all for your encouragement and support.

After reading this site and all of the answers from Dr. West, I knew that I was not comfortable with my drs. I am fortunate enough to live 20 miles from Pgh. and some of the greatest medical care in the nation. I have decided to take advantage of that. The Lung Center at the University of Pittsburgh is where I am going and I feel comfortable with their recommendations.

I am still hoping against hope that the lesion is benign.

melkissa · Posted: Mon Jun 29, 2009 11:07 pm Post subject: Re: Can I ask for some advice?

Crossing my fingers for your biopsy tomorrow!
_________________
My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

SherryS · Regular Joined: 18 Jun 2009 Posts: 12

Thanks so much for thinking of me. I really appreciate it.

I had the biopsy yesterday - the procedure itself was pretty simple, but I had alot of pain afterward. It was in my shoulder and I believe it was more related to the way I was laying than anything else.

This journey to getting a diagnosis has been unbelievable! I was scheduled for the biopsy yesterday and the PET today. I went to get the PET and was told that I could not have it for at least a week after the biopsy. I have no idea who scheduled them back to back, but it was a wasted trip.

I am now scheduled for the PET 7/14, which is 2 MONTHS after the initial finding of the mass. The not knowing is the hardest part.

SherryS · Regular Joined: 18 Jun 2009 Posts: 12

I received my diagnosis tonight. I have stage t1 adencarcinoma, the staging being based on the ct guided needle biopsy. I will have a PET scan shortly and will follow with surgery.

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