New - with nodule scanxiety

[Rar]

Hi Everyone.....I'm a 69 year old 'Snowbird', spending the winter months in Florida and the summer months in upstate NY. I suffer from COPD and emphysema.   In September, 2017 my NY pulmonologist recommended a screening CT which was clear.  While in Florida this spring 2018, I required preliminary testing for foot surgery.  In April, findings on the recommended chest X-ray revealed a "spiculated nodule-like area in the right costophrenic angle".  It was recommended that it be further evaluated with a CT scan.  Well.......the CT did not mention the spiculated nodule-like nodule in the RIGHT lung, but it revealed a 4mm ground glass nodule in the lower LEFT lobe.  It said it was non specific and it was recommended to have a scan in 6 months.  

 

Well, the 6 month scan is tomorrow and as you all can guess, I'm beside myself.  I am married, but my husband refuses to discuss this, saying I am a "Debbie Downer" or my "My cup is half full".  In these 6 months, I've mentioned 'the nodule' only once to him.  

I have a Florida PCP who thought that my smoking history, age (69) and heredity are working against me for a favorable outcome.  My mother died at 66 from SCLC.  I also worry that I will be a poor candidate for lobe removal because of my COPD and emphysema.  I think the X-ray mentioned my right lung is worse than my left lung.  Unfortunately, the nodule is in the left lung.  

Right now I'm very scared and am expressing my fears to you folks because my husband won't talk about it.  I can talk about it.....but he doesn't even look up from his book or stop watching TV.  He has no comment.   . CT clear in September, 4mm nodule in April.   . 

[Steff]

Hi there, welcome.

I want to start out by saying that I am not the one with lung cancer, my mom is.  But I can definitely agree that waiting for scans and then the results is awful.  When my mom was originally diagnosed, she had about 1 year of watch-and-see scans.  Finally they saw growth in the nodule and did a biopsy.  She has had other nodules come and go, like lots of people.  While "ground glass" nodules are associated with lung cancer, it does not mean it's lung cancer.  But knowing this does not help the anxiety related to the waiting game.  When my mom was officially diagnosed with non-small cell adenocarcinoma, she had her right, upper lobe removed.  She has COPD with emphysema too.  Her docs did not hesitate with making the referral for surgery, but could not guarantee that she would not be on oxygen after losing some of her lung function.  Luckily, the lobectomy removed a lot of the emphysema and she breathed better than she had in a long time.  So, surgery is possible for some who have COPD.  And there are very many non-surgical options available too, if your nodule turns out to be cancerous.

I will be keeping my fingers crossed for you tomorrow!

Take Care,

Steff

[LexieCat]

Hi, and welcome!  I had nodules they were following as part of a screening and one of mine eventually changed and was suspicious enough that I was referred for a lobectomy. CT scans are much more accurate at visualizing nodules than x-rays are.  A 4 mm nodule is TINY, so it may be they will continue to monitor it for a bit.  If it's determined that the nodule is probably cancer, they will have you perform lung function tests to see if you can tolerate surgery.  If not, there are techniques like radiation (Cyberknife/SBRT) that can eliminate the cancer as long as it's localized.

It's totally normal to be scared about this testing, and it's one of the more frustrating aspects of dealing with all of this--the testing, waiting for results, more testing, etc.  The thing is that even if it does turn out to be cancer it's a very early "catch" and there's a good chance that surgery or radiation my be all you need.  

I'm sorry your husband isn't more supportive.  But all of us here know what you're going through and this is a great group for information and support.

We will keep everything crossed for you tomorrow.  Regardless of the outcome, continued screening scans are a good idea given your history.

[Rar]

Thank you Steff and Lexie for responding.  I appreciate it.  What ae your opinions of the spiculated nodule-like area from the X-ray in the RIGHT lung, with no mention of that nodule on the CT report.  The CT nodule is in the left lung.  I'm rather concerned there is a nodule in each lung.  

[Steff]

It could be that there was nothing that showed up in the CT in your right lung.  As Lexie said, CT's are more accurate in identifying nodules.  Ask your pulmonologist to take a look at your CT to see if he/she sees anything.

We have my mom's pulmonologist look at every scan to get his opinion on them because my mom's cancer recurrence was missed during a scan by the radiologist and oncologist.  It wasn't until my mom continued to complain about shortness of breath that her pulmonologist got involved and found the cancer on the same scan that she was given the all-clear on.  It never hurts to have another pair of eyes looking at the scans.

[LexieCat]

I've had nodules that "appear" and "disappear" on subsequent scans.  My oncologist tells me that because CTs look at a "slice" of tissue (actually a whole bunch of slices), small nodules may be missed by the scans.  So there are a couple of possibilities.  One is that the last scan missed the nodule that showed up on the x-ray, and the other is that what looked like a nodule on the x-ray actually represented a bit of inflammation that has now resolved.

"Spiculation" is typical of a cancerous nodule, but I'm not sure how accurate a description they could get with an x-ray.  You should find out more after this next scan.  It may be that the nodules will still be there but not significantly different and they will continue to monitor them.  

[Tom Galli]

Rar,

Like almost everyone who has a CT scan, I continue to experience small nodules that appear and disappear on my scans.  I've been receiving CT scans for almost 15 years.  To take some of the fright out of the here today, gone tomorrow consultation, I keep track of all the CT finds on a spreadsheet.  Although nodules appear and disappear, I haven't had anything new and that is the important point.

I am very surprised an x-ray would pick up small nodules and very, very surprised it could show spiculation.  Here is my go to resource on pulmonary nodules.  It explains types and causes.  Note most are not cancer.

To put your 4 mm sized nodule in prospective, it is just a little smaller than the diameter of an eraser on a lead pencil.  I'm not even sure it could be needle biopsied and you may be told to have repeat scans every 4 to 6 months.  

So, there is a lot of unknown unknown about your nodules now and although I know the wait and uncertainty is maddening, try to relax and enjoy the Florida winter.

Stay the course.

Tom 

[Rar]

Thanks again Stef and big thanks to Tom for a response also.  My pulmonologist is in NY and is only looking at the Florida report I brought him during my appointment in August.  Regarding the spiculated nodule the Xray picked up, he said, "Huh!  They didn't mention that!".  I don't have a pulmonologist (yet) here in Florida.  Tom, I've read the Cleveland nodule report several times.  I've had a nagging muscle like pain in my right back lat area.  I attribute that to results from poor posture or even from poor technique in golf, but then again I imagine is that spiculated nodule growing.    

I had rotator cuff surgery last year and joint replacement surgery in my big toe this year.  I'm trying to build myself up again after being inactive for so long.  I can't walk very fast or build up aerobic fitness because of my feet, but I do try to go to senior aerobics which is mostly line dancing with  strength training twice a week, ride my bicycle and play golf several times a week.  I'm facing surgery on the other foot soon.  

I REALLY LIKE my NY pulmo doc.  I request Florida information sent to him, but for some reason, he doesn't get it.  I have thought if I need any treatment, I would like to be by my NY pulmonologist, but where I live  is more of a rural area.  Here in Florida, I live near Orlando, where I presume there are lots of cancer treatment options.  I've always thought Florida must offer state of the art medical treatment because of the senior population here.  

I'm not having much confidence in my Florida PCP.  When the nodule was discovered in April,  I happened to stumble upon the results in my patient portal.  She never called me or scheduled a follow up appointment.  

Thanks Everyone for the encouragement.  I'll update you as soon as I learn something.  From my lsat experience, I've learned I have to monitor my patient portal and to not expect a telephone call.  I've added all here to my prayers.  

[LexieCat]

If I were you, I'd get a referral to a pulmonologist associated with one of the local cancer centers.  There's probably one with a lung cancer screening program, and that might be a good choice.  I had my screening, surgery, and followup at an MD Anderson Cancer Center here, and they work in multidisciplinary teams so everyone is on the same page and they get multiple viewpoints.  This way, regardless of how this scan turns out, you would be well-positioned to continue to be screened for lung cancer.  

[Laurel]

I am so glad you are reaching out. It is difficult to have non supportive family members. Waiting for news...for plans of attack....is so scary. Hopefully, you can find one friend who can listen...can support you. Hugs

[Tom Galli]

Rar,

My daughter who lives in Orlando had a meningioma (non malignant brain tumor). After her experience with several noted Florida hospitals and practitioners, she had the tumor removed at Johns Hopkins in Baltimore.

Stay the course.

Tom 

[CIndy0121]

Rar, You have definitely come to the right place and just in time. The day before a follow-up six month scan is a time for support and encouragement  and understanding that you are anxious about the results. Who wouldn’t be? Our situations have differences and similarities, but what I empathize with most is needing your spouse to be emotionally available when you need it most. (My husband has hung in here with me for 4 years of this, so it’s precisely on days that I am nervous, scared, u certain, lonely, that I need him to be there if only to “lean on” and he held up and have my feelings validated. You had some very tiny features @ 4mm 6 months ago. I am also a “nodule” patient, so I hope you will let us know your results tomorrow and reach out for whatever support or need to vent that you have. I didn’t have a mass or tumor; I had numerous enlarging and increasing numbers of nodules throughout every lobe. You are in out thoughts today and will be here tomorrow and the days after that if you need us! Thinking of you.

(Have you considered Moffitt in Tampa, Mayo Clinic or Cleveland Clinic Florida satellite hospitals?)

cynthia

[Mamma Om]

Hello. I'm writing to tell you that  I also have COPD w/emphysema and also asthma. I am almost 75. I smoked for 27 years but quit 30 years ago. This past April I had surgery to remove my right lower lobe that turned out to have two nodules: one adenocarcinoma and one that was initially diagnosed as SCLC, a dangerous type. But just days before my first chemo I was told that the tumor board had decided that it was not SCLC but a neuroendocrine carcinoid, a somewhat rare and relatively harmless type. Anyway, I wanted to reassure you that it may be possible for you to have surgery even with your lung conditions. I had to undergo a breathing test (PFT), and a PET scan to be sure none of the cancer had metastazied. I was told that I just passed the breathing test by a hair. I had the surgery, had a tube in my side for 4 days, was in the hospital for 5 days, and I'm all right, not much more short of breath than before, and I don't need oxygen. Now I am having a CT scan on Tuesday to look again at another nodule in my right middle lobe that is called spiculated. I don't know what will happen if that has gotten bigger. I know I am not able to have more lung surgery. I am sorry your husband is not being supportive. Does your hospital or cancer center have support groups you could attend? You need people to talk to, I know. Best wishes. Mamma-Om

[BridgetO]

Hi Mamma Om,  Please keep us posted on the results of your CT!

[Seventhson]

Best of luck with everything. I have been a paramedic for 20 yrs and never smoked. I have a 1.4 cm nodule in right lung. Very low grade uptake on pet scan. 3 other spots in same lung with one being 4 mm others very tiny. One very very tiny in left lung. Co - workers I could tell thought oh he has a cold. We're not very good to reasonably talk about this with. Yesterday biopsy confirmed a carcinoma.  Don't be too hard on your husband . My coworkers are paramedics and they did not want to believe it. Do not blame yourself either.  I never smoked. Cancer effects all kinds of people without discrimination.  You be strong and powerful and find strength in those supporting you like people here. Take our strength and prayers and use it to fight with. Best of luck.