Lung issues, can't rule out mets?

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bevin
bevin Member Posts: 1,902
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

Hi everyone, I am a bit concerned and hoping someone might have a similar experience and can give me some guidance.

I am struggling with some news my doctors did and did not tell me,so I am wondering if what is happening to me is normal.

 My name is Bevin, I am 46 and was diagnosed over the summer. Had my suregery and radiation. Skipped chemo. These past few months, I have been coughing a ton (ignored, thought I had a cold - it's winter after all) and have been short of breath, rapid heart rate and had some rib pain - probably from all the useless coughing!.

Anyway - Doctor ended up sending me for a Cat scan which showed some lesion on my lung. The Oncologist called me the day after my scan and said I needed to see a pulmonary doctor.  They set up the appointment for me The pulmonologist  shows me the spot they were concerned with. Could be Fibrosis from radiation or could be mets.  Doctor said, he didnt think it was mets but could not know for sure.

Said he could do a PET scan , but all that would do is light up the same area, but wouldnt give him more info to tell what it is.  Biopsy he didnt want to do at this point as it was a bit on the smaller side and there is a great amount of risk. Said he wanted to scan again in 4 weeks and then again in 3 months.

I asked if this was fibrosis would it get better and how would he know if it was cancer. He said the lesion would change over time, I asked if it would get better, his answer was well, it will change and will give us more information. He said the lesion is right under my breast. So he thinks its likly it is fibrosis but is not completely sure of either conclusion.

 Really?? How can he not be sure. Isn't the pulmonary doctor is the expert.? He is calling my Oncologist to talk about what he sees, but in the mean time, I am becoming a bit nervous. Mostly because he didnt know for sure, and looking and waiting seems silly. No meds? Not treatment if we're not sure.? I am puzzled and should have asked these questions at my appointment but of course didnt. I am planning to ask my Onco about getting a second opinion, and if he thinkgs it's necessary. I assume tanother Pulmonary doctors will say the same.

Is there anyone out here who had something similar happen, is it normal to not be sure about lung mets , is it really wait and see . I assume I should not worry, if they think its too risky to do a biospy, it should be all right, right??

Anxious for your thoughts.

XXX

Bevin 

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  • pj12
    pj12 Member Posts: 25,402
    edited February 2011

    Sorry you are going through this, Bevan. And I sure can understand the worry and frustration. During my post-DX - pre surgery work up in March 2009 I had a CAT scan of my lungs, among others. A "spot" showed up in the lung on the uninvolved side. Before radiation so not from that. I was referred to a pulmonologist who said he did not suspect mets but it needed to be followed. I have had a CT scan every 6 months since then and one Pet Scan. Every time they say it will be the last but every time there is a "shadow" or a an echo or some reflection that may not be significant but requires more follow up. I am supposed to have another CAT scan in May and I recently asked my oncologist if I couldn't stop worrying about it since I am without symptoms but she said no, need to keep looking. It has not changed size and is too small for a PET scan to be definitive, turns out. 

    I hate all the additional radiation, wasn't 36 radiation TX enough? And I hate the cost, this next one will be out of pocket as I have not met my deductible. And I HATE the anxious feeling that hangs over me! Last CAT scan the report raised a question about a possible "lytic" lesion on my scapula (a sign of bone mets!) and I had to have a bunch of shoulder x-rays. Turned out it was due to a recent injury. But they sure had me going for a while.

    I tell myself I am not going to get worked up but that is not possible. So it does seem that it really is just wait and see. My only hope is maybe when I go on medicare in October 2011 they won't approve all these  CAT scans and I will get off of the merry-go-round.

    I hope there is some comfort in knowing you are not alone. Let's keep in touch and compare notes as time goes by.

    Pam 

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  • bevin
    bevin Member Posts: 1,902
    edited February 2011

    Pam - thank you for sharing your experience.  I was stunned when doctor said he could not rule it out. I thought it would be either or situation. I see the Onco next week, I'll let you know what he says. Would love to keep in touch and thanks for sharing!! It helps to know someone else is hearing something similar.

    Bevin

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  • pj12
    pj12 Member Posts: 25,402
    edited February 2011

    I've bookmarked you and I'll let you know what happens in May. Please come back here or PM me to let me know what your onc says next week. Sending positive vibes!

    Pam 

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  • bevin
    bevin Member Posts: 1,902
    edited February 2011

    Thank you Pam -

    I'd love any other advice on possible lung mets anyone can share too. Thanks everyone.

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  • NYmom60
    NYmom60 Member Posts: 44
    edited February 2011

    I understand your anxiety since I have been going through something similar: found lung nodules after a PET scan once I finished Herceptin, about 6 months out from radiation. They are too small to tell for sure what it is and too small for biopsy. My onc has taken a wait and see approach and so I have been CT scanned twice since. Nodules haven't changed which is a good thing but sure wish they would go away! I know its hard not to have a definite answer but try not too worry too much between scans.  Let us know what happens.

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  • pennylane
    pennylane Member Posts: 177
    edited February 2011

    Hi Bevin, A few months after I finished treatment (chemo and rads) I had an ct scan which showed numerous bilateral sub-centimeter nodules on my lungs...There was none before treatment and the lung specialist gave me a 50/50 chance of having mets....I was so totally depressed and came here for advice and many women came on and said they had the same experience and it was nothing...just scarring from rads...I was scanned every 6 months for 2-years and knock on wood am fine...I believe that a 'watch and wait' approach is the most common way to access lung nodules...You will get much better at living between scans...believe me you will...and I hope more women will post to assure you that these things are very common most often work out in your favor....have a little faith...best wishes, P  

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  • bevin
    bevin Member Posts: 1,902
    edited February 2011

    Thank you NY Mom and Pennylane. 

    It was nerve wracking to be told, I am not sure.  I wish I had asked more questions too. I guess I was expecting some prednisone and an answer of no worries - and sent on my way. I wasn't expecting to be even talked to about possible mets. 

    Glad to hear this is normal approach. I do have my Onco appt this week Thursday so will also talk with him. By now he should have the report of the pulmonologist.

    Do either of you know if the terminology means anything, i.e. nodule vs lesion? Any questions you think I should ask my Onoc this week to get more clarity around this.

    Thank you all for reaching out and sharing your experience.

    love

    Bevin

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  • jhammel
    jhammel Member Posts: 36
    edited February 2011

    A similar thing happened to my wife a year ago.

    She developed a bad cough after our 1-year old was ill from a nasty virus.  A spot was discovered on x-ray, then confirmed on CT with suspicion for cancer, then further confirmed by PET scan with even more concern for cancer based on the elevated metabolic activity.  It was a single lesion about 2cm diameter, and at that point, the doctors were still unsure of what it was.  Recurrent breast cancer, primary lung cancer, TB, or a host of benign conditions were still possibilites.

    Perhaps due to the size of the lesion (2cm is not big, but it's not really small either), they suggested a bronchoscopy.  My wife had the bronchoscopy, but with only limited effectiveness because the tumor was deep and cells had to be flushed out.  Anyhow, they were able to confirm cancer, but couldn't definitively say if it was breast or lung cancer.  It wasn't until they performed surgery to remove the part of the lung with the tumor that they were able to get a better look and conclude that it was breast cancer, consistent with her primary tumor removed over 8 years earlier by mastectomy.

    In my wife's case, they didn't take a 'wait and see' approach.  I think a couple reasons were the size of the nodule, and the suspicion of primary lung cancer.  My wife was young (47) and in good health, so I think her doctors believed a timely surgical resection would be best for obtaining a correct diagnosis and for the best chance of cure or disease control, regardless of the type of cancer.  In her case, though, they knew before the surgery that it was indeed cancer due to the bronchoscopy.

    So, to answer your question, based on our experience and from reading on it, I think the uncertainty with respect to lung lesions is common.

    Also, we were told about risks of the bronchoscopy, but our doctors recommended it and we concurred - needle biopsy through the chest wall would have been more difficult and risky, and we were advised against it.  In our case,the bronchoscopy wasn't completely successful since the cancer origin was not determined, but we did learn it was cancer and then moved forward with treatment appropriate to either cancer type.  Her post-surgical systemic treatment has been geared toward the breast cancer, of course, since that was her final diagnosis.

    JH 

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  • bevin
    bevin Member Posts: 1,902
    edited February 2011

    Thank you JH. You shared a ton of great information. I really appreciate that. 

    I see my Onco Thursday so it will be interesting to hear what the Pulmonary doc suggested in his response to the referral. I assume he will have  the final recommendations for me  then. I am also picking up a copy of the CT scan radiologists report  tomorrow. I have the disc, but want the report for my records too.

    I do recall the Pulmonary doc mentioning the Bronchoscope, but he didnt seem to push it.  The biggest thing I recall that he said was the PET scan would light up the same area of concern and not really tell what it is.  

    May I ask how they are treating your wifes Lung mets? Is it chemo, radiation, both. It seems like she has had surgery to remove the section of cancer. 

    Thank you for reaching out and sharing so much. You wife and I are only one year apart! Sending you prayers for strength as you both go through this.

    Bevin

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  • bdavis
    bdavis Member Posts: 6,201
    edited February 2011

    Hi Bevin,

    I don't know much about this, but as you are a stage II, I wanted to comment... I do think you should follow up BUT, when I asked my doctor about scans he said it is not usual to give scans to stage i or II because they are not reliable tests... AND I think it is highly likely you have some damage from rads, which is a bummer but not life threatening. 

    As I said, I don't know much about this, just what I have been told and thru reading... I just had a conversation today with my onc about rads and lung damage as I want to avoid rads and may (most likely) will have a MX instead.

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  • jhammel
    jhammel Member Posts: 36
    edited February 2011
    Thanks, Bevin, for the mutual support.My wife's 2cm lung lesion was the only thing they saw in her lungs from her scans, so when they performed the surgery, the idea was to get it completely.  They approached it much like they would a primary lung tumor, meaning they also sampled lymph nodes inside and outside the resected portion of the lung they removed.  She had a right upper lobectomy, meaning they took out the entire upper right lobe of her lung.  It is possible to remove only a portion of the lobe and still get the visible cancer completely, but we are glad they did as much as they did since a couple lymph nodes within the removed lobe also had a little cancer, presumably spread from the new tumor.  No sampled lymph nodes outside the resected lung portion had any cancer.  (Concurrently diagnosed, she also had a small spinal tumor that was completely resected by a neurosurgeon a few weeks before the lung operation).There is still debate over the benefit of having lung metastases removed surgically due to the systemic nature of the disease.  Even among its advocates they seem to agree that appropriate cases are highly selective.  It seems to be an option only considered for a small % of patients with lung metastases.  Despite the risks of surgery and possible long term effects of missing a portion of her lung, we're glad she had the surgery since it put her instantly to NED and minimized the tumor burden as we entered post-op systemic treatment.  Nine months later, and she's still NED with a clear PET scan last week.Her follow-up treatment was 12 weeks Taxol + Herceptin (she's highly HER2+), which she tolerated very well, and now she takes Tamoxifen daily and continues with Herceptin once every 3 weeks.  Periodic PET/CT scans will be used to monitor the lungs and other upper body organs. I think your doctors are trying to spare you needless risk and discomfort.  The bronchoscopy was no joy for my wife and the lung surgery was major, so if they can make a better diagnosis by using repeated scans to evaluate growth, they'll be doing you a big favor if it turns out not to be mets.  But having been in the shoes of the patient's husband, the 'wait and see' approach to me would be mentally taxing.  Even though our doctors sided with the surgery, even the days leading up to surgery were a bit stressful knowing the tumor was there.  Though in our case (thanks to the bronchoscopy) we had already known it was cancer, so we just wanted it out ASAP.  In your case, you have reasonable hope that it's something else.  I'll hope for that for you as well.  Unless it's known or highly suspected to be cancer, I can certainly see how 'wait and see' is the best approach.  Though if the bronchoscopy turns out to be an option, I would take it, hoping it could shed more light on what's there.  JHedit:  PS - They didn't do radiation to the lung area after the surgery since no outside lymph nodes or surrounding tissue showed evidence of cancer, and a lung lobe is considered a largely self-contained structure.  Unless the cancer is visibly penetrating outer lung lining or found in outside lymph nodes, I think it's common to not have radiation performed following a lobectomy.  My wife did do a very brief course of radiation in the area where the spinal tumor was resected, but I think that's pretty standard for skeletal tumors.
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  • bevin
    bevin Member Posts: 1,902
    edited February 2011

    Dear JH - thank you. I really appreciate all this insight. Your technical and medical knowledge about this is amazing - you sound like a doctor!. I am certain many wifes wish their husbands were so knowledgable and let me say - it's great you came here to support her.  I am so so happy for both of you she is NED.  Again thank you for sharing. I'll post you an update after this week.

    Hi BDavis - thanks for your note. Yes, the CAT scan was originally ordered due to the prolonged cough and what they thought was causing it. That issue was ruled out. The lesion was found and I was referred to the pulmonologist. Pulmonary doctor stated could be from the Rads- scarring or could be lung mets. He just wasnt' 100% positive either way - though he did think it was most likely not mets. My CAT scan was not routine scanning was due to the symptoms I was having and some diagnositc tests that were done. My Onco office takes the same approach as yours - they dont run them as a matter of routine either. 

    It was surprising to me  though that he couldnt tell what the are of concern was caused by with certainty. I guess I was just expecting to be given prednisone to reduce radiation inflamation and sent on my merry way  I never even thought of something more dreadful as a potential worry.

    Anyway- I am glad to have them follow it and they will keep a close eye on it w the future scans to watch whatever changes they are looking for that will provide the definitive diagnosis. I just was surprised this was the course of action and needed to know if was normal to not be able to tell what something was on a lung scan.  Anway - less worried now, not fretting, but still concern lurking in the back of my brain..

    Good luck to you on your decision with surgery. I went the lumpectomy route. Let me know how you are doing.

    Bevin

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  • jhammel
    jhammel Member Posts: 36
    edited February 2011

    Thanks for the compliment, Bevin - assuming you think doctors sound knowledgable and not like jerks. :)

    I'm a statistician in the medical arena and have worked with many doctors writing up and presenting research, so the manner of speaking and some knowledge of cancer should have rubbed off on me.  And when it hits home like this, I'll study it out to the last detail.  Yes, I think my wife appreciates it and she comes to me with questions, but she still thinks I am a bit obsessed with it. :)

     JH

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  • bevin
    bevin Member Posts: 1,902
    edited March 2011

    HI JH- saw my Onco Thursday. They received the report from the Pulmonary doctor and Onco wanted to do a PET scan to get more information about the lesion. I am having that on Tuesday next week. Glad they're doing it. A bit nervous. Not sure if it will give more information or more questions. The are of concern seems large to me 6.7by2cm but I guess in comparison to the entire lung, thats small.

    B Davis - did you decide on you surgical choice. I hope you're doing well.

    NYMom, Pam and Penny Lane. Thanks all for your well wished. Will let you know what the PET scan shows or doesn't.

    Hugs

    Bevin

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  • pj12
    pj12 Member Posts: 25,402
    edited March 2011

    The suspense never ends, does it? I do hope the  PET scan gives more information. So good that your doctors are investigating and not sticking their heads in the sand. I am thinking about you every day so if that count for anything you are in good shape :)

    Pam 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited March 2011

    Bevin:

    Just writing to wish you all the best on Tuesday and hoping they can give you a definitive answer and take you out of this land of limbo you are in.  I also hope it's nothing cancer related.  Will be thinking of you and hoping....

    Linda

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  • bevin
    bevin Member Posts: 1,902
    edited March 2011

    Thank you Pam and Linda,  I really appreciate your well wishes. Will post any update I get. I understand this waiting , watching is pretty normal.

    Linda- Gosh- I cannot believe you are 62.  I sure hope I look like you  when I am in my early 60s your picture is beautiful.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited March 2011

    Bevin:

    Lol!  I'm 64 as of Feb 16th!  I can't believe I am this old!  I still feel as though I am in my 40's - wishful thinking.....  Finally got a picture taken by my grand-daugther.  I raise her, it's just the two of us.  She's 15 1/2 and I have asked for the last two years for a photo to post - I'm low man on the totem pole of a teenager!!!  Thanks so much for the compliment.  God only knows what I look like on the inside - sure would hate to see it, lol!  Again, stay strong, we have your back!

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  • pennylane
    pennylane Member Posts: 177
    edited March 2011

    Hi Bevin, When they find something on your lungs they seem to scan you a lot in the beiginning and then it tapers off to once every six months.  I had a second ct scan again just 3-months after the initial discovery of the stuff on my lungs and that was followed by a PET scan shortly thereafter...again, I have to guess this is protocol.  My gut feeling is that you are early stage and the odds are really in your favor that this is nothing...but until you get those first few scans under your belt this is a brutal situation...I think I blocked out most of my memory of the intense anxiety level at that time...But You know you finish the awful treatments for bc and just want to breath a little and then boom this happens...so, Bevin, I know how hard this is for you...just hang in there, better days are waiting for you, best wishes for your test....p

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  • LRM216
    LRM216 Member Posts: 2,115
    edited March 2011

    Pennylane:

    Don't want to hijack Bevin's thread, but I just wanted to say Congrats to you on being 6 yrs. out and triple neg.  Makes a big smile come to my face, hope I can do it too!

    Decades and decades more cancer free years to you,

    Linda

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  • bevin
    bevin Member Posts: 1,902
    edited March 2011

    Penny Lane- Thanks for the pep talk. I needed this today as I am getting a bit nervous about tomorrow. For somereason I can't shake the bad feeling. Congrats on being 6 years  out from your surgery. I too hope you stay cancer free for years. I am glad too so far your lung stuff is staying stable and nothing of concern.

    Linda- now worries - I appreciate your kindness

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  • rosesinwinter
    rosesinwinter Member Posts: 70
    edited March 2011

    Hi Bevin-

    Wishing you the very best on Tuesday! 

    Just wanted to share my own experience - it may help a bit I hope.  I had a single mastectomy with chemo and then radiation. I also received Herceptin during the time that I was getting radiation.  About 5 weeks into radiation, I started running a temp of 101 and was admitted for over a week with a very funky looking CT scan of the chest. I had an area that looked like inflammation, another looked like fibrosis and I had a small nodule also. After I recovered, a pulmonary physician worked me up more extensively as an outpatient.  She is also a critical care specialist.  She has always insisted that a high-resolution CT scan of the chest be done for comparison purposes.  The high-resolution CT scan has some of the images done on your back and some on your stomach. It was explained to me that they can piece together the images to monitor changes as they actually move. My pulmonary physician was puzzled by the picture, was disappointed that they did not get a bronchoscopy while I was more acutely ill and ended up doing one 2 months later as an outpatient.  Personally, I did not think that the bronchosopy was so bad - I was in a twilight sleep for it and went out to lunch afterwards.  It was confirmed from the bronchoscopy that I had an inflammatory reaction from Herceptin and that the scarring was likely due to radiation (I was hit hard with radiation as I was stage 3). I also had pulmonary function testing which was acceptable and so we jointly decided not to use steroids.  I see this physician yearly now and she does repeat scans. I have not had any changes for the last 2 years.  However, I was diagnosed with Sjogren's Syndrome in June, which is an auto-immune disorder which can also affect the lungs.

    I am so happy that I had a great pulmonary physician who really pursued the answers to the problems.  At my last visit, she said that exercise and weight loss were now the key parts of my plan. I am using the treadmill every day and building up endurance.

    I so hope that you have the same results.  Sending you a huge hug while you are waiting for the answers!

    Janet

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  • LRM216
    LRM216 Member Posts: 2,115
    edited March 2011

    Bevin:

    Can't wait for this to be over for you.  Stay strong, Bevin - we are all holding onto you.

    Linda

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  • bdavis
    bdavis Member Posts: 6,201
    edited March 2011

    Hi Bevin,

    No 100% decision yet, but I have learned that if I choose MX and recon I have 100% coverage in NOLA for a flap microsurgery.. so that helps if I choose that route... My onc is supportive if thats what I want... I think I will make an appt with my local BS and get her opinion one more time...

    Good luck with your tests... and let us know how that goes,..

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  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited March 2011

    Bevin, just wanted you to know I will be holding your cyber hand today! Prayers are up.

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  • pj12
    pj12 Member Posts: 25,402
    edited March 2011

    Waiting for some good news!

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  • bevin
    bevin Member Posts: 1,902
    edited March 2011

    Hi everyone, Home from my test. Had to drink the barium stuff and have the radioactive stuff injected . I had a PET and CT scan - the fuse the results so thet can see everything.

    Janet- thank you for sharing your experience. Its good to hear from others who have gone through something similar. So so glad you are ok. Good to know too the bronchoscope is not too bad in case they ever suggest that.

    BDavis - covered by insurance sounds good :)

    Linda, Penny, Pam,Barbara, Janet - everyone here, thanks for your prayers.  Given its the end of the day, I dont expect to hear from my Doctor today. Hopefully something tomorrow. I really appreciate your thoughts, prayers and caring notes.

    Bevin

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  • pj12
    pj12 Member Posts: 25,402
    edited March 2011

    Hoping you can sleep and not worry. Easier said than done :)

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  • pj12
    pj12 Member Posts: 25,402
    edited March 2011

    Thinking of you today, Bevin and hoping all is well.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited March 2011

    Me too, Bevin.  Hoping for good news.

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