My mystery nodules

[LexieCat]

So, as I mentioned in a previous post, I had noticed some apparent discrepancies in nodules observed in my right lung.  First scan said there was a nodule in lower right lobe.  Next one said there was one in middle right lobe (no mention of lower right).  Most recent scan does not mention any nodules in the right lung.  All scans note two stable nodules in lower left lobe (my upper left is the lobe that was removed in the lobectomy--one cancerous tumor there).

I had asked at my first visit to oncologist how I should communicate if I had any questions or concerns.  The nurse navigator spoke up and said to email or call her with any questions.  So I emailed her with the subject "Question for the doctor (non-urgent)" and said I was wondering what might account for the differences in the scan.  She emailed me back that she had "look[ed] at" my scan, and "There could be a number of things with the right side- the nodule could disappear... or it is that the nodule is very small and it was not picked up on the more recent scans- due to the size and the cuts of the scan."

I emailed her back and thanked her for the response, but said I really wanted to ask the doctor, and I preferred not to have to wait until my next visit in June.  That was a couple of days ago, and she didn't acknowledge my email, nor have I heard from the doctor.

As I said, it isn't urgent, and maybe she's absolutely right, but it seems to me like a reasonable question, and one that I should be able to ask my doctor about, right?  I know when I had my very first screening scan, when the nodules were first observed, they had me come back three months later to see if there were any changes.  When nothing had changed, they told me to come back in a year (which is when the suspicious nodule was first pegged as probably cancerous).  So if a "new" nodule is observed in the middle right lobe, where it wasn't observed previously, why did that not get the same degree of scrutiny as when I had my first scan?  I guess that's really my question.  Although I guess if they are now not seeing anything at all on the right side, that would seem to suggest nothing is growing over there.  

I'm just slightly annoyed that the question was not passed to the doctor for response, when I specifically said it was a question for him.  My fantastic surgeon told me to call him on his personal cell phone with ANY questions--not that I would bother him with something that is more a matter of wanting to know than any real concern that something is wrong.  I have a feeling I won't get an answer till my next visit.

[BridgetO]

I think it's really reasonable to expect an answer from the oncologist. Do you have a pulmonologist? My pulmonologist was the most helpful in interpreting scans and comparing past and current ones.

Bridget O

[LexieCat]

I haven't seen my pulmonologist since I was handed off to my surgeon.  At one point I asked somebody whether I'd be seeing him again, and they said, no, not unless there is some problem he's needed for.  I saw him only as part of the screening process.  I suppose, too, part of the reason I don't see him is that my pulmonary function tests were "excellent," so even though there was some mild emphysema observed, there isn't much he would be involved with.  

If I'd had my druthers, I'd still be seeing my surgeon for followup.  Which I suppose I could have done, but as he explained, you can come to me for followup, but if anything happens (recurrence, metastasis), you'd be looking at chemo and not surgery.  So I figured it made sense to develop a relationship with the oncologist rather than have to jump ship at a critical juncture (if something turned up).

[LexieCat]

Hmm, just did some googling, and apparently it isn't unheard-of for nodules to disappear, depending on what caused them.  Given that I'm getting scans every six months, there is probably zero to worry about in terms of not being on top of something, but I'll ask the question at my next visit.  

[Susan Cornett]

My last CT showed a nodule in my lower left love (upper love was removed). Super Doc wants to check again in 90 days. I've had several people tell me that nodules come and go. Lungs are finicky!

[Tom Galli]

Teri,

You've two very important concerns: nodules and communicating with your doctors. As a lung cancer survival, I am overwhelmingly concerned about every nodule -- period! I get paper copies of all radiological interpretations and use a spreadsheet to log and track nodules, cysts, and even kidney stones.  My scans, after nearly 14 years, still display here, there and everywhere so I comfort myself by maintaining my own configuration management. I'm down to only one scan a year so tracking is not as difficult as an every-other-month diagnostic routine but tracking is comfort and relieves uncertainty. 

How does one get answers from doctors in between consultations?  I have two doctors who've been with me throughout my cancer treatment: general practitioner and oncologist. My thoracic surgeon retired.  I asked and received email addresses from all three.  I am very mindful of their grueling work schedule so I almost never contact them (retired surgeon is an exception; we email chat about vacation plans).  When I do, I always cc the nurse and I get near immediate responses. 

I believe if one is professional in approach to physicians, physicians will respect and acknowledge professionalism. Ask them all.

Stay the course.

Tom

[David Sevey]

Lexie, 

I agree with Tom.  I have a nodule in my right lung that has shown up on some but not others as well.  I have gotten the same answers from my doctors, some come and go depending on what they were from, to begin with.  I asked and was also provided direct contact info for my GP, Oncologist, and Palliative care doc.  I being mindful of there schedules do not contact unless it is something that I feel is urgent and they all have been awesome in getting back to me.  On a few occasions if they were not able to they made sure I got a call from the PA, or Nurse with the answers needed.

Hopefully, everything goes smoothly for you.

 

David

 

[LexieCat]

I saw my oncologist today.  Had an appointment for genetic counseling (suggested by my GYN nurse practitioner re the breast issue we were concerned about), and they routinely loop in an oncologist--since I'm already seeing him, he's the one they scheduled.  

I asked him my question about the appearing/disappearing nodules on the right side, and he said they could be anything--inflammation was his bet.  He said they were so small to begin with that they were nothing to worry about.

Which is pretty much what I figured.  Just good to get an answer from an actual physician.

[BridgetO]

Yes, good to get an answer from an expert. Are you having the genetic testing? If so, I'm interested in hearing your results. I was found to have a VUS (variant of unknown significance.)

Bridget O

[LexieCat]

I have an appointment with a breast specialist.  After discussing with the counselor today, I decided to see what the breast specialist has to say about it before I decide.  I don't have enough "red flags" to indicate that there is a strong likelihood of genetic cancer (although my mom was diagnosed young, there isn't a lot of cancer in the rest of the family--though it is a fairly small family), so if I get it, I will have to pay out of pocket for it (around $250).  My lung cancer is no great mystery, given my smoking history.

I may have it done just out of curiosity--DNA is pretty interesting!

[BridgetO]

I agree that DNA is pretty interesting! Fortunately my insurance paid for my ge netic test, Their  rule is to pay when a person has 3 or more "unrelated" cancers.