Finally got pathology report

[LexieCat]

Met with my surgeon today, who gave me the pathology report (which he is disputing tomorrow at their tumor board).  The tumor was 1.5 cm, adenocarcinoma, and the issue in dispute is whether the tumor invaded the pleura--he is positive it did not, and it took the pathologists all this time to determine that, based on what THEY were seeing, it appeared that it did.  Apparently all of the confusion is due to the way the original wedge resection (before they went on to perform the lobectomy) occurred.  Apparently the tumor was deep within the lung, to the point where the surgeon could barely feel it.  The resection basically cut through the tumor, which apparently made determination about whether it invaded the pleura difficult.  The surgeon is positive, based on what he saw and felt during the surgery, that it did not invade the lining.  

So what it comes down to is whether the tumor itself is classed as T1a or T2a.  If I understand correctly, that means the overall staging (since there were no nodes and no metastasis) is either 1a or 1b.  Surgeon strongly feels that chemo would not be beneficial, but I will be meeting with oncologist on Friday--though he says he believes the oncologist is in agreement (they have discussed it).  

Overall, though, he was very encouraging.  He said based on everything he saw, he thought recurrence was unlikely--apparently there will be CTs every six months for first two years, at least, and thereafter once a year.

We didn't discuss markers or mutations--it doesn't look like that's been done (I'll ask oncologist about that on Friday), but based on what I'm reading there doesn't seem to be evidentiary support for doing any targeted therapy outside of clinical trials for this stage.

Teri

[Tom Galli]

Teri,

Well that is good news! I hope you are "one and done."

Stay the course. 

Tom

[LexieCat]

Fingers crossed!  Of course, I'm willing to do what has to be done to maximize the likelihood of nonrecurrence, but if there is truly no benefit, I'd just as soon skip the unpleasantness of chemo.

LOL, surgeon was still regretting my unfortunate post-surgical crepitus experience.  He was describing how I looked, to the med student who was there for today's appointment, as "the Sta-Puft Marshmallow/Michelin Tire Woman."  Pretty accurate!

[LaurenH]

I'm glad to read your good news LexieCat! And I had to smile at the Stay-Puft Marshmallow Man part, though I'm sorry you had to go through that. I hope all goes well at the oncologist today! Keep us posted.

Lauren
--
Digital Community Manager
LUNGevity Foundation

[LexieCat]

So I met with my VERY young oncologist yesterday.  Nice guy, like his taste in socks.  He started off doing the "lung cancer for the utterly uninformed" routine--I cut him off and told him what I do know, what surgeon and I had discussed, etc., and he switched gears and started talking to me as someone who understands the basics.  

The tumor board hashed out the dispute between pathologists and surgeon, and pathologists carried the day.  Oncologist understands surgeon's position but his recommendations have to be guided by what pathologists determine.  Bottom line, tumor is classed as T2a, and cancer is staged as 1b.  He tells me that, interestingly, stage 1b is the one stage at which it's really anyone's call whether chemo is appropriate or not.  With stage 1a, chemo is NEVER recommended, as it actually has a negative impact on outcome.  With stage 2 or above, chemo is the standard recommendation.  But with 1b, apparently the evidence is equivocal, and there is some indication chemo might improve the outcome in 2-3 percent of cases.  He said if I chose chemo, it would be four rounds of Cisplatin/Alimta.  He went through the possible side effects, and asked what I thought.  I said, well, I know my surgeon was advising against chemo, and as much as I'm willing to do whatever is necessary, I'd just as soon skip the chemo if that's a reasonable option.  He  immediately assured me that he was totally fine with that--he thought it was a perfectly reasonable and sound decision.

I asked about what kind of scans they would be doing for surveillance, and he said they were more "intense" than the ones used for screening--more detailed.  So my first scan/followup with him will be in four months (late Nov/early Dec).  I mentioned what my surgeon had said about followups with him, and he said, "Well, you COULD follow up with either one of us, but if there were to be a recurrence, I'm the one who would be handling your treatment," so guess I will stick with him.  

Oh, and I did ask about genetic mutations, etc., and he said none of that has any relevance unless it is stage 3 or greater.  

So overall I feel good about the game plan for now.  If a recurrence happens, it happens and I will deal with it accordingly, not beating myself up for not doing the chemo (which wouldn't guarantee a nonrecurrence, anyway).

Yesterday was a good day.  I had the day off because my birthday was Thursday (I switched days off to get Friday instead), and I also got good news about some expensive repairs I have to have done to my house (won't be QUITE as expensive as I'd feared), met some friends for lunch in Philadelphia, met with oncologist, and then drove up to the Stone Pony for a concert, surviving one song in the pit before deciding my post-surgical body was probably better off further back (punk bands, gotta love 'em).  I've started going to yoga class and walking on the other days.  This experience has driven home how important it is to stay healthy, so I'm trying to put that momentum to work!

[BridgetO]

It's good you have some clarification, even though it's not very clear . It sounds like you're doing a  good job informing yourself and making decisions about your treatment. I've been in that position, though not with my lung cancer, which was 1A. On my breast cancer, I was offered long term estrogen surpressing medication. (Who knew we still have estrogen after menopause--it's produced by fat, and I am well equipped with that.) These aromatase inhibitors were becoming the standard treatment at that time, but after seeing the stats about how much they reduced risk of recurrence and reading a lot about side effects, I decided to forgo them. On my cervical cancer, which was aggressive, stage 3 and a rare type,  one oncologist on the tumor board recommended additioal chemo, more treatment than my oncologist recommended. I got a second opinion, by a doctor who had some clinical experience with this type of rare cancer (there are no studies of it) and opted to "throw the book at it" and my onco agreed to do the additional treatment. 

So, now I'm NED on both those cancers. I don't regret my decisions at all and am grateful for oncologists who respected what I chose to do. I'm a firm believer in science, and I also think that medicine involves some art and intuition both on the part of the doctors and   the patients and can help guide informed decisionmaking.  

Best of luck with you in your path forward,

Bridget

[Tom Galli]

Lexie,

Good news!  No chemo - better news!!!

Bridget,

Absolutely agree medicine is both an art and science.  While First and Second Line treatment may be cookbook (National Standard of Care), Third Line and beyond is dependent on the intuition of the oncologist.  So sensing the artistic qualities of an oncologist may be an important thing to do.  How it is done is beyond me.  I was just lucky to have a medical artist as my oncologist.

Ladies - stay the course.

Tom