New New Plan - 1245433

The EBUS was diagnostic. If the pretracheal node that was positive prior to chemorad is positive now, surgery is off the table. If that's the case, I'm hoping they got enough tissue for mutation analysis, since my Kras positive status is based upon tissue from the left lung. I know it's a long shot, but the process on the right side could possibly be different. They sampled a couple of other nodes as well. Gail, I love that you're still planning holidays.

Much love to all,
Debra

I just got confirmation that my case has been evaluated by Dr. Thomas D'Amico at Duke University. I don't know what the recommendation is yet. This has all been handled by the local lung cancer advocate I mentioned earlier, who boxed up and sent all of my records and scan disk to Duke last week.

I'm hoping I hear from them before my follow up with the local surgeon on Friday, after a full round of Pulmonary Function Testing. My pathology came back on the EBUS: Hilar node positive (heterogenous), Pretracheal node negative (homogenous), and Subcarinal non-diagnostic (heterogenous) not enough tissue.
My oncologist didn't know how much the pretracheal node might affect the decision about my candidacy for surgery, and suggested they might want to try again for more tissue.

Question for the doctors:
Does the fact that the Pretracheal node is heterogenous mean that it is likely also positive for malignancy?

Debra

I actually meant subcarinal node. And I read about a procedure that could be done by Interventional Radiology that can be used to sample that node. (CT guided extrapleural biopsy). Would that procedure possibly yield more subcarinal tissue than EBUS? Is there increased risk of bleeding with that procedure?

Thank you Dr. West for all of your comments thus far. I'm very excited that Dr. D'Amico is involved. I'm very lucky indeed.

With much love and admiration,
Debra

Hi doctors, and thank you both for your responses.

You both mentioned Selumitinib (MEK inhibitor) and Dr. Weiss also mentioned Heat Shock Protien 90 as promising therapies for kRAS mutant patients.

As I understand it, neither of these have reached the point of being available in Phase III Trials yet, correct?

Debra

I saw my oncologist today, at my request. We had the longest, most productive talk that we've had to date. He really understands my reluctance to agree to surgery, and said that some patients would be willing to risk everything for the hope of a cure, but that if it were him, he might react similarly. He said that they are willing to offer the option of surgery, but that they are "not enthusiastic" about that choice. So many things could go wrong.

The surgeon said this...
"The multimodality's conclusion was that surgery may possibly be extensive--the worse scenario is a right pneumonectomy with a possible small amount of gain."

The oncologist agreed that another brain scan would not be out of order, so we are scheduled for that next week, and he knew who Dr. D' Amico is, and really welcomes his input (my trip and appointment are at the end of the month).

He is not worried about the delay, in fact said it was an opportunity for the cancer to "declare itself" in terms of progression, so maybe the delay is a good thing. We will repeat PET/CT after my second opinion appointment and then I will need to make my final decision. He speculated at around 18 months to 2 years without surgery and assured me there are many options to explore. He also confirmed that I have a good understanding of what is going on and that no, I'm not exaggerating the situation in my head. And he gave me a great big hug... a first. It was nice.

I keep thinking about Stephanie (ts) and how she wrestled with the decision to stop treatment. Absolutely numbing.

Thanks and much love to all of you,
Debra

Myriam, thank you, though I don't feel very courageous at all. :(

Dr. West, I thank you and this site for my understanding. Without GRACE I would be so confused. Thank you for putting up with me. I'm comfortable with the waiting. I presented with bilateral multifocal disease, technically could have been called a Stage IV, but was given the benefit of the doubt. As you predicted, this has been an indolent process, so I feel that I'm already defying statistics at 2 years.

You also warned me about the concept of playing "Whack-a-Mole" and that explanation is why I am so insistent now that we use every available resource to try and confirm (to the best of our current ability) whether this process is truly confined to the one hilar node. I understand the very real possibility, even probability, of this popping up somewhere else after surgery, which is what makes the decision so hard.

“These are the moles that make molehills, and in the game, they pop up quickly from holes as a challenge of someone's reflexes to hit them quickly, before they pop back down. No actual moles are harmed in the game...

Interestingly, the entry notes that we aren't the first people to describe the challenge of staying ahead of a rapidly evolving problem as playing a game of whack-a-mole:

"The connotation of "Whac-a-mole" or "Whack-a-mole" in colloquial usage is that of a repetitious and futile task: each time the attacker is "whacked" or kicked off a service, he only pops up again from another direction."

-Dr. West”

http://cancergrace.org/lung/2009/02/13/molecular-heterogen-pennell/

Thanks Laya and Janine for always being there. All of my GRACE family is so appreciated, and your positive energy is palpable.
Much love,
Debra

Thank you Janine. I will get the results late Friday afternoon, and will post as soon as I get home. I'm totally asymptomatic, just covering every base as I weigh the risk/benefit of surgery.

I had to reschedule it to a later time so that I could get the "big" machine (the donut). I get too claustrophobic in the tube. The one time they scheduled me for the tube they had to stop the test, let me out, call for approval to medicate me, sit me in a corner to wait for the medication to take effect, then re-start the scan. I knew I would have a hard time but was surprised at how shaken up I got (literally shaking). Funny, things like elevators don't bother me, but that tube made me freak out! :-P

Thank you so much for noticing the date and sending your support. It means the world to me. My GRACE family is the best.
Debra

Brain scan was clear. That's good to know.

Blueskies, I can't believe so many mets showed up all at once like that! I don't know what to say, You must have been so shocked. But you sound like you've bounced right back as usual and are coming up with a plan. I don't think we are alike at all. I've had a cakewalk compared to so many Gracers! My worst struggle has been the emotional toll. Just when you think you have a handle on things, POW! Here comes another surprise. You're all heroes in my eyes, and I couldn't have stumbled upon a better community. I love you all.
Debra

Thanks everybody. I got my music on and my mojo workin'!

Hard to believe one little lymph node could be causing so much trouble!
Debra

The following is not an update, but some thoughts.

Below is a quote from another thread by Dr. West that struck a nerve (in a good way)...

" the only thing that knowing about metastatic recurrence earlier vs. later provides is an opportunity to know (perhaps worry, perhaps prepare — perhaps both) and to start treatment associated with side effects before there are any symptoms to treat."

These pearls, which Dr. West so prolifically offers, have been my source of strength throughout my experience with cancer. This particular quote gives, if you will, second witness to the validity of my oncologist's tendency to withhold treatment, to watch and wait.

I am asymptomatic. My disease has demonstrated itself to be indolent. My oncologist does not want to "use up" opportunities that may produce welcome results later in the course of my disease. He will not put me through the challenges of treatment sooner than needed just because I have a hard time dealing with "doing nothing."

He's right, and Dr. West is the one who consistently puts that opinion in terms that make the whole thing make sense. It is hard doing nothing. And it is hard for friends and family to understand. But the trick is to not sit around waiting for the other shoe to drop, but instead get as much life in as possible during the times when you're not being challenged and saddled with side effects.

And this is also a great time to plan. Get your house in order when you feel good and your head is clear.

Anyway, thank you Dr. West, for making this whole experience make more sense. I don't think I would be doing very well right now if not for you and this site, and the great people who give their support.

With love and respect, always
Debra

We're all packed and ready for the trip to North Carolina tomorrow to get a second surgical opinion from Dr. Thomas D' Amico. I'm very fortunate to have this opportunity.

In the past I have seen discussions about lung cancer and blood clots, and in particular there was a comment from Dr. Weiss recommending that patients with no history of clots should move about the cabin every hour or so when traveling by air.

I have no history of clots, and am not traveling by air, we're driving, but I was wondering if we need to make extra stops along the way to get out of the car and walk around a bit, or take any other precautions? I apologize if this is a silly question.

Debra

P.S. My DIL would drive the full 9 hours non-stop if it were up to her!
Off topic... who's got the best BB-Q in the research triangle area?