kdaru

Stable is good. Hope you get good results from the Tarceva.

We're baack! (sorry, sleep deprived and a little goofy right now) All your prayers helped, b/c we got the best outcome we could have hoped for - the mediastinoscopy was negative, the left lower lobe lesion turned out to be a granuloma, and Dad got his right upper lobectomy. We got the final path today - cancer in the RUL lesion as suspected, but nothing in his lymph nodes. He's potentially curable! Surgery was three and a half hours long, but Dad did OK. He talked to my mom normally on the phone this morning, but when we went to see him in the afternoon he was pretty goofy. I'm hoping it's just a combination of anesthesia and pain medication - he's got an epidural drip for pain control with fentanyl. The nurses said he walked down the hall with PT in the a.m. He's got chest tubes in both sides, poor guy, but the one on the left should come out tomorrow. He's coughing some but can't really muster a strong cough yet - no surprise since they sliced and diced both sides of his chest. I'll tell him the pillow idea tomorrow. Any other suggestions of things to watch for or things to make him more comfortable? I'm happy the surgery went well but I'll be happier still when he comes home safely.

Dad goes for surgery tomorrow - got cleared from both the pulmonary and cardiac standpoints. A second path opinion from MD Anderson confirmed poorly differentiated NSCLC. Since the main uncertainty right now is his staging the surgery tomorrow is going to involve mediastinoscopy. If that's negative they'll do a wedge resection of one of the questionable lung lesions to see if it's cancerous or not. If all is negative, they'll cut out his entire right upper lobe, the one which has the definite cancer in it. So we're hoping all is negative, and that he gets the lobectomy, although that would paradoxically mean a longer and more complicated surgery. Tough for an 82 year old guy. The surgeon gave us 50/50 odds for having a potentially curable cancer, which is doctor-speak for "I have no idea so I'll split the difference". Funny, I almost don't want the surgery: this way we have hope; after the surgery there will be no doubt, one way or the other. So any prayers and good wishes you can spare for my Dad will be appreciated.

Thanks, John. You summed it up in a nutshell - we are trying to determine the exact stage, depending on whether the AP node and LLL lesion are cancerous or not. A repeat CT done after one cycle of chemo showed no significant change in the RUL lesion and lymph node, but significant progression and cavitation of the LLL lesion, which intensified suspicions that perhaps it was not cancer. I'm all for the surgical plan (heck, I pushed for it), but I want to make ABSOLUTELY sure that that RUL is cancer before subjecting my Dad to a lobectomy. The original path report was somewhat vague - just said NSCLC, poorly differentiated. Given Dad's history of TB exposure, and atypical mycobacteria in the sputum, I want to make sure we're not dealing with some weirdo reaction to an infection.

Hi, all. Saw surgeon yesterday. Dad's pulmonary function testing was good, but his cardiac stress test was problematic - he couldn't walk far enough on the treadmill and did not respond to the drug they usually use to bring up the heart rate. So the surgeon is covering his butt with a cardiology consult. We're upset, but I see his position. Surgery is tentatively scheduled for the fourth of January, pending cardiac clearance. The surgeon is planning to do the whole thing in one fell swoop - mediastinoscopy, bx of left lower lobe lesion, and if all is well, resection of the right upper lobe. Because of some things oncodoc and others have said, I want to get a second opinion on the pathology, to make absolutely sure we're dealing with cancer before we cut out half my Dad's lung. How do you arrange this and where are the good places to send it? Oh, and how long did it take? I don't want to delay surgery if I can avoid it.

Sorry for not posting in a while - lots to take in and not feeling very social. Upshot (after about a million doctor visits) is the sputum culture did NOT grow out tuberculosis but rather a less virulent cousin, "atypical mycobacteria". These bugs are not a danger to those with competent immune systems, so Mom and I should be OK, no need for chest xrays or treatment. OTOH, Dad's immune system is suspect b/c of the cancer and the chemo, so COULD be a problem for him. So, off chemo. The pulmonologist wanted to do a bronchoscopy with trans-bronchial biopsy of that left lower lobe lesion, because a culture grown directly from the infected tissue would be much more sensitive than a sputum culture. I was leery, though, because the lesion was very peripheral, a location that traditionally is not very accessible for a bronch. So we held off until we could see the thoracic surgeon again. Surgeon wasn't enthused about the bronch either, and instead wants to expedite the original plan of surgical staging with mediastinoscopy and wedge resection and/or biopsy of that left lower lobe lesion. That way we kill two birds with one stone - find out what that LLL lesion is, and stage the right upper lobe tumor at the same time. If the LLL lesion is an infection, which we're hoping it is, the bug can be identified and appropriate treatment started. Whew. Lots up in the air, but at least we have a plan. Dad goes for PFTs and a cardiac stress test next week, to make sure he can tolerate sugery if he turns out to be a surgical candidate. We see the surgeon again week after that. Poor Dad was hoping for no more doctor visits or tests until the new year, but I'm happy that they're moving things along. Mayo definitely likes to take your money, but it's a huge advantage to have everything in one place.

Many thanks for your replies, every one of them was helpful. It's funny, I never think of my folks as "elderly". Sure, they're old, but they're MY parents, and therefore in my mind the laws of aging do not apply. But of course they do. I've been going with him to Dr.'s visits, and it does seem to help. My role as surrogate medical advisor is partially my fault - I have a medical background, and am loathe to admit ignorance. I think I need to admit that I don't know, and redirect them to talk with the experts. Deep breaths...

Cancer affects EVERYBODY. The one who has it, the ones who love them. There are days where I just pray for the family to not fall apart, because we all just start hissing at each other like tomcats in a bag. You're doing the right thing, seeking an impartial third party. The more emotion you can burn off in the therapist's office, the less you will have to carry around at home.

Probably just missed you oncodoc, but here's a question for when you get back. My Dad is 82, former smoker. Incidental CXR showed RUL lesion -> CT/PET -> one solid nodule RUL, two smaller cavitated nodules in RUL and LLL, and one lymph node in the aorto-pulmonary window. The solid nodule in the RUL was biopsied -> NSCLC. Because of the CT appearance, Dad was diagnosed as stage IV. Dad got one cycle chemo (carbo/Taxol), repeat CT six weeks after first -> slight shrinkage RUL nodule, but significant growth LLL lesion with interstitial pattern and another small cavity forming. Sputum sample is now growing out TB. My question is, how does this affect his staging and treatment?

So, Dad had a CT last Tuesday, and we saw the oncologist last Fiday. The CT showed no change or perhaps slight shrinkage of the main nodule in the R upper lobe, but significant growth in the left lower lobe lesion. But the latter was different-looking, not a nodule, but more webby, with two small cavities inside. The surgeon had told us it was funny-looking before, hence the plan to do two cycles of chemo and then invasive staging with mediastinoscopy and possible open biopsy of that LLL lesion. Now even the oncologist thought that the rapid growth and appearance was more suggestive of infection or inflammation rather than cancer. So we planned to finish the second cycle of chemo, get another CT, and see the onc and surgeon again at that point. That was Friday. Today the onc's office calls, just as my Dad is leaving for chemo. Chemo has been cancelled - Dad's sputum sample grew out tuberculosis. I don't know if I'm on my head or my @ss. On the one had, it's sort of good - lung cancer + TB sounds better than lung cancer, stage IV. OTOH, it really complicates his treatment. He'll have to go on TB meds, I don't know how long it will be before he can get chemo. I don't even know how this affects our plan for surgical staging - I would think no one will be in a rush to operate on someone who's harking TB bacilli. So everything is up in the air. We see an infectious disease guy and the surgeon again on the 30th. I'm hoping that we'll be able to develop another battle plan, and won't have to delay his lung cancer treatment too much.

Nothing I can say. You are a wonderful caretaker for Ahmed, and all of you are a tremendous example. Prayers for continuing strength for you and your family.

You both are my heroes - like shinyladysue, I always draw encouragement from your posts. Praying the PET brings good results and that you both enjoy a wonderful holiday season. Katie

You've made heroic efforts for your husband - I don't see how anyone could have done more. Praying he gets the care he needs.

What an odyssey! Glad they got that tube out and you safely home. I can look at your picture and imagine you shuffling around Kroger with a tye-dye shirt and hospital slippers. Rest up and get better soon. Katie

Decided to post this on the caregivers board, as this is something y'all probably have experience with. Dad has been diagnosed for less than a month, and he's going through some awful mood swings. One second he's in despair ("I'm a dying man!"), the next he's talking about taking out a monster loan and expanding the family business. He flies into a rage over little things, and I'm afraid he'll make some bad business decisions. Now my rant: He refuses to come to this board, does no research on lung cancer, leaves it all to me. If he has a side effect from the chemo, he doesn't call his doctor or nurse, he comes to me to fix it. Well, what did the information packet say? He doesn't know, he didn't bother to read it. Every day it's a damn litany - it hurts if I press here, and I was tired this morning but not now, and I was nauseated three nights ago, and there's this spot on my arm and my throat hurts and and I'm gaining weight and tell me what to do. Then my mother comes in and it's Dad's losing weight, and he was complaining about his stomach hurting and he didn't sleep well last night and what foods should I cook for him and this booklet says apples are no good and he ate an apple today and I'm so worried about our future and what should we do? I feel like yelling, "I don't KNOW what to do. If I knew I would be DOING it now, wouldn't I?" I'm feeling pressured, and frankly, resentful. How can I care for him over the long haul if I'm losing it already? Guess I'm venting more about me . I can understand his mood swings, have brought up mood stabilizers but he won't hear of it so I guess I'm stuck there. But how do I handle my own moods?

Glad you found these boards, this is a great source of information and support. My Dad is also newly diagnosed, and his mood is all over the map. So I can relate.

What a beautiful memorial, don't think it could have been done any better. Sorry for your loss, praying for your family.

Wow, what a shocker. I can see how it could happen - cells don't come with little labels under the microscope ("lung", "breast", etc.). Cancer cells in particular can get very distorted-looking, and it's possible to make a mistake. But to go through surgery and all that treatment.... Your onc sounds like a good guy, I admire any doctor who shows an inclination to think. Maybe this will turn out to your benefit. Praying for you.

Prayers for you and your husband - hope thngs work outfor the best.

Saw an interventional radiologist today to see if my Dad was a candidate for radio frequency ablation. In a word - no. Because my Dad has >1 lung lesion, the radiologist felt that the benefits would be outweighed by the risks (esp.pneumothorax). Furthermore, he said they can't really get at lymph nodes (my Dad had one mediastinal lymph node light up on his PET). Disappointed and unsure what to do next. Dad gets his third dose of chemo this week to complete round one. Next week he goes in for repeat scans. He's still feeling good, gets tired on day 3-4 after the chemo, but o/w is doing good, minimal nausea. Not sure what to do next, praying for guidance. On the one hand, want to treat this cancer as aggressively as possible; OTOH don't want to trash his quality of life. So I feel like I'm walking a tightrope. Playing with the idea of going to Tucson for a second oncology opinion, get somebody else's take on things. I COULD start looking for a gutsier radiologist to do RFA, but not sure that's the right way to go. Any thoughts? Prayers appreciated.

Wonderful tradition, marking the years since diagnosis. I hope the years turn into decades for your mom. Katie

So sorry to hear of the loss of your dad. Katie

A beautiful letter; I cried too.

That's horrible. Have nothing to add to the already excellent advice you've been given. Just want to say I'll be praying for you and your husband (and that God kicks his former employer in the butt). I never realized, before coming to this forum, just how damaging is the attitude that "you asked for it" when it comes to treating lung cancer. We all have bad habits that can potentially come back and bite us in the a$$. Just because someone's luck still holds, is no reason to look down on someone whose luck ran out. The good LORD is showing me just how evil some of my past attitudes were, and I'm sorry. Learning a lot from you guys that has nothing to do with cancer.

Good luck with your PET, hope nothing lights up. We went down this road a month ago, when my Dad was diagnosed. It really helps to take things one day at a time, and deal with problems only as they arise. Katie