LexieCat
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Posts posted by LexieCat
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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
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Hi, Lori, and welcome!
I'm fortunate enough to be early stage (there's still some debate about the pathology evidently, but appears to be 1a), so I have no experience to share re targeted therapy, but just wanted to welcome you and wish you the best with your course of treatment. Sounds like you've got some promising strategies to call on--will look forward to hearing more good news!
Teri
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Hi, nan,
I just had similar surgery--fortunately, I was able to get the VATS. I'm sure that larger incision of his has to be painful. I'm almost completely recovered nearly three weeks after my surgery.
You might want to try to encourage him to work with a nutritionist to try to get his weight down. I had been working on weight loss when I was diagnosed but had lost about 42 pounds (on purpose) before that happened--I have no doubt losing the weight helped speed my recovery. If he can drop some weight and get a bit more active that would probably do wonders for his overall health, including the diabetes. Stage 1a is good news, as these things go--but the other health problems from the weight can be as lethal as cancer.
Glad you're here--there are some very kind and knowledgeable people here!
Teri
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Well, I just googled it, and it sounds like a bronchogram can be caused by a number of lung conditions. How long does he have to wait for a PET scan?
Apparently there are also some lung cancers out there that are so slow-growing that they are not considered life-threatening. Is there any talk about a biopsy?
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Hi, Sandra,
I just had a lobectomy for a nodule on my lung (upper left lobe) that turned cancerous. I'm sorry you have to go through a SECOND battle with cancer. Keep your fingers crossed, though--the PET scan may be reassuring--it was in my case. The ONLY thing that lit up was the one bad nodule. I'm hopeful that the surgery will be IT for treatment, but will be meeting with an oncologist next week to discuss.
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Just click here: http://forums.lungevity.org/index.php?/forum/3-introduce-yourself/
Then click the link on the right (it's orange on my browser) that says "start new topic"--that should do it!
Teri
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I know--it can be overwhelming when things go fast. For me, from the first suspicious CT scan to my surgery was only about three weeks, and here I sit JUST over a month from that first suspicious CT and I'm almost completely recovered from surgery. It's actually a good thing when things go fast, though--you don't want to give these things more time to grow/spread, and waiting with nothing happening is actually a lot more stressful. That said, even though I had no shortness of breath before any of this (and no medical/physiological reason for it), I found myself taking shallow breaths and feeling like I was forcing myself to do that for several days before the surgery. I never had a bronchoscopy (probably due to the location of my tumor), but I think they will get a lot more information from the PET scan.
Hang in there!! How is it going with the quitting smoking? No judgment here--I smoked for decades.
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Yeah, that sounds pretty odd to me. If I had to guess (legal background), the bit about your not being "allowed" to be the caregiver has to do with payment of insurance benefits. IOW, you couldn't be paid by the insurance company (or whoever is paying for the care) for providing the care--it would have to be some third-party provider.
Is there a patient navigator or anything like that at the hospital? From what you've described, I sure wouldn't want to deal with that bunch that showed up.
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Hey, Pearl,
Sending you good thoughts/vibes/positive energy this morning as you go for your biopsy. I hope you get good news, and that even if it turns out not to be as good as you hoped, that you will get a plan to deal with this in place. I'm so glad you went ahead and got everything going. When I had my surgery on the 10th, I learned that the tumor had actually grown in the time since my PET scan a couple of weeks before. Not enough so it really changed anything for me, but still--it pays to get moving on this stuff in as timely a fashion as you can.
I hope your husband is more supportive to you, but even if he's not, we all have your back, here. Please keep us posted.
GOOD LUCK TODAY!!
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I don't have experience with chemo (either as a caregiver or for myself), but I just had a lobectomy on July 10th. The minimally-invasive techniques are FANTASTIC--I have three tiny incisions. I probably would already be back at work but I had a minor complication of an air leak that caused my face/neck/chest to swell up and I had to go back in with a chest tube for a few days. THAT was tougher than the original surgery. I would have been fine just having my neighbors look in on me if it weren't for the re-admission, but by the time I got out the second time, I was VERY happy to have my cousin offer to come out and take care of me for a few days. She just drove me on errands/appointments till I was cleared to drive (which was as soon as the chest tube was removed), and helped with some housework and kept me company. I was going a little stir-crazy by then.
If your mom is putting on the game face, roll with that. The one thing that stresses me out is seeing the furrowed-brow, worried faces. I'm grateful my family and friends have followed my lead. It IS scary, for sure, but it sounds like your mom copes with things the way I do. So to the extent you can support that positive attitude, you will be helping her.
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I don't have experience with the chemo, but I do know that fluid retention adds a TON of weight. I'm just now dropping the pounds I put on after surgery on the 10th. I have had a good appetite and was on a weight-loss regimen when I was diagnosed, but I know I didn't eat enough to gain all that weight. The way it's dropping now, I'm reasonably sure I'm just losing the fluid retention from the surgery. Hopefully your edema passes soon, and takes the weight with it as you lose some of the fluid.
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Hi, Sherry,
I actually DID just have a lobectomy as a result of cancer found during screening. There are screening protocols, and depending on your husband's age and smoking history he might be eligible. Screening requires that you be over 55, have at least 30 "pack years" (i.e., one pack a day for 30 years or two packs a day for 15 years etc.), and that you either currently smoke or have quit less than 15 years ago.
I know how scary it is, but there are lots of folks here who have survived for many years--medical advances are happening every day, too. Try your best to take it a day at a time. One of the challenges for me was to learn enough to be properly educated without reading ALL of the worst-case scenarios that may be highly unlikely and serve only to freak you out.
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Oh, thanks for asking, Lydia.
It went reasonably well, with a slight detour to deal with a pesky bout of post-surgical crepitus:
The bottom line is I'm still waiting on the full pathology report, but it was an adenocarcinoma, and lymph nodes were CLEAR. Got a followup appointment with surgeon and oncologist next week--right now looking like no further treatment but we'll see what oncologist says.
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Got a call this afternoon to schedule my appointment with the oncologist (geeze, you know you're getting old when all the docs start looking like Doogie Howser!). Meeting with the oncologist on Friday, 8/4, the day after my birthday. My office gives us our birthdays as a holiday, but I am planning to go to a concert at the Stone Pony later that afternoon, so I'm taking 8/4 off instead of my actual birthday. Also meeting a couple friends for lunch before my appointment, AND supposed to meet with the engineers planning to fix a serious foundation problem with my house--looks like it will be an eventful day!
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So glad you're done with that, Susan! Really sounds like no picnic. Wishing you a quick recovery.
- Tom Galli and Susan Cornett
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Thanks, Tom,
I'll definitely be asking those questions. I have access to a subscription to "UpToDate" which provides reports and compilations of research for the medical profession, and one recent report I read said that adjuvant chemo for stage 1a was actually found to result in a decreased survival rate. And as I read the report, it sounds like the evidence regarding 1b is equivocal.
I should be able to learn a lot more at my appointment on 8/1 next week, and hopefully I can have a meeting with the oncologist to discuss these issues. I'm hoping to find out then whether there is more detail available regarding genetic markers, etc.
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Apparently the reason the pathology report still is not available is that the pathologists are trying to "reconstruct" the wedge resection the surgeon took immediately prior to the lobectomy. Surgeon says he understands why they need to do it, but that HE knows what he did and it doesn't affect the outcome of the surgery. So although the complete pathology report is not yet complete, I do know now that it was adenocarcinoma, that it was "deep," that it had grown significantly since the PET scan, and that the lymph nodes were all clear. And, of course, based on the PET scan, no evidence of any metastasis.
I have an appointment on 8/1 and in the meantime the surgeon will be meeting with their "tumor board" and also bringing in an oncologist to recommend surveillance protocol going forward. He says chemo at this point could MAYBE add 2% to overall survival odds, so he didn't recommend any. He thinks my chances are excellent, and my lung function is great. So it looks like, barring something unforeseen, this really WILL be "one and done"!
I feel truly like I just dodged a bullet. I had ZERO symptoms and if it weren't for the screening program, god only knows how bad this would have gotten before it was discovered.
I'm feeling pretty darned good today. My cousin had come out here on Wed. to help me out and take me to my appointment, but I felt so good after Friday's appointment (chest tube removed, crepitus virtually gone) that we ran around and did errands--including a mani-pedi for each of us! I have a bit of achiness (like I pulled an upper back muscle), and up until this morning (so far) a slightly annoying cough.
It's weird, though, I'm still sort of sorting through various emotions--I'm so grateful not to have to battle this with all kinds of therapy but at the same time there's almost an element of survivor's guilt--there are so many brave souls on this forum and everywhere who have to go through what I was spared. I know how fortunate I am, and I'm so grateful for the inspiration and support everyone here has provided. It all helped going in to know that others have gone through it and come out on the other side. And, of course, none of us knows what the future holds. So I will be happy for however long my good health lasts and do my best to keep it going!
Teri
- Susan Cornett, Mally and Steff
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Hi, there,
I'm a big believer in e-cigarettes in preference to smoking. They are the ONLY things that have kept me off cigarettes for the past year and a half (over a year before cancer diagnosis). I've told my doctors about my vaping and they list me as a "former" smoker. I'm convinced that my lung function is far better now (just had lobectomy last week) than it would have been had I not switched. Depending on where you purchase the e-liquids, the ingredients are the same (except for the nicotine) as that used in inhaler-type devices and in the "fog machines" used at concerts. I noticed a huge improvement in my breathing/lung function since switching.
That said, once I was diagnosed I researched a bit more carefully, and though there is universal agreement that nicotine isn't itself carcinogenic, there is theory/speculation that nicotine MIGHT provide a more hospitable environment for cancer cells once they have become cancer cells. IOW, it might encourage growth. Given that, I am in the process of tapering down to zero nicotine. I've gone, in the past three weeks, from 1.8 percent e-liquid (equivalent to a very light nicotine cigarette--without all the harmful products of combustion) to .6 percent. I should be down to zero in a couple more weeks.
So I would encourage your mom to discuss it with her doctor, and maybe suggest she research it for herself. If she absolutely would be smoking if e-cigarettes were not available (and let's face it, the stress of a cancer diagnosis is exactly when it's hardest to quit a deeply ingrained nervous habit), then I'm not sure it's your place to tell her doctor. Best to express your concern but keep the dialogue open.
Teri
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FINALLY got cut loose for the SECOND time this afternoon. Almost all of the crepitus is gone, though a touch of "crunchiness" is still detectable at the bottom of my neck and in collarbone area. They sent me home with a chest tube (one of the skinny ones) in place, along with a pneumostat that will collect the fluid and allow me to drain it off as it accumulates. It also allows for the tube to be pinched off (as a "trial" of removal), to ensure that swelling has stopped even if no further draining.
This second go-round was WAY more unpleasant than the original surgery--instead of the nice, new wing of the hospital, I was in the old one, where I shared a room with an elderly lady who was very nice but had the TV on ALL the time. I had to have two chest x-rays today before the doc was satisfied it was safe to send me home. I think we were totally on the same page that the third time might be the charm, but was something to be avoided if humanly possible. In any event, as bad as the swelling eventually got the first night back in the hospital, I'm VERY glad I didn't postpone going back in.
So my review of my surgical experience is mixed--I'm WAY certain that even with the complication it was less onerous than the "open" thoracic surgery. If it weren't for the crepitus, which apparently isn't all that common--at least not to that degree, it would have been virtually a piece of cake. I'm breathing quite easily now, and trying to stick with Tylenol for pain, since the oxy wound up making me sick to my stomach.
Doc promised he'd call with the path results as soon as he gets them this week. He's hoping for tomorrow. Fingers still crossed!
ETA: As further evidence that the standard of care was *ahem* a bit less on this go-round, I was walking out of the hospital when the security guard gave me a funny look and asked, "Are you SPOSED to have that thing on your hand?" They had forgotten to remove my IV port! By that time I'd been stuck with so many things I didn't even notice their failure to remove it!
- Tom Galli and Susan Cornett
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So shortly after my last post I was re-admitted with my neck, face & chest all swollen up. They put in a chest tube and I'm slowly deflating. That's what I get for describing the surgery as a breeze. Waiting for surgeon to come by, but expect I won't be going home for another day or two.
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Thanks, all--well, it's hard to tell whether the crepitus has gotten worse, though it doesn't seem to be getting any better. I have a visiting nurse coming to change dressing today so I can have a shower, and I'll see what she thinks. I don't wanna have to be dealing with a possible re-admission on the weekend, so if I decide to go back to have this dealt with, I'll do it this afternoon. My surgeon said he was releasing me as I was then ONLY because he trusted me to call if it got any worse. Judging by some of the images online about the severe cases, I certainly don't want it to get to that point. I can hear the "crunchy" sounds every time I clench my jaw, and I look like a chipmunk with the mumps. Would be annoying to have to go back but best to have it looked at.
Oh, and in other news, I took an oxycodone last night but today took only Tylenol and pain is very manageable. I'm doing my breathing exercises and I'm coughing easily. So it's just the crunchies that are bothering me.
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Hi there! I'm pretty new, myself--just had lung surgery a couple of days ago and confirmed tumor was cancerous, but won't have details on type/stage till pathology reports come back next week. So I'm not much of one to give helpful advice or even share info at this point, but there are some awesome folks on this list who have been dealing with this stuff pretty successfully for a LONG time.
Just wanted to greet you and say glad to have you here.
Teri
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Well, surgery turned out to be more or less a breeze--very little pain. But last night I told nurses my glands felt swollen--nurse advised doctor, and I'm told it is "crepitus"--air bubbles that work their way up as a result of air leak. Surgeon saw me this morning and told me it should resolve on its own but if it gets worse to come back and they might need another chest tube or something. I'm still a bit fuzzy from pain meds, so not a hundred percent sure on what he said they would do. Apparently it can cause problems if it travels too far up or becomes too difficult for swallowing/talking.
Anyone else have that experience?
I have followup with surgeon on Tuesday, and he says we should have pathology results by then, for formal diagnosis/staging.
Overall, though, feeling pretty good. I'm glad to have the cancer out--now have fingers crossed for good pathology report. Hoping for 1a!
Small cell
in SCLC GROUP
Posted
Hang in there, you two--your husbands are lucky to have you. Make sure you keep taking good care of yourselves!
Teri