I have a 1.3 cm GGO lung nodule that has not changed size but has shown up and down SUVs (went from like 12 down to 5 after low dose chemo for radiation for another tumor and is up to 6 now) since it first showed up on a PET scan at the start of cervical cancer treatment.
The community hospital doctors who did most of my c-cancer treatment say it's cervical cancer that jumped into my lymph nodes and lungs with no local spread in the pelvis.
The university medical center doctor who made the initial dx and did brachytherapy on the initial tumor says it was a curable Stage I (gone for one year and counting). He says the lung tumor is a new cancer that could be curable with surgery,
The only good biopsy I got was on the cervix, so no confirmation about any lymph node spread. An inconclusive needle biopsy of the lung showed BAC adenocarcinoma, but only AFTER I complained to the hospital administrator and Joint Commission about them refusing to send the sample to a better lab for a second look.
Short version, I have been living the past 15 mos with a lung tumor that is not growing. The only thing doctors agree on is that I should have a lobectomy. Now, to me that makes no sense if I have Stage IV cervical cancer. And I'm not sure that's the right thing to do if it's lung cancer. And it's absolutely not the right thing to do if it's chronic histo or something benign.
I put the question to four oncologists, a pulmonologist and my internist, and all declined to do any further testing and essentially told me I was a suicidal maniac for holding out on the surgery.
Am I? I feel like I don't have a leg to stand on in the doctors office. I even talked to the Cancer Society about finding a patient advocate, and they said I just needed to go get the lobe out.
I strongly believe less is more and absolutely don't want to have that surgery as a diagnostic procedure or to "cure" a cancer that would take 20 years to become life-threatening.
Reply # - January 1, 2013, 09:57 PM
Reply To: BAC, met or neither?
bamabelle, your name suggests you're from Alabama and have a stake in a game next weekend.
You're in an awful situation. I'm so sorry.
There's a conversation on another thread that is a lot like yours and I think it will help. http://cancergrace.org/topic/who-should-i-trust
You're smart to be asking these questions. Feel free to keep asking.
The best of luck,
Janine
Reply # - January 1, 2013, 09:57 PM
Reply To: BAC, met or neither?
It may be slow-growing BAC, but it sounds like the evidence doesn't particularly suggest that this is stage IV cervical cancer. I don't think it makes much sense to hold off on surgery on the presumption this must be or even likely is stage IV cervical cancer that will limit your survival.
I am personally someone who actually made the point that there isn't a clear reason to rush into a surgery for a slow-growing early stage lung cancer, particularly an early BAC, if there is evidence that it has demonstrated a very indolent pattern of change over some duration of follow up, as I describe in this video:
[video]http://www.youtube.com/watch?v=XFCwsytiDuU[/video]
However, even though I have that same mindset of "less is more", I favor that approach far more in someone with some competing threats to survival over the next few years, but not in someone who is younger, fit, without other significant medical problems. So in someone who is debilitated, has significant heart disease, and doesn't get out much at 78 but has a slow-growing BAC, I would have no enthusiasm for reflexively doing surgery just because that's the default answer of what is done. However, in a 55 year-old who may very well live another 15-30 years or more, that's a lot of time for the cancer to change its behavior and potentially cut that person's survival short by many years compared with what how long they could otherwise live. In other words, I typically favor doing the curative surgery on someone who might well have their survival limited by even a slowly changing lung cancer because, even if it takes years to a decade or two to become a threat, they've got another 3 or more decades in them otherwise. Also, the surgery can often be done in a minimally invasive way that is unlikely to be very difficult to recover from, and it may even be feasible do a wedge resection, as opposed to a lobectomy, for a small indolent cancer like a non-invasive BAC.
Good luck.
-Dr. West
Reply # - January 1, 2013, 10:24 PM
Reply To: BAC, met or neither?
Wow, thanks for the quick replies.
I've been being told I was a goner since I landed in the ER with a massive, bleeding cervical tumor ... I guess some doctors can't get their heads around the probability that a 7 cm c-cancer somehow remained in situ. Didn't even try to biopsy the lung nodule until three months I think after main tumor was confirmed gone.
So I have been approaching my health care like an octogenarian would for the most part. Idea of spending any part of my last few months or years in the hospital just horrified me.
But it's a year since they confirmed they got all the cervical cancer, so the Stage I docs are looking pretty smart. I'm 40 and don't aspire (or have the genes) to live an awful lot longer, but I am fairly fit and had a real easy time with cancer, chemorad and the effects and damage of those.
I guess it's time to capitulate. I was really wanting to hold out and force a better biopsy or testing to rule out benign conditions. I'm prepared to be furious if it's not cancer ... but I guess a third of a lung is a small price to pay for being sure about what's going on?
Thanks again for your response. I guess it's obvious that your articles about dealing conservatively with BAC were pretty influential. Watching docs treat old and terminal patients to death just sickens me, and it's been really terrifying to contemplate a step that could start down that road.
Reply # - January 2, 2013, 10:03 PM
Reply To: BAC, met or neither?
I understand, and just today I met with a patient who was also quite wary about surgery in a remarkably similar situation. However, as someone who doesn't reflexively feel that surgery is always the way to go, I hope it's helpful for me to say when I do think it's quite appropriate.
Good luck.
-Dr. West
Reply # - January 3, 2013, 04:58 PM
Reply To: BAC, met or neither?
Absolutely!
The original (now ex thanks) oncologist who referred me for surgery did so with inconclusive biopsy results and absolute certitude that it was metastatic cervical cancer. That didn't add up to me and sent me on a nearly yearlong quest for better pathology and doctors whose approaches made sense. I think I was right to put it off till I at least racked up some second opinions and saw that the other cancer was staying away.
That said, the original doc could be right. Forgot to mention a few lit up lymph nodes in the throat area that I guess could be either of the cancers or, hopefully related to an infected wisdom tooth. Doctors down here don't seem real keen on getting lab samples, so the dentist who found the infection could have been seeing cancer for all I know. The scan report says metastatic cervical, but if they can tell that from a picture, they should win a nobel prize.
So I guess that could be a game changer. Scan was done before the holidays, so I'm left to stew about it with no doctor input until they get back into the swing of things.The only good biopsy I've had was on the cervix, so doctors are just guessing about the other sites that are popping up.
After a year of having university medical center doctors calling it Stage I cancer and all the ones in my town calling it Stage IV, I'm good with uncertainty and OK with whatever happens next. Felt good and kept to business as usual at home and at work from the getgo, so I have pretty much lost interest in being a cancer patient. My only remote concern is staying out of the hospital if they find for sure that cancer's gotten loose in my system.