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how do you find the mets.dr. says wait for symptoms

nanaof7
Posts: 127
Joined: Feb 2009

what kind of after care are people getting to find the mets? my dr. is only do chest xrays, what symptons do I watch for, since he told to wait for symptons.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

nana, I am not sure from your post whether the doctors suspect or even know about mets.

If you are asking this because you want to be sure that there is no metastasis, I would advise that you should be getting CT scans on a three-month schedule for at least the first year following diagnosis and treatment, after which the schedule is moved out to six months unless something suspicious pops up that indicates to OncoMan that you need closer scrutiny (and thus, back to the three-month scans, at the very least).

In my experience, each of these scans should be followed rather shortly thereafter with a visit to OncoMan, where you should have lab work done that might have tell-tale signs of further cancer and, at the very least, confirm that all is well in the areas they are most concerned about. At this time, too, of course, OncoMan should give you the results of this most recent scan.

And so on. Since you have been a member since February of this year, you are probably familiar with that regimen.

So: if you are suggesting that mets are there somewhere in their opinions and that they are doing nothing (or very little) to find them, I have little to offer. I have been lucky in that regard.

I can tell you that once cancer was discovered in my lung (I am a previous survivor of head/neck cancer too), the very next thing they did was an MRI of my brain, and that may be because my particular brand of cancer (squamous cell carcinoma) likes to go there, or it may be because lung cancer in general likes to go there. That I don't know.

I do know that from that point on, and, really, even from the beginning, it was not so much chest x-rays as it was CT scans and the occasional PET scan, all apparently carefully scheduled by OncoMan and/or one of my other doctors.

Getting to the real point, nana, I would suggest that looking for mets is like looking for a needle in a haystack. I think many, many cancer survivors would tell you, and you, yourself, know this, that it can just leap up at you out of the blue.

Some of my friends on this site suggest that your body sort of tells you, and perhaps it does. For my part, I would insist on the CT scans unless the doctor has a good explanation for the x-rays instead. Maybe he is more confident of your health than you are? Maybe he knows that your kind of cancer will show up on x-rays? I don't know.

Ask.

Best wishes, nana, with all of this.

Take care,

Joe

nanaof7
Posts: 127
Joined: Feb 2009

my onc is I'm not sure what to call him I was told by one onc that I had a 40% chance of surviving 5 yrs after my surgery and chemo and radiation, so I asked him what the after care was going to be. I was told that adenocarcinoma likes to go to the brain liver and bone, so I asked him if we are looking for mets then why are we only doing lung xrays and ct's he told me that it's for my sake because if my cancer does come back there is not much they can do and that just seems stupid to me! If it goes to my liver then treat my liver with rads or chemo the same for any where else it goes. so why are we only checking the lungs, they did the surgery took 9 lymph nodes and did a broncosopy everything came back clear. its so discouraging to have a dr tell me there is nothing they can do when I hear on this board all the people that have had their cancer come back and it cured again. I am so confused.... thank you for listening

Pat

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Pat, without getting into the details (you can read them on my page and the blog attached if you'd like and have nothing better to do), I was diagnosed in June of '07 with lung cancer so pervasive that OncoMan gave me as little as 10 months to live. Three months later we discovered via additional scans that I had had an infection in my lungs and really had only ONE node of concern.

Anyway, in January of '08 they went in via VATS to do a biopsy, the proviso being that if the stuff was metastasis from my previous head/neck cancer, they would not continue on and do a lobectomy. In my case, I was fortunate that they could not determine its origin, even though it was the same kind (squamous cell carcinoma), so they did the lobectomy.

The point though, Pat, is that had my cancer metastasized to my lungs from my tongue and neck, they were of the opinion that there was really no use in trying to remove it: we would be back to considering palliative care and riding out the last of the good times, so to speak.

I am not an OncoMan, Pat. I am not a cardiopulmonologist (or, as someone on here likes to insist instead, a thoracic something or other). I am not a doctor. I do not know how it is that they decide that some mets are worth pursuing while others are not.

I do have a reality check of my own, to be honest, one with which I am fairly certain they concur: if it goes to my brain, we are probably in bad news country. Mets to the brain, I think, are different, much different than an original tumor in the brain. I saw what happened to my mom when her cancer (breast from more than 20 years earlier) mets'd to the brain. She fought long, she fought hard, but it was a done deal.

The cancer you indicate, adenocarcinoma, is known as a rather aggressive one, Pat, which may make it even easier (from their perspective, but certainly not yours) for them to say, hey, if this moves on, Pat's in trouble.

But you DO have options. Do not let them talk you out of options if it becomes necessary to consider them.

If it gets to that, Pat, frankly, the job is to survive, and to hope for advances that will assist you in continuing to survive and to do so comfortably and with your wits about you. They are doing amazing things every day now, Pat. Truly. A friend of mine on this site once advised that she lives with the idea that if she can make it five years, they will have something available to make it five more years, and if she can make it another five years... well, you get the idea.

Right now, you indicate you are in all-clear mode, and that is excellent news! I congratulate you for that outstanding status!

It sounds as though they ARE scheduling regular scans along with the x-rays and that is great. OncoMan would probably tell you that the x-rays are less harmful to you in terms of radiation exposure, and I believe that is true, so that makes sense, but I would also want to keep getting those CT scans on a regular basis.

You can do things yourself to help, of course. If you smoke, quit. Period. My own doctors, when I first came to them with the head/neck cancer, were fairly adament that if I did not quit, there was no use in screwing around with me. And when we got to the lung stuff, of course, and you may know this, if I could not pass certain breathing tests, there would have been no surgery at all.

If you do not exercise, start. Eat well, Pat, take care of yourself, and hopefully your 'self' will take care of you.

Take care,

Joe

marijune
Posts: 45
Joined: Jan 2010

Joe,
How do they do the breathing test and is it always necessary before surgery? Is there any indication beforehand whether or not a person will pass this test.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

The breathing test is rather simple, marijune, as I recall. In my case it was a set of brief tests that were then repeated. Basically, they measure your ability to inhale, to exhale, and to retain oxygen, as measured by three or four different machines they hook you up to.

I doubt that one can 'cheat' on these (nor that it would serve any useful purpose), but I do believe, I strongly believe, that it is possible to train yourself prior to the tests. I didn't do it because I hadn't a clue as to what this procedure entailed, didn't even know it would be required, but in hindsight I can see why some of the brigher lights in this board and elsewhere strongly suggest that survivors get involved with regular exercise while getting rid of the smokes and the tokes and drinks if they are a factor.

Marijune, you can help yourself a lot by quitting the cigarettes, if you are a smoker. And you can help yourself a lot by taking a daily walk or getting on the treadmill. Increasing your lung capacity shows up on these tests.

I cannot answer as to whether 'passing' the breath test(s) is required for surgery. I feel nearly certain that other factors go into it, such as age, weight/height ratio, basic fitness. In my case, though, I'm pretty sure that in both cases I needed to show some good numbers, in the first instance because of the length of the surgery they were contemplating, and in the second because the subject of the surgery was a lobe of one my lungs.

I would say, marijune, that they are likely to be very interested in the results of such a study before they would consider removing part or all of a lung: after all, if you are having troubles breathing with all of the equipment intact (but with an obvious design flaw, to be sure), what's to make them think you will do better with some of it missing?

Just one view. Hope it helps.

Take care,

Joe

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Are you seeing a cancer doctor, an oncologist?

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I'm not sure who you were addressing, Nana b, but for my part I have been seeing OncoMan since 2005 and would assume that most folks with a cancer diagnosis have at least met with an oncologist themselves.

By the way, though, not all 'cancer doctors' are oncologists, at least in my experience. There are radiation docs, for example, my primary ENT docs are cancer specialists, the list goes on.

It certainly was not OncoMan in either case who determined I had cancer.

Take care,

Joe

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