Lung cancer - not primary
Things don't look very promising because of treatment that he has already had and now it has shown up elsewhere.
Is there anyone on here that has had a similar situation and if so, what treatment did you go through?
thanks,
Debbie
Comments
-
Mets to lungs
I am quite familiar with the situation, having been diagnosed with head/neck cancer in 2005, followed by a lung cancer diagnosis in June of 07.
My h/n cancer was squamous cell carcinoma. Treatment included surgery to replace part of my tongue along with a radical neck dissection, chemotherapy (cisplatin) and 35 radiation sessions.
When they first detected 'stuff' in my lungs during a PET scan in June of 07, it was everywhere, in head, in both lungs, and I was advised I had as little as 10 months to live.
Fortunately, as it turns out, I was taking an antibiotic for what my primary physician thought was cellulitis, an infection in my facial area. This killed most of the infection in both my head AND my lungs.
It turned out there was just a small (4mm) node of what was ultimately determined to be cancer, in my lower right lung lobe. Rather than me dying within 10 months, they now had to wait for the cancer to grow before they could even test it for type and whether metastasis or not.
A biopsy done under the knife (it was in such a place that they simply could not get a needle to it through the ribs) proved it to be of the same kind as my head/neck, but they could not verify whether it was metastasis or not. Fortunately for me, they did a lower right lung lobectomy in jan of 08 and I am now NED (No Evidence of Disease).
Some things for you to consider from all of that:
1. If your husband has ever been a smoker, or ever had bronchitis, or ever had pneumonia, he may have scar tissue in his lungs that can be mistaken for cancer. OBviously, an infection can have the same sort of effect.
2. Especially because of the head/neck cancer, if your husband is eating orally (rather than or in addition to via a tube) he may very well be aspirating, meaning that things may be going into his lungs. I am not a doctor, and don't know if or how this stuff would show up on a scan, but it's something to consider.
3. If it IS cancer, and if it IS metastatis, it likely, at least it was in my case, that they will not one to do any further surgery, because of the likelihood that if the cancer has moved to one place (his upper right lobe, I think you said) it has gone elsewhere, too. In this case, they might want to suggest chemo and palliative treatment. On the other hand, even if it IS mets, if it is only in the upper right lobe, you may want to argue stridently for them to remove the lobe and take your chances on whether it is anywhere else, provided he is healthy enough to endure the surgery. In this case, by the way, they will almost certainly want to do a brain MRI, as h/n cancer, when it moves, likes to move not just to the lungs, as you know, but also to the brain.
4. It is NOT cancer until they have biopsied it! And, in any event, you do not indicate whether the docs are using scans from different dates to compare for growth: at the very least, they would need two different scans over a period of time for comparison purposes (I suspect since they sound so confident, they have done this.)
5. If the lobectomy does not work out (if they elect not to do it), they will likely promote chemotherapy only. These treatments are getting better all of the time from what I read, as are the 'cocktails' that help to assuage our adverse reactions to them.
I hope that all works out for your husband and his family.
Hope and humor!
Take care,
Joe0 -
Tongue & Lungsoccerfreaks said:Mets to lungs
I am quite familiar with the situation, having been diagnosed with head/neck cancer in 2005, followed by a lung cancer diagnosis in June of 07.
My h/n cancer was squamous cell carcinoma. Treatment included surgery to replace part of my tongue along with a radical neck dissection, chemotherapy (cisplatin) and 35 radiation sessions.
When they first detected 'stuff' in my lungs during a PET scan in June of 07, it was everywhere, in head, in both lungs, and I was advised I had as little as 10 months to live.
Fortunately, as it turns out, I was taking an antibiotic for what my primary physician thought was cellulitis, an infection in my facial area. This killed most of the infection in both my head AND my lungs.
It turned out there was just a small (4mm) node of what was ultimately determined to be cancer, in my lower right lung lobe. Rather than me dying within 10 months, they now had to wait for the cancer to grow before they could even test it for type and whether metastasis or not.
A biopsy done under the knife (it was in such a place that they simply could not get a needle to it through the ribs) proved it to be of the same kind as my head/neck, but they could not verify whether it was metastasis or not. Fortunately for me, they did a lower right lung lobectomy in jan of 08 and I am now NED (No Evidence of Disease).
Some things for you to consider from all of that:
1. If your husband has ever been a smoker, or ever had bronchitis, or ever had pneumonia, he may have scar tissue in his lungs that can be mistaken for cancer. OBviously, an infection can have the same sort of effect.
2. Especially because of the head/neck cancer, if your husband is eating orally (rather than or in addition to via a tube) he may very well be aspirating, meaning that things may be going into his lungs. I am not a doctor, and don't know if or how this stuff would show up on a scan, but it's something to consider.
3. If it IS cancer, and if it IS metastatis, it likely, at least it was in my case, that they will not one to do any further surgery, because of the likelihood that if the cancer has moved to one place (his upper right lobe, I think you said) it has gone elsewhere, too. In this case, they might want to suggest chemo and palliative treatment. On the other hand, even if it IS mets, if it is only in the upper right lobe, you may want to argue stridently for them to remove the lobe and take your chances on whether it is anywhere else, provided he is healthy enough to endure the surgery. In this case, by the way, they will almost certainly want to do a brain MRI, as h/n cancer, when it moves, likes to move not just to the lungs, as you know, but also to the brain.
4. It is NOT cancer until they have biopsied it! And, in any event, you do not indicate whether the docs are using scans from different dates to compare for growth: at the very least, they would need two different scans over a period of time for comparison purposes (I suspect since they sound so confident, they have done this.)
5. If the lobectomy does not work out (if they elect not to do it), they will likely promote chemotherapy only. These treatments are getting better all of the time from what I read, as are the 'cocktails' that help to assuage our adverse reactions to them.
I hope that all works out for your husband and his family.
Hope and humor!
Take care,
Joe
Joe,
I have tried twice to respond and the comments disappear. don't know what went wrong (and I work in IT!).
I don't have the time to type all the stuff again. But I wanted to say thanks for your comments and possible questions to raise.
(Hoping this comment makes it).
Debbie0 -
????debbieg5 said:Tongue & Lung
Joe,
I have tried twice to respond and the comments disappear. don't know what went wrong (and I work in IT!).
I don't have the time to type all the stuff again. But I wanted to say thanks for your comments and possible questions to raise.
(Hoping this comment makes it).
Debbie
Hah! so, of course this worked when I only spent 60 seconds typing. Not sure why the previous 2 didn't.
dlg0 -
ITdebbieg5 said:Tongue & Lung
Joe,
I have tried twice to respond and the comments disappear. don't know what went wrong (and I work in IT!).
I don't have the time to type all the stuff again. But I wanted to say thanks for your comments and possible questions to raise.
(Hoping this comment makes it).
Debbie
I worked in IT too: that should answer your question
.
Take care,
Joe0 -
Biopsysoccerfreaks said:IT
I worked in IT too: that should answer your question.
Take care,
Joe
Hah! I should have recognized that warped sense of humor. (I read your Thanksgiving post)
A question about your biopsy....how extensive of a surgery is that? I don't know for certain, but I'm guessing that my husband's might not be a candidate for the needle kind.
Would treatment ever be done without a definitive biopsy to confirm that what they are seeingis cancer? Or do they sometimes weigh all the other evidence and make a decision based on that?
we will probably be seeing the oncologist tomorrow.
debbie0 -
Hope and Humor!debbieg5 said:Biopsy
Hah! I should have recognized that warped sense of humor. (I read your Thanksgiving post)
A question about your biopsy....how extensive of a surgery is that? I don't know for certain, but I'm guessing that my husband's might not be a candidate for the needle kind.
Would treatment ever be done without a definitive biopsy to confirm that what they are seeingis cancer? Or do they sometimes weigh all the other evidence and make a decision based on that?
we will probably be seeing the oncologist tomorrow.
debbie
debbie, they will probably try to do a needle biopsy first...they tried with me, and if a rib is not in the way, that is the way they will probably prefer (I am NOT a doctor; this is just my personal experience).
My guys tried like heck to do the needle, but just couldn't bend the needle around that one stubborn rib.
So I eventually went under for the biopsy. In my own experience, they were not yet sure if this was metastasis or something new, and before I went under they told me they would biopsy and if it was mets they would not operate (no lobectomy). I would, in effect, be done.
They found cancer (VATS surgery in my case, which is a lot less invasive than the rib-cracking kind that some people endure). Without waking me, they went ahead and did the lobectomy. I ended up with a smiley under my armpit and a number of little holes in the side (some of them because they had to go back in several days later: a staph infection, but it was all endurable; in fact, the original biopsy and surgery was a piece of cake... it was the staph infection that kept me in for nearly another entire month and hurt like heck.
Those holes are where they plug in the drainage equipment that you walk around with for awhile as you rebuild strength.
If hub has VATS surgery, deb, he could be out in three or four days, back home and resting on the sofa or in bed. They might follow that with chemotherapy (carboplatin and taxol in my case), but this is preferable, again, to the rib-cracking alternative.
As far as I know, deb, the only way to know for sure that you have cancer is to have them take a sample. Again, I am not a doctor. I have had cancer twice, and in both cases, they took biopsies before acting further, so that is what I am going with. And, again, with the lung cancer, they did the biopsy, tested it while I was still under, and then moved forward without disturbing my sleep.
Just my experience.
Best wishes to hub and his loved ones, especially his special caregiver. To be a good caregiver, deb, by the way, you have to take good care of the giver! Do not forget yourself in all of this!
Take care,
Joe0 -
updatesoccerfreaks said:Hope and Humor!
debbie, they will probably try to do a needle biopsy first...they tried with me, and if a rib is not in the way, that is the way they will probably prefer (I am NOT a doctor; this is just my personal experience).
My guys tried like heck to do the needle, but just couldn't bend the needle around that one stubborn rib.
So I eventually went under for the biopsy. In my own experience, they were not yet sure if this was metastasis or something new, and before I went under they told me they would biopsy and if it was mets they would not operate (no lobectomy). I would, in effect, be done.
They found cancer (VATS surgery in my case, which is a lot less invasive than the rib-cracking kind that some people endure). Without waking me, they went ahead and did the lobectomy. I ended up with a smiley under my armpit and a number of little holes in the side (some of them because they had to go back in several days later: a staph infection, but it was all endurable; in fact, the original biopsy and surgery was a piece of cake... it was the staph infection that kept me in for nearly another entire month and hurt like heck.
Those holes are where they plug in the drainage equipment that you walk around with for awhile as you rebuild strength.
If hub has VATS surgery, deb, he could be out in three or four days, back home and resting on the sofa or in bed. They might follow that with chemotherapy (carboplatin and taxol in my case), but this is preferable, again, to the rib-cracking alternative.
As far as I know, deb, the only way to know for sure that you have cancer is to have them take a sample. Again, I am not a doctor. I have had cancer twice, and in both cases, they took biopsies before acting further, so that is what I am going with. And, again, with the lung cancer, they did the biopsy, tested it while I was still under, and then moved forward without disturbing my sleep.
Just my experience.
Best wishes to hub and his loved ones, especially his special caregiver. To be a good caregiver, deb, by the way, you have to take good care of the giver! Do not forget yourself in all of this!
Take care,
Joe
Thanks for info Joe. Since we are just finding out about this lung part, I am not familiar with all the terminology. I keep seeing people making reference to VATS....what is that?
As far as the biopsy, I just got off phone with ENT. He is going to meet with us tomorrow at same time that we see the onc. I asked about the biopsy and he said they could try the needle kind with CT scan or (since my husband has had a laryngectomy) go through the stoma with a bronchoscopy. It sounds like the only purpose of the biopsy would be to determine if this is a new primary tumor or a spread from the tongue.
The general gist that I'm getting is that if this is a mets, then they would not do the surgery because it is probably spreading elsewhere but just hasn't shown yet. Of course, we can't forget that there is still the cancer on the tongue which does not present very good options either. You said, they went ahead with your lobectomy, does that mean that is was a new primary?
debbie
ps. yes, I am the caregiver. Not to mention mother of 3 kids...one in college and 2 at home. And trying to continue to work. It is becoming a real struggle.0 -
VATSdebbieg5 said:update
Thanks for info Joe. Since we are just finding out about this lung part, I am not familiar with all the terminology. I keep seeing people making reference to VATS....what is that?
As far as the biopsy, I just got off phone with ENT. He is going to meet with us tomorrow at same time that we see the onc. I asked about the biopsy and he said they could try the needle kind with CT scan or (since my husband has had a laryngectomy) go through the stoma with a bronchoscopy. It sounds like the only purpose of the biopsy would be to determine if this is a new primary tumor or a spread from the tongue.
The general gist that I'm getting is that if this is a mets, then they would not do the surgery because it is probably spreading elsewhere but just hasn't shown yet. Of course, we can't forget that there is still the cancer on the tongue which does not present very good options either. You said, they went ahead with your lobectomy, does that mean that is was a new primary?
debbie
ps. yes, I am the caregiver. Not to mention mother of 3 kids...one in college and 2 at home. And trying to continue to work. It is becoming a real struggle.
Hi! VATS means Video Assisted Thoracic Surgery. I had a VATS surgery the first time around. It is a whole lot like laproscopic surgery on the chest. The three holes I had each fit under a bandaid. I was up and walking around much sooner and with lots less painful side effects than my friends who had regular thoracic surgery. In fact, I was up jogging around a track (slowly but surely) about a week after surgery. Then they called me back for a modified VATS (long story but I had a previous breast cancer history and they were SURE it was a met and it wasn't so more surgery for me. . .) Oh well, the modified VATS had a bigger cut, more side effects and it took a lot longer to get out of bed. That was way back in 2006, so I'm sure the surgeries helped. So if you can travel to a thoracic specialist that is great at doing VATS surgeries, go for it over regular thoracic surgeries. Of course, the needle biopsy would be even easier to recover from.
Mets are usually treated with chemo. Primaries if localized are treated with surgery. That's why a biopsy is really really necessary. The surgeon guessed wrong in my case and fortunately for me the pathologist did the tests to find out that I needed more surgery (even if it ouched more!) rather than chemo. Good luck!0 -
Thanks for thecabbott said:VATS
Hi! VATS means Video Assisted Thoracic Surgery. I had a VATS surgery the first time around. It is a whole lot like laproscopic surgery on the chest. The three holes I had each fit under a bandaid. I was up and walking around much sooner and with lots less painful side effects than my friends who had regular thoracic surgery. In fact, I was up jogging around a track (slowly but surely) about a week after surgery. Then they called me back for a modified VATS (long story but I had a previous breast cancer history and they were SURE it was a met and it wasn't so more surgery for me. . .) Oh well, the modified VATS had a bigger cut, more side effects and it took a lot longer to get out of bed. That was way back in 2006, so I'm sure the surgeries helped. So if you can travel to a thoracic specialist that is great at doing VATS surgeries, go for it over regular thoracic surgeries. Of course, the needle biopsy would be even easier to recover from.
Mets are usually treated with chemo. Primaries if localized are treated with surgery. That's why a biopsy is really really necessary. The surgeon guessed wrong in my case and fortunately for me the pathologist did the tests to find out that I needed more surgery (even if it ouched more!) rather than chemo. Good luck!
Thanks for the clarification. Isn't it amazing how medically knowledgable we all become. One of my friends told me tonight that I was starting to talk like a doctor with all the medical terms I was using.
I'll keep the VATS in mind but I guess our first step is verifying that (a) it is indeed cancer and (b)is it a mets or primary. Then I guess we move forward from that point.
Debbie0
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