Spots/nodules on lungs

pem

Hello all. I've been post treatment for almost 6months for stage 3b anal cancer now and was given the all clear on my first scope and cat scan three months ago.  They said there was some small marks on cat scan in the lung area but were not too worried about it back then Cause i have a history of asthma and he called it fluff.  I'm not sure why  but I was ok with that cause I wanted to be healthy again. I did my second scan three weeks ago and they are now concerned about the nodules because there are a few more and some got bigger .  The doctor said not by much are they bigger but the fact that they grew concerns them.  Even on the report for my scan it read possible mets.  This upsets me so much when we could of addressed this 3months ago and now it's worse.  The first thing my doctor said when he saw me was "I'm not sure what to do here ".  WHAT! his next step is to have a conference with other doctors a week and a half later to discuss my results and see What they suggest to do.  I am soo scarEd and do not know what to do. Should I get a second opinion or wait and see what they come up with?  Does anyone else have asthma and have dealt with similar results and it turned  out to be just issues due to asthma.  Any information, advice or words of hope would be greatly appreciated here.  Thank you all and god bless you.    Pam

lp1964

Dear Pam,

You are understandably upset. I had a similar scare a few days ago and it's hard to control the emotions. I would definitely set up a second opinion consult at a different place, not just to evaluate the scan, but have a different opinion on the treatment if you need any. Most likely you will need a PET scan with radioactive glucose to see what those spots are. 

Stay strong and focused as much as you can And wish you the best outcome. Keep us posted.

Laz

mp327

Pam

I am so sorry to hear this and I can certainly understand your fear.  It seems to me that one of the doctors your physician should be discussing these results with should be a pulmonologist.  I cannot comment on the possible connection this might have to your asthma, but I hope it's just that and nothing more sinister.  Is the week and a half delay between now and the time your doctor discusses this with his peers due to the fact that your case is being brought before the hospital's Tumor Board?  This is a common practice.  However, you should know that Tumor Boards are made up of all different kinds of specialists, some of whom probably have very little knowledge of metastasized anal cancer.  If you are like me, you have a couple of doctors following you post-treatment.  The doctor you referred to--is he your oncologist, a colorectal doctor or?  I would contact his office again and tell him it seems unreasonable to wait a week and a half to consult another doctor or doctors.  I think a 2nd. opinion would be prudent.  I will certainly be keeping you in my thoughts and prayers and let us know how this all unfolds, please.

pem

mp327 said:

Pam

I am so sorry to hear this and I can certainly understand your fear.  It seems to me that one of the doctors your physician should be discussing these results with should be a pulmonologist.  I cannot comment on the possible connection this might have to your asthma, but I hope it's just that and nothing more sinister.  Is the week and a half delay between now and the time your doctor discusses this with his peers due to the fact that your case is being brought before the hospital's Tumor Board?  This is a common practice.  However, you should know that Tumor Boards are made up of all different kinds of specialists, some of whom probably have very little knowledge of metastasized anal cancer.  If you are like me, you have a couple of doctors following you post-treatment.  The doctor you referred to--is he your oncologist, a colorectal doctor or?  I would contact his office again and tell him it seems unreasonable to wait a week and a half to consult another doctor or doctors.  I think a 2nd. opinion would be prudent.  I will certainly be keeping you in my thoughts and prayers and let us know how this all unfolds, please.

Thanks everyone,

thanks for the responses ,  yes the doctor I'm referring to is my radiation oncologist.  I'm pretty sure I'm his first anal cancer patient.  As for getting a second a opinion I wouldnt even know how or where to start for something like that.  Do I get a copy of all my tests and scans and just call other clinics?  Here in Canada it takes so long to get an appointment with anyone new.  I wouldn't even know who to call or where to go.  But as for it possible being mets to the lungs isn't all mets for any cancer the same?  Is there a special doctor for anal cancer mets.  Or do I just see a lung cancer doctor now?  I'm freaking out!!  Help me!!!   Pem

 

eihtak

pem.....

Does your area have a patient advocate or nurse care coordinater? Many areas utilize these services to give advice on what your next step should be as far as another opinion. Where I live it is not really a very successful resource but I have heard many good things in other areas. I agree, that another opinion is what I would want, or at least a speedier response from your current doctor. Can you contact the ACS for advice? My husband was just hospitalized last week for asthma related issues and after a few days sent home with a steroid! He is doing better but feels like a ticking time bomb!

I will be praying for speedy, helpful, and positive news for you.......

Marynb

Pem
I am in a very similar situation! I am now working with a pulmonologist. I have had 2 scans since May. I am now in a holding pattern until January.

There is no way to tell if it is cancer until they take this out. Mine is in a deep area of the lung.

I too am terrified at the prospect of this surgery. Prayers to you. This is a nightmare from hell.

Get yourself to a pulmonologist who deals with lung cancer.

mp327

pem said:

Thanks everyone,

thanks for the responses ,  yes the doctor I'm referring to is my radiation oncologist.  I'm pretty sure I'm his first anal cancer patient.  As for getting a second a opinion I wouldnt even know how or where to start for something like that.  Do I get a copy of all my tests and scans and just call other clinics?  Here in Canada it takes so long to get an appointment with anyone new.  I wouldn't even know who to call or where to go.  But as for it possible being mets to the lungs isn't all mets for any cancer the same?  Is there a special doctor for anal cancer mets.  Or do I just see a lung cancer doctor now?  I'm freaking out!!  Help me!!!   Pem

 

Second Opinion

If you secure an appt. for a second opinion, you will definitely need to take with you all scans, labs, etc.  You will save yourself some time and will not have to repeat any tests you've already had.  It may sound bold, but you could ask your rad onc what kind of specialist would be best to offer a second opinion.  I would phrase the question this way--"If you were in my shoes and wanted to get a second opinion, who would you go to."  See how he responds. 

As for all mets being the same, I would say this is probably not true.  The type of cancer cells can be different (small cell or non-small cell) and mets to the lungs can be located in different areas of the lungs.  Sometimes, a lobe resection can be done, but it just depends on where the cancer is located.

If you have an internist or PCP, perhaps they can also offer some guidance.  I wish you all the very best and hope you'll keep us posted. 

sandysp

Pulmonologist

I also have spots and one of them increased by three times it's original size since the last scan. It was referred to as possible mets by the Radiation Oncologist but my pulmonologist is just watching them, saying that at the time the scan was done, I had an asthma inflammation (it was right after I lost the hearing in my left ear also). There was also a lymph nodule that lit up in the scan. My Pulmonologist believes we should keep watching them.

Sometimes we have too much information, I think.

You really need a good pulmonologist you trust to read these scans. At first I only had spots on my right lung, lower lobe, but this last reading from the radiation oncologist also showed a spot on my left lung. My Pulmonologist said it was always there but the other radiologist didn't put it on the written report.

I am happy just to let them keep watching the spots. This Pulmonologist spotted lung cancer in a friend of mine and saved her life, so I know he knows what he is doing.

All the best,

Sandy

Marynb

sandysp said:

Pulmonologist

I also have spots and one of them increased by three times it's original size since the last scan. It was referred to as possible mets by the Radiation Oncologist but my pulmonologist is just watching them, saying that at the time the scan was done, I had an asthma inflammation (it was right after I lost the hearing in my left ear also). There was also a lymph nodule that lit up in the scan. My Pulmonologist believes we should keep watching them.

Sometimes we have too much information, I think.

You really need a good pulmonologist you trust to read these scans. At first I only had spots on my right lung, lower lobe, but this last reading from the radiation oncologist also showed a spot on my left lung. My Pulmonologist said it was always there but the other radiologist didn't put it on the written report.

I am happy just to let them keep watching the spots. This Pulmonologist spotted lung cancer in a friend of mine and saved her life, so I know he knows what he is doing.

All the best,

Sandy

Sandy
Hi. When you say spots, what do you mean? I am wondering how they know mine has to come out? Did the pulmonologist explain what the difference is on a scan?

luckieslady

sandysp said:

Pulmonologist

I also have spots and one of them increased by three times it's original size since the last scan. It was referred to as possible mets by the Radiation Oncologist but my pulmonologist is just watching them, saying that at the time the scan was done, I had an asthma inflammation (it was right after I lost the hearing in my left ear also). There was also a lymph nodule that lit up in the scan. My Pulmonologist believes we should keep watching them.

Sometimes we have too much information, I think.

You really need a good pulmonologist you trust to read these scans. At first I only had spots on my right lung, lower lobe, but this last reading from the radiation oncologist also showed a spot on my left lung. My Pulmonologist said it was always there but the other radiologist didn't put it on the written report.

I am happy just to let them keep watching the spots. This Pulmonologist spotted lung cancer in a friend of mine and saved her life, so I know he knows what he is doing.

All the best,

Sandy

Sandy

You mention Asthma Inflammation.. Not till after I had my treatments for Stage II anal cancer did I ever have my lungs to be inflammed and I had severe couphing.. I was given meds by my family doc to keep me from catching pneumonia.. it truly scared me though..as lung cancer runs DEEP in my family..should I note this to my Onco-Rad docs? 

Marynb

luckieslady said:

Sandy

You mention Asthma Inflammation.. Not till after I had my treatments for Stage II anal cancer did I ever have my lungs to be inflammed and I had severe couphing.. I was given meds by my family doc to keep me from catching pneumonia.. it truly scared me though..as lung cancer runs DEEP in my family..should I note this to my Onco-Rad docs? 

Post treatment .....
Luckieslady,

That is odd. I had the same thing happen. A short while after treatment I developed severe lung/ infection/ pneumonia with intense coughing. It was treated with antibiotics. I had never any problems at all with my lungs before that. It was the sickest that I have ever been in my life....

I wonder if it is related to the treatment?

sandysp

luckieslady said:

Sandy

You mention Asthma Inflammation.. Not till after I had my treatments for Stage II anal cancer did I ever have my lungs to be inflammed and I had severe couphing.. I was given meds by my family doc to keep me from catching pneumonia.. it truly scared me though..as lung cancer runs DEEP in my family..should I note this to my Onco-Rad docs? 

DNA

I just saw this about lung cancer in your family history.

I would say yes you should mention this as a concern to your Onco-Rad docs. Ask for a referral to a Pulmonologist. You should have one on your medical team.

Sincerely,

Sandy

sandysp

Marynb said:

Sandy
Hi. When you say spots, what do you mean? I am wondering how they know mine has to come out? Did the pulmonologist explain what the difference is on a scan?

My doctor doesn't talk much . . .

But I was demanding answers this last visit. He was good natured about it and said he was only concerned about the single lymph node lit up on the scan as he did not remember it from previous scans. He said he had seen the left lung spot before even though it was not on the report and even though "three times it's size" was a concern for me, he said not to worry. I think, though that he tests me in other ways, like he tests my breathing and I was really sick and then I got better, and it would be likely that if they took the Cscan again, the inflammation would have gone back down again. I think he can tell a lot with the computer he uses to test my breathing every four months what my lungs are doing. He doesn't really know what is wrong with them but they aren't well due to lifelong inflammation issues. He keeps running blood tests, etc. He says "I'm calling this asthma" even when I had Pertussis (whooping cough last year). . . he missed the call on that one. I am relieved he doesn't want to do an invasive biopsy procedure.

All the best,

Sandy

Marynb

sandysp said:

My doctor doesn't talk much . . .

But I was demanding answers this last visit. He was good natured about it and said he was only concerned about the single lymph node lit up on the scan as he did not remember it from previous scans. He said he had seen the left lung spot before even though it was not on the report and even though "three times it's size" was a concern for me, he said not to worry. I think, though that he tests me in other ways, like he tests my breathing and I was really sick and then I got better, and it would be likely that if they took the Cscan again, the inflammation would have gone back down again. I think he can tell a lot with the computer he uses to test my breathing every four months what my lungs are doing. He doesn't really know what is wrong with them but they aren't well due to lifelong inflammation issues. He keeps running blood tests, etc. He says "I'm calling this asthma" even when I had Pertussis (whooping cough last year). . . he missed the call on that one. I am relieved he doesn't want to do an invasive biopsy procedure.

All the best,

Sandy

Sandy
I see. I am remembering your pertussis. It sure is confusing. The procedure would not be a biopsy....it would be to remove the growth and then they biopsy. I am confused.