SCARED TO DEATH

[Mike Monaco]

Not sure what section to post where I can get a response, sorry if this is not the spot.

Will make it short and to the point.  I am mid 60's, live alone, have no one.  Super great health until 60, then the bottom fell in.  At 60 got an autoimmune issue, not bad at first but picked up.  Began having problems with Pulmonary Eosinophils last 2 years.  Have been to 3 Pulmonologists, did CT scan, you could see all the markings of the EOS plus a very old 4mm nodule that goes way back to 2000.  All the docs said from experience the 4mm nodules never change, so far every time a CT was done it was the same.   In July this year I had a colon perforation one night and went to ER where they operated, spent 4 days in the hospital, all went well.  They noticed Diverticulitis, probably due to constipation because of autoimmune.  Anyway Just did another CT last week due to some stomach issues, seemed to be Divertic acting up, but caught part of lung on the image, the 4mm nodule was now 1.1 cm x 1.6 cm.  The radiologist said to wait 3 months and redo.   Happened to have a Pulmo visit scheduled for tomorrow, so bringing copies of the DVD and report to the doctor.  I want a  PET scan done ASAP to know where I stand. I have been on some solid supplements since I was told of the mass, just have to do something, cannot just do nothing. Cancer waits for no one, so have to move quick or hand it up.   What advice do you guys have?  Have not been so scared since I was in the war years ago.    John

 

[Steff]

Hi John,

It sounds like you've had a tough couple of years with your medical issues, I'm sorry to hear that.  I'm happy to hear that you are being proactive about the nodule and following up with your pulmonary specialist.  I have no experience with pulmonary eosinophils and cannot comment on how that may affect the nodule that appears to have grown.  What I can speak of is nodules in general.  Nodules are not uncommon for folks, especially with those who have autoimmune issues.  My mom has RA.  Her initial lung cancer diagnosis was due to finding nodules in her lungs.  During diagnosis, her RA specialist told her that RA and other autoimmune disorders can cause nodules and that he had had a patient with over 50 nodules in her lungs that were not cancerous.  Unfortunately, my mom's were cancerous. 

There are a few different physical types of nodules - spiculated and non-spiculated.  Spiculated nodules have bumps/point on them, kind of like a star, where non-spiculated are relatively smooth.  Although it's not an exact science, spiculated nodules are more likely to be cancerous than non-spiculated nodules.  Also, in regard to PET scans - nodules can "glow" even if they are not cancerous.  PET scans show active tissue, organs, etc.  So a non-cancerous nodule can "glow" when it is actively growing for reasons other than cancer.  I don't know if cancerous nodules will always glow or not, I would assume so because they are active, but cannot be positive.  Your pulmonologist will be a good person to refer to as to the next steps of looking more into this. 

I wish you the best, take care,

Steff

[Susan Cornett]

Mike,

My advice is what you are already doing - taking steps to get answers.  The only bit I can add is ask questions until you get answers.  Ask until you are satisfied with responses.  Keep us posted and let us know how we can help.

[BridgetO]

Hi Mike and welcome here.

I'm sorry to hear about the health issues you're having. To follow up on what Steff said about PET scans, cancerous nodules don't always light up on the PET scan. I had a small nodule thatk ept growing very slowly(discovered in a CT scan for something else, and followed for 3 months). I had a PET and nothing lit up. However, it had a suspicious shape--as Steff said, they can tell a lot by looking at the form of the nodule. Because mine was in a location where it couldn't be biopsied by needle or by bronchosope, I agreed to surgery, and had my lower right lobe removed. THe nodule was indeed cancerous, Adenocarcinoma Stage 1a. It's my understanding that very slow growing and small cancers may not register on the PET because their metabolic activity is very low. Fortunately mine was a "lazy" cancer and discovered early, so now I have No Evidence of Disease. (NED).

I wish you all the best with your nodule. Keep us up to date and let us know how we can support you.

Bridget O

 

[Mike Monaco]

HI All,

 

Thank you, ladies, for commenting on my issue, very much appreciated.  As I mentioned, today I had my appt with my Pulmonologist.  The weather was really terrible, an ice storm covered the area, the doc called and tried to reschedule, but I told her no way, had a very important matter to discuss and absolutely had to see her.   I showed up with all my CD's of my CT scans so she could look them over. I guess her computer system is not too great since she could not make out the images clearly, so she was going to bring them to the hospital she works at and view them tomorrow morning and call me.  She is a professor at NYU in charge of the Cystic Fibrosis dept and is really terrific at reading the films, better than the radiologists who do it all day long, so will see what she interprets them as.   One of the ladies here mentioned the term spiculated, that is exactly the same term used by the radiologist that initially interpreted them, supposedly infers a neoplastic state.   I will not know anything until tomorrow, so have to hold on tight till then.  I hate this, not good at waiting.  IMO this thing has turned into a mess because of the surgery I had in July, the hospital was really pushing for me to have the surgery done.  Not sure if any of you know, but when you have surgery the body responds by releasing huge amounts of Treg cells to minimize inflammation from occurring, these Treg cells downregulate the TH1 arm of the immune system (this is the part that keeps inflammation, tumors and viruses in check)  This is what did me in, my protective shield to cancer was down, now I am paying the ultimate price., it has kept me safe for many years.   That long time nodule must not have been well differentiated and just crossed the line into malignancy and there was nothing there to stop it.  One big lesson learned here, going to take a lot to get me into an OR in the future.  I will update tomorrow, God willing.    Best of Health to All.  Thank you.

 

[LexieCat]

Hey, all that sounds pretty overwhelming.  I'm just a tad younger than you, and my nodules were discovered during screening.  At the first follow-up, no changes so I was told to come back in a year.  The following year, one of mine had changes similar to yours--it had grown slightly and was spiculated. My PET CT showed only that one nodule glowing, and when it was removed it was diagnosed as Stage 1B (my surgeon felt it was 1A, but pathologist believed it had invaded the pleura, so officially it's 1B).  I just had my six-month followup scan after my lobectomy and everything looks GREAT.  I feel fine, no aftereffects, and haven't had to deal with chemo OR radiation.  Just ongoing monitoring.

My tumor, when it was removed, was about the size of yours.  So it may not be nearly as dire as you fear.  Lung cancer is definitely scary and something to take VERY seriously, but it isn't necessarily a harbinger of doom.  Hang in there--I know how hard it is to wait.  The good news for you is that the tumor is small and it apparently has been caught early.  

I've never heard of a nodule's becoming cancerous due to surgery, so I wouldn't be putting the blame there.  You can be grateful that the surgery and followup enabled them to catch this as early as they did.  If it weren't for that, it might have continued to grow and you wouldn't know about it until it was FAR advanced and much more difficult to treat.

[Mike Monaco]

HI,

 

Just thought I would update, though not much has changed, so far.  My Pulmonologist called yesterday, she said she has requested a previous CT I had done 3 week previous of the same area which no mention of this growth was made.  She is thinking it may possibly be a wad of mucus, since they have the same whitish appearance as a growth has.  Also she is suspicious since there was no mention of this growth on the previous CT only a few weeks before, so she is waiting for the other CT to compare, so have to wait.   I think it is odd also that there is no mention of this growth on the previous CT of the same area.

 

IN response to LexieCat about surgery possibly being the cause, it defintely can.  If the immune system is compromised, which it is during surgery, funny things can happen.  The immune system is the only thing between Us and Cancer.

 

https://www.ncbi.nlm.nih.gov/pubmed/21195330

 

 

 

[BridgetO]

Thanks for the link.Interestin!

[LexieCat]

Oh, I don't doubt that.  But there are all kinds of conditions and events that can compromise the immune system. In fact, there are studies suggesting that psychosocial stresses contribute to metastasis. I'd hesitate to attribute the development of a particular cancer to a particular event like a surgical procedure. I can't access the entire article whose abstract you linked to, but it appears to suggest immunosuppression as a possible contributor to metastasis, not the original malignancy.  I'm not a medical professional or scientist, of course.

That aside, I hope your doctor's hunch is right--that would be awesome news.  As happy as I am to have my cancer caught early, I would have been a whole lot happier if it hadn't been there at all!

[Tom Galli]

John,

I second Lexi's opinion about the pubmed citation.  True, the abstract does suggest a link between surgery and metastasis, but the paper was written in 2011 and not widely peer reviewed.  Thoracic surgeons I know suggest a risk of metastasis during surgery by disruption of the mass or tumor and the release of cells into the blood stream.  That is a known risk and one I believe the community is prepared to deal with.

I'm not sure the wider community of medicine agrees surgical induced immunosuppression and metastasis are necessarily linked.

I am also happy you've had an early find and hope your treatment quickly eliminates your lung cancer.

Stay the course.

Tom

[Mike Monaco]

Today they took blood samples to test if this is cancer or not.  Seems a biopsy is not possible due to location and in order to get a proper sample would require a surgical procedure with a hospital stay and an expensive price tag so they obtained an approval for a new DNA test that must be pretty pricey but less than the surgery would have been.  Results come in 2 weeks.  ON the good side my pulmonologist said in over 10000  cancers he has diagnosed only one was in this location and that belonged to a woman who smoked 3 packs a day for 35 years, so considering my smoking history of ZERO, I think the odds are in my favor.  The doc said that autoimmune diseases such as mine makes lung scarring a common occurrence, so will keep the prayers up too.  Until the next update.            

[Mike Monaco]

Hi,

Just got a call from my Pulmonologist, he said the test they did came back INCONCLUSIVE,  now they want to do a biopsy or possibly just remove it period and end it.  At the last meeting they said it was in a bad location and biopsy would be difficult, now  he  says the doctor who will do it is the best on the East coast and should be able to do it without a hitch.  He said it would take about  a half hour and I will be somewhat sedated but still awake since I will have to breathe in and out as they  require.    One thing I have learned in my experience with doctors, is that what they say changes from day to day, you need to record your conversations with them.   I just know this will turn into something bigger than they say/anticipate.   He said he doubts it is malignant because of my autoimmune condition since  Pulmonary issues are common.  He says it could be an infection, or maybe scar tissue, he says a lot of different things, but the truth is he does not know, so he throws out more benign possibilities.   Now he also says it has been getting larger over time, but he never ever said anything about any growth before, nor has the radiologist made a comment in any previous CT report, this is all new.  When I questioned him on these facts he tries to get off the subject.   All this makes me not trust him so much anymore.  He is basically  saying it has been there for a while and growing, but neither he nor the radiologist ever mentioned it in a report or to me.  Not credible at all, in fact if that was so it is malpractice to do that.

I have a problem with the biopsy, first due to location, it will be tough, so problems can arise, so  why not do a PET scan, should tell us if it is malignant and more importantly, if it has spread, the biopsy will not tell us if it spread.  They have a new MRI/PET in my area, way less radiation ,much safer too.   Would like to hear what your guys have to say and how you would handle this if it was your issue.   As a backup I had made an appt  when this all started  with a Radiation Oncologist for next week.  He is supposed to be good and I think it is a good idea to hear what he has to say at the minimum. Very open to hear any and all of your ideas sinc eyou have been through this ride before.  Thank you.

[Steff]

Mike,

I hear your frustration.  The same thing happened to my mom - no mention of 2 lung nodules prior to discussion about possible cancer.  The reality is that the nodules were too small to really see until they got a bit bigger.  Once they were seen, the docs were able to go back and see that they were there prior, just not noticeable.  Although this was a punch in the gut for us, we just decided to move on and proceed with what their recommendation was, which was wait to see if it gets any bigger (my mom had RA, which can lead to lung nodules and the nodules were too small to biopsy at that point).  If you do not trust your pulmonologist, I would suggest looking for another one, you need to trust your team.  However, if it were me or my mom, we would choose to have it biopsied.  There is no other way to be sure that a nodule is cancerous. PET scans only show if a nodule is active - benign nodules can be active and glow. Also if a malignant nodule is small enough, it may not be picked up the PET scan.  Also, if it is cancerous, like my mom's nodules, the biopsy can be studied to see if it has any of the characteristics that immunotherapy can fight against. 

As far as the biopsy goes - my mom's nodules were not in an area hard to get to, but her original pulmonologist was concerned about putting her under anesthesia for the procedure due to COPD and other health issues.  Several biopsies later, my mom has never had any problem with them and her current pulmonologist does not fear any of my mom's health issues.  Most biopsies have taken about a 30 minutes to an hour, plus recovery time.  Since yours is in a hard place to biopsy, it may take a bit longer.

 

[Tom Galli]

Mike,

I've not had your experience with my doctors. If trust was so lacking, I needed to turn to recording consultations; I'd have a new doctor.  If I suspected malpractice, I'd find both a lawyer and a new doctor, quickly.

As a patient, you have a choice.  If you don't want a biopsy, then make that choice.  Find a doctor who will order a PET scan -- a general practitioner can order a PET scan.  Here is some information on diagnostic radiation to help you understand how small diagnostic doses are.  A PET scan does inject glucose tagged with a radioactive isotope (iodine if memory serves me correctly).  It has a very short half life; I think 6 hours.  If one was concerned about radiation, then the idea of a radioactive isotope in the bloodstream should be very troubling.

You are right.  A biopsy will not reveal metastatic disease but without a biopsy, if cancer, the disease cannot be treated.  So if it was my decision, I'd take the biopsy road because the results are conclusive.  In my cancer treatment, uncertainty was the big bad dog in the consultation room.  I'd want as much certainty as possible so it would be a biopsy for me.

Stay the course.

Tom

[Mike Monaco]

Tom,

 Thank you very much for the solid advice.  I may not like what you say, but more importantly, it makes good sense.  I am sure there are lots of things people who get involved with cancer do not like, but once  on the road you have to make the best of it, bob and weave and deal with it best you can.  I guess I am leaning toward biopsy for now, unless something valid is suggested to me by a knowledgeable  person, perhaps the doctor I will see next week.  As usual, if you have any ideas, you are welcome to post them, I am always open to alternatives. Thanks. 

[Mike Monaco]

52 minutes ago, Steff said:

Mike,

I hear your frustration.  The same thing happened to my mom - no mention of 2 lung nodules prior to discussion about possible cancer.  The reality is that the nodules were too small to really see until they got a bit bigger.  Once they were seen, the docs were able to go back and see that they were there prior, just not noticeable.  Although this was a punch in the gut for us, we just decided to move on and proceed with what their recommendation was, which was wait to see if it gets any bigger (my mom had RA, which can lead to lung nodules and the nodules were too small to biopsy at that point).  If you do not trust your pulmonologist, I would suggest looking for another one, you need to trust your team.  However, if it were me or my mom, we would choose to have it biopsied.  There is no other way to be sure that a nodule is cancerous. PET scans only show if a nodule is active - benign nodules can be active and glow. Also if a malignant nodule is small enough, it may not be picked up the PET scan.  Also, if it is cancerous, like my mom's nodules, the biopsy can be studied to see if it has any of the characteristics that immunotherapy can fight against. 

As far as the biopsy goes - my mom's nodules were not in an area hard to get to, but her original pulmonologist was concerned about putting her under anesthesia for the procedure due to COPD and other health issues.  Several biopsies later, my mom has never had any problem with them and her current pulmonologist does not fear any of my mom's health issues.  Most biopsies have taken about a 30 minutes to an hour, plus recovery time.  Since yours is in a hard place to biopsy, it may take a bit longer.

 

HI Steff,

Thanks much for your expertise on the dilemma.  Your advice echos Tom, guess it is the sensible choice based on experience,  something I do not have yet.   I guess I speak more from my preference of the procedure least likely to go bad.  Once they start with the biopsy things can get screwed up like a collapsed lung, or later an infection,,  could be other issues too, I just do not know enough about this to predict what else could go bad, but in this type of procedure I am sure there is more. I have had so many bad turns I really do not anticipate getting a break.  This one is getting me depressed to the point I may just accept what ever it is in my lung and do nothing.   I happened to know of a 88 year old woman who smoked her whole life, when she broke her hip the docs said you have to stop smoking or it may not heal, so she did.  That was a year or so ago, now she has a 3 cm tumor in her lung and really does not care, she does not plan to do anything for it, just accept what comes.  She lives witl her son.  I go there since I rent a garage from them for the past few years and we talk when I go.  I have told the son you have to talk some sense into her, but now I am starting to feel she may have a point.  Something to think about too.  Lot of thinking to do, I know one thing for sure, will not get caught up in the chemo merry go round.  In my mind, radio surgery and maybe  immune therapy such as Cimavax or whatever seems best at the time.  Thanks for helping out. 

[BridgetO]

Hi Mike,

Like Steff''s mom, my small  nodule wasn't seen unitl it got bigger, then they could look back on a prior CT and see where it was beginning. The pulmonologist showed me the images so I could see what she meant. I'd suggest getting a second opinion. That way you can go back to your original doc if you decide you want to. If you simply make a change, you may end up with someone you like even less  ;-( . Sad but true. Also , has your pulmonologist taken your case tp a tumor board? and if so,what did they say?  If you haven't had experience with these boards, they are groups of docs of various speicialiies who look at records, discuss  and make recommendation. My surgeon took my case to tumor board in part to see if anybody thought my nodule could be biopsied without taking it out-- it was in a difficult position. They concurred that it couldn't be. For another prior (non-lung) cancer, one of the tumor board docs recommended more chemo than my oncologist did, so I got a second opinion and ended up having the extra chemo.

It's frustrating, but hang in there-- there is often no right answer. If you keep asking questions, you are likely to find a course of diagnosis (and treatment if needed) that you can be OK with.

Bridget O

[LexieCat]

Sounds to me like you're getting some great feedback.  As far as letting it go and doing nothing, THAT, IMO, would be a mistake.  Sure, there are lots of things that can go wrong.  But if it is cancer, and you do nothing, it's pretty much guaranteed to be a bad outcome.  Even with a small post-op complication, my lobectomy was a virtual walk in the park, my cancer turned out to be VERY early stage, and I now feel great and only have to be scanned a couple of times a year.  Now, that COULD change in the future if something turns up--a recurrence, a metastasis.  But if all continues as it appears right now, I have potentially another 30-plus years of a cancer-free life.  All for the cost of a few days in the hospital.  I call that a pretty good deal.  If I had done nothing, well, sooner or later these things are deadly.  I had adenocarcinoma and people die of that every day when it progresses to the point where it can no longer be treated.

Do your due diligence, find a doctor you trust, and go from there.  But it's WAY too early in the game to be throwing in the towel.

[Mike Monaco]

Hi Bridget O,

I do not think he has done that.  When he called he told me the doctor he contacted about my case took a look at the images and decided a biopsy was in order.  He looked at a few CT going  back to mid 2015 when I started having an issue with Eosinophils in my lungs due to my autoimmune condition.  No mention of a tumor board was made. THe Pulmonologist did not seem like he wanted to spend time on the phone, just called to inform me of what they decided.  When I disputed some statements he made, he tried to get off the subject and cut it short, I did not care  much for that, especially the more I think of it.  I have a feeling our relationship will be coming to an end, but before I sever it need to speak    to the doc next week and perhaps another Pulmonologist in my neighborhood that I used to use until my Insurance changed, he was really good and HONEST, but could not afford to pay out of pocket and pay insurance premiums too.  I guess just about everyone on this site goes through this BS, you just have to advocate for yourself

[Mike Monaco]

20 minutes ago, LexieCat said:

Sounds to me like you're getting some great feedback.  As far as letting it go and doing nothing, THAT, IMO, would be a mistake.  Sure, there are lots of things that can go wrong.  But if it is cancer, and you do nothing, it's pretty much guaranteed to be a bad outcome.  Even with a small post-op complication, my lobectomy was a virtual walk in the park, my cancer turned out to be VERY early stage, and I now feel great and only have to be scanned a couple of times a year.  Now, that COULD change in the future if something turns up--a recurrence, a metastasis.  But if all continues as it appears right now, I have potentially another 30-plus years of a cancer-free life.  All for the cost of a few days in the hospital.  I call that a pretty good deal.  If I had done nothing, well, sooner or later these things are deadly.  I had adenocarcinoma and people die of that every day when it progresses to the point where it can no longer be treated.

Do your due diligence, find a doctor you trust, and go from there.  But it's WAY too early in the game to be throwing in the towel.

This forum defintely has caring people, I was lucky to find it You are absolutely right, if you wait eventually you get to the point of no return, but that even happpens when you catch it early, I read about that all the time.   I have dealt with cancer personally 3 times, each time with one of my dogs.  I was very hands on with both conventional and alternative  therapies, 2 were saved, one was not, one thing about cancer,  when you bother it,  it gets angry and becomes more aggressive.  I used to have a lot of talks with my dogs oncologist, very knowledgeable, great person.  He had a lot of theories that he put in place that really worked, I think I may go see him within the next week about my issue, believe it or not he also trained at Sloan Kettering at one point, it's all the same, the cancers, the drugs, everything.   I just do not want to do everything under the sun and up a mess from the drugs and lose the battle. Whatever is in the cards will be.   Thank you. 

[Mike Monaco]

Hi,

This thing is getting more confusing as we go.  I gave my ex Pulmonologist copies of my CT scans discs so he could have the experts at his hospital take a look at it.  Seems this growth in a smaller size has been on my CT scans since 2015 but nothing was said.  Way back then it was 8mm but never identified, so in 2.5 years it has grown to 1.6 cm, when they finally ID it.  I has been growing all that time  and doubled in size, before they woke up.  FYI, so others that go to this place will know to watch out, I have been going for all my scans at a place called Zwanger & Persiri in the NY Long Island area, so have your scans doubled checked elsewhere for accuracy. My Pulmo was really pissed off, since he ordered the first 2 scans and they did not ID it, and he did not have them to see. This has been growing for  a few years, who knows what else is going on, stray cancer cells siting here and there waiting, they may already be a decent size, we just have not scanned my entire body  for them. .  So far it has grown very slowly, he said from Nov 2015 to  July 2016 it went from 8mm to 1.4cm, and now Dec 2017 to 1.6cm, so seems to be slowing down quite a bit.  I think even touching the primary tumor could be a mistake until we know what else is going on,  does anyone feel the same or have another opinion. 

[Mike Monaco]

I pushed my Pulmonologist to have a Pet scan done in lieu of a biospsy since I think knowing if there are mets is very important considering the tumor has been there for a while, she still wanted to do a biopsy that according to everyone would be difficult, I don't understand her reasoning, we can do that after if needed, at this point I am more interested in knowing  if I have other spots.  Am I wrong in wanting it done asap?  Thanks. 

[Mike Monaco]

I have a problem, my Pulmonologist was supposed to get me set up for the PET, but she has done nothing.  She has been dragging her feet for this whole problem.  I called her office today and she did not even call me back,she had one of the girls in the office call me and say she wants an interventional pulmonologist to see me, the appt they gave me was  Feb 13.  Why do  I have to see this person, according to the radiology report they advised I have a Pet scan, I need to know what is going on in me and she is dancing around and giming this thing time to do more damage .  What can I do to get a script for a Pet and authorization?  I am really getting uptight about this now.  I want to get this thing out of me and she is not helping me.  Who can I turn to for this?  Can my primary doc get it or do I have to see another pulmo doc?  You guys should have an idea on how to go about it.  Can I call the insurance company and  submit the report saying I need a PET?  Please let me know, I am getting very nervous with this runaround.  HELP!

[Tom Galli]

Any physician can order a PET scan. I’d see my general practice doc and have one ordered. Having said that, insurance could complicate the problem. PET scans are expensive and insurance often balks at allowing.  Make sure your insurance will cover the test before contacting your doctor.  An interventional pulmonologist generally performs bronchoscope procedures.  These allow doctors to both see and sample a nodule without surgery or needle biopsy.  Perhaps that is what your pulmonologist had in mind.  

Cancer is the domain of a medical oncologist. You might consider finding one and let the oncologist lead your diagnosis. 

Stay the course. 

Tom

[David Sevey]

Mike, 

I understand what you are feeling and going through.  I have been living it.  The hardest part is the wait, some of the appointments and phone calls were days and weeks and that was far worse than anything.  I have had countless CT scans and only a few PET scans all due to insurance.  I was told that usually, insurance does not cover the PET scan unless the CT was unclear or not conclusive.  On my treatment team due to Stage 4 adenocarcinoma "hopefully I spelled that right"  non-small cell lung cancer I have my GP, Lung Doc, Palliative Care, Radiation Doc, and Oncologist.  It's a crazy journey and I am happy to share any experience I have had or just be a sounding board, whatever you need to help we are all here.  

Keep positive, Keep asking questions.

 

David