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Not Sure Which Way to Go

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OK, first I am an ex smoker, many years past, think it was 1995.   Anyway, no issues that I was aware of.   In 2013 I developed an autoimmune disease, Sjogren's Syndrome.  This has many issues, very similar to Lupus at it;s worst, or as minor as maybe a bit of dry mouth for some.  One of the issues can be lung problems, since many members of the online Sjogrens forums have them.   My  issues  were  dry mouth and sometimes eyes until last year.   In Nov 2015 I was short of breath, had a X ray done and it showed my trachea was pushed to the side a bit, not straight up and down as it should be, so they told me to see a pulmonologist.   He set me up for a CT chest scan.  It showed my thyroid was enlarged and impinging on my trachea and inhibiting breathing a bit, so we did an ultrasound of the neck and it showed how large it really was and how it affected my windpipe.   Now the problem, the CT showed  some issue on my lung, the radiologist said it was either "inflammatory or infectious" and should repeat in 6 months.  We redid last month, July, and it should mild progression, same language as before with recommendation to redo in 6 months.   Actually the shortness of breath is better now since I have been doing things to help my thyroid, nutrional.  Now my pulmonologist wants to do a PET/CT, which is a load of radiation, about 30 msev, compared to the 3-5 msev of the chest CT.   Right now I am saying WHOA!   Need time to think!  This is going too fast.   He recommended some tumor markers be done, CEA, CA-125 and Cyfra21-1, all come in within ranges, but from what I read they are not too great to diagnose, mainly used during treatment to gauge if things are helping  or not.  .   I think this may be getting overblown and the continuing radiation exposure can cause problems in the future.  Are there safe ways to find out if it could be cancer without all this radiation?   I heard of biopsy, but risks can be collapsed lung plus, if it is cancer that can result in seeding the tumor.  I have a decent knowledge of cancer since I have gone through 3 dogs with various cancers and learned a lot since I tried to save them, and actually did save 2 even after oncologist gave up!  So now I come here asking for guidance, anything  you have to say would be greatly appreciated.  Just bounce any ideas you have off me, thank you.

 

John

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John,

Welcome here.

Wow!  Tough choices!  Knowing what I know about lung cancer, I'd advise two things: (i) consult with an oncologist and (ii) let the oncologist make the call about the PET/CT or biopsy.

A pulmonologist plays a very important role in treating lung disease; an oncologist treats cancer.  If you pulmonologist suspects cancer, you ought to be seeing an oncologist.

One note of caution, however.  The best lung cancer treatment results stem from early finds.  If this is cancer, from you description of the problem, it could be an early find.  I'd want to find out one way or the other.  So, I'd be seeing an oncologist, pronto.

Stay the course.

Tom

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Hi Tom,

 

 I took your advice and found a list of a number of oncologists in my area that were good and took my insurance.   I just called my first choice of the list to make an appt, but they told me I need a diagnosis from the Pulmonologist that I have cancer before making the appt, it seems they believe the oncologist is NOT the person who needs to make the diagnosis, but the Pulmonologist is the person to do so.  .   I am so disgusted with this BS, even this is a problem.   Did I speak to an idiot in the doctor's office?   I am calling another one just in case and update here.  

 

John

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John,

Maybe but I'd be persistent.  I'd try it another way.  Call your pulmonologist practice administrator and tell them to process a referral to one or several of the oncologists on your list.  There ought to be an abundance of information in your medical record to justify such a referral without having to go back to the pulmonologist.

But, did you know that Murphy was a medical practice administrator?  If one can screw something easy up, they will.  If it were me, I would remind my pulmonoligy practice that I already paid for time and consultation and desire they process my request for an oncology referral.  Then I'd show up at the practice office if they didn't react to a phone call.  When I showed up, it wouldn't be pleasant!  OBTW - ensure you get a complete copy of your medical record including all images and test reports.  You paid for that also and by federal law have an unfettered right to it.

Stay the course.

Tom 

 

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Tom,

 

I have no problems with my Pulmonologist at all, he will bend over backwards for me, nicest Doc I have ever dealt with and very competant, the problem seems the oncologists, they want a diagnosis handed to them on a plate,  let the other guy do the work and they will just administer the chemo or whatever is on sale this week.   I called another Onc and at first was told the same thing by the receptionist, but them she said if I send her a copy of the Rad Report and the Pulm's notes she would show them to the doc for his opinion, what do I have to lose?  I just sent it all over and now wait to hearback, maybe he will take me in if he sees a need, IDK, worth a shot, otherwise  need  to get some proof, hopefully that nothing bad is going on.   Is the Early CDT Lung Blood Test reliable,  I avoid CT if possible, have had 2 in last 6 months, last in July, so maybe a PET/MRI, not crazy of Fine Needle Biopsy, not really that accurate and can cause cancer seeding, which is your prefrerence.  Thanks for the advice and time.

 

John

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Johnny,

Sorry, I though the pulmonologist was the problem.

That is really unusual behavior by oncology practice in my experience.  I wouldn't know about a CDT lung blood test.  Last I heard about this test, it was still in trial. 

About the CT radiation, I've had maybe as many as 60 CT scans and about 10 PET/CT scans.  I know there is a concern about radiation but I am vastly more afraid of cancer than I am of damage from radiation.  Seeding is a risk with needle biopsy.  It is also a risk from surgery or surgical biopsy from what I've read.  But tissue examination by a pathologist is the gold standard for diagnosing type of cancer, and type must be known before treatment can occur. 

My biopsy involved surgery at the base of my throat and the surgeon performed a cervical mediastinoscopy to harvest lymph nodes and a couple of samples from the tumor.  He discussed the risk of seeding but we also had the risk of metastatic spreading because my tumor was very large.  So our decision was easy.  We needed a type confirmation.  No one doubted it was cancer from its location and presentation.

Hope this helps you make a decision.

Stay the course.

Tom

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Hi Tom,

Sorry, probably did not make it clear, I do that a lot, always figure the other person knows what I mean, but glad we cleared that.   Anyway, all my info has been sent to the oncologist to look over and I guess make some decision on what I need next, hopefully nothing!   I guess I am very inexperienced in all this stuff with radiation, have it in my mind that just the smallest amount is not good for you, but as you pointed out from the number that you have had (which boggles my mind!)  that may not be the case.  I am sure there is a point where that would be true, but the minuscule amount I have had barely scratches the surface, it really is the only way to know what is going on and I have to keep that in mind and loosen up a bit.   This is a new experience and have to come to grips with it that it may become a part of my life.   I have to say after reading the link you have concerning your experience,  I just cannot believe what you went through, I cannot see myself being about to go through that, don't know how you were able to hold it together, but from reading everything, you owe a lot to your GP, he was a big force guiding you on the road.  My cousin, only a few days past his 36th birthday, passed in 2011 from Karposi Sarcoma after a 4 yr battle, multiple surgeries, chemo and radiation, but he did not have it nearly as tough as you did. 

In reading your account, I find a lot of similarities between us, age is just a few years different, I was drafted in 1972, did my time and went home instead, finished college.   Never married, after my father passed in 1982, I moved back home and took care of my mother until she passed in 2003 at 93yo!, then began doing things for myself, still not married, but have lived with 2 so far, but did not work out.   That is one thing that sucks, no support network, as you know, living alone is not all it is made out to be, the bachelors life is great in your 20's-30's, but having a family with kids is the way to go after that, maybe that will still happen, who knows.  At least for you, this stuff is behind you and making things happen  can become a reality if you want it to be so.  So now I just wait and see what the Onc has to say, I am pretty sure he will want to pursue it, if for no other reason than to rule it out for certain.  Ya know, years ago a friend and I said if we ever got cancer, we would not even bother to treat it, just grab all our money and go to Vegas and do the town until we dropped dead, not really a bad way to go when you think about it :) (I am sure a number of people have done that, though not on purpose)

 

John

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John,

In my long survival tenure, I've often examined my initial treatment decision in terms of your suggestion, avoid treatment and go to Vegas.  I won't to into details  but you can read about them on September 1st on the Amazon Kindle Store.  My book Scanziety publishes (shameless commerce message).  

Here is my evolved thinking on treatment and life.  I now believe that if one chooses treatment, one is choosing life.  That choice implies a decision to do something with the life we are granted.  None of us, cancer survivors or not, know how much time we have.  Some cancer survivors get a prediction but it is only a prediction and in my case in turned out to be an irrelevant prediction.  But, this is an evolved philosophy, looking retrospectively.  It is not the way I behaved or thought during treatment.

My treatment was a mayhem.  I completely forgot about the purpose of treatment and got mired in frustration, pain, despondence, and depression.  I know of many cancer patients who trudge that same path.  I lived through it and because I did, I can suggest to folks that cancer treatment does not need to upend your life.  I've watched some who took that advice enjoy life during treatment and enjoy it after.  As your Vegas analogy suggests, joy in living is the objective. 

A take away for you, having read my treatment experience, is how to avoid it.  Early find, easy treatment, high survival prognosis are the opportunities for you.  I'd find it, fix it and finish it.

The support network is hard but here at LUNGevity, we can match you up with a survivor who you can talk to and who understands what you are feeling.  If you are diagnosed with cancer, let me know if you want a in-person support resource.  I can make that happen.  Moreover, there are numerous cancer support group meetings and I've attended many.  I even went to a wedding of two survivors who found each other at a support group.  There are support network solutions.

Stay the course.

Tom

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Hi Tom,

I very much look forward to reading your eBook upon release.  I went through Amazon and read the preface and was very much surprised when it stated the support you received from your cargiver, Martha, your wife.  You had never mentioned her in the link from which I read about your diagnosis and treatment, if fact it stated you were unmarried at the time you went through the cigarette quitting process.   Anyway I am sure there will be much to learn, in a way I am a bit afraid to really learn all you went through, the brief synopsis tied to the link was already overwhelming to me and made me think how can I possibly go through this.   At this point, what lies ahead for me is unknown.  Your assumption of an early diagnosis may be accurate and a subsequent easy treatment may also be true, BUT, once all is know of what is going on may end up being totally different and it could even be worse than what you went through, no one knows at this time, it may only become know as treatment progresses.  I have heard of many others being told, "we got it early and this should take care of it and you will be done", but ends up becoming a stage 4 diagnosis somehow, I hear this all the time. 

I called the oncologist office this morning to see what was doing and the receptionist told me the nurse practioner is reviewing everything and will call me later in the day.    When I called on Wed to make an appt with the doctor, I was told to send my info and the doctor would look over things to make some type of determination, now that has changed and a nurse practioner is reviewing my records.  In my book an oncologist is much more qualified than the NP, not too happy about this.  I was not looking for a free evaluation, my insurance pays for any services rendered by the doctor, so why take the cheap method.   Think I may need to be looking for another oncolgist, one that at least follows through on what they say they will do.

 

John
 

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John,

I'm not sure I would conclude that a oncology practice nurse practitioner's evaluation of your medical situation would be less thorough than an MD.  Nurse practitioners go through a great deal of training, then they do a "residency" in their desired practice speciality.  I've encountered many who work in my GP, Surgeon, Pulmonologist and Oncologist practice. I've seen many.  My annual physical is performed by a nurse practitioner at my GP's office.  He reviews the results but I am very satisfied with the nurse practitioner standard of care.  In Texas, NPs can hang out their shingle and practice in family medicine without medical doctor supervision.

If your health records, lab tests and imaging is being reviewed by a nurse practitioner in an oncology practice, I'd conclude you will get as good a review as an MD.

I hope you get an answer soon.

Stay the course.

Tom

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Tom,

I waited until 4:30, no one called, so I did.  Recording said they close at 4 PM, but gave the option to speak to the after hours attendant, which I did and explained I was waiting for call back with evaluation of my CT and records, so the rep said he would contact them about this.   The rep called back 10 min later and told me the office told him to tell me I would have to wait until Monday for any info, they did not even have the decency to respond themselves, real nice!  Definitely not the type of office I would want to deal with going forward, unless GOD was the oncologist.  This is a nice welcome to the world of oncology.  If this is the way they deal with patients I can see why there is so much mistrust  of these doctors.  
When he calls on Monday there will be no answer.  I hope he has a  lousy  weekend like I will. 

 

John

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I had an appointment with a new Pulmonologist, one that has extensive experience with autoimmune disease caused lung issues, he reviewed the reports and I brought him a CD of the film which he looked at.  In his opinion this is NOT due to autoimmune, he has scheduled me for a biopsy on Monday, at that time we will know exactly what this is  and if my life will forever change.   The oximeter readings were very low, guess I got used to low O2, since I did not really feel that bad.   I always knew one day I would pay the piper.   I spent a lot of time taking care of my dogs when they had cancer, I literally put their needs before mine and spent a good portion of my savings to help them, you would have thought the big Man upstairs would have given me a break.   To  continue....

 

John

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Hi,

They ended up delaying the needle biopsy until Wednesday, thankfully it went off without any issues like collapsed lung or whatever else can go wrong.  The doc called me this morning, results: Equivocal.  In other words the sample they got is not clear one way or another, so now I am back to where I started, never thought it would be so tough to get a diagnosis.   My dogs had the needle biopsy for 2 breast tumors and one oral tumor, and they all came back with a definitive answers.   The doc wants me to come in on Tuesday to discuss my options.   What other methods are there to diagnose when this fails?   I will have to do some research or maybe call up the oncologist who treated my dogs and ask him, it's all the same regardless of species.  Will update.

John

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