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Cancer navigator wanted...


Ann Cronin

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Good morning, Heroes,

Heroes... anyone required to take this journey is a hero. 

So it's official, biopsy shows non-small cell adenocarcinoma. PET did not show anything light up other than the lung. Next step is seeing surgeon on Wednesday. Waiting for call to schedule MRI to make sure no mets to brain. If the MRI comes back with no sign of mets, Pulmonologist's best guess is stage 2 but can't say for sure. I am grateful, I hope after MRI I can still say "I'm very grateful I have stage 2 non-small cell adenocarcinoma."

The waiting .... having a real hard time with this whole process. I wish there were cancer navigators. I have SO many questions, which, unfortunately do not come until an hour after any given appointment, procedure, test..... I go in with my list of questions only to find I don't ask them because I am now receiving new information and trying to process. I feel like I'm living in a twisted reality puzzle. 

I want to understand the pathology report, why? I don't know..... I want to talk to someone who can give me the bigger picture, I like organization. I'm having a hard time with this process. My personality type is to have ducks in a row, a plan and an end result. The only thing I have after 4 weeks of tests, appointments and procedures is more tests, appointments and procedures. 

I want a cancer navigator. Apparently I will find that with medical oncologist but I don't see them until after decision is made by surgeon. If surgeon decides on surgery, I don't see a medical oncologist until after surgery. I'm struggling with each specialist only able to answer questions in regards to their specialty. I need a cancer navigator...

Though I'm exhausted and frustrated by what feels like a life in complete chaos, I see the good. I have to tare down many layers to see it but I see it.

The nurses and doctors have been absolutely amazing, what an incredible group of people. I feel blessed to have been assigned to A1 professionals. Stage 2??? I feel incredibly blessed if I can keep that stage. God is with me every step of the way, I feel Him and I see daily how His hand is in the details.

But..... I really want a cancer navigator...

Until next time, fellow heroes, be blessed!!

Ann

 

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Hi Ann  Welcome to the world of tests I got lucky and they found something on x-ray mid October 2017 and that set the  ball rolling with some delays along the way Three biopsies and three CT scans and a lung function test with a pet scan scheduled for Febuary 16.  I meet the oncologist on this coming Tuesday and the radiologist the following day and as say to myself back on the bus as this is my second cancer after fourteen years  free after the first.

Bob

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OK, well, so far the probability of metastatic lung cancer (which is what you originally thought) is down, right?  Nothing else lit up on the PET/CT.

And I'm no medical expert, but I met a guy in my surgeon's waiting room who had a brain metastasis.  He said he was one of only a handful of those the doctors were aware of who had a brain metastasis without its showing up first in lymph nodes.  So I'm betting there will be no brain metastasis.  

With surgery, assuming the result shows you to be Stage II, you will probably have a course of chemo after surgery.  And that might be it, assuming your lymph nodes are clear.  

Unfortunately, this is just one of those situations where it's impossible to ask all the questions or to anticipate everything that might happen until it happens or is revealed as a result of surgery or testing.  Try to just focus, as best you can, on what will happen at each stage of the process, as you enter that stage (and I'm not using "stage" in the oncological sense, I just mean at each point in the process).  If you try to get too far ahead of yourself, like visualizing all the possible moves in a chess game, you will make yourself nuts worrying about stuff that may never come to pass or things you may never have to consider.   I understand your urge to KNOW--that's one of the most frustrating things about this whole deal are all the unknowns.  But there truly isn't much we can do to make it predictable.  

I'm glad you like and trust your doctors.  At your next visit, I'd suggest you find out whether there's a way to communicate with questions in between appointments.  

 

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Hi Ann,

I understand why you want a cancer navigator. I've had 3 cancers: breast (Stage 1), cervical (stage 3, and a rare type) and NSCLC (stage 1). I'm NED on all 3 and I still want a cancer navigator. I have had too many doctors. I've needed  lot of specialists and also my HMO has had turnover, resulting in serial doctors. I've had medical oncologists (4 plus a nurse practitioner), gynecologic oncologists (2, plus a physician's assistant),  two regular gynecologists and a nurse practitioner, a radiation oncologist (only 1 and she's great!), general surgeon, thoracic surgeon, pulmonologist, primary care doctor (2), also physical therapists for cancer treatment side effects including lymphedema (2 plus a PT assistant). Two cancer counselors.Also, numerous radiologists and (regular and interventional), pathologists, a genetic counselor, all of whom I've seen once or never. Other than one medical oncologist who I fired and the physicin assistant who i would have fired is he hadn't left the practice, nocomplaints. The rest have been just fine, ranging from just OK to wonderful. 

  I feel like each of these people knew or knows one aspect of one part of me  (or one part at a specific point in time) and the whole me falls by the wayside. I do track when I'm  due for  followup and by whom. When something comes up in between those times I don't know who to call.  Any of these cancers could metastisize anywhere, so I think I can be overreactive about aches and pains, or even  unusual sensations. I have a genetic VUS (variant of uncertain significance) in a tumor supressor gene. It's unclear whether this may be rela.ted to my having 3 "unrelated" cancers and whether it increases my risk of additional cancers.  I really wish for some medical professional who was acquainted with all of my cancers and more importantly, who knew me as a whole person and not just an Adenocarcinoma Stage 1a or a lymphedema of the lower limbs secondary to lymph node removal and pelvic radiation. A cancer navigator, maybe

So that's my rant, I guess, and not really an answer to your question. 

Bridget O

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@ Lexie - In my original post, I created the title from my ER diagnosis "Probable metastatic lung cancer" was written on discharge paperwork. That being said, yes, one lymph node nearest the nodule tested positive for cancer. The next nearest lymph node was negative. I guess I didn't explain it quite right initially.. so the only area that lit up was the nodule and lymph node - they are very close together. I think that is what makes me stage 2 and not stage one. So I am concerned about the metastasis.

The Doc said they could surgically remove nodule and node and possibly chemo might be my decision. I've already decided, I'm having chemo. This damn disease has a mind of it's own and there is no way I'm chancing that a single cell wants to live rent free in my body. I will definitely ask about in between visit questions, thanks for that advice!!

@ Robert God bless you!!! It has been exactly 4 weeks since my initial diagnosis in the ER - I feel like things are moving quickly but still not fast enough. I pray things move along quicker for you going forward!

@ Bridget I can totally relate, you're exactly right, nobody knows me as a whole person, perfectly stated! Wow.... you have been through so much, you have every right to a rant, any day!

Does anyone have a comment to this....? In the past year, I've learned of 4 people diagnosed with lung cancer - 5 if I include myself. One co-worker, one family member and 2 not close friends. It feels like an epidemic to me, I thought that before I was diagnosed. Has there been an uptake in LC diagnosis'? Seems a bit much....

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Ah, OK.  I didn't realize the node had tested positive.  Still, nothing else lighting up is a good sign.  Yes, my understanding is that anything beyond Stage 1 usually involves chemo.  I had the option, as Stage 1b, but my surgeon strongly felt it would not have been worth it in my case, and after doing my own research, I agreed--we are just going to continue to monitor.  You mentioned originally that there were two nodules in the same lobe--did both of those light up?  Just curious--removal of the lobe will take care of both of them.  

Everyone has his/her own approach/outlook on these things, but I always like to hope for the best--it never hurts to do that, as long as you also prepare for the possibility there may be more challenges than you hoped.  

You can probably find stats online about the incidence of lung cancer.  I suspect, though, that it's a combination of our all getting to the age where it's more likely to show up, and the phenomenon that makes you notice, right after you've bought a car or something, all the people out there driving the same car.  IOW, we are hyperalert to the number of people with the same condition.  

Hang in there--you'll get through all this stuff.  Just keep putting one foot in front of the other. :)

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Ann,

Welcome here.  I see you've already got lots of good information.  So, I'll just chime in on a couple of things.

Here is an essay that lots of new folks have appreciated.  

Cancer navigators are wonderful but so is knowledge.  Knowledge generates questions and in this disease, all questions are important.  Some, like the one my wife asked, saved a life.  Here is the best and most easily understood material on lung cancer.  If you run across a question in your reading, by all means, tee-it-up right here on this forum.

I really want my ducks in a row.  I even want their bills aligned!  I'm a retired civil engineer and Army officer so everything in my world is planned, organized, scrutinized, and controlled -- everything but lung cancer.  I tried for a nightmarish three years to control this disease.  My failure became severe depression.  Part of this forum's benefit is learning from our experience.  Learn about lung cancer, absolutely.  Try and control treatments, outcomes and side effects; forget about it!

Your surgeon's at bat now.  I can't see why you don't have a medical oncologist in the on-deck circle.  Start the medical oncologist selection process now.  I'd even try and squeeze in a consultation before surgery, it it doesn't delay surgery. Perhaps your surgeon can provide a referral. Give some thought to where the medical oncologist practices.  Those who practice in hospitals generally use large hospital chemo facilities.  My oncologist practiced at a small clinic.  While the treatment won't be different, the environment will be.  It is nice to show up for infusion without spending hours searching for parking and being one of 10 or 12 scheduled as opposed to one of 100.  Mine was a small but full service oncology practice.  I got all my scans, radiation, radiology, radiation oncology and medical oncology in one dedicated clinic. Another important advantage is having the same radiology doctors interpret scans.  I know you'll be a long tenured survivor and that means at least quarterly scans for perhaps a year, then twice a year, then annually for the rest of your life.  Having the same people performing and reading the scans is a definite advantage.

As for lung cancer frequency, it is not an epidemic; it is a pandemic.  Here is some data.

Stay the course.

Tom

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Lexie - another mystery! Originally they saw two nodules but the second one looked "odd" they said. It was closest to the lining. I had pneumonia and since that first CT had antibiotics and coughed up a ton of crap. So when we went to Pulmonologist to discuss results of PET & biopsy he was referring to "It". He never even showed us the scans. After appointment we were disappointed in that and wondering why he talked like it was one nodule? Normally I would have been all over it but was pretty distraught with cancer confirmation (couldn't stop crying) and trying to listen to the new information I was getting. That's what I mean when I say it's only after these appointments do I come up with the questions. So when I meet the surgeon on Wednesday, first thing I am asking is to see PET scan and get an explanation of what exactly is going on.....

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That's pretty much the question I wanted my oncologist to answer.  My scans have showed, variously, in my right lung (other side): one nodule in the middle right lobe only, one nodule in the lower right lobe only, and none in the right lung at all.  Apparently some of these things can appear/disappear, and my nurse navigator (don't get excited, I'm not all that impressed with her navigation skills) tells me it's also possible for some to be missed on some scans, depending on the "slice" (which I'm not completely sure I understand).  So maybe it was just part of your infection or something, but I'd sure ask about it.  Either way, though, if there are two in the same lobe, a lobectomy will get them both.

Incidentally, I have two nodules in the lower left lobe that have showed up on every scan.  And they seem to just be hanging out doing nothing.  They will continue to monitor them with the scans.

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Yes, I'm definitely asking about it. One would assume talking with the surgeon it should come out in conversation about surgery but it's on my list just in case.

The two nodules in your lower left lobe... they must be very small? I'm so new to all of this, I just assume if there is a nodule they are going to biopsy it, especially in someone who has already been diagnosed previously. How often do you have scans when monitoring nodules?

 

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Well, when I was first scanned, there were a total of four nodules--the one in my upper left lobe (the one that eventually went renegade), the two in the lower left lobe, and one of the ones in my right lung.  Because there are so many things, other than cancer, that nodules can represent, the nodules are not necessarily a big deal.  I was at risk because of my smoking history (why I was being screened in the first place), so they had me come back in three months for another scan.  There were no changes, so I was told to come back in a year.  When I came back the next year, for my usual scan, this time the one nodule was larger, and it was spiculated, and just looked suspicious.  It looked suspicious enough that my doctors saw no point in a biopsy--they felt regardless of the results (because biopsies can miss cancer cells, too), it should come out.  The two nodules in the lower left lobe are .3 cm, so yeah, very small.  My cancerous nodule was pretty small, too--1.5 cm when it was removed.  

I'm just really grateful my primary physician suggested the screening program.  If I weren't getting screened, who knows how big this thing might have grown, or how far it could have spread, before I found out about it?  Needless to say, I'm recommending it to anyone I know with the requisite smoking history.  I know at least one person who went because I told her about it.

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Oh, and forgot to answer your last question.  I get scans right now every six months, which I believe will be the schedule for the next five years, after which I think it drops back to annual.  And that's because of the diagnosis.  Had that not happened, the nodules would have been monitored annually during my annual screening.

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