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Goodmorning All!!

Boy, I never thought I’d see the day that I would be on a site such as this posting as a patient, but here I am. June 29, 2018 found me at the ER with pneumonia and low oxygen saturation level. (I really am one of those who NEVER gets sick??!!) The last time I was hospitalized was 26 years ago giving birth to my son. Long story short, my chest X-ray revealed pneumonia, a blood clot and a small mass. Suspicion led the dr to biopsy the mass that returned positive for cancer. I have a PET scan on Wednesday and a follow up with an oncologist on Friday. I feel great outside of a dry cough.  I cannot even wrap my head around this? I’m 53, have never been ill with anything and now I am a cancer patient?? Part of me wishes to get this going and over with and the other part wishes to just walk away and deal with it myself. (I’m not Wonder Woman by any stretch, but you will never find me laying around because I don’t “feel good,” I just seem to heal better that way). 2 years ago I had a chest X-ray for an upper respiratory infection and my X-ray was clear of having anything wrong, including the infection.....how optimistic do I dare to be with these new findings? I don’t even know where to begin with questions.

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Hi, Candi, and welcome.

I think it's always a shock to hear about cancer.  I was in a screening program to look for it because of my smoking history, and it was STILL a shock to hear.

We have a lot of long-term survivors here, including those with advanced cancer, so there's no reason not to be optimistic at this point.  

Do you know the size of the tumor that was biopsied?  Do you know what specific type of cancer you have (adenocarcinoma, squamous, small cell, etc.)?  Those are a couple of things that will determine treatment.  Once you get the PET/CT scan, that will indicate whether there is likely any metastasis to other places in your body.  That, too, will help determine treatment.

If you need surgery, that is not necessarily a big deal at all.  I had one lobe of my left lung removed last year, and because it was caught so early I didn't need any further treatment (just regular scans to make sure everything stays good).  I was in the hospital only a few days, back at work in less than three weeks, feeling almost completely normal after three months.  I have no shortness of breath or other problems.  

Depending on the stage of your cancer, you might need chemo or radiation, and/or targeted or immunotherapy.  Do you know if they have tested your tumor for genetic markers?  Depending on the stage and type of cancer, those markers can suggest targeted drugs that will work on your specific type of cancer.

Glad you found us, this is a great place for support, knowledge, and suggestions.

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Hello Lexicat,

Thank you so much for the welcome and quick response. I have yet to get a PET scan to determine much of anything and just finding out 2 days ago, I am sure I will not be accurate on the terminology. The dr said the mass was not quite 3mm? (I believe that is the correct unit of measure). He also did identify it as Adenocarcinomo however discouraged me from “Googling” it as he says there are too many variables to consider. As of now, the mass is in the lower quadrant of my left lung. Now that the pneumonia is cleared, I feel really good except for the nagging dry cough that leaves me feeling a bit spent for awhile. (I’m a goer and doer so this is hard on me!! :)). My go to response is to just shrug it off and go on business as usual, I refuse to take time to relax and heal with any other “bug” but maybe I shouldn’t be quite so wreck less with this? My apologies, as most probably do, I have a million questions and yet my impatience is ready to be done with this and get back to my job, my schooling, and my home renovations. Thank you so much for listening and I promise I am hanging on your every word. God Bless you Lexicat.

Candi

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Well, one thing I think you may not be correct about is the size of the "mass"--a term referring to a tumor that usually is 3 cm or greater--which would be 10 times as large as a 3 mm tumor (which would typically be referred to as a "nodule," rather than a "mass").  So you might want to get clarification on the size.  

And I think what he meant when he was trying to discourage you from googling is not to get hung up on survival statistics--which for any lung cancer can be pretty scary.  The thing is that those stats are based on people diagnosed over five years ago (with advances being made every day), plus they are averages--there's no reason not to assume you'll be on the long-term end of the curve.  :)  With so many variables, I found it VERY important to google and research online, as long as you are looking at reliable sources.  Lungevity has a "Lung Cancer 101" section here: https://lungevity.org/for-patients-caregivers/lung-cancer-101.  

Lung cancer is nothing to mess around with.  There are times when you will have choices to make, but those should be informed choices.  For instance, my cancer was Stage Ib, which happens to be the only stage for which chemo or other drug therapy is considered optional.  For 1a, it's generally NOT recommended because it actually does more harm than good.  For Stage II or greater, drug therapy is almost always recommended (and/or radiation, depending).  I opted to forego chemo, and instead go for scans every six months to monitor for any recurrence.  Lung cancer is very tricky, and it often recurs or spreads after first-line treatment, so even if you have "curative" treatment that appears successful, you have to continue to be vigilant.  

All that said, depending on what your further tests show, treatment may not impact your life all that dramatically.  Every case/patient is different.  

So I wouldn't be casual about it, but you certainly don't need to hit the panic button at this point.  You DO need to inform yourself, though, and treat lung cancer as the worthy adversary that it is.

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Oh, and incidentally, adenocarcinoma is the most common type of lung cancer--my surgeon refers to it as "garden-variety."  It's neither the least nor most aggressive type, but it's probably the most well-studied, and there are a lot of types of treatments available.

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ouHi Candi,

Welcome to the club nobody wants to join. I'm sorry to hear about your diagnosis. Cancer is really a hard thing to get your head around. Your doctor is wise in recommending you not Google at this point. It's hard to know what information is reliable and also to understand some of the technical stuff that is reliable. If you want basic and relaiable info, a good place to start is Lung Cancer 101 at the main Lungevity site. Here's the link: https://lungevity.org/for-patients-caregivers/lung-cancer-101. Later on, you may want to Google, but I agree not now. When looking at any lung cancer info (or thinking about lung cancer), here are a couple of things to keep in mind. First, treatment is changing and improving by leaps and bounds. There have been 17 new treatments approved in the last couple of years. Statistics are typically based on 5 year  periods, so by the time we see them, they're outdated.Secondly, statistics are based on large numbers of people and everybody is an individual. So they don't tell how YOU will do.

A lot of us do just fine-- you'll undoubtedly hear from many of them here.

I'm 72, had my lower right lobe removed in Novermber 2016, My cancer was small and slow growing and I didn't need treatmenr other than the surgery. Like LexieCat,  I recovered quickly and am doing well.

Hang in there and let us know what questions you have and how we can support you.

BTW,  I see you're from Oregon. I'm in Portland. Not many of us Oregonians on these forums.

Bridget O 

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Candi,

I was 53 when diagnosed with non-small cell (NSC) lung cancer.  My stage was IIIB and the type of NSC is Squamous cell. Did your pathology report of your biopsy return a type of lung cancer.  This information is important because type dictates treatment.

Let's deal with your optimism, or rather the lack of it. We all know it hangs like a weight.  Here is my experience as an optimistic example.  Diagnosed in February 2003, I was in nearly constant treatment for almost 4 years before I achieved no evidence of disease (NED).  The lung cancer community uses NED as our term for cure because lung cancer, unfortunately, is persistent and recurrence frequent.  Rather than launch into a thesis of medical statistics, take a moment to read this and do listen to Dr. Gould essay imbedded in the blog.

As to where you begin with questions, you begin here.  Answers are what we offer and while not doctors, we have "actual experience" with the disease. Your next step is likely a treatment plan an you might read up on lung cancer treatments here.  To be frank, lung cancer and treatment are not a walk in the park, but treatment outcomes are so much better than when I was diagnosed.  

Stay the course.

Tom

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I sometimes wonder if they shouldn't call cancer (or at least lung cancer) the healthy person's disease. I also was very healthy and had nothing but a dry cough. Felt great. Once had a doctor tell me that barring accident I should live to be 100. Having been around this forum and reading posts for almost 2 years now, so many of us are exactly like that-very healthy. Wonder if there's a clue there?

Judy M

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Hi Candi - I have no knowledge to share. I'm just amazed at how similar your story is to mine - pneumonia, mass in lower left lung, pulmonary embolism (I had 4 small ones). Except that your doctor did a biopsy and now you know what you're dealing with. Mine sent me home from the hospital to wait SIX WEEKS for a PET scan. He said that a biopsy would be too difficult with the location of the mass (my mass is 4x1 cm). So I will have my PET scan on 7/24 and see, possibly, what I'm dealing with. 

Best of luck to you from the Midwest. 

Sue

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Hi Sue,

Our stories do share a striking similarity. In hindsight, I can say that I am thankful my Dr was diligent about getting the biopsy and had already pre-scheduled me with an oncologist just in case it came back positive. I was unclear about the unit of measure used, but reading yours mine must be 3.3cm. I know the numbers are correct and he said it wasn’t very big at all. I pray that is all they find Wednesday but whatever the size it has compromised my breathing a bit. Do you have any symptoms you’re dealing with?

candi

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Hi Judy,

I would love to believe there is something positive to being healthy in spite of the diagnosis, it would seem there would be benefits. Having cancer is one thing, my biggest struggle right now is not being able to breathe comfortably. Hopefully that isn’t a negative indication. Thank you for your information and replying, God Bless.

Candi

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Hi Tom,

For now I am told my cancer is Adrenalcarcinoma. I’m still trying to learn the terminology, but I am pretty sure it was also said the mass measures 3.3cm. The dr said really quite small? I’ll know more after my PET scan on Wednesday. Thank you for the links and additional information, I will be diligent to follow through with reading the links you sent. God Bless.

Candi

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Hi Candi - I don't have any symptoms in my lungs. I was supposed to have a hip replaced this summer, and possibly a knee. I'm 60, and the arthritis has been getting so bad the last couple of years I now use a walker. I'm terrified the PET scan will light up at all my joints, but there's no real reason to think that.

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Yes the PET scan is my fear also however I will face whatever the results with as much positive determination as I can. I wish you well on yours also.

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LexieCat,

I did go back and pull up my chart records and the dr states it is 2.7 cm and stable. What exactly that means I do not know but I am sure I will find out more this week. It’s also interesting to me that your surgeon refers to Adrenalcarcinoma as a garden mix, the Mayo Clinic site calls it aggressive, reoccurring and if caught soon enough about an 80% success rate of 5 years. One reason I hesitate to delve to far into the information until I see the oncologist, lord knows I need very little help with confusion lol.

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The term is "adenocarcinoma," not "adrenal carcinoma" (which would refer to a cancer of the adrenal glands).  Even though lung cancer sometimes metastasizes to the adrenal glands, it's still considered lung cancer, not adrenal cancer.  LOL, Judy can tell you I'm our resident spell-checker, but I just want to be sure you have it right so you're looking up the right thing.

Adenocarcinoma can, indeed, be aggressive, though it isn't considered the most aggressive type of lung cancer.  How aggressive it is varies from person to person.  Not all recur, nor do they spread, if surgery can remove it at an early stage.  

2.7 cm isn't tiny (it was large enough to biopsy) but it's small enough that there's a good chance of removing it by surgery (lobectomy), unless it's in a dangerous location or your lung function would not permit surgery.  Still, if the PET scan should show that it has spread, you might get chemo before any surgery.  It really does depend on a lot of factors.  

I'd suggest you start making a list of questions for the doctor.  He might not be able to answer them all till more testing is done, but over time and with more information, the path forward will be clearer.  This really is one of those "one step at a time" things, which can be frustrating while you are waiting for tests and results.  Ultimately, though, that's the best way for the doctors to figure out the most appropriate treatment.

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 About aggressiveness: my adenocarcinoma was so slow growing and small that it didn't light up the PET scan at all, so I think mine, anyway, wasn't very aggressive. I was told that thr is  a high rate of recurrence. I hope if it recurs it's as sluggish as the first one.

Bridget O

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Thank you LexieCat, I feel better already knowing I wasn’t even looking at the right thing LOL!! A list for the dr is a great idea, I guess I was just going to wait to see what they concluded but I agree with you that I should be ready as well. Thank you so much 😊

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I like the sound of that Bridget, thank God yours was so slow, I want that one too please and I don’t ever want yours to return ❤️ Thank you for sharing that with me.

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Candi

If someone hasn't alerted to you to this already Lungevity has a list of questions you can print out to take to your Oncologist. All this is so overwhelming that it's hard to even think about what to ask let alone remember it. I know my reaction when I first read the list was,' Oh yeah, I want to know, or need to know, that."Lexie will probably hop on and send you a link. She's so ready and willing to help. We love her. She's our go-to-girl

. Also, I put a good recording app on my phone and recorded my visits with my Oncologist. You will  be overwhelmed by information when he starts talking to you too. This way you can play it again whenever you need to remember something. And I just emailed those early recordings to my family who of course all want to know what the doctor said. That way I knew I was getting it right. 

Judy M. 

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Aw, Judy is such a sweetie.  (Actually, I'm just sort of a geek when it comes to this stuff.)

Here's the list she was talking about:  https://lungevity.org/for-patients-caregivers/asking-right-questions/questions-to-ask-your-healthcare-professionals

Oh, one other thing.  Recording the doctor's visit is a great idea, but be sure you get your doctor's permission first.  Oregon is a one-party consent state (meaning that legally one party to the conversation can record without the other's permission), but that isn't true everywhere--in some places it would be against the law.  And anyway, it's best to establish a good relationship with your doc, who might feel upset at your recording without his knowledge and consent.

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Thank you to both of you! I will be sure to utilize both at my visit. This forum has been so helpful and uplifting to me, I cannot thank all of you enough! God Bless.

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I have a question I don’t really expect anyone to be able to answer completely, but it’s kind of bugging me just the same. When I think of just about any “specialists” in their field, I assume at first glance they already recognize a lot before even getting to the more thorough inspection. The doctor that requested the biopsy told me that he threw out a few questions to the pathologist that confirmed my cancer to better help me understand kind of what I am dealing with. He said the pathologist said that he had no idea what he was looking at nor knew any specifics to share. The pathologist has no idea? I wouldn’t expect he could assess and devise a treatment right on the spot, but shouldn’t something look even remotely similar to other biopsies he’s diagnosed? Just wondering if anyone else had experienced this.

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Candi

Will give this a shot. Not sure I understand your question exactly,  but I hope so. What is learned immediately after the biopsy is done and what is learned after it is sent off for further investigation can be very different and is certainly much less. The initial pathology report when the tumors in my lungs were biopsied said no malignancy found. Very excited-happy dance done by all. The report after more (in depth I suppose it would be) testing was Adenocarcinoma and how well differentiated it was and a lot of other information that allowed the Oncologist to know exactly what we were dealing with. Later biopsy on Adrenal met showed it originated with the lung cancer and not the breast cancer I'd had previously, but that was about it. Again, the more in-depth testing that we all have to wait for showed much more-right down to what drugs were most likely to kill my particular cancer. All that to say that the pathology report you get immediately after your biopsy can show little and even be unreliable. Does that help answer your question? 

Judy M

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The Pathologist may have just been playing it safe. Not wanting to possibly happen exactly what happened to me. Joy, joy, joy, then the kick in the gut later. Cancer is always an emotional roller coaster, but that experience was even more so. 

Judy M

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