44yo male n/s just Dx IIIB

[hard2handle]

I have to be honest, I'm still struggling with disbelief and sporadic bouts of "why me". I've read enough now to understand that my demographic may be "rare" but not sure if it is uncommon anymore. I think my case illustrates the challenges of getting a diagnosis and staging quickly, especially in someone without symptoms or has other masking issues.

I'm pretty much over the "what could I have done differently" thinking. If anything, the blood clot surfaced this sooner because based on how I feel now (very good), I would not have been to see my PCP yet, and probably not for some time - i.e. a planned physical next fall.

That's all I can muster for now. It felt good to write this out sequentially (still shaking head in disbelief )

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25-Oct-2011 - suspected blood clot on Rt leg while on business trip out of town and went to ER. No PE symptoms so no chest x-ray or CT done at the time. Discharged with Arixtra and Coumadin. Flew home next morning.

28-Oct-2011 - PCP orders chest x-ray at my request as I was ideopathic for DVT and had done some quick google research on malignancy as cause. Results show focal consolidation on lower rt lobe. Recommend follow-up CXR in 1mo and correlate with symptoms (I had none). On coumadin (3mg). Subsequent dopplers show no evidence of that clot and DVT may have been superficial. I have had some "migratory" phlebitis episodes while therapeutic on coumadin since (painful but essentially "harmless", in grand scheme of things now at least).

8-Dec-2011 - I paid for a private "wellness" scan (low radiation, no contrast version of a CT called an EBT) in place of CXR. (I was still determined to find "source" of blood clots because despite travel, I had "nagging" feeling / parnoia that it was something else). Results showed lymphadenopathy and a 2.5cm nodule

12-Dec-2011 - PCP orders CT with contrast that confirmed nodule and lymphadenopathy. Only symptoms are a little extra phlegm and some rt shoulder pain blade that comes and goes. Neither viewed initially as significant due to reflux / digestive issues I had been battling for years and lots of rowing, weightlifting, and tennis. I was in the process for being evaluated for Chron's and/or RA since autoimmune issues run rampant in my family and also have a tie-in to clotting. The lymph swelling was significant enough to push for tissue samples.

28-Dec-2011 - Bronchoscopy to examine lung / airways and try to get tissue. Got samples from carina, paratracheal lymph, and lavage of rt lobe. Wet read was inconclusive. Airways were a bit inflamed and dr's leaning towards maybe lymphoma or inflammatory issues related to autoimmune or infections.

3-Jan-2012 - Got "the call" from pulmonologist. Primary lung adenocarcinoma confirmed in carina, lymph, and cell washings. Now, I know there were definitely many things pointing towards a LC Dx but was blown away at the time. I was initially staged a IIIA but if I understand correctly, carina makes it a IIIB by default. There were no additional nodules or lesions, just cells present in those areas.

5-Jan-2012 - Met with an oncologist at hospital where all of the diagnostic work was done to determine next steps, additional tests, etc

9-Jan-2012 - PET/CT, Brain MRI in the morning. Meet with second opinion oncologist and thoracic surgeon at local NCCN cancer hospital. I brought the scans with me and they read "on the fly". Said MRI clear and PET correlated to last CT. Some discussion about getting more tissue and IIIA v IIIB that was unresolved when I left.

10-Jan-2012 - Met with first oncologist and was surprised with 8mm "lesion" on pelvis with low uptake that was not mentioned the day before. Recommended further investigation. Second opinion less concerned but agreed that MRI to rule out met was good idea.

12-Jan-2012 - MRI confirmed no lesion but small stress fracture with swelling that caused the PET uptake. Still concern that cancer activity caused weakness in area.

16-Jan-2012 - CT guided biopsy on pelvis. IVR confirmed he "got good sample" and "hit the spot" in the room with pathologist

17-Jan-2012 - Met with Radiation Oncologist at NCCN hospital where I decided I would do any treatment. Since the IIIB -> IV staging implications of radiation were TBD based on the pelvis biopsy, we worked on a "Plan A" and "Plan B". They called pathology at the other hospital (I was kind of "in between" at this point) and the wet read was negative for cancer. I kind of compartmentalized this because I didn't want a let-down if it changed after all the slides and stains were done.

18-Jan-2012 - Pathology / Radiology confirmed no cancer in pelvis. Suspected sports injury or maybe some arthritis (I think there is still a rheumatoid / chron's-ish "overlay" to everything else going on with me). Follow-up MRI suggested at some point in future.

19-Jan-2012 - Appointment to do radiation marking / planning CT, etc. Plan to start on 1-Feb-2011. 6.5 weeks, approx 62-64gy. Will most likely hit esophagus hard with carina, lymph involvement.

23-Jan-2012 - Met with oncologist at NCCN center (my primary now). Specializes in lung cancer and very tight integration across thoracic surgery, radiation, and medical oncology. 2 weeks of Cisplatin/Etoposide, overlaid wk1 and wk5 of radiation, starting 6-Feb-2011.

Now - working out, hydrating, researching, reading, "fattening" up a bit (i'm pretty thin to start with and not much room for a lot of dehydration and/or missed meals during treatment). Mutation testing is out to the labs and awaiting results.

[eric byrne]

Hi,

Welcome to LCSC,phew,I did read every word of your post,I have to say,most of it went right over my head,think I am going to have to read it a few times and then consult a medical dictionary,LOL.My experience is really limited to my cancer journey,you'll be pleased to hear,I am one of the least educated of survivors here on lung cancer,I am sure your post will make perfect sense to the other buddies here.

I am sorry to hear of your dx,I do know at this moment in time how you are feeling,all of us here have gone through the same at the outset of our cancer journey.

I am sure as you read of the buddies here stories you will begin to realise,that your situation is not the end of your world,that there is light at the end of the tunnel,with the passage of time,your anxieties will begin to subside,and your confidence will develope that you can regain the person you were prior to your dx.

I can remember my attitude just post dx,each morning I woke the first thing that came into my head,was that I have lung cancer,its going to kill me and in the not too distant future.I never thought that I would ever overcome this gloomy thought,but with the help of family and friends,posting here,gradually my anxieties disapeared.I discovered a whole world of lung cancer survivors,covering a hugh range of lung cancer types and stages,that are surviving this disease and getting on with their lives.In other words they have the attitude,that I may have cancer,but it dos'nt have me.

I have a friend,Robert Lowe,briefly,dxd in 1993 with SCLC given two months to live,had other plans,made a full recovery,then in 2007,dxd with NSCLC,has treatment,today,at 72,is enjoying great health,having a lust for life of a 21 year old.

I wish you all the very best as your medical team put together an action plan,for the best course of treatments for you.I had chemo and a upper right lobectomy,I really sailed through the lot with only the slightest of discomfort.

Looking forward to getting to know you,bye for now.

[dianew]

Welcome to this club no one wants to belong to - but there are lots of wonderful people here who have been just where you are now. My dx and treatment plan was the same as yours, except I have squamous cell rather than adenocarcinoma. I started with Cisplatin but eventually was switched to Carboplatin. I actually gained weight during chemo. The best advice I can give is hydrate, hydrate, hydrate!

Nothing about this journey is fun, but I think you are at the hardest point now. Things usually settle down once you get started on the treatment plan.

You might also want to check out cancergrace.org. Most people here also post there. There are a group of oncologists who donate their time to answer questions (in a general way of course), and there is a huge amount of good information on almost every aspect of LC.

Please keep us posted as to how you are doing.

Diane

[RandyW]

This site is great fir the emotional support and first hand knowledge of things and Grace.org is also great for the scientific info part of the disease!

Bulk up your weight now and stay with some pounds on you!

hang tough and keep posting and asking questions !

[hard2handle]

Thanks for the kind (and quick!) replies. Dr(s) West, Sanborn, and Pinder already helped me through one of the more confusing part of my diagnosis! The combination of this site and cancergrace really helped me get a jump start on feeling (somewhat) in control quickly post-dx.

I'm going to try to really focus the next few days on trying to relax and getting ready for the treatment. I know as much as I'm going to for awhile, have confidence in the approach, have great team of doctors, and tremendous family, work, and community support. Forward....

[RandyW]

if you ahve any questions about side effects or anything like that we can help ! Just let us know what Chemo you are going to be on. and as far as eating always keep snack food around and eat when your hungry not when you have to eat!

[jaminkw]

Welcome, sorry you have to be here. After coming to this site, I was surprised at how many people did not have symptoms and were diagnosed incidentally to some other issue. That is one of the reasons some of the research is focusing on tools for earlier detection.

I agree that once treatment gets into place, things begin to settle into a new normal. I agree that you should try to put on some pounds before radiation. I think I understood that is in the esophagual area. I believe I've heard that can cause some difficulty in eating. I was tiny when dx'd but quickly put on weight on chemo--too much for my liking but the drs seem to like us a little chubby--fat to spare lol.

I've leave my signature on the bottom of this post. You'll see I'm a adenocarcinoma 3b surving 4+ years. Most of it has been on treatment but living life pretty well.

Glad to hear you had more than one hospital to choose from. That usually translates into having faith/rapport with the onc you chose. Very important. Keep us posted now on how you are doing.

Judy in KW

[Donna G]

Welcome, it is great that you found us. Those of us here all know support is necessary to help in this process.

I read you also had some intermitten shoulder pain. That is what sent me to the Dr. I thought it was an orthopedic problem, but it was a lung cancer tumor in the apex of my lung pressing on nerves. I hope you respond as well as I did to treatment! Keep us posted.

Donna G

[Bud Baker]

Welcome, glad you found us! Your fitness level will serve you well. I was already a long distance cyclist when I was diagnosed, and was back on the bike 16 days after surgery. I think that made a big difference in my recovery.

The biggest thing I would emphasize about chemotherapy is to do your best to stay well hydrated. Dehydration can really sneak up on you on days you don't feel well from the treatment, and makes things much worse.

Best wishes and keep us updated.