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Recently diagnosed stage 3A


Robb676

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Hi all,

Living alone, Of course I'm scared.

The middle of July I went to the hospital because I wasn't feeling well and the E.R. Dr told me he had some bad news and some very bad news. The bad news is had pneumonia and the very bad new was a mass on my right lung. 

After all kinds of tests, PET scan, CT-scan, MRI and regular X-Rays along with a lung biopsy it was determined I have a Pancoast tumor the size of 5.8cm x 4.8cm x 6.1cm and I am at stage 3A.

As I wrote above I live alone. I am 55 years old  and my closest relative is about a hour a way. I am going to start chemo once a week and radiation 5x a week, and then surgery.  I hope that I can handle it and still go to work. 

Thanks to the internet I am extremely afraid of the surgery and what they will be doing along with the pain., I have not made up my mind yet.

I have been assigned a Patient advisor from the surgeons office and hope that she can help me. I have excellent insurance and they have paid just about everything so far, 

I would like to know if any one has gone through this on their own and how they did it.

Thank you.

Robert

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Hi Robb676!

Welcome! Wow your experience sounds so similar to mine. I thought mine was bronchitis...went to the ER. They did the chest xray and found a 5.6 cm mass in my lung. Staged at 3 B initially. Still say I had bronchitis too though!

I'm 52 and live alone as well. Most of my family lives in California. I was able to manage chemo and then radiation on my own fairly well. I did not work during treatment but my chemo was full dose (not combined with radiation).  Really everyone handles the treatments so differently, it's really hard to predict how you are going to feel!  Once you start treatment though you tend to notice a pattern to the side effects...and can plan around your less than stellar days.

As far as surgery goes, that is something you'll know more about once you consult with the surgeon. There are lots of folks here who have done the surgery and had fairly easy recoveries and great results!  

I had to finally stop Googling stuff...it just freaked me out. LOL 

Others here will be along with more info and surgery experiences I'm sure!

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Thanks for the reply Kleo.

At my appointment with the Surgeon he told me what he would be doing and that I will be in a lot of pain and will need home nursing or a visiting nurse. I dont like thought of being out of work for 3 months.

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Robb676,

Sorry to learn of your diagnosis.  Like you, an emergency room doctor gave me the bad news.

Your course of treatment -- first line radiation and adjuvant chemotherapy -- was exactly the same as mine.  My second line was surgery also.  I had my right lung removed, and was up the second day after surgery lapping the ward floor.  I was discharged 5 days after surgery and was fine till I developed a fever that again led to hospitalization.  From there, things went down hill quickly.

I had some surgical bad luck.  Many (most) do not.  Surgery is the most effective treatment for lung cancer and yields the best survival probability.  If you have good insurance, it should pay for home health care assistance.  You might need it for about a week.  I wouldn't be concerned about the pain.  Doctors are really good at managing it.  My surgical plan, after a right pneumonectomy, had me returning to my surgeon's office for suture removal about 10 days after surgery and had I not had complications, I would have been back to work very soon after suture removal. I certainly hope you are up an about well before 3 months.

Stay the course.

Tom

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Hi Robb and welcome,

Will your surgery be by VATs (laparoscopic)  or open surgery thoracotomy)? I'm not familiar with Pancoast tumors, but I wonder whether open surgery is needed due to the location. Sometimes open surgery is needed because of the size of the tumor, but I don't think they'll know that until after you have your chemo and radiation since that is usually expected to shrink tumors and make surgery more feasible. 

If your doctor says you will need open surgery, I'd suggest asking why it can't be done by VATs and if you're not satisfied with the answer, you could get a second opinion. I had VATs and the pain was manageable and was in fact fairly minor once my chest tube was out. My tumor was small (Stage 1a), so my experience might be different from yours. I hope you'll get some responses from people on these forums who have had larger tumors removed and maybe from somebody who has had a Pancoast tumor. I think 3 months off work would be unusual for a lobectomy unless there's some kind of complication.

Hang in there!

Bridget O

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 Hi Robb,  Do you have a Pancoast Tumor ?    I am certainly familiar with that.  I was diagnosed Dec. 1997.  

I started with chemo ( Cisplatin and Etopiside) and daily radiation.  It shrunk the tumor in the apex of my right upper lobe of lung.

I had an open lobectomy followed by more chemo.  That was over 20 years ago.  

My only family in MInnesota was my husband who was working and at times traveling on business.  I was very fortunate to have "church family"

They helped me out a lot.  Because of some of he premeds they gave to prevent nausea etc I was not allowed to drive..  They were there for me..

It was well worth it.  I am still here !

Donna G

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Hi, Robb, and welcome!

I didn't know a lot about pancoast tumors, so I did a bit of online research.  Apparently the problem with surgery for those tumors, which makes it more complicated than surgery for tumors found within the lobe itself, is that other parts of the chest tend to be involved.  If you google "VATS pancoast," though, you will find several articles describing a type of hybrid procedure, where VATS is combined with thoracotomy.  Part of the procedure is done using VATS and then the remaining part is done using the open procedure.  It looks like the studies indicate that using the VATS reduced the size/invasiveness of the subsequent open incision, with the patients having less pain and quicker recovery.

Note I am NOT a doctor or scientist, and every patient is different.  Still, it might be worth reading those articles and finding out whether there is an experienced thoracic surgeon who might be able to perform that type of surgery.  You never know unless you ask.  You certainly want the surgery to safely remove the tumor as effectively as possible, but if there's a way to do that and spare yourself some pain and downtime, it's worth finding out.

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Hi Robb,

After the shock of the diagnosis last December (here, if interested), my thought was 'how am I going to do this on my own?' I repeated that question in my head 24/7 along with 'WHY, WHY, WHY'  - I live alone, I have no family and (I thought) no friend who can be bothered.  5 days after the diagnosis was Christmas - the very suckiest and loneliest Christmas of my life, then same sucky New Year's eve came when it felt like the rest of the world is happy, celebrating and/or with someone they love and there I was sitting in my house... at least I had my little dog who's the love of my life and I truly believe he's THE reason I've never lost faith that I can do this, I didn't know how (still don't know how), but I knew I could... I had to, somehow.

I've gone through 1 round of chemo, then oral chemo (targeted therapy, I have ROS1 mutation) which I've been on since 2/1 as well as right lung pneumonectomy on 5/9 followed by (well, after several weeks) 5.5 weeks of radiation.  I was up and walking around the day after they took out my right lung, came home 3 days after and I had a friend who stayed with me for a week and half after I came home from the hospital.   Other than walking my pup, vacuuming and doing laundry, I didn't need her help with anything.  For me 27 radiation treatments kicked my butt harder - by the 4th week, the word "exhaustion" didn't even begin to describe how wiped out I felt.

It's been 4 weeks since the end of the radiation treatments - I drove myself to the clinic everyday - I'm starting to feel it's no longer "exhaustion", but just "tiredness", so it's an improvement.  I took a week and half off from work after surgery and I went back to work (I have a desk job that also comes with work from home option, so I worked from home for about 3 weeks); I didn't take any day off during radiation. 

In summary, I don't know how I've done it (mostly on my own) and I still don't know how I'm going to do it, but I know I somehow will - one foot in front of the other, one day at a time.  During my chemo infusion (one and only session, whew), I was chitchatting with a chemo nurse and I just broke into tears saying "I don't know what I'm doing here".  She wiped away my tears, looked right into my eyes and said "Right now, you're okay".  I realized she was right, right at that moment (with chemo drug dripping into my body and all), I was okay.  When I'm having a bad moment, I say to myself out loud, "Right now, I am okay".

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Yes I have a Pancoast tumor.

The Dr. hasn't said any thing about VATS but I will be asking for sure. But with it being so close to the spine and it pushing on the arms nerves I would like the Dr, to have a better view.

As for a second opinion I am sure they will also say that I have a Pancoast tumor. I dont see any reason to go through the whole diagnosis process again.  It is what it is.

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I don't think anyone was suggesting maybe you didn't have a pancoast tumor--the "second opinion" suggested was with regard to surgical technique.  Some surgeons are better equipped than others to employ the latest, most promising techniques.  Not suggesting the surgeon you have is not--the purpose of a second opinion is just to elicit another perspective.  Most likely the response you have to the chemo and radiation will affect the relative ease/difficulty of your surgery.  It doesn't hurt to use this time while you're undergoing those treatments to investigate other surgeons you might want to consult.  

Of course, it's completely up to you whether you want to do that.  It was just a suggestion based on your concerns about pain and recovery time.  Supposedly the hybrid procedure I mentioned lessens those without compromising the surgeon's ability to operate.

 

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