Brand new, surgery 7/10--caught by screening!

[LexieCat]

I was a smoker most of my life--from age 16 until about a year ago.  Before that, I'd been mostly using e-cigs but still smoking one a day.  When I went to see the doctor for the first time in many years, at age 59, for all the "stuff" one is supposed to do around that age--colonoscopy, etc.--my doctor told me about the "new" lung screening programs.  I qualified for screening, so she told me to think about it/read about it--that there were pros and cons (the cons being possible false positives with unnecessary procedures).  I ultimately decided to do it.

At first scan, there were about four small nodules in various parts of my lungs, so they had me come back three months later.  None of the nodules had changed, so they had me come back in a year.

This time, ONE of the nodules in upper left lobe had grown SLIGHTLY since the previous year--from .7 cm to .9-1 cm.  My pulmonologist felt it was "highly suspicious" and recommended a lobectomy.  The screening program is affiliated with MD Anderson, and he referred me to a surgeon, who ordered a PET scan.  The PET looks very good--the only spot that "lit up" is the one nodule they are concerned about (which in addition to growth, apparently has suspicious "spicules").  The surgeon professes not to be certain it's cancer, but realistically I'm confident in my own mind that it will turn out to be.  I am scheduled for VATS (or robotic surgery, depending on availability of operating rooms) a week from Monday.  Surgeon (I LOVE both of my docs--they are awesome and I met some of the surgeon's other patients at the cancer center who praise him to the moon) says he will remove tumor, take it to lab while I'm still under to have it examined, and remove lymph nodes.  If it turns out to be benign, that's it.  If it turns out to be cancer (as I suspect), then assuming no spread to lymph nodes, I will be put on regular CT scans for at least a couple of years.

Needless to say I am less than thrilled I have to deal with any of this, but under the circumstances it seems like about as good a scenario as one could hope for.  I'm not freaked out, particularly, but I have made some arrangements like updating my will, etc., that I have been meaning to do anyway.  It gives me a bit more sense of controlling what I can to get my ducks in a row--I would hate to have to be rushing around doing that if things were to take a bad turn.

Glad to find this forum--I've been active on other support forums and they are great for getting info from people who've BTDT.  

Would love to know if anyone else here was diagnosed as a result of screening--I am SO grateful my doctor mentioned it to me as an option.  As slow as this thing apparently is growing, god only knows where it might travel before it got big enough to cause any symptoms!

[Tom Galli]

LexieCat,

Welcome here.

I'm a big fan of early detection for lung cancer and low dose CT scan screening.  It is the only reliable way of finding lung cancer before spins out of control and it appears you've done so.  First, one point -- if you are being biopsied for suspicious cancer, I suggest you include a medical oncologist in your stable of medical practitioners.  If the nodule displays cancer, a medical oncologist should quarterback your treatment team and finding one you are comfortable with and consulting before surgery might prove helpful (vital).

I unfortunately was diagnosed in an age before screening and consequently spent more than 3 years in constant treatment to achieve a no evidence of disease (NED) result.  NED is the term we use these day having discarded the word "cure" in the lung cancer community.  Lung cancer is persistant and if the pathologist's examination of your biopsy shows metastatic disease, you'll have a long tenured relationship with your medical oncologist going through recurring screens.  And these are vital.  I still see mine twice a year having survived now more than 13 years after diagnosis.

Have a look around the site.  I suggest while waiting, you read into the disease to become familiar with the nomenclature.  Here is a good place to start.

Questions? This is a good place for those. OBTW - spent summers of my youth in South Jersey -- Ocean City.  This in the heyday of Campbell Soup vegetable farms and before the Atlantic City Express way and casinos.  

Stay the course.

Tom

[LexieCat]

Love OC--it's beautiful.  I'm in Camden County, right across the river from Philadelphia.  I'm being treated at the MD Anderson Cancer Center at Cooper Hospital--I worked in Camden for many years and have always liked Cooper and the Cancer Center, which is relatively new, is really awesome.  They have all the pros working together for a multidisciplinary response.  Some of my surgeon's other patients that I met had much more complicated situations with metastases, chemo, etc., and they felt they were receiving the best care available.

[BridgetO]

Hi and welcome.  My situation is similar to yours sin some ways, but different in others. I'm a non-smoker.  I have routine CT scans due to another cancer which could metastasize to lungs. Last year a small suspicious nodule appeared in my right lung. In 3 months I was rescanned and it had grown slightly. The docs said it looked suspicious, but that it didn't look like a metastasis,but they couldn't be sure. On a PET scan, it didn't light up at all, but they said slow-growing cancers sometimes don't. Because of its location, it couldn't be biopsied without taking it out.

In November of last year, I had a right lower lobectomy by VATS. They also took out a bunch of mediastinal lymph nodes. The diagnosis was adenocarcinoma stage 1A. I'm one of the few people you will hear say thay they were glad for a diagnosis of lung cancer. If it had been a metastisis from my other cancer, the prognosis would have been much worse. 

The VATS surgery wasn't too bad. I was discharged from the hospital the following day with a chest tube in place. I was soon up and around, walking around my neighborhood.  I hid the chest tube and drain bag under an oversized raincoat. The pain was manageable. I took opiods for a few days and then tylenol. I learned how NOT to move. I had the chest tube for 10 days. Many people have them out sooner, but I had a small air leak. Once the tube was out, I had hardly any pain at all..  

My main recommendation to prepare for surgery is to get a bed wedge. I was advised to sleep with my head and chest elevated 45 degrees. At first I tried to do this with pillows, but ended up not sleeping well and getting a kink in my neck. A  12 inch foam bed wedge solved the problem. I used a small pillow on top of it and found a very comfortable position to sleep in. My second recommendation is, if you're discharged with a chest tube, is to get some chux (disposable underpatds) or have a thick towel under you in bed in case your tube leaks.

Best of luck to you! Feel free to ask any questions you have. People on this forum have a lot of experience and knowledge.

Bridget 

[LexieCat]

Thanks, Bridget!  Tips like the foam wedge are GREAT--anything that will make the week or two following surgery more comfortable is welcome!  I live alone, but I'm spending the holiday weekend this weekend taking care of household chores so I come home to a clean house and don't have to change sheets or anything.  My neighbors are at home all day, so they are available for me to call on if I find I need any help or errands run.  I work from home when I'm not traveling for work, and my job is very flexible/accommodating, so I can work for a couple of hours here and there as I feel up to it, but don't have to do anything strenuous or drive or anything.  

I'm NOT underestimating the unpredictability of this disease, but I'm an optimist by nature and am encouraged so far by how things are going.  I'm especially relieved to have doctors I am EXTREMELY comfortable with/confident about.  I'm also grateful I'm in good health otherwise.  I need to get more exercise (rather sedentary lifestyle) but I've lost a lot of weight this year (COMPLETELY on purpose--I worked for every half pound that has come off) and all my recent lab results have been great.

[Lydia V]

I am definitely a fan of screening. Especially because I requested a chest x-ray (I wasn't aware of the screening at that time) a year before my diagnosis. My Doctor asked me why I thought I needed one to which I replied that I had a 30+ pack year history (I had quit 15 years earlier). The Doc asked me if I was having any symptoms to which I replied "no". She said there was no need for an x-ray if there wasn't any symptoms. Needless to say I was quite angry when I was diagnosed with stage 4 one year later. I changed to a different primary care Doctor immediately. I still get angry when I think about it. Especially since 75% of lung cancers go without symptoms until stage 4. Now I tell everyone I know that has been a smoker to get the scan!

Lydia

[LexieCat]

Yeah, I think if there's one person (almost) as happy as I am that we caught this with the screening, it's my primary.  It's funny, I am a retired prosecutor who handled crimes of domestic violence for many years, and I chose this doctor because she literally saved the life of one of my victims, who was being horribly abused.  This doc not only treated her until she was brave enough/safe enough to report, but helped her formulate an escape plan.

So I REALLY liked and admired her, and decided to use her as my primary.  REALLY turned out to be a great choice!

[Lydia V]

 

I'm so glad that it worked out for you. I now have a PCP that is phenomenal and works closely with my Oncologist.

Thank you so much for doing the work you did! As a former Psychotherapist I worked with many victims of abuse and so appreciate all the members of the team to assist and support them.

I wish you the very best in your journey. There are so many great options for treatment and more being developed. There is many reasons to be optimistic!

Will keep you in my thoughts and prayers.

Lydia

 

 

[LexieCat]

Thanks, Lydia,

I appreciate the work YOU folks do, too.  In my current job we work closely with advocates and therapists who work with victims.  I know as a prosecutor, the advocates were a lifeline not only for the victims, but for me.  The more supported victims are during the criminal justice process, the more engaged they remain and the less likely they are to return to the abuser, recant, testify for the defense, etc.  

I'm sorry your cancer was not spotted sooner.  I'd be angry, too!  But it sounds like you've got a positive attitude and are dealing with what's in front of you.  Believe me, I'll be recommending scanning to everyone I know, too!

[LexieCat]

I was just reviewing my pre-op paperwork, and was surprised to see the date of surgery listed as 7/13, not 7/10, as I'm POSITIVE the surgeon and I had discussed.  I have a call in to straighten it out, but it's the weekend and so not easy to get a quick answer.  I have the surgeon's cell, which I will call if I haven't heard back from anyone in a few hours.

It really doesn't make a huge difference to me (I'm not superstitious but glad to see the 13th is a Wed., lol), but I would like to let my friends/family/work know.  At least I looked at it now, rather than waiting till next weekend!

Ugh, these little snags get magnified when you're dealing with something like this.

[LexieCat]

OK, false alarm.  At least I don't have to change the title of the thread.  Surgery IS scheduled for the 10th.  After I got no call back from hospital staff for whom I'd left messages, I called my surgeon's cell (which he had given me and urged me to call "any time").  He said when we first met he had them put it down for the 13th because there was a long procedure he had scheduled for that day, but that that had been rescheduled, so it WAS the 10th, as he had told me.

Whew--I am now reassured that I don’t have a brain tumor that’s making me hallucinate.  I was questioning HOW I could have imagined the wrong date!  

[Lydia V]

LexieCat,

Somehow I missed seeing your post until today. I'm sorry I wasn't there for you. How did the surgery go?

Lydia

[LexieCat]

Oh, thanks for asking, Lydia.

It went reasonably well, with a slight detour to deal with a pesky bout of post-surgical crepitus:  

The bottom line is I'm still waiting on the full pathology report, but it was an adenocarcinoma, and lymph nodes were CLEAR.  Got a followup appointment with surgeon and oncologist next week--right now looking like no further treatment but we'll see what oncologist says.

[LaurenH]

Hi, LexieCat,

Thanks for giving an update! I hope you get a good report from your surgeon and oncologist next week. Keep us posted!

With gratitude,

Lauren
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Digital Community Manger
LUNGevity Foundation