Newly diagnosed and my life came to a screeching halt

[freisadm]

I am 57 years old and was just diagnosed with adenocarcinoma in my left upper lung.  Had a needle biopsy last week.  This whole thing was out of the blue.  My rheumatologist retired and I had to see a new one.  She did a routine set of xrays including chest.  Thank goodness she did.  I had no symptoms at all.  Right now, I'm waiting to see a thoracic surgeon.  Hoping it will not be a long wait - my left lung is now collapsed and shortness of breath is happening.  This is a complication from the biopsy.  They are talking about a chest tube, but want to see if they can remove whatever portion of the left lobe necessary at the same time.  Also need to take lymph nodes for staging.  I'm at a loss right now.  My dad died of lung cancer 3 years ago and I can't believe it is happening to me.  I've been retired for 2 years and my husband just retired.  We bought a place in Florida so we could be snowbirds.  So looking forward to our 1st season out of the Northeast winters.  We are hoping for a good outcome, but just blindsided by this. We should know more after we see the thoracic surgeon.

[Shelkay1]

My user name is  Shelkay1, although my name  is Shelby. I can't give you much in the way of wisdom or advice; I'm in the boat with you (I'll be 59 on Friday). I was diagnosed with Adinocarcinoma in my lower left lung on 6/20. I had a biopsy, PET scan, bronchoscopy & a medianoscopy. Nothing has shown up in the lymph nodes, but the primary tumor is getting larger. I just had a 3D mammogram this morning @ 7:00; my Dr. said even though I had the PET, this was important to do since these new one can pick up on cellular things PETs can't. I have a lot of apts coming up to make sure I healthy for surgery & I'll be having a lobectomy on 9/14 followed by some chemo. They've not staged me yet; waiting till the lobectomy is done. 

Best of luck & I'll be following your journey! 

[Shelkay1]

Where in the northeast are you? I live in Lancaster PA & am being treated at Penn State Hershey.

[LexieCat]

Hi there, and welcome.  Yeah, this sort of thing is always a shock.  Mine was actually caught during a screening for lung cancer (smoking history) but even so, it's something no one is ready for.  

I'm not sure why they didn't treat the collapsed lung.  A chest tube isn't that big a deal, and usually they want to wait for a PET/CT scan before doing surgery.  If there are any signs of spread, the usual course is chemo and/or radiation first and surgery might never even be in the picture.  A PET/CT can often indicate whether there are any signs of metastasis.

What I suggest for now is that you do your best not to get ahead of yourself.  Your snowbird plans may work out fine.  Once you get a treatment plan in place you can figure out (if you need to) how to coordinate treatment and followup in two places.  

Do you know the size of the nodule that was biopsied?

Hang in there--this is a great place for knowledge and support.  Glad you found us!

 

[freisadm]

So far I have had ct scan, pet scan and needle biopsy. Mass is 4.3 cm with an suv of 12.7. Waiting to hear from the doctor this morning. The collapsed lung needs to be dealt with but doctor wants to set up appt with thoracic surgeon. I live near Albany NY

[LexieCat]

I assume, then, that the PET/CT showed no signs of metastasis?  That's good news!  

One thing to be sure to ask the surgeon--whether you can have the VATS surgery.  It's laparoscopic--only three tiny incisions, and your recovery time (and pain level) will be MUCH better than with "open" surgery (thoracotomy).  Sometimes the location of the tumor won't allow VATS, but if it's available you definitely want to take advantage of it.  Robotic surgery is very similar to VATS--just a slightly different technique.

I had VATS to remove my upper left lobe and I was out running around a week after getting out of the hospital.  

[freisadm]

The pet scan did show enlarged lymph nodes but didn’t think it had spread. They do have VATS available just not sure if they can use it. Hoping for good news. Nice to hear from you!  Hope all is well. How long ago was your surgery?

[BridgetO]

Hello and welcome,

I'm glad you found us! LexieCat has said everything i would say to you. No surprise, she often does. So I'll just say that these forums are a good place to find information, hope and support. Let us knnow what questions you may have and how we can support you. We're here for you.

Hang in there!

Bridget O

[Kleo]

Hi and Welcome!

Hey I'm a Floridian! There are plenty of good treatment centers here too. Maybe after surgery your onc can coordinate with a Florida doc/ treatment center and you could set up winter treatments in the sunshine state! There is something to be said for slow morning walks on the beach and healing. And sunsets. Good for the soul I think.

Hope they get that collapsed lung addressed pronto.  Keep us posted!

[LexieCat]

I had my surgery a little over a year ago.  I was Stage Ib, and had a choice as to whether to follow up with adjuvant chemo.  My surgeon recommended against it, and my oncologist was neutral, so I opted to forego the chemo.  I go for twice-a-year CT scans to make sure everything stays good.

I feel great--no noticeable aftereffects from the surgery.  No pain, no shortness of breath.  My recovery was very fast and uneventful.  

[Tom Galli]

Freisdam and Shelby,

I have a lot in common with both of you.  First, I am a stage IIIB non small cell lung cancer survivor who had my right lung removed (pneumonectomy) using conventional techniques (thoracotomy).  I had a lot more treatment but surgery is the discussion so I'll stay on topic.  I've also spent substantial time in Florida (stationed there in the Army and my daughter and three brothers live there) but grew up in Delaware County Pennsylvania, but one county away from beautiful Lancaster!

Let's say I had the worst case surgical result -- much more invasive than a lobectomy, or VATS and had two more major followup surgeries to deal with suture problems on my bronchus stump.  I've also lived life with one lung (about 38% lung capacity) for nearly 15 years.  I report life is good, grand even as we contemplate our October cruise to take in the fall colors of the Saint Lawrence Seaway close on the heals of our July cruise in the Baltic Sea. So, here is a summation of my surgical experience.  There will be pain.  It will be controlled both in the hospital and at home. There will be discomfort, and it will resolve in weeks.  Life on one lung is more than possible; it is enjoyable.  And, most important, surgery is the most effective way of keeping lung cancer from recurring.  I can't stress my last point enough.

Recurrence is what you want to avoid.  I know well because I had three after surgery.  Unfortunately, I was unable to receive post surgical chemotherapy and tumors occupied my remaining lung.  So, if your doctors recommend post surgical chemotherapy, do not push back.  Yes there will be side-effects and discomfort, but the magnitude is far, far less than I endured.  You are both choosing treatment and therefore extended life.  Don't take shortcuts with the treatment.  Give yourself the best shot at no evidence of disease or NED.

I truly hope your forthcoming consultations and procedures are fruitful.

Stay the course.

Tom

[freisadm]

Latest news is that this is most likely stage 3b. They will never be able to operate due to the location (close to pulmonary artery). Lymph nodes in mediastinum were positive on biopsy. Waiting on an mri of my abdomen to check my adrenals. One lit up pet scan and was larger than the other one. If that scan is clean, (brain mri was clean) then it will be concurrent chemoradiation for 8 weeks. Then 1 month off before a year of immunotherapy.  If the mri isn’t clean, then they said probably stage 4 with just immunotherapy. Just want to get started before it grows any bigger!  Since original ct scan it has grown 1 cm.

[BridgetO]

Even if the news is not great, it's good that you have a plan. Fingers crossed for a clean abdominalmri.

Bridget

[Roz]

Hi Freisadm,

Were they able to discern what type of adenocarcinoma you have and which mutation? I'm guessing that since you are a candidate for immunotherapy, that they got enough of a sample to do molecular studies. Sounds like the plan is evolving. I wish you all the best as you move forward. Good luck with your next MRI!!

Best,

Ro

[Kleo]

Sounds like you could be doing a very similar treatment plan as I have been on! I was also stage 3B adenocarcinoma initially. I've finished the chemo and radiation now- although it wasn't done at the same time, and am about to start the year of Durvamulab therapy hopefully in a couple of weeks. 

They have made Durvamulab the standard procedure now for unresectable 3B lung cancer following chemoradiation, regardless of mutations. I asked my onc if they'd tested mine for mutations and she said no! Well why the heck not!?😫 LOL

Fingers crossed for clear MRI! Keep us updated!

 

[freisadm]

Halfway through chemo and radiation today!!  Managing ok - just anxious for it to be done.  Florida plans are evolving.  Plan is to leave 2 days after last treatment.  Instead of driving, we will be flying and then just buying a car to leave there.  We will be able to have about 3 weeks there before having to head back to the great northeast.  My mass came back at 90 % positive for PDL-1.  I guess the durvamulab is what the doc is looking at starting when we return.  Hopefully start treatment in NY and be able to do the majority of it down south.  Have to deal with the insurance company for out of network care.  That will hopefully happen when I get my voice back.  ENT has determined that the nerve to my vocal cord was damaged during the mediastinoscopy.  They are doing a procedure next week to inject the frozen cord with stuff to bulk it up so it will work again.  Here's hoping!!!!

[LexieCat]

Glad to hear things are moving along so well, and glad to hear there's something they can do for the vocal cord.  

And going somewhere warm sounds GREAT.  It sure got chilly fast here, this fall!

[Laurel]

You are moving forward and facing it head on. It is a difficult journey that seems never ending, but you can do it. Share your concerns or problems with side effects. People here may be able to help. Bless you.

[Tom Galli]

Freisadm,

I hope out of network insurance arrangement you have is better than mine.

I also had complications with my throat as a result of mediastinoscopy and tracheotomy procedures. In my case it was the epiglottis that was affected.  It took me about three weeks of speech pathology treatment to restore my non-cooperative epiglottis to function.  Hope your vocal chords recover quickly.

Stay the course.  

Tom