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So many tests.....


freisadm

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Just got released from the hospital after having a collapsed lung.  Chest tube inserted.  I have previously had a ct scan, pet scan, ct guided needle biopsy.  The needle biopsy caused the collapsed lung. After they put the chest tube in, they kept me and the following day they did a mediastinoscopy and a bronchoscopy.  Not good news.  The adenocarcinoma is stage III.  They will decide if it is IIIa or IIIb after the pathology is done.  The thoracic surgeon said it isn't operable at this time. Probably radiation and chemo, then possibly restaging.  The pet scan gave max suv  of 12.7 on the mass (4.3 cm x 2.9 cm) in the upper left lobe. Small amount of post obstructive atelectasis or consolidation anteriorly and medially.  There is associated left hilar and mediastial nodes adenopathy. Precarinal lymph node to right of midline measures 1.4 x 1.3 and max suv of 6.9.  Left hilar lymph node inferior to lung mass measures 1.4 x 1.0 and max suv of 6.7. There are other mediastinal nodes at all approximately the same axial level of the left hilum.  Not sure about all of this, just trying to figure things out.  

Right now, I have to wait about 10 days to see the surgeon and start with an oncologist.  Currently, my voice is very hoarse and clogged up.  The biopsies were done 4 days ago. I thought I would not be quite so hoarse by now.  Can't believe this is all happening to me.  I'm a 57 year old former smoker.  I quit 12 years ago and had no symptoms.  The masses were found after a routine chest xray 

Any insight or advice would be helpful

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Don't have a lot of insight, other than the observation that we have quite a few long-term survivors who were Stage III or higher.  I imagine you are hoarse from the bronchoscopy.  When I had my surgery, I had a sore throat from the breathing tube and was hoarse for a few days.

It's always tough to wrap one's head around a cancer diagnosis.  Once you have a game plan and start your treatments I think you will feel a bit more positive--sitting around waiting for stuff to happen is one of the more frustrating aspects of this whole deal.  Why are you seeing the surgeon in 10 days--just for followup after your recent procedures?

Hang in there.  Once you know more about your treatment plan, folks here who have had similar treatment can give you an idea what to expect.  Everyone reacts a bit differently to radiation and chemo, and you won't know exactly how you will feel till you get started, but it's good to know sort of the range of possibilities and strategies to make it easier on yourself.  

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That reallyy is  a lot of tests. I agree with LexieCat that waiting for stuff to happen is one of the most frustrating things. And you're waiting for both test results and appointments.

The only advice I have is that you be sure you have biomarker testing (sometimes called tumor genetics or molecular testing). You have a diagnosis of adenocarcinoma. This can be doenn by the pathologist looking at tissue under  the microscope. The biomarker testing is done in a specialized lab that  looks at mutations. Classification helps determine what kind of treatment you will have. Probably your biopsy samples have already been sent out for this testing. You'll find out when you see the oncologist. Here's a link to information about biomarkers. https://lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer

There are a lot of new lung cancer treatments out there and more being tested and approved all the time. Any survival statistics you see will be out of date by the time you see them, so don't get too hung up on them.

Bridget O

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Oh man that bronchoscopy made me cough my head off for a few days after that and my throat was really sore too. I remember calling the surgeon asking what the heck!? He said it was common and would ease up.  It did go away after about a week. It was a long week though. Ugh.

I was initially diagnosed with 3B adenocarcinoma. Also had lymphnode involvement. The mass was initially 5.6 cm and the SUV was 16.

Once you get with the oncologist and they get the test results in they will get you a definitive plan of action. Just having that plan in place helped me. I think prior to having a set plan and during all the testing I was just getting frustrated...all the waiting & worrying.  

Hope the hoarseness eases up soon and you start feeling better. Keep us posted!

 

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Freisadm,

Yes the stage IIIA - IIIB tango, I know it all too well. Sounds like your team wants to shrink things up with chemo and radiation then evaluate surgery.  That is the same track I went down. 

Try Halls lemon drops to soothe your throat. Explore precision radiation as a treatment method in your oncology consult. Read Lung Cancer 101 at LUNGevity.org. Explore targeted therapy, immunotherapy and precision radiation. These are new and vastly effective. 

Hang around and get to know us. My diagnosis was Stage IIIB because of the size of my only tumor. Regardless, my diagnosis was nearly 15 years ago in the dark ages of treatment. I’m still around. If I can live, so can you. 

Stay the course. 

Tom

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  • 1 month later...

Things are progressing.  Started chemo and radiation yesterday.  Very long day, but doing well.  The plan is 4 weeks off after treatment then starting immunotherapy after that.  I had a 90% positive for pdl-1.  They are also doing Foundation One testing (expensive stuff) - hopefully find drugs that will work down the line.  My mri of my adrenals was inconclusive.  The left one lit up on the original pet scan.  They are going with "it doesn't say cancer, it doesn't say it's not cancer".  They are hoping that chemo will make that disappear along with a small ground glass nodule in my other lung (right).  If that doesn't work and it gets bigger - they will end up doing a biopsy and then here we go again.  Feeling positive now that treatment has started.  I did see an ENT for my throat.  My laryngeal nerve was damaged during the mediastinoscopy and I have a partially frozen vocal cord.  They might do an outpatient procedure using an injection - also seeing a speech therapist.  Power of positive thinking and support from family and friends goes a long way.  Bring it on!

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You sound great!  It really does help to have a game plan in place, doesn't it?  The throat/voice thing sounds frustrating, but you've got the right attitude to handle this!

Hang in there and hope the testing is helpful.  Keep us posted!

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Freisadm,

Welcome back.

I had problems with a non cooperative epiglottis after a multitude of procedures. A speech pathologist also treated me. My problem took about 3 weeks to resolve and treatment consisted of chanting very guttural sounds over and over. I hope your larynx wakes up. 

Bring it on indeed!

Stay the course. 

Tom

 

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Glad to hear that you have a plan in place! Thanks for the update and please continue to keep us posted!

We are here for you,

Lauren

Digital Community Manager
LUNGevity Foundation

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  • 2 weeks later...

First round of chemo done.  2 weeks into radiation.  Progress!!  So far it has been up and down.  Good days and not so good days.  I try to walk a few miles every other day.  it gets me out and about.  As long as I walk in the mornings I seem to do ok.   By afternoon, i'm done in.  I am going to have an injection in my vocal cord to try to restore my voice.  That will be on Nov.1st.  Trying to schedule that along with chemo and radiation was a bit of a challenge. Just plugging away day by day looking forward.......

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Freisadm,

Plugging away sounds par for the course. You’ve got a good walking routine in place and I’d encourage you to continue. 

Get ready for radiation side effects this week. Skin burn with a sore throat are common. Don’t hesitate to ask for the special elixir magic mouthwash cough medicine that radiation oncologists often prescribe. Stock up on the Halls lemon drops. 

Stay the course. 

Tom

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  • 2 months later...

Was  hoping for better news. Finished chemoradiation  on November 16th. They gave me a month to recover before having any scans. Took that long for me to be able to swallow again. Lost about  10 lbs. Met with doctor on December 21st. Lung tumor has shrunk some. New lymph node in chest lit up. They also have determined that cancer has spread to my adrenal gland and is now stage IV. Will start keytruda on January 7th. If after 2 scans there is no more spread, they will remove the adrenal gland and hopefully restage back to 3b. All of this is overwhelming. Not sure how to deal. Can’t seem to catch a break. 

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So sorry to hear this. So your lung cancer mass shrunk but the cancer spread to another place. It doesn't seem fair? Not what you would have expected after completing your chemo/radiation. Let's hope the Keytruda does the trick! How long will they have you on Keytruda before they rescan to see if it's working? How did they determine that Keytruda was the next line of treatment for you.

 

Sending you positive vibes and support!!

 

Ro

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Hi, freisadm,

Here's to renewed hope and a new treatment plan in 2019! Please continue to keep us posted. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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  • 4 weeks later...
On 12/28/2018 at 3:09 PM, freisadm said:

Was  hoping for better news. Finished chemoradiation  on November 16th. They gave me a month to recover before having any scans. Took that long for me to be able to swallow again. Lost about  10 lbs. Met with doctor on December 21st. Lung tumor has shrunk some. New lymph node in chest lit up. They also have determined that cancer has spread to my adrenal gland and is now stage IV. Will start keytruda on January 7th. If after 2 scans there is no more spread, they will remove the adrenal gland and hopefully restage back to 3b. All of this is overwhelming. Not sure how to deal. Can’t seem to catch a break. 

You have to stay as strong as you have been as I'm watching.and spurring every one on as my path.will be starting soon I hope on our way back to healthxxx

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  • 3 weeks later...

Crazy stuff. Adrenal gland hope to come out.6 months  Ended up with brain surgery and will have stereotactic radiotherapy when staples come out. Should be able to resume immunotherapy. Have trouble with getting words out. Need walker. Should Improve with pt and ot. They think they got brain tumor. seems chemo and radiation were months ago

 

 

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Thanks for checking in and letting us know how you are doing.  You’ve been through so much in the last two months.  I’ve seen PT & OT work wonders with my Dad following an anoxic brain injury.  The Brain is very resilient.  I will continue to pray for you as you enter into the next phase.  Stay strong....hugs.  

Michelle

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