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Marcie

Father, 59, going through NSCLC diagnosis.

17 posts in this topic

My dad (former smoker, quit 15 years ago) had a CT scan that showed a spot in his lung. They scheduled him for a biopsy and a PET scan.

The PET scan showed one spot on a lymph node (same side as spot in lung) and one spot on his liver, so they canceled his lung biopsy and are going to reschedule and check the liver first. Friday he'll go in for an MRI to see if there's anything in his brain.

I'm so shocked and so sad. He recently started to take his health very seriously, lost a ton of weight, and looks great. How could this be happening? I just pray that the spot on his liver is something benign, but it doesn't seem very likely. I feel like I'm driving myself crazy wavering between worry and trying to be hopeful. Has anyone been through similar? Anyone had a positive outcome? The waiting game is so hard.

I've heard many cases of people having things light up on a PET scan, only to be something benign. Hoping and praying that is the case here.

Thanks so much for reading. I feel so sad to finally have to join a forum like this, but I am so happy such a wonderful support network exists.

bigheart.fg, Michele and Mally like this

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Marcie,

We are also sorry your dad and you are going through this very trying process.  I hope for the best. 

The world between worry and hope unfortunately is very familiar territory.  To help bound the worry portion, I'll suggest some answers for your questions.  All of us here have had a similar journey either as patients, family members or care givers.  You dad is on what we informally call the typing and staging trail.  This trail ends at one of two locations: no cancer or a type of cancer and a determination on where it is located.  Interestingly, there have been positive outcomes for both trail ends.  Obvious joy at a no cancer discovery, but joy in successfully concluded cancer treatment, especially for lung cancer.  I'll have more to say about joy when you learn all the test and biopsy results.

Waiting is the bane of our existence.  Not too many years ago, it often took two or more weeks for scan film to be developed before it could be queued up for the radiologist. Waiting is so diabolical I wrote a book about it -- Scanziety!  The uncertainty and special kind of anxiety that results is almost unbearable.  Yes, the waiting is very hard.  Let us hope your time is short and outcome is good.

PET scans work by sensing a cell's demand for energy.  The body is deprived of nutrition, then injected with glucose that is tagged with a radioactive substance with a very short half life.  In my case an Iodine isotope was used.  The scan can track the accumulation of glucose in certain areas.  These can be metastatic cancer, an injury, strained muscle or inflammation. In my long "exposure" to PET scans, I've had a lot of false positives, but I've had a lot of positives also.

You are on the right track with hope and prayer.  Here is my view about hope and its importance to lung cancer survival.

I sincerely wish your dad's indicators are something besides cancer.  If they are lung cancer, then you'll have a ton of questions and this is a good place to tee them up.

Stay the course.

Tom

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Thank you so much for the detailed, thoughtful response, Tom.

I hope I'll be able to go home and visit my parents soon and get a better idea of what is going on. (I'll probably plan a trip after the results of his upcoming MRI.) Unfortunately, my mother speaks English as a second language, so between the language barrier and being overcome with grief, she seems to be missing a lot of details and never knows exactly what is going on.

The spot in the liver has me worried because it just seems like Stage IV is so final in a majority cases. Hoping, hoping, hoping for a false positive. if the liver spot does end up being malignant, I hope he can at least have a decent quality of life for a few more years. He was hoping to retire early this year, so it is extra disappointing for him.

Thanks so much for linking your post about hope - it was a good read.

I'm trying my best to be as hopeful and positive as possible (especially when talking to my parents!). I'll keep the thread update on our progress.

Thanks again,

Marcie

Tom Galli, Mally and taxmeless like this

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Update: My father had his MRI and it looks like his brain is clear. I'll take any good news I can get!

Now we wait for the biopsy on the 1cm spot that lit up during the PET scan in his liver. Still hoping that it ends up benign... 

Best,

Marcie

Meloni, taxmeless, Tom Galli and 1 other like this

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Just to update on this.

My father had his liver biopsy and even though the spot had a high SUV number, it did not turn out to be cancer.

He had a lung biopsy and has NSCLC adenocarcinoma stage 2B lung cancer. He has one 5.5cm mass in his left lung and one nearby lymph node. We are now waiting to schedule surgery (they will remove both with surgery) and then find out what the chemo plan will be like.

Feeling a bit hopeful now that it is not Stage IV, but still very scared about the road ahead. Not sure yet whether I should fly home for the surgery to help out or maybe fly home once chemo starts. (Difficult when you're across the country and have two very small children!)

I have been dropping in and reading threads often and keeping you all in my thoughts.

Best,

Marcie

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Marcie, 

The lower stage is definitely good news.  I had surgery last year and followed it with four rounds of chemo, so that's fairly standard.  Depending on the type of surgery (VATS vs. traditional), your dad will need help after surgery.  After my surgery, I wasn't able to drive, lift anything over 10 lbs, or raise my arm over my head for a couple of weeks.  I was back at work after 4 weeks, just very sore.  If he is able to have the less invasive procedure, he'll still need help but likely not as much.  As for chemo, everyone tolerates it differently and he may not need as much help.  Is there a family member or friend closer to your dad that can provide him with assistance and you with peace of mind?   

bigheart.fg, Marcie and Tom Galli like this

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Thanks so much for the reply, Susan!

Yes, my mother will be caring for him (and my brother and sister are nearby.) I know he'll be in good hands, I'm mainly planning to go and lighten the load for my mom. (I am a stay at home mom, so I am much more available than my siblings.)

I am not sure yet on what the procedure will be like - hopefully I'll get more info on that soon.

I hope things have been going well for you post-chemo. I'll be thinking about you!

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Marcie,

If there can be any goodness in a lung cancer diagnosis, it is staging <IIIA.  So, surgery is the most effective treatment and your dad is on the surgery trail. 

When to travel?  I'd travel after he is discharged from the hospital and home. I'd schedule a trip to be with him the day before his first post-surgical chemo, and plan to stay at least 5 days after. He may not have his first chemo for a month to six weeks after discharge and this date may move around depending on his pace of recovery. 

Why not attend his surgery? My suggestion is based on the amount of help you can render to your dad. You can do nothing to assist with surgery but observe. If he has side effects from his first chemo, you can be a great deal of help for both your mom and dad. The only good thing about chemo side effect is they repeat in type, intensity and duration after each infusion. So your presence for the first chemo can assist your mother's understanding of what is happening and what to do about it. 

Try and have your dad choose a Medical Oncologist while waiting for surgery. This choice will be an important one and will hopefully be a very lengthy relationship. Your dad will have at least quarterly scans to check for recurrence and the medical oncologist will get the results and make interpretations. 

Stay the course. 

Tom

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Thanks for the response, Tom.

This Thursday he has an appointment to go over all of his treatment plan. They think they'll be able to remove all of the cancer and then do chemo.

They said that to be 100% sure, they want to redo his liver biopsy, since it was such a small area. I'm not sure how common this is. That has both of my parents worried, but hopefully we'll get another negative result.

I think my dad was "assigned" a medical oncologist and likes him. My dad has a great job and great insurance, but for some reason still chooses to go through the VA for all of his medical care. (Apparently this VA hospital is fairly good, but still...) He refuses to go elsewhere for medical treatment, or even consider it, because he likes his current doctors so much. 

Best,

Marcie

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HI Marcie,

Sounds like your dad has a good medical team and a good plan of action.  And as hesitant as you are about the VA (my dad was Navy so I get it) he has YOU and you are an amazing advocate for him.

One consolation I can offer is that if there is something in his liver- he may be restaged- BUT the liver is a fascinating organ in that it can regenerate.  Chemotherapy and even radiation are highly effective at removing liver tumors.

Please keep us posted.

Best Hopes,

KatieB

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Just to update the thread again (mainly so the info can help someone else if they're going through something similar)

My dad has now had two liver biopsies. Both came back negative for lung cancer. I'm not sure why, but now they want to do a third biopsy of his liver, this time surgical. My dad is getting very stressed out by the constant relief/anxiety over this one particular spot. We're not sure why both biopsies would be negative, but now a surgical biopsy is needed.

We were waiting for the doctor to call today to go ahead and schedule the surgery for his lung/lymph node removal, so this biopsy news came as a shock. I guess now we have another wait to get that scheduled... then another wait on the results... and then another wait to finally schedule his surgery. Frustrating.

Best,

Marcie

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Marcie,

Hang in there. Sounds like his doctor is being very cautious and that is a good approach. It is important to clear any potential metastatic sites before surgery. 

Surgery has very high NED (no evidence of disease) outcomes and it is pointless to invest in this course of action if other areas of cancer are present. 

Stay the course. 

Tom

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Thanks for the response, Tom. Some more waiting, but trying to remain hopeful.

He met with a surgeon today and they will remove that 1cm mass on his liver on June 16th. Hopefully June 9th, if they can get him in early (which they are trying hard to do.) Although both biopsies came back negative, the surgeon says it's important to be sure and stressed that the liver is a hard spot to take a sample from. We'll see how it goes.

Hoping it ends up negative and that we can move on to the lung/lymph node surgery and deal with a less intimidating Stage 2 diagnosis.

It's also shocking to see I first posted April 6th. We've been at this almost two months now and are still just diagnosing. Part of me feels like "Even if we did catch it before stage 4, surely it has progressed by now!" Not like the cancer is on pause during all these tests. It's amazing how long it takes just to get things scheduled and going. :(

Best,

Marcie

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My dad had his surgical biopsy on his liver today after two negative needle biopsies. The surgeon removed 3 masses from his liver, and he felt they looked cancerous. He did not think they looked like liver cancer, so very likely the spread of lung cancer. So I guess we'll hear back soon but we're bracing for a Stave IV diagnosis.

I'm trying so hard to stay optimistic and hoping that he will be able to stick around with us for a while longer. We sure do love him.

Best,

Marcie

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Marcie,

I wish I could make time fly!

Even stage IV can be arrested. We are all bracing with you. 

Stay the course. 

Tom

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Hi, Marcie,

You and your dad are in our thoughts this week. Please post an update when you can. No matter what his official diagnosis is, we are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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