My mom has stage 3a lung cancer and has undergone chemo and radiation. Her first check up last week stated that the tumor in her lung has shrunk, the lymph nodes have stayed the same but they have found something suspiscious on her liver. A scan was done but did not give enough info, so she is going for a biopsy next week. she has a pet scan done weeks before her chemo started and showed that all other organs were clear at that point. Wondering if any one has some info to share in this regard. Unforunatly the doc that we have does not have very good bed side manner (i am a nurse and this is terrible) He said there is a possiblity that the pet scan could give a false negative. He also said the scan done on the liver said that the results are not consistant with what a liver cyst would show on results.
I know that time will tell....but waiting is the hardest part!!!!!!!!!!
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test results-questions
- By jen80
- Posted June 24, 2009 at 7:45 pm · 9 replies
- In Non-small cell lung cancer - Stage III
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Arthritis Pneumonia Anxiety Taxotere Carboplatin Pneumothorax Lung cancer
9 replies
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- By speedpuppy
- Posted June 24, 2009 at 8:38 pm
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Hi!
I've been reading the posts on this site for a couple months now since my Mom was diagnosed with NSCLC, but I never joined or posted anything. That is, until I read your post. It was like deja vu. My Mom was diagnosed Stage IIIA in late March. Her PET scan showed a 4 1/2 x 5 cm tumor in the RUL & 1 borderline enlarged pre-carinal lymph node. No known mets. The plan was 2 cycles of Cisplatin/Etoposide with daily concurrent radiation, re-stage, & probably surgery. She tolerated treatment very well & finished at the end of May. She had a CT scan 1 June. The tumor & lymph node shrunk, but evidently only due to the radiation. There are now 2 small nodules in the RLL, a slightly enlarged high para-tracheal lymph node, & a spot on the liver. The docs were very surprised & questioned the spot on the liver as possibly a cyst. A biopsy was suggested, but had the potential for missing the target & yielding inconclusive results. Instead, we went with a PET scan. Unfortunately, the spot on the liver was hot & we also found a spot on the shoulder blade. The biopsy became unnecessary & she is now Stage IV. We've moved onto 2nd line treatment of Avastin/Alimta/Zometa.
My understanding was that it was unlikely anything in the liver other than a met would light up on the PET scan, so it would give us more than enough info, as well as tell us if anything else had popped up. If we had only done the liver biopsy we wouldn't know about the bone met at this point, until it became symptomatic.
You mentioned a scan done on your Mom's liver - was it a PET or CT? If the spot is fairly small, it may be hard for them to biopsy it with certainty. If a PET scan has not been done following her treatment then that might be something to consider as it is non-invasive & can give useful info for re-staging at this point. A PET scan so close to the end of treatment may not give much useful info about the lung itself due to inflammation/scarring/etc., but it should give good info about any other areas.
My main concern for my Mom was to make sure we had enough info before we potentially abandoned a treatment plan that might be working. Unfortunately, in our case, it was clear that the chemo had no effect & there had been progression. I assume what your Mom's doc meant when he said PET scans can give false negatives was that there were probably microscopic cancer cells present in the liver at the time of the 1st PET scan that were not detectable at that time.
I wish I had a more positive story to share. I do know how demoralizing this situation can be & the waiting to find out what exactly is going on is so stressful. I'm sorry you & your Mom have to experience it. I know there are many possibilities for something suspicious in the liver, depending on how it presents - I hope it turns out to be 1 of those innocuous things in your case. I hope you will get some answers quickly.
Regards,
Gina
- By HighlandGuy
- Posted June 24, 2009 at 8:44 pm
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I too had spots show up on my liver. They are still there nine years later. False negatives are possible (as in indolent cancers) on PET scans as are false positives (benign growing tumors). I would not argue against liver biopsy (you want to know if it is a problem).
I also had a spot show up on my adrenals that a FNA showed to be benign. One never knows, with this crazy beast.
A piece of advice, Don't ever reluctant for a moment to stand up to this doctor. Remember, you are not dealing with a common. This is lung cancer, perhaps the most complex of all cancers, unforegiving, often lethal. You cannot affort to have mistakes made. You rarely have a second chance.
Wishing the best for your mother, I am
HighlandGuy
- By jen80
- Posted June 24, 2009 at 10:35 pm
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HI Gina, thanks so much for your reply...yuppers our stories certainly do sound like the same don't they!
How old is your mom ?
My mom was dx in jan of this year with a tumor in her right upper lobe (6 by 7), we thought surgery was going to be possible but after a bronchoscopy, needle biopsy, and a mediastinoscopy (talk about waiting!!) they had found that there was lymph node involvement (3 to be exact, all on the same side as the tumor, one in her clavicle and the other two beside her esphogus)
She then underwent the same treatment as your mom, the treatment lastest 6 weeks in total with chemo and radiation. The doc ad nurses could not believe how well she did as she received the highest dose of both chemo and radiation. Very minimal side effects.
So yes she got her first scan done after treatment, as i said before with some shrinkage in the tumor, lymph nodes the same and a spot on the liver. She had a pet scan pre chemo which is how we found out about the lymph nodes but at that point all other areas where clear. The ct scan of her liver came up as inconclusive which is now the reason for the biopsy.
Speedpuppy, i am not sure where you live...but i am in ontario, canada. They have offered my mom a trial drug (unsure of what the name is) to start. it's basically an immunization that stops the cancer cells from regrowing. She was to start this tomarrow but since something funky is showing in the liver they need to get to the bottom of this before they can move on to the study. They have even extended the start date for my mom hoping that she will be able to start. Now the Doc has said that if she was not interested in this study and was not going to do it then they would not even be doing biopsy on the liver. They would just wait a few more months to see if there was any growth.
So the biopsy get done this upcoming monday. My mom is going to ask for another pet scan. The first one was covered but the second one will not be covered and this scan costs over 2 grand i think.
Thanks so much for sharing your story with me and my mom. I really do believe that a positive outlook will make or break you. Cancer can be beaten....i do believe that...sometimes we just have down days. This website has been wonderful! I would like to hear more about your mom and her fight speedpuppy, if you don't mind. Prayers and well wishes to everyone!
- By Mydaddy
- Posted June 24, 2009 at 11:49 pm
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HI Gina,
Wow how did it go from IIIa to IV so quickly is that normal, my dad has NSCLC Stage IIIb. I tell you when we found out my dad had cancer I just sobbed for days. He goes for his first PET on July 7th since having his chemo and radiation treatments. I pray that his had not spread anywhere. His first PET scan before any treatment did not show any met so I really hope it stays that way. I will keep you and your mom in my prayers..
Try and stay strong
Marie
- By MichaelD
- Posted June 25, 2009 at 9:05 am
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Three years after surgery/chemo/radiation for head/neck cancer, I thought I was in the clear. PET scanned showed hot spots in the lung and a node, however. Biopsy showed squamous and I was staged as a primary IIIa and not metastasized. I started Carboplatin & Taxotere yesterday, but no radiation. I'm concerned that MD Anderson is not attacking this as aggressively as other IIa's I read about here. Any thoughts?
- By speedpuppy
- Posted June 25, 2009 at 2:12 pm
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Hi Jen,
Our Mom's stories are eerily similar, that's for sure. My Mom is 68. We 1st had an indication something was wrong in FEB 09 when a follow-up chest x-ray for suspected pneumonia showed an unchanging mass. Her only symptom had been a persistent unproductive cough. A CT scan was done shortly after, followed by the PET scan & bronchoscopy in MAR 09 which confirmed NSCLC - Adenocarcinoma. She was clinically staged IIIA based on the PET scan. Treatment began in APR 09 with the intent of surgery after 2 rounds of chemo & 28 doses of radiation - 6 weeks total. There was only 1 borderline enlarged & mildly active lymph node on the PET scan, so the expectation was it could be dealt with via the chemo & radiation, leaving a good possibility for surgery. Like your Mom, mine got the max dosages & really did pretty well - the docs repeatedly commented on this during her appointments. A minor issue in the middle of treatment necessitated an x-ray which revealed that the tumor had started to shrink, so we were hopeful & positive. After the neo-adjuvant treatment was completed, she had the CT scan & everything got turned upside down.
While there's nothing better than pathological data, our docs felt a PET scan would give us the info we needed about the liver without being invasive. The location of the spot in my Mom's liver was near enough to the lung that a needle biopsy would have had to pass through a small portion of the lung, raising the slight possibility of a pneumothorax. A biopsy could also come back negative or inconclusive, & then the argument could be made that the tumor was missed, especially if the spot is relatively small. In other words, unless it came back positive you really wouldn't have any more info than you have now. However, I will not go so far as to say your Mom shouldn't have it done - just giving you the line of thought we had. In our case, the PET scan was sufficient as the spot in the liver lit up in a way strongly suggestive of cancer, as well as the fact that we also discovered the bone met. Normally, a 2nd PET scan this soon would not be covered by my Mom's insurance, either, but the docs can justify the need for this 1 so it should be covered. I think, depending on the outcome of your Mom's biopsy, you may be able to make a good argument for the need for another PET scan & perhaps it would be covered. I'm not familiar with your health coverage in Canada, other than to know that it's publicly funded.
We are in the US - Michigan. Without knowing the name of the drug, I'm not sure of the trial you mentioned. Clinical trials are an option for us, too, but 1 we are keeping in the back pocket for now.
In our case, I know progression during this regimen is not a good sign, but we are still hopeful there are options left in the arsenal that might work. As evidenced by all the Stage IV survivors on this site, there is plenty to be hopeful for. My Mom started her Avastin/Alimta/Zometa yesterday & will have 1 more round in 3 weeks before another CT scan to see if it has had an effect.
I'm glad to share our story with you - it's always helpful to share experiences, even knowing that no 2 cases will be exactly alike. How old is your Mom & what sub-type was she diagnosed with? I can certainly understand the angst you & your Mom must be experiencing right now & I hope the biopsy next Monday will give you some good info. If this doctor does not seem to want to get to the bottom of this & develop a good Plan B, then I would seriously consider finding a 2nd opinion. Until you find out for sure what is going on in the liver, it will be hard to decide what to do next. Waiting definitely sucks - I am a cancer survivor myself & both mine & my Mom's cancer have taught me patience to a degree I never wanted to learn!
I will keep you & your Mom in my thoughts as you await the biopsy & hope it will turn out to be nothing of concern. Best wishes & please keep me posted!
Regards,
Gina
- By speedpuppy
- Posted June 25, 2009 at 2:18 pm
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Hello Marie,
How did it go from Stage IIIA to IV so quickly? That is the $1,000,000.00 question, indeed. We were dumb-founded as we thought we had caught a window-of-opportunity for possible cure when she was diagnosed. In all likelihood, the cancer was metastatic at the time of the PET scan, but the microscopic cells were too small to be detected. They might have been dealt with if the chemo had been effective, but unfortunately it looks like her particular tumor biology is resistant to platinum-based therapy.
When did your Dad finish his chemo/radiation? Has he had a CT scan since then, or is the PET scan you mentioned going to be the 1st scan? I know the anxiety you're feeling - I hope it all turns out good for you & your Dad! I will keep you both in my thoughts & wish you the best!
Regards,
Gina
- By bxr0903
- Posted June 25, 2009 at 2:30 pm
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My Mom (IIIa) just went through a saga where they thought they saw a spot on her spine during a PET. She had an MRI.....it was inconclusive. They did a CT scan and were finally able to declare it "nothing" (or inflammation or arthritis.
- By nmonreal
- Posted June 26, 2009 at 12:51 am
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HI! You mentioned that mom had a 'scan' but didn't mention which kind. I usually have a PET/CT scan. My first one showed something on the liver. The next time it was gone. It showed up one other time, but not consistently.
I know they tell you not to eat 6 hours before the scan. A doctor friend of mine recomended abstaining from caffeine and sugar the day before. Sometimes residues can remain in the body and get picked up by the radioactive glucose. I wonder if this is what is happening with your mom?
A lot of people feel that if their oncologist is not giving them enough information (or in your case has really bad bedside manner) it's time for a 2nd opinion. I got a second opinion and stuck with the second oncologist. I just couldn't see putting my life into the hands of the first guy I saw. You (and your mom) need to feel comfortable with the guys that's in charge of her treatments.
Good Luck!
Nannette
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