Jump to content
LexieCat

Not great news on PET CT

Recommended Posts

My oncologist called this morning--it's worse than I thought it would be. Not only did the nodule light up, but so did some lymph nodes in the center of my chest. They also saw uptake in my tailbone (the bone itself). 

He will take my case and test results to the tumor board on Thursday and he'll call around noon that day to discuss what's next--he's thinking a bronchoscopy to examine the lymph nodes. He did mention there would probably be molecular testing (not done previously because of the early staging of the first tumor). He's thinking surgery probably won't be on the table (so to speak), but maybe radiation and/or some kind of drug therapy. 

He said he suspects this may have been going on for a while, with slowly enlarging lymph nodes.  He said the good news is that whatever's going on seems to be going on pretty slowly. The thing about the bone worries me, but I just found a couple of articles that there are other things that can cause bone to have a higher FDG uptake.

I forgot to ask him for a copy of the report, so I called the radiology department to ask for one. It should be posted shortly on my patient portal, but I'm not sure how long it would take and I'd like to know exactly what the findings were.

I feel a bit like my head is spinning. I know a lot of you have successfully navigated this uncertainty (and I did, too, the first go-round), but the first time I went into surgery with a good PET scan, which made me feel reassured going into it. NOT what I wanted to hear, but I did thank the doc for calling me at his first opportunity.

Share this post


Link to post
Share on other sites

I'm sorry to hear that the news wasn't great. Cancer is so nerve-wracking with so many ups and downs. The good news is that it's slow growing and that there's a treatment plan in place. 

Cancer is such an emotional rollercoaster. The good news is that there's been so many advances in treating lung cancer and molecular profiling helps in aiding treatment. 

A lot of people on here seem to have had recurrences but they're still standing and doing well. It must feel like a huge blow but cancer doesn't have to win. You've got us and so many people on here are proof of how far treatment has come. 

My mum thinks about cancer like a chronic condition like diabetes. It helps her to cope and live her life normally. There's a lot of hope out there. Some people beat cancer more than once and are cured, whilst some live with it for many years. My mum has met people with stage 4 cancer who are living with it and it's been kept under control for many years. 

Stay strong. It will be ok xx

Share this post


Link to post
Share on other sites

OK, the report is now posted. Honestly, it's the stuff about the bone that worries me the most. I'm wondering whether there's any possibility that my osteoporosis treatment could cause an increased FDG uptake. I just had a DEXA scan (bone density) and my lumbar bone was the one area that had actually improved (the other areas were stable). 

Here are the relevant findings:

"There is marked hypermetabolic activity within the superior segment of the right lower lobe with corresponding perihilar soft tissue density (SUV max 35.5), consistent with malignancy. A posterior right lower lobe subcentimeter pulmonary nodule also demonstrates mild hypermetabolic activity.

Additional marked hypermetabolic activity is noted within multiple mediastinal lymph nodes, such as a right paratracheal 1.3 cm node (SUV max 27.8). A right supraclavicular subcentimeter hypermetabolic node is also present, (SUV max 6.6).

Hypermetabolic focus is noted within the right sacrum adjacent to the right S1 neural foramina without a CT correlate (SUV max 11.5).

Unremarkable 18-FDG distribution is identified in the head and neck musculature, heart, liver, kidneys, urinary bladder and the gastrointestinal tract." 

If Tom or anyone has any insight or thoughts, would appreciate it.

Share this post


Link to post
Share on other sites

Teri,

Oh man! Lousy PET results and first thing on a Monday morning.

I would think a biopsy in essential given the time differential between your surgery, but the tailbone (coccyx?) met, that is weird. 

Given the dispersion of your mets, perhaps a radiation oncologist could hammer the coccyx met and zap the lymph node in addition to chemo. Radiation oncologists are getting very aggressive these days "spot welding" tumors. The worst possible outcome is a reduced tumor burden and fewer mets to cast off cells. So I'd ensure a consultation by a radiation oncologist before treatment your treatment plan is established.

This is really disappointing! Lung cancer just plain sucks! Put on your battle rattle and proceed rapidly downrange to engage and destroy the beast!

Stay the course. 

Tom

Share this post


Link to post
Share on other sites

Wow, Teri, I'm sorry to hear about your PET results.  I can see why your head is spinning. Your question is a good one about whether your osteoporosis treatment could result in increased PET uptake.  It seems like building bone might be a metabolic activity that would affect uptake. I would certainly want some more info about this possibility before deciding on any treatment- maybe from an endocrinologist or an orthopedist? 

Hang in there and know we are all here to support you.

Lee 

Share this post


Link to post
Share on other sites

I can't stand all of these reports; I wish that they were written in a way that was more understandable and digestible for patient. It's the same with my mum's reports; there's so much medical jargon that it's hard to understand everything. I try not to read too much into these reports and focus on what the doctors say. 

Gosh this sounds so stressful and horrible. I hope that everything will be ok. When was your last scan before this one?

Share this post


Link to post
Share on other sites

Gosh Teri,  I’m really sorry you had to wait the whole weekend and be hit with this first thing today.  
The treatment plan will really hinge on the status of the biomarker study.  Given the previous clean scans followed by the PET results it would suggest there is a targetable therapy available.  I had multiple scattered spinal Mets (to everyone’s surprise) with much lower SUV values that yours.  I was too naive to understand what it meant at the time.  Within four months the targeted therapy knocked out the cancer and now I’m left with calcification.  
 

When there is a mutation the oncologist will use the most effective treatment first, radiation is often held for down the road.  
 

Good news today the biomarker results come back much faster than when I had mine two years ago.  You should have some answers “quickly” in the next 7-10 days.   

Share this post


Link to post
Share on other sites

Thanks, Michelle,

At Tom's suggestion, I called my surgeon who did my lobectomy three years ago. I haven't seen him in over two years, but he'd given me his personal cell phone and told me to call him any time. He answered immediately, remembered who I was, and pulled up my records to look at while we talked. He agreed that it looks pretty serious and said he was going to make some phone calls to see what could be done about expediting the biopsy. (Thank you, Tom, for the suggestion!!) He thanked me for trusting him enough to call him. I wish he could still be in charge of my treatment--the BEST doctor I've ever run across in terms of the way he talks to me. But he tells me that my new oncologist is super smart on the targeted therapy stuff. I told him I was also interested in radiation, if that's an option--whatever will knock these things out. He noted that he also wants to be sure we're not looking at SCLC this time, given the high SUV levels and kinda going from zero to 100 mph. 

Honestly, I'm SO glad I called him. He told me he'd be advocating for me at the tumor board.

Share this post


Link to post
Share on other sites

If I had to wager a guess from mutant land, anytime a LC goes from 0 to 100 it’s usually EGFR, MET or KRAS mutations.  Maybe they can do a blood biopsy to speed up the process.   Worth asking since the sensitivity is pretty accurate.   

Share this post


Link to post
Share on other sites

Lexie,

So sorry to read about your results, but you are doing all the right things and anything your surgeon can do to help expedite the process is a good thing.  It's also good news that he expressed faith in your new oncologist.  I'll be watching your updates and prayers are always going up.

Lou

Share this post


Link to post
Share on other sites

Lexie - I am so sorry to see this...so glad you reached out to your surgeon and someone you trust so much. I hate this disease. Please keep us posted and sending prayers your way. XX

Share this post


Link to post
Share on other sites

Terri... Just read this. I am heartbroken for you but in awe of you at the same time. Look at you go! You are incredibly pro-active, intelligent and a fighter. That is apparent.  You are getting some amazing information and advice here. What a blessing the people here are.  I realize this happened earlier in the week, so I need to catch up here.  Thinking of you and wanting the best for you.

Share this post


Link to post
Share on other sites

I just saw your post Lexie. I can relate with the apprehension and anxiety that you are feeling.The slow rate of growrgh is encouraging, and also,  like you said there are other possibilities in regards to the bone anomally. Keep the faith. 

Share this post


Link to post
Share on other sites

Lexie, Just saw your post, haven't logged in for awhile, and wanted to let you know I am sending positive vibes your way and also empathize with your situation.  You are in our thoughts and prayers,.  Take care now, Susan.

Share this post


Link to post
Share on other sites

Hi Lexi,

I just ready your post.  I totally understand the anxiety.  Hang in there.  So glad that you've found someone in the medical community that is such a good advocate.  Wishing you all the best and sending positive vibes.

Deb

Share this post


Link to post
Share on other sites

Hi Teri,

If there's one thing to be sure of, there is nothing about lung cancer to be sure of. It seems like there are so many exceptions to what typically happens.

Sounds like you have a great oncologist given the approval of your surgeon! As the options for treatment are presented, I know you will make the best decision for you and your particular cancer. It's so scary and the fact that 6 months ago everything looked okay is even more frightening. 

I'm thinking of you and hoping there's a treatment plan put together soon!

 

Best,

Ro

Share this post


Link to post
Share on other sites

Lexi - so sorry you received crummy test results. Recurrences suck - that's all there is to it. I am hopeful that you'll be eligible for targeted therapies. Keeping you in my thoughts - 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...