Your thoughts...

[Kim Y]

Hi everyone, I just joined and could use your input based on your experience. 

In the last week - based on a CT scan with contrast and an MRI with contrast - there shows a suspicious 2.5cm nodule in the left lobe. My family doctor said the contrast made it like the nodule was “active.” 

(There is second one there too - 1.5 cm but they are focusing on the larger one. I am moving ahead with the biopsy.)

Is there any chance these could still be benign?

Also, 17 months ago - I had no nodules. Might any of you have a sense if 17 months is fast or slow for the growth of nodules - benign or cancerous?

Thank you for your time and input.

 

[LexieCat]

Hi, Kim,

I'd certainly want a pulmonologist's input.  My nodules first showed up on a screening for lung cancer.  When there was no change after three months I was told to come back for screening in a year.  At that point, my pulmonologist determined that based on growth of one nodule, and its suspicious appearance ("spIculated") that it was PROBABLY cancer and he referred me for lung surgery to remove that lobe.  It did turn out to be cancer--adenocarcinoma, Stage 1b.

Nodules can be lots of things, most of them non-cancerous.  I'm not sure what significance the size of yours has, but that's why you want a pulmonologist involved, not just a family doctor.  I do have nodules that have "appeared" and "disappeared" on scans, and I'm told they could be inflammation, etc.  Nobody seems worried about them.  They are quite small.  

What caused you to have the CT in the first place?  Just wondering--have you had symptoms of lung problems?

 

[Kim Y]

Thank you for your response LexieCat! I have not hand symptoms of lung problems but am a smoker - or was since I got this news 10 days ago - I stopped cold turkey.

I went to the urgent clinic and then the ER because I was having trouble breathing - that’s when they did the CT scan - but it wasn’t due to the nodules they incidentally found - my body was under stress because I have been having upper body issues. I have been having muscoskeletal problems the last 18 months - my SI joints and now upper body as of three weeks ago. So unless this has been a symptom all along for lung cancerand no one has caught it - I’ve had no symptoms.

I am getting ahead of myself but I am so afraid about the idea that I might need to have surgery.

And yes about the pulmonologist- the referrals from my family doctor so far have been for the biopsy doctor and oncologists. 

Kim

[LexieCat]

Good for you for quitting smoking--don't pick it back up, whatever the outcome.

And, even if this turns out to be benign, depending on your age and smoking history, you might be eligible for lung cancer screening scans.  That's how my cancer was found.  Talk to your doctor about it if your biopsy results are benign.

And don't get ahead of yourself worrying about surgery.  Often (as in my case) they are able to do laparoscopic surgery, which is much less invasive/drastic than the traditional surgery.  Try to take it one step at a time.  There is lots of collective experience here to support you through this.

[Steff]

Kim,

In my mom's experience, she has had nodules come and go, some have been cancerous, some not (we assume as they disappeared).  In her first bout of lung cancer, they watched her nodules for about 1 year until they saw growth of one of them. That's when they did the biopsy to determine that she had non-small cell lung cancer (slower growing). Up until that point, they were too small to biopsy.  We assumed the 2nd nodule (still too small to biopsy) was cancerous and it was removed as well when she had her lobectomy.  

In the excruciating waiting period between scans, actual diagnosis, and treatment, I did a lot of research on nodules.  They come in lots of different forms and although the ones that appear to be spiculated (have points like a star) tend to be more cancerous than those that appear to be smooth, it's not an exact science.  Also, those nodules that show up as "active" in a scan don't always end up being cancer (they can be "active" for other reasons).  I tried to find some hope that my mom did not have cancer while looking through all of this information, but it only made me question and worry worse.  You are doing the right thing by having the nodule(s) biopsied as that is the only for sure way to know whether or not they are cancer and if so, what type it is. 

I am sorry you are having to play the waiting game.  As you may have already read in these forums, the waiting game is often the worse part.  Do you have a date for your biopsy yet?

And super duper congrats on quitting smoking - never an easy thing to do!! 

Take care,

Steff

[Kim Y]

Thank you so much for your feedback Steff & LexieCat - it means a lot to me! I just don't see how in good conscience continuing smoking was an option.

Do know that when they did the chest MRI last week - they also saw a lesion at the bottom of the MRI near the liver - so I'm going back today for an abdomen MRI. Sigh.

Do you two think it's dumb of me to have a consult with the interventional radiologist or should I just schedule the biopsy with him to not waste time? I just thought it was weird to set up a biopsy never having met the doctor, so I have a consult with him this Thursday. There will definitely be a biopsy of the larger lung nodule and I'll have to see what they want to do if they see anything in my liver.

Admin question for you Steff - when you two wrote back - I didn't receive email alerts indicating such. I looked in settings but didn't see anything for this. Is there a way for me to set up email notifications when folks write back to my posts?

Kim

[Steff]

Kim,

I don't know if your screen is the same as mine, but do you have a box on the top, right hand side of the screen (above the Orange "Reply to this topic" button) that says "Follow"?

If so, click it. You should be able to then choose how you want to be contacted when there is a reply.

As far as scheduling an appointment to meet the doc before a biopsy, I think that is a personal choice.  My mom's pulmonologist has done all of her biopsies so I've never thought of what it might be like to have a stranger doing a procedure.  And now that I think about it, whenever my mom would have a new doc for a surgery, she would meet with them first.  So, your question makes perfect sense.  I personally would like to meet the doc first, but that's just my personal preference.  

I have no experience or knowledge about liver lesions, so I cannot speak to it. 

[Kim Y]

Yes I found the Follow box - perfect - thank you for pointing that out Steff! I appreciate all the input - we will see how things unfold. 

Kim

[Laurel]

I didn't meet my doctor until I was in the room to do the biopsy. I had issues toward the end of the biopsy, but he never came in to recovery room. He called nurse for checkups. He did a good biopsy but I rather not meet with him. I met the surgeon who did the VATS (video assisted thorasic surgery). He is awesome.  It was strange not meeting the doctor who did the biopsy until he was in the surgery room.

[LexieCat]

I never had a biopsy--when I met with my surgeon he said there would be no point in doing one--his feeling (like my pulmonologist's) was that it was suspicious enough that they wanted to remove it regardless of what a biopsy might show.  In fact, however, they did take a sample of tissue during the surgery and looked at it in the lab.  Apparently that was inconclusive but they went ahead and removed the lobe, and there WAS cancer in the nodule.  So biopsies aren't foolproof, either, apparently.

In fact, one of the controversies about lung cancer screening in general is the risk of unnecessary biopsies.  I think, if it were me (knowing what I now know), I'd want a pulmonologist or an oncologist (medical or surgical) to order the biopsy.  Sometimes the advice is to see if there are any changes within a few months.  I don't know whether that would be appropriate given the size of your nodule, but I guess I'd want someone with some lung cancer expertise to suggest the next step.  Do you know whether the doctor performing the biopsy has that kind of expertise?  I think that's a question I'd want answered.  My pulmonologist and surgeon were both attached to the MD Anderson Cancer Center in Camden, where I was having my screening, and it was reassuring to me that everyone I was seeing were experts in detecting and treating lung cancer.

I know that the liver IS a location where lung cancer wants to spread.  Another test that is often ordered is a PET-CT scan, which can detect metabolic activity that might be indicative of metastasis.

[Kim Y]

Thank you for your feedback Laurel! I appreciate your sharing your experience and taking the time.

To LexieCat,  My family doctor told me I will get my results 3 to 5 days after the biopsy. So far it is the radiologist who read my Chest MRI that said I need a biopsy - I haven't gotten that far yet to see a pulmonologist or  oncologist. I got the MRI last Thursday. My family doctor told me to see the interventional radiologist for the biopsy, and then follow up with an oncologist if need be. I can speak about this with the interventional radiologist certainly though. I actually live in the suburbs of Philly LexieCat - I'm working right now with doctors and the like for this in the Main Line Health system. 

Kim

[LexieCat]

Well, given that you're in the neighborhood, the MD Anderson Center (at Cooper Hospital) is TERRIFIC.  MD Anderson in Houston is consistently rated the top cancer center in the US and supposedly the local affiliated centers have access to their expertise and clinical trials, etc.  I felt like they treated me like GOLD.

We don't officially do recommendations here--just sharing my own experience.  I loved my doctors--felt like I was constantly in good hands.  They take a multidisciplinary approach and have all kinds of specialists they can loop in to coordinate everything.  I know there are other terrific places in Philadelphia, too.

[Kim Y]

Thanks for such a glowing review LexieCat - I appreciate it! I will definitely keep Cooper in mind.

HI Steff - I don't know if you are still reading this thread, but I'm having a lot of problems signing in - it's not recognizing my password every time I enter it - not on my phone or computer. I have had to reset it four to five times since I signed up yesterday and the last three times I've reset it with the same exact password. Maybe it's just me. Has anyone else had problems like this?

Kim

[LexieCat]

I haven't had any problems--have you checked "remember me" when you sign in?  That pretty much keeps me signed in, indefinitely.  

In my experience on other sites, sometimes it helps to clear the browser cache and any cookies.

[Kim Y]

Yes good point - thanks LexieCat! For now, I think I'll stay signed in.

[Steff]

Kim,

Are you using the Tapatalk app or the Lungevity app? I have trouble with both. I don't use Tapatalk anymore.  When I'm on my phone and using the Lungevity app, it doesn't allow me to sign into the main page, but when I click on "No Thanks, I'm Just Browsing" at the bottom of the screen, it will take me to the screen to choose to enter the forums.  I am able to stay logged in there and have no trouble navigating to the forums under my login.

Hope this helps.  I agree with LexieCat, I just stay logged in and I've had no troubles.

[Kim Y]

I'm just on a Chrome browser on my laptop and Safari on my I-phone. It just happened to me again. Thanks everyone though -  much appreciated!

Kim

[Kim Y]

I just read a copy of my Chest MRI Report and it sounds bad. I just don't see how at this point this could turn out to be benign.

It says that the 2.5cm left lower lobe should be considered malignant until biopsy proves otherwise. Peripheral left hilar lymph node of 1.3cm is suspicious for metastatic lesion. Additional smaller indeterminate lymph nodes in left hilium also present.

I was hoping since I'm asymptomatic that this would be in the early stages - but it doesn't sound like that either to me - if it has spread to the lymph nodes. I googled left hilar lymph node, left hilium, etc. but it is unclear to me at this point what this all means to me.

From the little I know - my general understanding of cancer is that if it hits lymph nodes - this could now spread to the rest of my body.

Any feedback is welcome. If you think it useful too - I can start a different thread.

Kim

[Tom Galli]

Kim,

Welcome here.  I've been following your thread and offer some comments on your MRI test report.  Here is some information about Lung Cancer Staging that may be helpful.  Merging this information with your test report, I agree that your condition is not benign, but I don't agree that you present with a late stage diagnosis.  Looking at the linked information, your cancer might stage as IIB and if so, that is often treated very successfully without recurrence.  

Lung cancer anywhere could spread to the rest of the body.  Once a tumor gets to be a certain size, it starts shedding cells to the blood stream and that becomes the agent for spreading.  The same applies to the lymphatic system.

If your doctors suspect a stage IIB condition, you'll likely have a biopsy.  The biopsy determines the type of lung cancer and knowing the type allows development of an integrated treatment plan.  Hopefully for you, it is surgical resection of the tumor and lymph nodes and likely adjuvant (post surgical) chemotherapy (or immunotherapy or targeted therapy) and perhaps radiation. 

You'll likely have more questions and this is the place.

Stay the course.

Tom

 

[Kim Y]

Sorry to ask this first - since it is so mundane - but I'm still having problems logging in - I keep having to reset the password every time I try to log in. 

Is there a setting on here that anyone might now of that allows me to stay logged in ? Because it times out as well even with the window open.

Now back to your advice Tom - thank you for all of it -- I will read up more on the staging - I really appreciate it. And yes, I'm seeing the interventional radiologist this Thursday and will then be scheduling the biopsy. It's in the works.

Kim

[LaurenH]

Hi, Kim,

I will send you a private message and see if we can figure out why you're having trouble logging in/staying logged in.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

[Kim Y]

I'd appreciate that so much Lauren because I can't sign in without having to set a new password every time.

I tried the Lungevity app too and it says on there that the PW I'm entering doesn't match the one in the database.

And again - if I leave my browser open - it eventually times out.

Kim

 

[Centerofme]

Hey Kim, just writing to say I hope youre Ok!  I had 2 X-rays show I have a nodule recently and so I’m moving on to the CT scan.  The waiting periods between finding something and the actual truth are not fun.   Not for me anyway   I just ... want answers.  So here’s a hug *hug* 

[Laurel]

I have to reset my password each time also. I sent in an email for help. No response yet. 

[Kim Y]

HI everyone, I hope you are all are well. I still have to reset my password every time to sign in - Lauren has tried troubling shooting it for me, but we are still working on it. Hopefully  we will get it resolved because clearly redoing my password every time to sign in is becoming an inconvenience. But on my side - I had my biopsy today - I'm happy to report it went smoothly. I should have the results in 72 hours.

Kim