New Here and need to learn fast

Posted by sayitisntso @sayitisntso, Sep 26, 2023

Hi, I am in shock and don’t have much to share yet other than how I got here and really hoping I can get some guidance on what I need to ask and research quickly. I will likely share some stuff that isn’t even relevant but maybe someone will see a connection that can help me piece together next steps and/or questions so please bear with me.

Background:
For YEARS as far back as I can remember I’ve had GERD. Multiple drs have done various tests and have told me my cough when I sleep and wake in the morning is from Gerd/acid reflux. I mention this only because that’s been a concern of mine for many years. I cough up phlegm when I lay down and get up on the morning… totally fine the rest of the day. Never heart burn. There’s a name for it but basically silent Reflux. The coughing up phlegm has definitely increased in the past few years but again, 20 minutes after getting up in the am I am fine for rest of day.

I am a former many years smoker of 1/2-1 pack a day so I’ve always had an expressed interest whenever I had any testing done of ‘how are my lungs?!’

Not sure if this will ultimately prove to be relevant or not but On August 25th I was getting changed and noticed a pea sized bump on my rib just under my breast. I went to my primary dr. Who said this is a nothing burger.. soft, movable under your skin. No need to do anything BUT in the past 3 weeks it’s tripled in size and is now tender. I made an appt with a dermatologist. Just after I went to my primary I started getting this gnawing burning sensation in my upper left chest and for lack of a better way to explain it seems tender and that feels bruised or like a pulled muscle. No issue breathing but when I cough it hurts/burns so after 1.5 weeks I went to a pulmonologist. He is excellent and said I’m guessing you have a touch of bronchitis, here’s a slack and inhaler but let’s get a cat scan just to rule out pulmonary embolism. The very next day before my insurance approved the cat scan was my dermatologist appt for my bump… he really didn’t say much other than let’s make an appt, to take it out and see what it is. That appointment is not yet made. My pulmonologist said yesterday to maybe hold off on that because he doesn’t want to do anything to affect what seems like a quickly upcoming biopsy however I can’t help but want the results of what that is!

Fast forward to yesterday.. cat scan day.

Never did I expect this but here I am. I am told my middle lobe of right lung is partially collapsed. lesion on my sternum which seemed to be the biggest concerning marker both to ER Dr when he told me and separately my pulmonologist when we spoke later. There is something on the report about a 1.8 cm nodule near skin and I can’t help but wonder if that’s my bump mentioned above or inside the lung. I don’t know how to read this darn report. In short my pulmonologist wants an immediate PET Scan, wants me to see a thoracic surgeon for biopsy and was talking about likely chemo and radiation. It’s all a blur. I was scribbling notes but I they are jubberish to me today. I was in shock.
Obviously at this point the serious concern from my dr alone has scared the heck out of me.

Please if you folks can guide me with most important questions to ask.. what tests (if any) I should request, what plans I should make, what to expect .. really anything I would appreciate it.

I travel pretty frequently for work.. I obviously can still do that but have no idea what tomorrow, next week, next month or next year looks like for me now. That alone is overwhelming.

My kids are grown and live out of state. I live alone so really just trying to absorb this and don’t want to freak them out. I don’t want to over or under estimate the severity of this. I think for the moment I am doing both depending on the hour. I don’t know what I don’t know but my dr really sounded like we need to move fast.

PetScan is scheduled for next week.

Any and all advice is needed. If you have questions about the report findings I’d be more than happy to share more specifics because I don’t know what’s big and bad vs what really is not necessarily bad. Like I said lesion on sternum is what I repeatedly seemed to pick up from both docs as well as the partially collapsed mid lobe right lung and from what I can tell from the report it’s seems suspicious that a mass or nodule caused it but doesn’t seem like they actually saw one there?

Sorry for the long post! Happy to share my report if someone here is willing to decipher

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Lisa, Volunteer Mentor | @lls8000 | Oct 9, 2023

In reply to @lmd1 "Hearing this gives me hope! May I ask what treatments you received. I, too, am Stage..." + (show)

Hi @lmd, my lung cancer is driven by a biomarker mutation, ALK. So, I was able to go straight to a targeted therapy (alectinib). I've been taking it for the past 3.5 years. I have scans every 3-4 months, and so far the meds keep doing thier job. I know, like all of us, that someday I'll be facing further treatment decisions. For now, I appreciate each day!

Lisa, Volunteer Mentor | @lls8000 | Oct 9, 2023

In reply to @sayitisntso "Thanks for your response. No, both of my daughters live out of state however are talking..." + (show)

@sayitisntso, I'm just checking in on you. Did you hear anything back from the doctor on the initial biopsy report? It's normal for the NGS testing to take longer, but sometimes it's worth the wait. How are your daughters holding up? Were you able to take your minds off the news at all?

sayitisntso | @sayitisntso | Oct 9, 2023

Thank you and I will. I’m still waiting for the biopsy results.

Having brain MRI this week and meeting with first oncologist (Columbia in NYC). He wasn’t on my list but came recommended. Awaiting calls back from 2 other Oncologists for appointments but my NGS results won’t be back until next week so it’s a lot of hurry up and waiting but don’t wait too long you need to act fast… messaging that I’m receiving.

sayitisntso | @sayitisntso | Oct 9, 2023

In reply to @lls8000 "@sayitisntso, I'm just checking in on you. Did you hear anything back from the doctor on..." + (show)

Thanks for asking. Still waiting for biopsy. My kids are here and staying for the foreseeable future for all appointments. I’m pretty sure we’re in some denial as it’s been a rollercoaster of emotions for us all. It takes time to process when I look and otherwise feel healthy. This weekend I should have spent researching (that’s my personality) but couldn’t bring myself to do anything related to this. It’s just all surreal and too scary and sad for me. I’ve made a bunch of calls today and now I wait. Weds is brain MRI, and so far Fri is first Oncology appt.

Thanks for checking in. Will post more when I know more.

sayitisntso | @sayitisntso | Oct 10, 2023

In reply to @sayitisntso "Thanks for asking. Still waiting for biopsy. My kids are here and staying for the foreseeable..." + (show)

Well I got the biopsy result and it’s poorly differentiated carcinoma which I’m told means they can’t identify the primary origin. I just can’t catch one piece of positive news. I pray this doesn’t hurt my chances for molecular therapy- I have no clue. The thoracic surgeon who called with the results said the NGS will tell a lot more when it comes back but what he shared was short on detail. We moved my brain MRI up to today.. they called and had a cancellation so I took it. If anyone here has had this biopsy result or you’re aware of some other person/ forum.. I’m all ears.

Merry, Alumni Mentor | @merpreb | Oct 10, 2023

@sayitisntso- I'm sorry for your news. Many people get diagnosed with cancers that stump doctors as far as the primary goes.

Why have you settled on Molecular Therapy? Has a doctor recommended this?

Lisa, Volunteer Mentor | @lls8000 | Oct 10, 2023

In reply to @sayitisntso "Well I got the biopsy result and it’s poorly differentiated carcinoma which I’m told means they..." + (show)

@sayitisntso, That's interesting, and disappointing that it isn't more clear. Unfortunately, that tends to be the way early diagnosis can go; wanting answers and having to wait for one more scan or lab test. Hopefully the NGS test results point to the driver of the cancer, but Merry is correct, there are cases where they can't determine the primary source of the cancer, but we don't know that yet. More waiting... I hope your MRI appointment went well today. I just try to continue to breath and relax as much as I can through those scans. They just take so long!
All of the feelings that you're having are expected. Try to give yourself grace during this time. There are still too many unknowns to do too much research, so take the time to do what makes you and your kids happy. All of your feelings are valid, no matter where that takes you, just remember to pull yourself up from those deep spaces if you find yourself going there.
We don't yet know all of the information, so it's hard to know what to expect. And everyone is different too. Hugs!

pb50 | @pb50 | Oct 10, 2023

In reply to @sayitisntso "Well I got the biopsy result and it’s poorly differentiated carcinoma which I’m told means they..." + (show)

I was actually told to expect that the path report on my nodule would be “we aren’t sure”.
I didn’t know until then that there was such a scenario. I assumed every cancer was typed and catalogued. Mine was Mucinous adenocarcinoma. He told me it was only 5% of lung cancers, but I’ve seen several
on this site, so I’m not sure that’s true.

Moving to an area I know nothing about, what is molecular therapy? Is that different than immunotherapy?

Lisa, Volunteer Mentor | @lls8000 | Oct 12, 2023

In reply to @pb50 "I was actually told to expect that the path report on my nodule would be “we..." + (show)

Hi @pb50, Thankfully research keeps coming up with new therapies. The molecular therapies are sometimes referred to targeted therapy. My cancer has one of the mutations that are 'targetable', so I take a targeted therapy (oral pills) that stops the cancer from forming.
These are unlike immunotherapies, where your immune system is programmed to attack the cancer cells.
"Targeted drug treatments focus on specific abnormalities present within cancer cells. By blocking these abnormalities, targeted drug treatments can cause cancer cells to die. Many targeted therapy drugs are used to treat lung cancer, though most are reserved for people with advanced or recurrent cancer.
Some targeted therapies only work in people whose cancer cells have certain genetic mutations. Your cancer cells may be tested in a laboratory to see if these drugs might help you." (https://www.mayoclinic.org/diseases-conditions/lung-cancer/diagnosis-treatment/drc-20374627)