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.

Hi,

Here's a great program that the Go2 Foundation for Lung Cancer recently held. I think it has some of the most valuable information about the diagnosis process and other gems. I highly recommend this program. I highly recommend the Go2 Foundation. They have a great patient handbook also.

I hope you find this program as informative as I did:


Warmly,
BPB

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@bpb

Hi,

Here's a great program that the Go2 Foundation for Lung Cancer recently held. I think it has some of the most valuable information about the diagnosis process and other gems. I highly recommend this program. I highly recommend the Go2 Foundation. They have a great patient handbook also.

I hope you find this program as informative as I did:


Warmly,
BPB

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@bpb, thanks for sharing. Dr. Hogarth has an interesting perspective from the pulmonology side of the house. I liked 's overall message of 'why not live better?'

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@sayitisntso

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.

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I am so glad your daughters are with you. If I have dates right, you’ve completed your MRI and your first oncology appointment.

Know we are thinking of you, and sending good JuJu your way. ❤️

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@lls8000

@bpb, thanks for sharing. Dr. Hogarth has an interesting perspective from the pulmonology side of the house. I liked 's overall message of 'why not live better?'

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I also think he has good information about the beginning of the process of being diagnosed and what kind of CAT scan to make sure you're getting as well as the tumor's biomarker/genetic testing. He also explains how the PET and CAT scans differ.

I love his humor and his approach to cutting out needless suffering. I thought people would find a lot of good info in this program. 🙂

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I’m just a few steps ahead of you in this process. Went to Europe in June. Came home with viral pneumonia and aspergillus infection. After taking meds for that, followup CT scan showed a small spot in right lung that has grown a little since last CT. Mayo did a bronchoscopy this week. I’ve been reading test results as they are posted. Much of it is difficult for me to interpret but with the help of the internet I have looked up definitions. I’m expecting a phone call from Mayo regarding next steps because it appears I have a carcinoid tumor. Like you, I live alone, my only son & daughter-in-law live 3 hours from me. Time to start a plan how to manage the changes ahead. Hope you can have care if needed at Mayo.

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@jessicamc

I’m just a few steps ahead of you in this process. Went to Europe in June. Came home with viral pneumonia and aspergillus infection. After taking meds for that, followup CT scan showed a small spot in right lung that has grown a little since last CT. Mayo did a bronchoscopy this week. I’ve been reading test results as they are posted. Much of it is difficult for me to interpret but with the help of the internet I have looked up definitions. I’m expecting a phone call from Mayo regarding next steps because it appears I have a carcinoid tumor. Like you, I live alone, my only son & daughter-in-law live 3 hours from me. Time to start a plan how to manage the changes ahead. Hope you can have care if needed at Mayo.

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Hi @jessicamc, how are you doing? Waiting for appointments and phone calls is one of the hardest parts of the diagnosis process for most of us. Hopefully they identified this early, and I hope you are feeling better after the pneumonia. Have you heard from your doctor yet?

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@sayitisntso

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.

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@sayitisntso, Just checking in on you. How are you doing? The waiting is such a difficult park of the diagnosis process. Have you heard back from your doctors on the NGS testing yet? Are you still waiting for the next steps?

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@lls8000

Hi @jessicamc, how are you doing? Waiting for appointments and phone calls is one of the hardest parts of the diagnosis process for most of us. Hopefully they identified this early, and I hope you are feeling better after the pneumonia. Have you heard from your doctor yet?

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My Dr called me Friday. From the lung biopsy report, 3 lymph nodes tested negative for malignancy. Immunostains show neoplasticism cells are positive for keratin, chromogranin and synaptophysin supportive of neuroendocrine differerntiation. “ “Findings are consistent with a carcinoid tumorlet/typical carcinoid.” “Ki-67 immunnostain reveals a low proliferative rate, mitoses or necrosis are not seen.”
The dr said because it is so slow growing not an emergency, wants to confer at weekly meeting to determine method of surgical removal. Was told this type once removed surgically seldom returns.
I feel fully recovered from the viral pneumonia in June. I was also treated for an Aspergillus infection. I keep bouncing back. My stamina isn’t quiet as good as it was, to be expected. I recently returned to the Y for some light weight workouts and 30 minutes on the elliptical machine. I am focused on trying to get 65 grams protein, 5 fruits & veggies every day. I will be 77 in November, want to be as healthy as possible to make recovery easier. I’m sleeping good, to my happy surprise, I’m taking anll this quiet well. Overall, I feel very fortunate. Most of all, I’m so grateful to have Mayo Clinic care.

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@jessicamc

My Dr called me Friday. From the lung biopsy report, 3 lymph nodes tested negative for malignancy. Immunostains show neoplasticism cells are positive for keratin, chromogranin and synaptophysin supportive of neuroendocrine differerntiation. “ “Findings are consistent with a carcinoid tumorlet/typical carcinoid.” “Ki-67 immunnostain reveals a low proliferative rate, mitoses or necrosis are not seen.”
The dr said because it is so slow growing not an emergency, wants to confer at weekly meeting to determine method of surgical removal. Was told this type once removed surgically seldom returns.
I feel fully recovered from the viral pneumonia in June. I was also treated for an Aspergillus infection. I keep bouncing back. My stamina isn’t quiet as good as it was, to be expected. I recently returned to the Y for some light weight workouts and 30 minutes on the elliptical machine. I am focused on trying to get 65 grams protein, 5 fruits & veggies every day. I will be 77 in November, want to be as healthy as possible to make recovery easier. I’m sleeping good, to my happy surprise, I’m taking anll this quiet well. Overall, I feel very fortunate. Most of all, I’m so grateful to have Mayo Clinic care.

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I'm glad that you are doing so well, and that the appointments are moving forward. It's reassuring to know that these don't generally return after the initial surgery.
There is a Mayo Connect group for NET too (neuroendocrine tumors), where I've seen some discussion of carcinoid tumors: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
I'm at my Y quite a bit, it's been great for working out and the social side of meeting new people too.

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