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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
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From your latest information above it would seem that you are not a patient within the Mayo system. It has been my experience that within Mayo all reports are promptly posted to the patient portal and the doctors supporting my care are all integrated and up to date with the latest findings whatever they may be. When dealing with doctors from within different medical facilities you can expect some of the less than optimum information sharing and delays that you are experiencing. That just may be something that you will need to deal with due to your location. In regards to your anxiety level you do need to be patient and try to remain calm………when the pertinent information becomes available the doctors will present the facts and lay out what they feel is the best course of action for your condition. Having such a plan going forward will really help lower that anxiety.
Good luck!
Regarding various comments on posting of reports - yes Mayo is excellent about posting results as soon as they are available. But other places do it too. I have patient portals with two other clinics (large networks) and each posts test results immediately upon being done.
And one of my clinics links with Mayo so everything shows up on both sites immediately. The other one for some reason does not link to my Mayo portal which is something they choose to not do. So I have to go directly there.
The problem is with small groups of doctors. They do the minimum required by law. In one case the doctor ordered a CT scan by a local Radiology group. The Radiologist sent the report to my Specialist's group which posted it and I could see it. I expect the institution which did the PET scan sent it to the ordering doctor immediately and that should be posted on your doctor's patient portal. I expect these organizations to do what they are supposed to do.
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1 ReactionHi Everyone,
The news couldn’t be worse. Confirmed Stage 4 lung cancer and has spread to at least several areas (hot spots)… long story short, PetScan report still not done so both drs read the pet scan with the disclaimer that the report will tell more. My middle lobe of my lung didn’t collapse, it’s actually a mass. That bump on my rib, is also confirmed, sternum too and random small hot spots on back and I think adrenal and either liver or kidney. No surgery, straight to Oncologist however Dr #1 is taking me into the hospital at 6:30 tomorrow morning to take off the lump on rib for biopsy. He was going to send me to a pathologist but he was concerned that a fine needle biopsy which is all the pathologist at the hospital would do wouldn’t get enough tissue for the genetic testing and was already scheduled for surgeries tomorrow so called me after I left his office and asked if I’d be willing to let him do it in the OR tomorrow. Their mutual concern I think is that this bump on rib grew so quickly over the last month so they want the type of cancer identified as soon as possible. It was a terrible day and my daughter just flew in, she will be here momentarily so I need to be quick… my other daughter is coming in the morning. I will have a brain MRI, I think Fri or Mon., first dr didn’t suggest it but 2nd dr said let’s get it done to ensure it hasn’t gone to brain.. he didn’t seem to think it has but it is protocol. Both drs said the same thing, looking at me they would not have expected this diagnosis or that it’s actually advanced.
Dr #2 told me to ensure Dr #1 orders Genome testing or NGS Next Gen Sequencing with the biopsy.
Guys I am all ears on anything else you recommend.
Has anyone been Stage 4 that spread and here to talk about it?
Both Drs spoke very highly of the miracles over the past few years of targeted immunotherapy and TKI so I pray my DNA or whatever it is will be a match for it.
They both spoke of Chemo and both said no radiation because it’s spread.
I’m sure I’ll think of more. I think I’m too in shock to even think and my kids are beyond devastated so I need to fight this with everything I have.
Again they don’t have the report yet which will tell more but were both confident in what they saw. I knew after Dr #1 I didn’t need appt with the second dr but went anyway and glad I did.
I asked what size the lung mass is… they need to wait for report.. Dr #1 estimated 4cm… Dr #2 estimated 2cm. Both said size doesn’t matter at this point, what matters is that it spread.
Please if there are questions I should be asking let me know.
I’ll read back through the previous responses later.
I think my adrenaline combined with both kids coming has me in a bit of denial. It’s just surreal.
I don’t look sick. I can breath, I’m not coughing. SMH
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2 ReactionsAlso I had a mammogram just 2 weeks before I found that lump which is directly below my breast. It’s not in the breast literally right under it.. I’m sure I would have felt it if it existed at the time.
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2 Reactions@sayitisntso, I wish it would have been better news. What you are feeling is normal, numbness for now. Expect to be overwhelmed with information and a language that you don't understand. You'll learn, and we can try to help you. I'm glad that your daughters are there/coming to support you, and each other.
Your doctors are taking the expected next steps in ordering the brain MRI and the biopsy. Today, there are many types of treatments for lung cancer. The biopsy will provide vital information in directing the treatment plan. My oncologist waited for the NGS/bio-marker tests to come back before doing any treatment. I was getting sicker and sicker but looking back I'm glad we waited. With your accelerated spread, I'm surprised that you aren't experiencing symptoms too. I hope that continues for you.
There are many stage IV patients living longer active lives. Until we know more about the specific type of cancer, it's difficult to predict what you'll face. That biopsy is critical. There are many different types of lung cancer, and just as many or more treatment options.
I was diagnosed stage IV 3 1/2 years ago, and just hiked Rocky Mountain National Park last month. I have no plans to slow down anytime soon.
Spend time with your daughters, don't worry about responding to Connect right away. How are you feeling after the biopsy? Does one of your daughters live nearby?
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10 ReactionsThanks for your response. No, both of my daughters live out of state however are talking about planning ahead to take turns being here. The biopsy went fine. They knocked me out which wasn’t the plan as of yesterday and it was as easy as a colonoscopy where they rolled me into the OR and next thing I knew I was in recovery and home for a 10am work mtg. -I don’t feel any pain from it at this point and glad that ugly bump is off me.
I was told biopsy may be back by Friday but NGS can take up to 2 weeks.
Still no answer on PetScan report! I’m going to call again now.
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2 ReactionsI would be willing to hazard a guess the doc has a prelim verbal from the radiologist and that is what those summary impressions are based on.
As others have said, try to just
Calm yourself and practice your relaxation skills. You will get insight soon from the docs and then it will be all hands on deck if it’s anything to react to.
Best wishes…
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4 ReactionsHearing this gives me hope! May I ask what treatments you received. I, too, am Stage IV.
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3 ReactionsLisa gives great insight and advice. I will only add that facts and plans will be coming at you right and left. Don’t hesitate to ask them to repeat themselves and keep a journal in your purse so you can make notes. And please consider what your method is to take 20 minutes and tune everything out. It really helps with sanity and energy.
All my best wishes for you…
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1 ReactionI am so sorry at this horrible news. I'm glad your family is going to be around you for a little bit, and you just have to keep thinking positive no matter what at this point. You asked about people with stage 4 surviving, and yes they do. I have a friend that I met on here and she was in a group for a little while with three other women that were all stage 4 and two of them had been stage 4 for about 5 years; it all depends on how your body will react to everything they're going to do at this point. Many times people respond extremely well to immunotherapy, and other things. This is all going to be dependent on how your body responds. I'm hoping that you can find some peace and just laugh when you can and cry when you feel like it - every emotion you have going forward is going to be normal and don't feel bad about having those terrible moments, embrace them, but also laugh as much as possible!!! You are like a ship on the ocean in the eye of the storm right now so be prepared to change your sails as the wind changes direction. I pray you find calmer water, and brighter skies soon! Please keep us updated.💗
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