Hello Allison! We have been living parallel lives. In 2012, I also had profound shortness of breath and thought I might have pneumonia. My PA felt it was just pleuresy and wanted to send me home, but my gut insisted that I needed an x-ray. So I pushed for one. That was when the anterior medialstinal mass was discovered. That triggered a follow-up CT scan, but of course, like you, this fell over the Fourth of July holiday, so I had to wait a few days.
By the day of my CT scan I awoke to petichi on my left shoulder and a big bulge at the base of my neck from the blood clot we would find later that morning. I was admitted immediately, and for treatment and removal of the dangerous blood clot, but it took weeks for the cancer to be accurately diagnosed.
Figuring out what kind of cancer it was proved to be tricky. The biopsy was done and sent to Mayo Clinic, as we live in western Montana and they couldn't identify the cells. I was ultimately diagnosed with Squamaous Cell Thymic Carinoma and scheduled for surgery in late July. My main tumor sat directly on top of my heart, but it had invaded my chest cavity everywhere, as well as three veins, with my bracheocephalic vein incurring a blood clot from my left elbow to my sternum. As a very aggressive and invasive cancer it had also wrapped around both of my phrenic nerves, and through my PET scan was found in many lymph nodes in my left clavicular area (thirty were removed). My right phrenic nerve was sacrificed during surgery, but was surgeon was astute enough not to try to unwrap it from the left phrenic nerve, as I would now be a a ventilator. Like you, I went home on oxygen 24/7, and had to sleep upright just to be able to breathe. I then had months of weekly chemo whie the tried to plan how to do the radiation without further damaging my heart or usable lung. Eventually I was referred to MD Anderson Cancer Center in Houston for 7 weeks of daily proton therapy radiation, combined with more chemotherapy. But, I survived after a grim prognosis and I too have beaten the odds like you, and lived to see two of my sons married and we just welcomed a new grand daughter into the world.
I am so blessed to be here! Yes, also the Reader's Digest condensed version, but I am tired and off to bed. Hope we can chat more later.

Hello @shilo14 You are just what I needed this morning ! a person knowing and feeling blessed. We do seem to have a lot in common ! It does seem to me that what I most need I receive. I hadn't been on connect for so long it seems and since I quit following one of the groups I was in I haven't received one message or greeting, caught me at a time I was already feeling down and I took it to much to heart didn't think anyone was listening to me anyway. But today I decided to get off my butt and try to re-connect myself because I have met some awesome people here and the mentors I have been in contact with are great. And here you are at the very top of my page lol
I hope we do connect and can talk more. It is not that easy to find patients like us I guess that is why it is considered rare,

The fact that our cancers were discovered almost accidently is not uncommon because the symptoms are so passive and as for me I put a lot of it to just getting older and fatter. I can remember clear as day that while I waited for test results I had a lot of time on my hands since I didn't sleep. My husband would find me on the computer til 4 am doing my own research looking up studies from all over the world. So as I was checking off all the symptoms I had I burst out laughing I had nearly every symptom but one......weight LOSS hahahahaha I asked God why if I had to get this very rare form of cancer he couldn't have at least lost some weight in the process !!!!! But I guess I decided I wasn't in charge and neither was the cancer so go with the flow and see where it takes me.

I do hope we can connect and chat more. I do believe they have a way to communicate privately if we don't always want it in the forum. It is easy to get off topic...good conversations, but off topic...….. sharing of private information etc.
I will try to remember to check back in later today or tomorrow (another thing my memory is shot lol )

bye for now

Allison

@shilo14
was just headed off to bed ...and hopefully sleep... but wanted to check in and see how your day was. I was just wondering where you are at now as far as the cancer. in remission? for some reason I do not like that word with this cancer because it seems like it is always up to something and we know it will always eventually be back. I fell like I am sitting in the waiting room for results only this wait is usually about 3 months long. Should be back at Mayo by mid July to see my oncologist, pulmonologist and maybe someone in neurology for the neuropathy. Living in western Montana where do you go for check-ups.

CONGRATULATIONS on being a gramma isn't it just the best feeling in the world to hold that little bundle of love !!!! I was there for for all 5 births and I think it was better than when I held my own children! But then all we are responsible for is loving them.
Didin't get to much down outside today WAY to humid (makes it to hard to breathe) so I just piddles away at small projects in the house. You know the kind.....they take all day but no one can tell you did anything hahahah
Have a good night

Good morning Allison,
My reply written to you earlier hasn't posted. It'll probably post (repeatedly) later in the day when the glitch is corrected - oh dear! I've loved seeing your story, as it is not so different from mine. And I love your upbeat attitude, as we persevere, like mine.

I have a primary care physician here in Polson, MT, but travel to MD Anderson in Houston yearly for a CT and checkup. My status is currently NAD (no active disease); I can live with that! Literally!
I go to Texas for a few reasons:
First, because I trust them to read my CT accurately (and to take my radiation field into account and not scare the crap out of me telling me my cancer has returned, as they did up here). My scar tissue makes them think new tumors here in Montana.
Secondly, my oncologist here was good, but rather strange, and he has since retired. I loved my docs down in Houston, but they too have moved on now. My radiation oncologist retired and my thoracic oncologist moved to California, so the last few visits I like you, have been shuffled. But I will now hopefully continue to just go annually, At first it was quarterly, then twice a year for five years, but now once.
Enough for now. Off to feed pets, then I'll finish up. Enjoy your day!

Good morning Allison!
Lovely to see both of your messages when I got on the computer this morning - finally got up and moving after realizing I wasn't going to fall back sleep. I struggle with sleeping anyhow, do you? Wondered, as it sounds like you also have breathing issues from your phrenic nerve involvement? Right or left nerve? Mine (that is cut) is my right.
I now sleep with a CPAP machine, as suggested by an RN who works with folks with COPD (which I do NOT have). She thought it might help and so my doctor ordered a sleep study and they compared my oxygen level on straight oxygen versus on the CPAP. The Continuous Positive Airway Pressure keeps my oxygen level higher than just sleeping with oxygen alone did. I can also sleep laying down again now, after five years. I breathe through my enlarged neck muscles, as well as the muscles between my ribs, in the intercostal spaces. Later, if my situation changes, I can add oxygen into the CPAP also. What a change though!