Mayo Clinic Connect
Am just trying to find anyone to have a discussion with that is currently or has had the struggle with either of these cancers.
I’m meeting with a surgeon on Friday. I am 54 years old. I started having neurological symptoms a year and a half ago. First neurologist said nothing was wrong. Second neurologist said I have cerebellar ataxia, progressive and no treatment. Likely genetic but insurance doesn’t cover testing. No follow up. As symptoms worsened and daily living became more impacted I went to a third who confirmed cerebellar ataxia and couldn’t offer anything. After losing 30 lbs, experiencing night sweats, difficulty swallowing, and reduced appetite. I went to a fourth neurologist who suspected MG. Blood work and EMG ruled that out. Muscle weakness is worsening and debilitating. Because of went loss I was referred to GI doc. Colonoscopy/ endoscopy was clear. Ordered CT where they found an anterior mediastinal mass. I was told that blood work for paraneoplastic cancers came back positive for calcium channel something or other. So many doctors…. I might add that I’ve already been dealing with congenital cardiac issues and have CHF for past five years so I take a ton of meds and I have an AICD.
So, anyhow I was told that this small mass could be lymphoma or thymoma. Because of my neurological issues it seems like they are encouraging me to think it is a benign Thymoma. But MG was already ruled out…. is there such a thing as Benign Thymoma? Depends on what I’ve read…. some articles say it’s all cancerous but encapsulated is not aggressive. Some call encapsulated benign…. is like some info before I see the surgeon. I’ve had such a runaround that I’m mistrustful and each specialist says something different. Thanks.
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sarcoidosis symptoms can be pretty far reaching , around the lung (just what I need) and then on to other organs, most often the liver but my liver functions look "great". The first time they were positive was a large grouping around my hip. I was told I was having a biopsy by my spine for what looked like cancer. When they walked into the room to do the procedure they are marking me only they are marking my left HIP NOT MY SPINE !!!!! after a couple calls I find out "they" had decided to test in my hip area as they looked the same and it was easier to get to. The change didn't sit to well with me don't like last min. suprises. What's done is done and it was sarcoidosis. Now it seems to be everywhere. But symptoms can be joint pain, cough that hangs on, dry eye weight gain or loss…..all over the place and pretty minimal at first. I just haven't been my usual perky self hahaha. Just been so tired. Tired of being tired, tired of the pain and listening to people on the news say I don't need opiods …………….its all in my head …or I am an addict or why don't I try ??????? it cures cancer !!!!!! SORRY I am just a bit crabby, have been to 3 funerals in 4 weeks all to young 1 stroke and 2 cancer and it was just the anniversary of my daughters death.
Life is a gift and I am truly grateful some days the battle I fight everyday has made me weary and I can't be my usual chipper self.
I love everyone on here and that has offered and given me so much support. Going to ask the hubby for a back rub and try to get some sleep!!! Good night to all
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
I am so sorry to hear of your pain and your new diagnosis. Your attitude always remains so good when you say, "Life is a gift and I am truly grateful some days the battle I fight everyday has made me weary and I can't be my usual chipper self." I'm always inspired by that attitude!
I have attended funerals lately and have friends in ICU and hospice so I know how it can create a sense of despondency. I am always impressed at how you create your attitude by good thinking.
I hope you had a good night's sleep and I look forward to hearing from you again!
Liked by Colleen Young, Connect Director
My cancer story is a long (luckily) and convoluted story. Symptoms on the onset are very benign as easily attributed to so many other things. My main symptoms were a congested cough that would not go away (had it about 6 months) trouble catching my breath, but I was 50 and had put on some weight . My primary kept saying that though it sounded horrible she didn’t hear anything in the lungs (as far as pneumonia ) so no chest x-ray was ordered. Last week of June 2009 I got a 2nd opinion he immediately ordered an x-ray then showed me exactly where the pneumonia was showing up in my right lung gave me an RX and sent me home. At dinner I get a phone call from the Dr. and he said ” I am so sorry’ I do not have pneumonia but an anterior mediastil tumor (??) and again ” I am SOOOO SORRY ” he said a ct scan was already ordered . From the number of I an sorrys that were said I said /asked the results of this are not going to be good are they, as in terminal .and his answer was yes. So the CT was done had to wait over the 3 day 4th of July weekend for results ( by this time I probably had logged a hundred hours of research on the computer) the Tumor measured approx. 3×6 had a biopsy again waited over a weekend was positive and we met with my first oncologist. I was expecting a Thymoma diagnosis but she said Thymic Carcinoma ,when pushed by me said she would be surprised if I made it to Christmas she also said that she doubted a surgeon would be bothered to meet with me because there was no point it was to far advanced. BOTHERED I couldn’t believe she said a Dr. couldn’t be bothered with my case. LUCKY for me she was wrong and the wonderful Dr. Deuchamps ( I am sure I spelled that wrong) who was head of thorasic surgery took my case and performed the surgery. By this time the tumor was approx. 14 x 6 x ? had invaded my right lung paralyzed my right phrenic nerve and had wrapped around my heart penetrating the peri-cardiem . Dr. thought surgery went very well. After some recovery time I had 28 sessions of intense Toma therapy radiation. He said the radiation would increase the length of time before recurrence, which I was all for considering most patients die after recurrence, I had almost reached the magic 5 yrs when it came back. During that 5 yrs I was in the hospital over a dozen times, more than once my husband was told to be prepared for my death but I keep defying the odds. With the recurrence I was told my only option was chemo and that I was now in what was considered palliative care and the hope was just to shrink it and stop new growth. It was a tough 6 months but I made it thru. My hair, eyelashes, eyebrows have grown back. I have been complaining of severe lower back pain and during a scan to try to find cause the radiologist noted he saw what he thought may be “drop” metastisis and suggested a chest CT. for what ever reason while my primary covered with me the rest of the results of the scan (bulging disc etc. ) she saw no reason to mention this. I only knew because I had just done a print out of the results at home (because she waited 10 days to call me) . I go to Mayo every 3 months for scans and bloodwork and have an apt middle of Jan. so I will find out then who was right and if I should have put more urgency into it. I really wanted a nice holiday season and to be thankful for my many blessings so I have just put it out of my mind and enjoyed my 5 grandsons.
Believe it or not this is the condensed version !!!! LOL I have had some crazy and beautiful things happen to me during this journey.
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.
Liked by Teresa, Volunteer Mentor, allisonsnow
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
Liked by 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
Liked by Teresa, Volunteer Mentor, shilo14
@jacquie1 I am glad you found us here though I am sorry you needed to, and so many tests and Dr.s ! When I was first diagnosed in 2009 I did nothing but research and found varying "opinions" on weather Thymoma was a cancer at all. There are no distinct blood markers per say. BUT it has been decided that it is a cancer not just a benign tumour. Some Drs are just resistant to this idea. Thymoma just is a slower cancer than Thymic but it does get confusing.
Have a good night
It has been a while since you have posted. You were to have an appointment with a surgeon in April. I hope that you received some information to help you understand your disorder.
If you are comfortable sharing how you are currently doing, I would enjoy hearing from you.
Pleased to say my CT scan was clean. But they changed the protocol from every 6 months for 2 years and then once a year for 8 more. Now it's every 6 months for ten years. Is that consistent with everyone else's protocol?
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.
Liked by Teresa, Volunteer Mentor
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!
Glad to hear that your scan turned out so well ! Always heartening to hear the GOOD news. I am going thru an active stage so my protocol is different. I go every 3 months or more when in treatment. The one time they waited 6 months it came back showing a recurrence. Makes me leary of when they will suggest 6 months again. But that is not for a while so no sense worrying about it now. But back to your question …it does sound like what I have heard..
Again congratulations on the clean scan.
Yes I had my thymus gland removed in April very painful operation but I recovered very well.
Hello @shaycoe12 and welcome to Mayo Connect
I appreciate your posting about your successful surgery. I am glad to hear that your recovery went so well.
Please feel free to share more about your surgical experience if you are comfortable doing so. Will you need any follow-up treatment?
I look forward to hearing from you.
What procedure was used to remove your thymus gland?
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