New to the forum, nervous

[Conor]

Hi everyone, my name's Conor! I'm 28 years old and from Vancouver, BC, Canada. 

For the last year I have had quite debilitating shoulder/neck pain. My doctor ordered a MRI for me that I had to wait about 6 months for. We got the results back last night. They unexpectedly found "multiple" masses in my right lung with moderate pleural effusion. 

I don't smoke and besides having a quite horrible H Pylorri infection last year that had me hospitalised with internal bleeding(ulcer) I'm generally very healthy. 

My doctor said he is very concerned about possible malignancy... Which is scary, simply because I just got engaged and had no symptoms whatsoever of lung cancer. 

I see the thoracic surgeon on Tuesday and I'm just wondering what you all think. My mind goes to dark places and I worry alot, not so much about myself, but about the people I love and how this will affect them. 

Anyways, I'm very thankful for a community like this as I feel better knowing their are others who have gone through something similar....and are still here. Thanks!

 

[GaryG]

Hi Conor: Sorry to hear about the bad news at such a young age. Glad you joined our group where you will find plenty of help and guidance from experienced cancer patients. It is normal for people to get lung cancer without having any symptoms. That's why it is not an easy cancer to cure.

First things first. Any plans for a biopsy and biomarker tests. A biopsy is a sure way to detect cancer , know the type and determine the course of action. Will the surgeon perform the biopsy?  Let's hope first you don't have cancer but you need to know that we have many cancer survivors here because there are many effective new drugs to combat this horrible decease.  Please post back the results of your meeting with the surgeon and make sure to ask for a biopsy and a biomarker test. I wish you the best.   

 

 

[Rower Michelle]

Hi Conor,

I'm sorry you have found yourself here.  I faced a very similar issue two years ago, as a never smoker and competitive athlete, wondering how I could possibly be in this situation and how on earth was I going to tell my parents about it.  Gary has given some wonderful advice about biomarker testing, for someone under the age of 50 it's absolutely critical to have a comprehensive panel (from a company like Foundation One).   We'd recommend to stay away from Dr. Google since that can take you down a terrible rabbit hole.   Those dark thoughts are overwhelming and normal.  Take this one hour, one day at a time.  Stay close to us here and keep us posted. 

Michelle 

[Curt]

Conor hearing you have a mass on your lung is very scary. Take it one step at a time.  Mass doesn’t  mean malignancy.  While doctors can make well educated guesses based on scans an actual diagnosis can’t be had until a biopsy is done. The advice that Gary and Michelle are giving is good. When they do the biopsy insist on their doing biomarker testing. If it is in fact cancer the results of the biomarker test will drive treatment options. Let’s hope the masses are benign, but know that if they are malignant there are ever improving treatments available.  Hang in there.  

[Conor]

Thank you all so much. I will follow up after my meeting with the thoracic surgeon on Tuesday. Will ask for a biomarker test. I think they already have plans to do one as they asked that I urgently do blood work yesterday to check my kidney function so we could potentially do one asap. 

 

Will follow up next week. 

[Tom Galli]

Welcome Conor,

Pain, multiple masses, and pleural effusion do not sound good. I'm also very sorry to learn about your long wait for a MRI. There are differences in allowable procedures between the Canadian National Health system and care offered in the US. Some of the options or alternatives we suggest, unfortunately may not be offered in Canada.

Gary suggested biopsy and a needle biopsy of one of the masses seems like the next reasonable step in your diagnostic process. Lung cancer treatment varies significantly according to types of lung cancer. A needle or surgical biopsy, or bronchoscopy biopsy is required to determine your type (if in fact you have lung cancer). In the US, these procedures can be performed by a number of medical specialties including an interventional radiologist, a pulmonologist or a thoracic surgeon.  Here is information about lung cancer types.

Gary also suggested biomarker testing and indeed this is a good idea if offered in your specific medical circumstance. Lung cancer is diagnosed by a pathologist using a mounted slide and a microscope (this is called a histology diagnosis). Cells are viewed under a microscope and the size and shape reveals if you have lung cancer and if so your type. There are two types: small cell lung cancer (SCLC) and non small cell lung cancer (NSCLC). NSCLC is further divided based on cell shape and size into three subtypes: adenocarcinoma, squamous cell and large cell. Of these, some forms of adenocarcinoma show vulnerability to treatment by what is termed targeted therapy. Moreover, some presentations of both types of lung cancer are treatable using immunotherapy. To understand if these new therapies will work on your type of lung cancer (should you have it), biomarker testing or further on laboratory testing is performed after the histology. This testing is commonly performed in the US, but I don't know the circumstances of its availability in Canada.

As you see, just the diagnostic trail is complicated; treatment can be complicated cubed. You mention multiple masses in the right lung with pleural effusion. If one of the mass is determined to be lung cancer, the others will be presumed to be lung cancer and the pleural effusion will also be presumed to be metastatic disease. The question then will become what stage of lung cancer (if you have it) you might have. Lung cancer staging largely dictates if surgical resection is available as a treatment method. Generally, stage I and II disease can be addressed surgically. Stage IIIA is also commonly addressed with surgery and post surgical chemo/radiation. Stage IIIB may sometimes be treated with surgery, but Stage IV is normally not surgically treated.

All of this is complicated and difficult to assimilate given the uncertainty and perhaps fear you are experiencing. We understand and we've all been on this sometimes laborious and tenuous diagnostic trail. But, the fact we've been down the trail means we can offer suggestions to ease your journey in both diagnosis and treatment. Let us know the results of your surgical consultation if you are comfortable. This is a good place for answers to questions.

Stay the course.

Tom

[Conor]

Hi everyone,

Just replying back as it's been a huge week and it looks like we have, at least, a couple answers. 

I don't have lung cancer, yet. I don't have lymphoma, yet. What I do have is multiple cancerous swollen lymph nodes. The type of cancer, at this time, they can't determine. Although they think it's a type of skin cancer. Which means the masses are distant. Not localized. 

Next week I will be getting an emergency biopsy done on one of the malignant lymph nodes. I'll also be taking part in a clinical trial to help people with this type of cancer in the future. My head doctor told me today she believes what I have to be, not curable. Also that, she's quite worried and that I should stay around family and friends but that she's expediting my PET, CT scan and biopsy as much as she possibly can. 

I'm a bit scared. As I really was looking forward to having children with my fiance and growing old with her. That's the worst part. Truly. 

Thank you so much for the support. I'll stay the course but also give myself room to feel... Sad. 

Will update again if anything changes. All the best to all you survivors,

.c

[GaryG]

Connor: Good thing you don't have lung cancer. Still wait for the biopsy results before you come to any conclusion. It is surprising that your doctor spoke in those terms when the biopsy is not done I wish you the best.

[LexieCat]

Conor, incurable does NOT mean untreatable. We don't know yet what kind of cancer you have, so I may be saying something inapplicable to your situation, but I (and many others here) have Stage IV "incurable" cancer. Some are 15-20 years out with no evidence of disease. They don't use the word "cure" for Stage IV, but the longer you get out from your diagnosis without a recurrence (after treatment), the less likely you'll ever have one.

So yeah, your situation is scary and I don't blame you for feeling down and scared. But try not to write yourself off too soon, or your plans for a great future. You might just get that.

[LouT]

Conor, 

Listen to Lexie.  Cancer treatments are changing each and everyday.  Some folks here have participated in trials that are now accepted treatments for newly-diagnosed patients.  Some cancers (including lung cancer, the most recurring and deadly one) can be treated as chronic conditions.  I hope that your treatment team will lead you to a protocol that will give you hope.  In the meantime you can feel sad, but don't give up hope.  Some folks here have faced situations I don't know if I could tolerate, but here they are today NED (No Evidence of Disease) and living their lives.  Your mind has such an effect on your body's ability to fight off any disease that you need to make it a weapon in your arsenal against this sickness.  My prayers and hopes for you to find a good treatment and respond well to it.

Lou

[Tom Galli]

Conor,

I agree with everyone's suggestion about implications for achieving a cure. There are only two things certain as beings in this world: birth and death. None of us know the timing with certainty. Yes, cooperate with diagnosis and treatment but while engaged with these activities, don't forget you have life to live.

Look at yourself in the mirror in the morning. If you don't see an expiration date stamped on your forehead, then enjoy the day and plan for another.

Stay the course.

Tom

[Conor]

Thank you all so much. You've given me some gas to put in the tank. 

I will write back again once the biopsy is completed next Wednesday and update with the findings. My fiance has been the biggest light in the storm for me, repeatedly talking about our future and things we will do. She will never know how much it means to me. 

Again, thank you all.

.c

[LexieCat]

Great--and don't sell your fiancee short, either. If the shoe were on the other foot, would you be looking for an out? None of us, as Tom pointed out, has any guarantees in this life. That's where they got the "for better or for worse" stuff. And you might not have said the words YET, but clearly you've both been planning to. So your first test is coming up a bit early--let her support you now. You can give each other strength. And believe me, you have more than you know you do.

[Rower Michelle]

Conor,

You’re story sounds a lot like one of my rowing friends, the doctors weren’t certain of the cancer type- which after a third opinion turned out to be a rare form of skin cancer with lymph node involvement.   He had a course of chemotherapy, radiation and is now doing really well on a newly approved immunotherapy.  The key to his success as a survivor was getting that third opinion.  Keep us posted.  
 

Michelle

[Conor]

Hey Michelle, 

Can you tell me what the type of cancer he had? Also what treatments he had? 

Thank you,

.c

[Rower Michelle]

Hi Conor,

Just responded to your PM- short answer is after three opinions and two occurrences he finally received the correct diagnosis and treatment plan: squamous cell skin cancer.  He receives immunotherapy every three weeks and is in remission.  
 

He returned to work and competitive rowing.  He’s doing great! 
Michelle

[Rower Michelle]

Good luck with tomorrow’s appointment, will keep you in our prayers.   One step closer to the treatment plan...

[LexieCat]

Yes--good luck! Let us know how you make out.

[Conor]

Hi everyone,

Finally feel strong enough to message today. With some news to share aswell. 

On Wednesday last week I got a biopsy done on one of the larger masses in my chest and they believe to have found the point of origination. My Thymus. 

After getting a chest tube inserted and waking up very high I was told they think it's Thymic Carcinoma. Although the stains aren't 100% conclusive. 

After staying in the hospital a few nights they removed my chest tube and let me go home. Although, they did it poorly and I developed subcutaneous emphysema in my chest. Which is quite painful and uncomfortable. 

I've been in bed resting and trying to gather the strength to still have hope these last few days. 

Today my doctor called, she is taking my stains to a cancer board in hopes they can help us finally definitively nail down the diagnosis, but that she's pretty certain it's thymic carcinoma. 

This is a nightmare for me as the prognosis for this type of cancer is horrible and is indeed, incurable. It's not very treatable and cancer doctor's all over the world still don't know much about it as it's only in 1 every 1 million people. And even less so in young people. Seems like I drew the short straw!

I'd like to thank you all for your kind messages and words of support. I'm going to stay the course and be strong for my family and indeed, fight. But I concede this is very sad. 

.c

[BridgetO]

Hi Conor, I'm so sorry to hear that your facing this difficult diagnosis. I wiah you all the best as you deal  with this. Please keep us informed and le us know how we can support you.

Bridget O

[Sally Lash]

Hey Conor, New to this site but I thought I could share my brothers story, might make you a bit more hopeful. He was 28 when he was diagnosed with an adolescent bladder cancer that had spread to his prostrate and spine. Since he was an adult with a juvenile cancer they couldn’t find a chemo protocol for him. He  was told they it was terminal. He fought to be in every trial available, pushed into a few that weren’t too, asked for every experimental drug, told them he would be their guinea pig just bring it on. His MSK doctors made up his chemo as they went. Nothing was working.  He was started on hospice care. Two weeks in he said he felt better, everyday after that he was getting better. Docs ordered a cat which showed shrinkage, surgery was now an option... long story short that was 30 yrs ago and he’s still a stubborn SOB but he’s here and happy. Sending you positive thoughts.

[MBinOregon]

Connor,

NOT that a diagnosis of LC is anything to cheer about, but this diagnosis of Thymic Carcinoma is daunting indeed.  What I CAN tell you is when I was diagnosed, they (various oncology nurses and docs) told me "but you're so young and healthy" (kinda funny even now since I was 44 then and didn't think I was "young"), so I'd like to say the same thing to you.  But you're so young and healthy, Connor.  You can do this.  I imagine given how rare it is, there may not be an online forum like this, so please feel free to hang out with us.  We may not know thymic carcinoma like we know lung cancer, but we're very good at supporting each other or if you ever just need to vent out loud, we all do that too.

From a former Burnaby, BC resident in the 90's 😉

MB

[GaryG]

Hi Connor. So sorry to hear about your results. I hope you find the strength and patience to deal with it. I hope the cancer board will have good news for you. I wish you the best.

[Rower Michelle]

Hi Conor,

We all share in the pain and devastation when receiving these diagnoses,  I am so sorry.  Early on I got some advice from another patient who also had a very rare cancer: hit Facebook.  Patients are self organizing to become experts in their own disease.   Oftentimes their knowledge surpasses the general oncologists.  
 

Remember with advances in today’s cancer treatment, anything is possible.  Please read this short essay by Stephen J Gould (written in 1982) about defying the odds:

https://pdfs.semanticscholar.org/c7c3/55f6d26c033e1f13df7d78b154aea0036cb1.pdf?_ga=2.192374442.1624406112.1608597988-468518503.1608597988
 

Of course you are welcome to hang out with us for ongoing support.  There’s always someone around.  
 

Michelle