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Talking about my cancer diagnosis


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To say I was shocked just over a month ago to read the radiologist report "1.5 cm spiculated nodule Right medial upper lobe" is an understatement.

Here is how everything transpired: I was having severe nausea and abdominal swelling for the past few months beginning at the end of last year. So my primary doc ordered an abdominal ultrasound. From that test I diagnosed with an infrarenal abdominal aortic aneurysm two months ago.

I was then referred to a vascular surgeon to evaluate the aneurysm and explain at what size surgery would be needed. To get another look before my appointment with the vascular surgeon my primary care doctor and I decided to order an abdominal CT scan to see if the aneurysm had grown any. As I thought more about the CT scan something told me to call my primary and have him to also order a Chest CT scan since I was feeling out of breath and had developed a chronic cough. I also wanted my entire aorta visualized. Thank God I have that kind of rapport with my doctors since I had worked 20 years in surgery as a technologist and first assistant. They usually listen to me. 

So the scans were ordered and I went to have them done two weeks ago. That's when I got the shock of my life with the finding that I also had that suspicious looking nodule in my right upper lung. My aneurysm, which is small still, now was the furthest thing from my mind. 

Now I had to make an appointment with a pulmonologist. As I sat there with this young, highly reputable pulmonary doc  hope found its renewal when my pulmonologist wanted to know if I had a screening CT done in the recent past?  I told her yes I had a low dose screening chest CT scan last October and it came back clean. She expressed some confidence that the nodule could be a benign inflammatory nodule because if it was a malignancy they would have seen something on the screening chest CT done 6 months ago. 

My pulmonologist, just to be vigilant, got a copy of the screening chest CT to confirm her confidence that we might not be dealing with lung cancer. Well, apparently the radiologist missed it because she seen the nodule which back in October was approximately 7-8 mm. Since it has doubled in size to 1.5 cm and has a starburst appearance it is most likely malignant. 

I felt anger and also a ton of shame. I've been a smoker for decades beginning this nasty habit during Army boot camp. I don't drink alcohol. I eat the very healthiest of foods. Lots of fish and vegetables. No fast food ever. No fried foods ever. Smoking is my one terrible vice. I wish I never had touched a nicotine stick. 

The thing is it feels no one in my family wants to talk about "lung cancer." My wife seems very stressed as well as my adult children. Everyone is avoiding any conversations about it that lasts more than a minute. 

I have my PET scan next Friday to see if it is in my lymphatic system or met anywhere else. My mind is swimming, consumed with concern day and night. My eldest sister died in January from liver failure. My youngest sister died at 50 from systemic lupus in 2018. Our 22 year old son died in 2015 in a motor vehicle accident. My Mom died 10 months later from kidney disease. My 25 year nephew had a tough 3 year battle with  brain cancer which he is in total remission.  Now this. I think that the thought of another loved being very sick or even dying has left my family she'll shocked. 

Still, I need them. I need them to listen to my fears. I need to figure out how to talk about it. Hopefully the PET scan will confirm it is Stage 1. Then surgery should be able to get it all out with a wedge resection or lobectomy. Can someone give me advice how to talk about this? Can someone else tell me about their early stage lung cancer? 

Thank you. 

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Hi Wayne 

Sorry to read about your terrible news and all the heartbreak over the years, trying to get your round cancer is very difficult but you will and so will your family, when I was diagnosed last August I went to pieces for a while but did get better once I started treatment I had radiotherapy and chemotherapy and the tumor shrunk and in the lymph nodes I thought everything was going well until the end of February I had a seizure and they found 2 brain mets which I had gamma knife radiosurgery done on 3 weeks ago I seem to be getting back to normal again now but it approx 3 weeks of really bad depression and no will to carry on, I have been very lucky my family have supported me through this but like you I know how hard it must have been for them to accept what is going on, please try and stay as strong and positive as possible and you will all get through this, I wish you all the best and goodluck take care 

Justin 

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Wayne, 

Welcome to the club nobody wants to be a member of. Other than caregivers everyone on the forum is a lung cancer survivor and across our spectrum we've had every kind of diagnosis and treatment.  We've also felt each and every emotion you described.  Fear, disbelief, pain over isolation, anxiety in waiting, etc.  So you can open up here as much as you want and we'll understand.  There are a couple of things I want to share with you

  1. Don't look to Dr. Google for prognosis data.  It's way off base for a number of reasons the least of which is that it is based on 5-year averages that don't reflect current treatments and outcomes.
  2. Take time to read this.  It is titled "10 Steps to Surviving Lung Cancer; from a Cancer Survivor.  It can be found here.
  3. Understanding the diagnostic process is very important, but difficult for us when we are newly diagnosed.  I'm providing a link to Lungevity's "Lung Cancer Diagnosis Page; "What to Ask Your Doctor" it can be found on this page:

This is a tough disease, but the number of people surviving will surprise you.  THere is little time for you to beat yourself up.  Approximately 1 out of 7 smokers get lung cancer, so smoking can surely be a contributor but a growing number of people (double digit percentage) who come down with Lung Cancer never smoked.  So it appears that all you need to get this disease are lungs.  I'm not saying smoking isn't a contributor, but beating ourselves up over the past does absolutely nothing to better secure our future.  I had quit smoking 16 years before my diagnosis in 2019.  I was staged at 1a (a CT Scan for kidney stones) and had a lower-right lobectomy.  Since then my multiple scans have been clear and NED (No Evidence of Disease).  Let's stay focused on getting you there as well.

Okay, you'll go for a PET Scan and that may or may not be conclusive of LC so the real gold standard will remain the biopsy and that will be the final word on malignancy or not.  But when a nodule grows the probability of it being benign is small.  So stay strong, you're not alone on this journey and give your family some time...you and they suffered losses and their love for you likely makes this a hard conversation.  Give them and yourself some Grace and let's stay focused on your treatment and achieving NED (No Evidence of Disease).

Lou

Edited by LouT
improve word clarity.
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Wayne,

I'll ratify Lou's suggestion: your focus ought to be on treatment means and methods, not on cause or prognosis.

How does one talk about a lung cancer diagnosis? I wouldn't know, but I can answer who your should interact with on that topic--us. We have 3 laser-like focus points: diagnosis, treatment and NED (no evidence of disease). And, we have a vast amount of knowledge in these domains; for productive discussions about lung cancer, stay connected with us.

Can I tell you about my early phase of diagnosis? Sure, in a word, mayhem! Fear, uncertainty and struggling to assimilate a new vocabulary were also challenging. And, I had to navigate this madness mostly alone because in my diagnostic days, nothing like this forum or our Foundation existed. Living in fear was disconcerting. Treatment failures complicated fear and uncertainty, so much so, that I needed treatment for severe depression.

Of course you need your family. They will want to know and want to help. But when you seek advice about treatment means or methods, rely on a pulmonologist, medical and or radiation oncologist or thoracic surgeon. When you want reliable and verifiable information on these topics, refer to Lung Cancer 101, here. When you need hope to counter uncertainty, then turn to us. We are the hope experts. For lung cancer survivors, hope is indeed a good thing.

Stay the course.

Tom

 

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Although I have the type of mutation-driven adenocarcinoma that is typical in non-smokers, my lung cancer is presumed to have been caused by post-9/11 toxic exposure. When I was first diagnosed at Stage IIIB (inoperable) in October 2019, I beat myself up about going back to work in Lower Manhattan in that environment. But as time went by and as I accepted my disease, I forgave myself for that decision. Things happen to us in life and it does no good to have regrets. 

As soon as I was diagnosed, I told everyone. I didn't have any knowledge about this disease and certainly didn't know about this forum. I basically was on my own during and after treatment (chemo and radiation and then targeted therapy). I went through some really tough times and only then found this site. We all know what you're going through. 

Knowledge is power in our case. You can learn a lot from this site and sites like GO2 Foundation, American Cancer Society and the American Lung Association. Lean on those resources. Lung cancer treatments have advanced in the last few years and Google isn't going to reflect that. 

I'm sure your family thinks of a lung cancer diagnosis as a death sentence, but that's not the case anymore. I live a pretty normal life and you can too. 

You may find the link below helpful for talking with your loved ones. Once you get your PET scan results things should start moving quickly. Let us know what your next steps are. 

https://www.cancer.org/treatment/understanding-your-diagnosis/telling-others-about-your-cancer.html

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Hi Wayne and welcome.  I'm sorry to hear about your diagnosis and the issues your family has had with injury, illness and death. I  had a stage 1 lung cancer found in a CT scan for something else. I had a lobectomy by VATS in 2016 and I've been NED since. You'll find others here with similar experience.

I really can't give any suggestions about talking to family about cancer. I have my spouse, but no other close family (either in relationships or distance. I've been completely open with friends and coworkers about my cancers (lung cancer was my 3rd primary) and others have been supportive. You might want to look at the Caregivers forum on this site to get some family points of view.

I wish you all the best. Hang in there and don't blame yourself. I was a never-smoker. Anybody with lungs can get lung cancer. It doesn't matter how you got it, what matters is what you do to deal with it. 

Bridget O

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