How do you handle the emotional rollercoaster??

[jd2b2001]

I am 47 years old and underwent a CT scan of my abdomen for some stomach issues. A 1.4 cm nodule in the right lower lobe of my lung was found. A CT with contrast read this to be spiculated. Pulmonologist said he wasn't convinced it was spiculated and ordered a PET/CT scan. The impression was solitary small low-attenuation nonspiculated pulmonary nodule of the right lower lobe, displaying mild hypermetabolic radiotracer uptake (average SUV measurement of 2.1), accompanied by two low-attenuation lymph nodes along the subcarinal and right hilar nodal chains, displaying moderate hypermetabolic radiotracer uptake (reaching average SUV measurement of 5.7 and 6.5, respectively), collectively reflecting the "flip-flop fungus" sign, highly suggestive of chronic histoplasmosis. I thought this is great news! I just received my results from the histoplasmosis testing and they were negative. Now I am sitting and waiting for the doctor to get back to me with the next step. If it is cancer I just want to start planning for what the future holds and the unknown is eating me up inside. Any advise?

[TJM]

Dang. Waiting is so hard, especially in the beginning. Let's see what your docs say and go from there. Tho you are unique as a potential cancer patient, you aren't alone. This board will give you a wealth of insight.

Let us know what the results are and we will share as much as we can. Still very possible you dont have cancer...so focus on that.

If you do have cancer it will get much easier mentally once you have a plan. At least it did for me.

Peace

Tom

[LouT]

Welcome to our forum.  Wow, do we understand how hard it is to go through the discovery of potential cancer and then the diagnostic process.  It is always a tough time, but there is a lot of support here as we have all experienced what you are now going through.  When I was still going through my diagnostic process I was in full-blown panic.  i was sure I was going to die and the world became a very dark place for me.  I'll give you the advice that folks here gave me to get a grip on myself:

1. Stay away from "Dr. Google".  Studies posted online are 5-year averages and are heavily weighted in favor of past treatments, not really taking into account the many advances made in the last few years alone.

2. Take this process one step at a time.  Yes, there is a chance that you have cancer, but until that diagnosis is final put it aside in your mind.  I understand how hard this is to do, but I worked hard on focusing on the day I was living, the people in my life and things I had to do.  You cannot change the outcome of the diagnosis regardless of how much you worry and "catastrophize" the situation, so please calm down.

3.  Read through what others here have posted and learn a bit about their experiences.  I was diagnosed in April 2019, had surgery on May 2 2019 and have been NED (No Evidence of Disease) since that time.  You'll read about many survivors and success stories.  You'll learn that there is hope and more than a good chance that your worst fear is unwarranted.

4. Ask questions on anything you want to know.  There is a wide diversity of experience here and someone can always relate to what they've lived through.  We are not doctors and will not try to diagnose or recommend treatment for you, but we'll share experiences and tell you when we believe you need to speak to your doctor or maybe even get a second opinion.

5.  Life is what we all value here and right now you have life.  So, go through your day with all the joy you can.  Perhaps hard days are coming, we don't know, but until then live your life fully and know that we'll be here to support you along the way.

Good luck to you,

Lou

[LexieCat]

With a nodule that size, and ambiguous PET-CT results, I wouldn't be surprised if they want you to sit tight for now and come back for a re-scan in a few (3-4) months. It might be too small to biopsy. The vast majority of nodules are not cancer, but rather inflammation, scar tissue, etc. And inflammation can also cause FDG uptake.

I was in a lung cancer screening program, and when my nodules were first discovered they had me come back in three months. With no changes, they had me come back in a year. By then the one nodule had increased in size and was decidedly spiculated. Even without a biopsy, they recommended surgery and it was found to be very early stage adenocarcinoma.

I needed no followup treatment then, but got regular scans and three years later, it turned out I had a new, Stage IV diagnosis. None of my doctors can say whether the "new" cancer is a spread from the original or something entirely separate. I'm now doing chemo/immunotherapy and have had an amazingly good response. There are Stage IV people here 15-20 years out. Even though I get nervous before a new scan, I figure there's no reason not to think I'll be one of those long-term survivors.

 

[jd2b2001]

Thank you everyone for the words of encouragement.  The latest update.... I saw the thoracic surgeon yesterday.  He told me there was certainly activity on the PET scan and therefore he will be doing a biopsy of the lymph nodes next week.  If they are cancer he will be putting me on aggressive chemo and remove the lung nodule at a later date.  If they are not cancer he will be performing a VATS procedure that day to remove the nodule.  I was told worse case scenario I am stage III and best case scenario it's nothing.  I can't eat or sleep and just need to get answers.  A week feels like an eternity at this point.  Despite the fact that I just had the PET scan on 12/24 and had a physical exam yesterday I feel like all my lymph nodes are swollen and this is actually stage IV.  I  really need to do something to get out of my own head at this point....

 

Sorry about the rant.  

[BridgetO]

Ranting is OK here. We're here to support you and we've all been in a place with this disease where ranting is what we need to do. When you get some answers, things will probably start to seem a little easier. You might ask your surgeon for a short term prescription  for something to help you relax/sleep for the next few days. 

I'd like to suggest one thing about yoru upcoming biopsy. It's important that if your biopsy shows cancer, a tissue sample needs to be sent out for biomarker testing. This will help determine whether you're a candidate for immunotherapy or targeted therapy. Here's where you can find some information about this. https://lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer.

Hang in there!  You can get through this.

Bridget O

[LUNGevityKristin]

I'm sorry you are finding yourself here.  You are always welcome to rant, we are here for you.  Here is a little more information about the steps and test that lead to a diagnosis.  https://lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer

Please keep us updated and feel free to ask a million questions!