I had an ultrasound on my collarbone and neck because I have a lump on the collarbone. It showed a 2-5 millimeter mass behind the collarbone. I am going in for a CT scan on Thursday. I had someone mention it might be a pancoast tumor because of the location.
Does anyone know what should be seen if it is a pancoast tumor? Or what else it could be?
My symptoms are swelling around my neck, under the collarbone, swelling in my lymph nodes in my armpits, lump on collarbone. I have been having migraines and the feeling of an on coming migraine. I feel like my vision is weird. My eyes feel strained. I do have a history of migraines but one a year and now I’m having more. I do have numbness in my arm and hand when lying down. Sometimes when not. I also get that when my back or neck is out.
I guess I’m just looking for more information about the process of diagnosis and maybe what I can do to get a proper diagnosis.
Thank you in advance.
Reply # - January 10, 2023, 12:25 PM
Hi Roma Jean welcome to Grace. I hope your issue isn't cancer.
A diagnosis is made by looking at tissue (from a biopsy) under a microscope. Biopsies are normally done without complications but it is an invasive procedure and that area is complicated so you want to be sure there's reason to take a biopsy. Hence the CT. It sounds like they want to get a different view of the area. 5mm is very small about half as big as something doctors normally try to biopsy. You would need to speak with your doctor to know what they are thinking. There is a lot going on in that area making it difficult to see and possibly reach. If your doctor thinks it may be a pancoast tumor and wants to get a biopsy first get a consult with someone at a large teaching/research hospital with a lung cancer specialty. On a personal note, my husband's pancoast tumor was difficult to reach and went through many attempts before getting tissue for diagnosis. If he'd been seen by a specialist who sees a lot of pancoast tumors he may have had fewer problems at the start.
I'm sorry you're having this scare. Let us know if we can help, in fact let us know what is found, cancer or not. I vote for not cancer.
I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.
Reply # - January 10, 2023, 09:34 PM
I'm sorry to hear you're going through this.
One of the most important things to note is that not all lumps in our body are cancerous. In fact, statistically it's more likely to be something else. There are lymph nodes around your collarbone as well, called "supraclavicular lymph nodes", and they can become inflamed due to a host of non-cancerous reasons. You're doing the right thing getting it checked out, and I encourage you to stay optimistic.
However, I also know that no amount of reassurance can fully soothe your mind when it comes to this. The fear of the unknown is difficult to handle, and fear/anxiety of scans is perfectly normal. We actually did a video for a series a few months back related to handling the stress of scans for patients with cancer. While not completely applicable to your situation, it still provides good advice: get enough rest, exercise to relieve anxiety if possible, talk with loved ones, and do what you can to keep your mind from spiraling into the "what-ifs".
You can view that video here: https://www.youtube.com/watch?v=6n_iPJWcVSw
Please let us know how everything turns out. We'll all be thinking of you!
Reply # - January 11, 2023, 08:36 AM
Hi Roma Jean, and thank you so much for reaching out to GRACE. We're definitely here to support you and provide you with as much education as possible so that you can make the most informed decisions as you work with your doctors. As Maria mentioned, we have some videos that may help you along the way, so please take a look and let us know what else you would like some information about. We're all rooting for you, and, as Janine said, we all vote that your CT shows no cancer.
Executive Director of GRACE since 2017. Joined GRACE to ensure that all patients and caregivers are empowered to obtain equal access to education about treatment options.