34 and scared of pancoast tumor

lauren1390
Posts:3
Trying to live the best life possible.

I’m a 33, turning 34 next month healthy female- In the past 4 months my dr has been watching my bloodwork for a slightly elevated d dimer .55 and ha crp (1.7) as my husband and I were planning on starting a family soon. I’m on a more naturopathic blood thinning protocol and just got retested. D dimer came down to .52 ( still elevated beyond normal of .5) but hs crp has risen to 6.7. In the past 4 months I’ve noticed some scapula pain on my right side- sometimes if I take a deep breath- kinda feels like a ball is there/ or it’s pulled- I constantly want to massage/ dig at it with a lacrosse ball. I will go for a few weeks where when I swallow food I feel slight pain in the back- almost as if I have a piece of gravel in the back, pain goes away when I sit up and pull shoulder blades back ( it’s worse when I hunch at a computer). Now let me say.. I workout a lot, train in aerial circus ( where I do hang from 1 arm a lot) my traps and rhomboids are tight all the time- I’m also a photographer. Finally, I have been dealing with chronic costochondritis for 10 years with injury to t6-t7… the only difference here is I now have pain when swallowing , and pain behind the scapula when I take a super deep breath ( again pain comes and goes). Sometimes I wake up with numb hands ( sometimes one or both or the other) but usually it’s the pinky through middle if I’ve been sleeping on side. The sometimes back ache has me really worried- especially after reading about pancoast tumors and how the symptoms are scapula pain and how aggressive they can be- I had a chest x ray a year and a half Ago.,, I mean would it grow that fast?? I’m going insane since I saw the bloodwork and have to wait a week to see my dr ( bloodwork got sent to email) any comfort would help!

Lauren Scott

JanineT GRACE …
Posts: 622
GRACE Community Outreach Team

Hi Lauren,

 

Welcome to Grace.  I'm sorry you're going through this scare. It would be highly unlikely that you have a pancoast tumor. They are rare and usually found in older people who smoke or have smoked quite a bit throughout their lives.  Pancoast tumors have similar sounding pain as typical cervical spine issues.  I've had similar pain for most of my life.  When my husband started having pain from a pancoast tumor it sounded just like what I've been dealing with until it became evident that it was getting much worse than anything I get.  It is almost always an orthopedic problem when someone starts having these issues, especially someone who hangs by the arms doing aerial stuff.  I hope you can take this to heart and not worry so much, but I get it and hope it won't be long before you can find out those hoof beats are horses and not zebras (if you hear hoof beats your best guess is horses, not zebras).

 

Let us know how things go and best of luck,

Janine

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.

lauren1390
Posts: 3
Trying to live the best life possible.

Thanks Janine, I went to my naturopath on Friday and she wasn’t too concerned about blood- she thinks with someone who works out as much as me my body is showing more inflammation and I need to scale back… but she also noticed some lower levels of nutrients I need to bring up that she thinks is causing it- have no problem doing this and have already tried to integrate yoga, etc for a better mental state and recovery..

She doesn’t know about the shoulder pain and I had to press pretty hard and finally she agreed to a barium swallow- I just had a chest c ray 7/2022 so she said why put me through more radiation especially since I had it.

I do hope and am praying it goes away.. I know it’s rare and I’m really trying to believe I will be okay. It doesn’t help
I had a 35 year old friend last year get diagnosed with stage 4… never smoked.. so it’s just where my brain goes… I do have an chronic injury to t6-t7 so hoping it’s likely that.

Lauren Scott

JanineT GRACE …
Posts: 622
GRACE Community Outreach Team

Hi Lauren,  I'm sorry for the late response.  Glad that your naturopath thinks it's ortho and such, and hope you're doing better soon.  As a 64-year-old who had a very active lifestyle including tumbling, dance, and yoga, I've had cervical issues as long as I can remember.  The right yoga instructor might be helpful though the wrong one can make it worse.  You know your body, if it hurts after class, modify or change type of yoga. 

 

I'm so sorry to hear about your friend.  That's so very young.  If they have/had lung cancer it probably had a "driver" mutation that drove the cancer.  Unfortunately, while not the most common reason to get lung cancer when it does happen it's often a young'er person with no smoking history.  With pancoast tumors (my husband had one 13 years ago and how I found this org) the person most likely smoked for 20 plus years and is older, over 50.

 

If you'd like to return and let us know how you're doing we would love to have a good example of a pancoast scare like this resolved.

Best of luck,

Janine

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.

paulryan
Posts: 1

I can understand why you're feeling anxious about your health
It's essential to address these concerns with your healthcare provider as soon as possible to get a clear
understanding of what's happening.

Here are a few things to consider and discuss with your doctor during your appointment:

Detailed Symptom Description:
Make sure to describe your symptoms in detail to your doctor, including the location, nature, frequency,
and any factors that worsen or alleviate them. This information will help them assess your condition more
accurately.

Medical History Review:
Discuss your past medical history, including your previous chest X-ray and any other relevant tests or
procedures. Your doctor may need to review these results and compare them with your current symptoms and
bloodwork.

Concerns about Pancoast Tumors:
Express your concerns about Pancoast tumors to your doctor, especially given the symptoms you're
experiencing. While it's natural to consider various possibilities, it's essential not to jump to
conclusions without a thorough evaluation.

Follow-up Testing:
Your doctor may recommend further testing, such as additional imaging studies (CT scan, MRI) or
consultations with specialists, based on your symptoms and bloodwork results. These tests can provide more
information and help rule out any serious underlying conditions.

Managing Anxiety:
Waiting for medical appointments and test results can be stressful. Consider practicing relaxation
techniques, such as deep breathing exercises, mindfulness meditation, or engaging in activities that help
distract and calm your mind.

Remember that your doctor is there to support you and address your concerns. Open communication and
collaboration with them are crucial for getting the best possible care and finding answers to your health
questions.