I chose this forum as I thought you would be persons most informative that might be able to help me decide. Thank you.
Healthy wellness check/physical — except I showed doctor which she confirmed and is concerned about — slight swelling which has been sort of lengthwise above/atop of my left clavicle, also seems near throat area where clavicle ends there. Been there awhile — no pain — probably several months.
I did have COVID-19 2–3 years ago and recovered. (I mention since I know that it can persist in symptoms.) I also have a very strange laugh now — if I start laughing hard — the sound is very different from ever before. I have never smoked.
My doctor is recommending some type of scan — has suggested an ultrasound — and is open to what I share about which scan to do. I was wondering if an ultrasound, a CT, or one of those MRI body scans for cancer would be best — between all 3 — to diagnose or help diagnose — and most importantly to me, to determine whether it is cancer or not most efficiently. (Very long distance to places to get scans due to where I live — closest 2-hour round trip and a city which much more in medical offerings/services a 7-hour round trip.)
Thus, I'd like to get the scan most likely to at least and first determine whether it could be a type of cancer. Reading online, I certainly have read of both benign causes and serious. All other checks are clear for me during exam… only this swelling (and odd laugh now for months).
Wondering which scan to do at this point since subsequent scans will be difficult due to distance and life circumstances — so for a first scan, interested in your opinion as to which one might provide the most information (especially to rule out cancer as a cause or to let us know if we need to do more like biopsy… trying to avoid doing one type scan only to be told to go do a different type, for example.)
Thank you, in advance, for your opinion. Open to experiences/opinions/and any other suggestions I have not considered.
Reply # - October 8, 2024, 03:10 PM
Hi Bluebird, Welcome to…
Hi Bluebird, Welcome to GRACE. I'm sorry you're going through this scare and hope it's just inflammation or from an infection you didn't know you had.
A CT would be the most typical scan for looking at a suspicious lump above the clavicle. It's very possible a supraclavicular lymph node is swollen which may be why your doc wants it checked. Ask your doc about the reasoning in an ultrasound instead of a CT and why they prefer the ultrasound. There may be more to it than what we suppose. If there is still suspicion then a biopsy could be the next move. You said the larger hospitals are much further than the one you would go to so getting results and moving on to a biopsy on the same day may not be feasible for the center you go to but it's worth asking.
Make sure they understand the importance of doing as much per visit as possible. The larger centers are better than the smaller ones but it may just be an ask away. There are resources too that may help people with travel issues. There should be a social worker on duty at the scan center who can help with travel-related issues. Look for and ask for help in your area. Sometimes it takes some digging but resources exist that aren't always obvious. Once you hook onto a good one it becomes easier to work within our not as good as it needs to be system. I know this list of videos is long and most aren't relevant but there's tons of info that everyone should know, cancer or not.
It's often helpful if you go to your next visit with info in hand. Mayo clinic and Cleveland clinic have excellent online info about workups and diagnosing procedures. Copy or share those resources with your doc during your conversation. It's kind of like having a specialist quoting standard of care for very specific situations like swollen supraclavicular lymph nodes.
Keep us posted and don't hesitate to ask further questions.
Take care,
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.
Reply # - December 12, 2024, 08:10 PM
Thank you, Janine
So much winter preparation for us (I am caregiver for my elderly father), so am now having the ultrasound of neck done.
Swelling above clavicle still present, and a harder spot where thyroid is in front of my neck. Doctor says ultrasound first to see what we can learn and then CT if necessary. I agree. I have no other symptoms, it's just that swelling remains and now my thyroid area is more pronounced.
I've spent time reading from the Cleveland Clinic (and other resources). I just want to learn what this is (reading online makes me wonder about lung cancer, lymphoma, etc.). I have no other symptoms I can think of. Doctor did agree to have both orders to do both test at same time, however, due to expense, I will do one at a time. I think I will also travel and get more blood tests done - I've read there are tests which can indicate about such matters. I'm even thinking of doing the Galleri test - heard of it? It's an expense I have to think about - will consider after they tell me what this ultrasound shows.
Again, I want you to know I appreciated your reply. I'll have the results soon - in between snowstorms - am going to city - the order was written today (doctor waited upon my telling them I was ready to proceed). Had many activities to do - much came up - ready now and more concerned due to thyroid area being somewhat more pronounced. I just need to find out rather than wonder. The idea of a biopsy concerns me - would like to avoid if possible - that's why if they say it is any type tumor that needs investigation I am considering the various blood testing that might help.
Best wishes you, and thank you again for all the advice. I will call tomorrow to make appointment as they now have the doctor's order as I am ready to proceed.
Reply # - December 13, 2024, 06:28 PM
Hey Bluebird, I understand…
Hey Bluebird,
I understand being too busy taking care of business, but I'm glad you're moving forward with the workup on your own health. I know how much easier it is to say, "You must take care of yourself before you can take care of others," than to do so. Anybody who's lived long enough probably knows that. So I won't say it out of the context I've already put it in...maybe ;).
I'm not familiar with the Galleri test except for what I just read on Cleveland Clinics site. It's not FDA approved and not standard of care. A couple of points I'd make about that post is it reads like an advert. Note that it points out "false positive" results but not "false negative" results. I'd think a more standard path of diagnosis is best at this time; scans and biopsy. Maybe no biopsy will be needed but if scans determine cancer is suspected a tissue biopsy is the only path forward to a diagnosis.
Speaking from personal experience, my husband has spent the past year getting scans, 2 biopsies, and an endoscopic lavage looking at what looks just like the cancer he had 13 years ago. What last week's onc visit noted was some of the nodules had shrunk so it's not cancer and probably sarcoidosis (a much better diagnosis than cancer).
I hope you find support at the clinic you get your scans from. You have to ask for them. Unfortunately, you have to be proactive in this but you may find they provide life changing help with cost, travel, scheduling, learning about where to find the help you need, or that it even exists (rolling my eyes).
You're on the right path. Keep us posted.
Take care of your father AND you,
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.