Do I accept a doctors diagnosis that it "most likely" isn't cancer or push for more tests and a defi

jcall

Hi Everyone,

I've been reading the forum for a few weeks and decided I should join and ask for advise. About a month ago I felt a lump inside my lower left cheek. It's not easily seen or visible when looking inside my mouth but I can feel it and if I stretch my cheek somewhat you can clearly see it.  I pointed it out to my dentist, she said , yes she notices something but its not firm or hard and it's not typical of how oral cancer presents and it's not SCC because the tissue is completely normal looking. She sent me to an Oral Surgeon who basically said the same thing, asked the oral surgeon about a biopsy and his response was there's nothing specific to biopsy. I decided to go to an ENT for another opinion. She agreed with me that there is something there. SHe said there is a small movable oval lump. She also said that it's not uncommon for there to be differences between the right and left cheeks, that we're not perfectly cemetrical. She sent me for a CT (MRI got denied by Ins) and the CT report says "there is prominent soft tissue identified which is slightly asymmetric with the contralateral side. This is nonspecific."

My ENT said a biopsy would be benifical and refered me to a Head and Neck Surgical Oncologist, who I finally got to see today. He reviewed the CT and spent a good amount of time feeling around inside my cheek and initially said he didn't feel a significant lump. I pulled my cheek out and pointed out the lump. He spent about a minute looking at and feeling the lump and said it's probably nothing, not typical of cancer but would order an MRI. I asked about an ultrasound guided biopsy, his response was I can't just stick a needle in the cheek, he needs the MRI to see whats going on. The Oncologist said that he could perform surgery to try and remove whatever is there but thats risky with the nerves and blood vessels in the cheek and could cause permanant damage and doesn't really want to go that route at this point.  

So after reading an abundance of really scary information online about H&N cancer and reading the great advise that everyone on this forum provides, my question is at what point to accept that the lump most likely isn't cancer from the doctors but not getting a definitive answer about what it is. I've read that a biopsy is the only way to know for sure and even that isn't 100%.  I went to the Oncologist hoping for more definitive answers and walked away feeling very uneasy about the visit.  To me it doesn't look or feel right, maybe I'm just being paranoid but my biggest concern is going with a "wait and see what becomes of the lump" attitude could be costly.

Thank you in advance for taking the time to read my post and provide any feedback.

 

 

CivilMatt

welcome to the jungle

jcall,

welcome to the H&N forum, where my biopsy came back positive for scc.

If everyone says it is not cancer, then it is probably not.  Lot of good that does for your peace of mind.

Baring a definitive biopsy you are S.O.L. and will need to watch it and if you turn 100 years old, it probably wasn’t cancer.

Good luck,

Matt

LiseA

Get another opinion. I wasted

Get another opinion. I wasted time from May to September 2015 wondering and asking my periodontist if the lymph node that was swollen had anything to do with an ulcer in my gum. Came to MDA and guess what? Cancer!  Had surgery and just finished radiation. 

jcall

CivilMatt said:

welcome to the jungle

jcall,

welcome to the H&N forum, where my biopsy came back positive for scc.

If everyone says it is not cancer, then it is probably not.  Lot of good that does for your peace of mind.

Baring a definitive biopsy you are S.O.L. and will need to watch it and if you turn 100 years old, it probably wasn’t cancer.

Good luck,

Matt

Not much peace of mind

Hi Matt and thanks for your response. When I can see and feel something that doesn't look like it should be there it leaves me very uneasy. I've tried to have a biopsy done by the ENT and Oncologist today but neither would do it.

Unfortunately I don't think my genetics will allow me to see 100, I'm hoping for 70 and praying what I found in my cheek is really nothing.

CivilMatt

welcome again

call,

A CT or MRI may see something there, but whether it is cancer or not may not be possible with these scans.  Even a PET will show activity, but not identify the object.  Even a FNB is not always accurate.

Having surgery to find out can be dangerous, as you were told.  A wait-and-see stance may be the best.

Also as suggested, a 2^nd or 3^rd opinion may be warranted.

Matt

jcall

LiseA said:

Get another opinion. I wasted

Get another opinion. I wasted time from May to September 2015 wondering and asking my periodontist if the lymph node that was swollen had anything to do with an ulcer in my gum. Came to MDA and guess what? Cancer!  Had surgery and just finished radiation. 

Thats what I'm thinking also

Hi LiseA, Thanks for the feedback. Even before meeting the Oncologist today , I was thinking about where to go for a second opinion.

I was hoping that seeing the director of Head and Neck Surgical Oncology at one of the better cancer centers in the state would have been less open ended about whats inside my cheek. I'll have the MRI done and see if that shows anything more. I'm in NJ and thinking about contacting UPenn for a second opinion, which I understand is highly rated for H&N. 

jcall

CivilMatt said:

welcome again

call,

A CT or MRI may see something there, but whether it is cancer or not may not be possible with these scans.  Even a PET will show activity, but not identify the object.  Even a FNB is not always accurate.

Having surgery to find out can be dangerous, as you were told.  A wait-and-see stance may be the best.

Also as suggested, a 2^nd or 3^rd opinion may be warranted.

Matt

Agreed with all of your comments

Hi Matt , thank you once again..  I'll have the MRI and see what the Oncologist says and also setup a 2nd opinion just to be safe.I'm not crazy about having the contract medium for MRI but I guess its needed.

LIke I said to LiseA I'm thinking about trying to see someone at UPenn since they're pretty close and highly rated for Head & Neck.