Update - biopsy results

Mom2ThreeGirlsFL

So I went back to the ENT today as my biopsy results were in. I am back in limbo again with more testing and more waiting. My DR said that the mass at the base of my tongue that he took 5 pieces of tissue from definitely is NOT showing as normal or benign, but the pathology report did not show a definitive cancer either. The pathologist report says "reactive follicle hyperplasia" and not to rule out either rare T cell malignancy or Hodgkins lymphoma as they can often show up very similar in cells. The dr says that basically what he thinks it is, is that while he did get 5 samples of tissue, he literally just took pieces straight down one after the other on the mass. He was trying to limit the amount of "open spots" so to speak as my mass is the size of a very large walnut if not a little bigger he said. He said that its very possible and likely that the location he took the samples from just didn't have the cells to confirm a diagnosis or that he didn't go deep enough. He said that my mass was very difficult to get to as i have a small opening for my throat and a small mouth and the best way he could explain it was that the mass is almost underneath the base of my tongue where he almost coulldn't get to it. So now if i haven't confused you all - he wants to have a FNA or core biopsy done of 2 - 3 lymph nodes in my neck as those are the largest out of all the lymph nodes that lit up on the pet scan. The soonest our radiology place can even get me in is not for another 2 weeks on the 25th and then its another week of waiting for results again. He thinks that the ultrasound guided biopsy of the lymph nodes will hopefully have more localized cells and give us some answers. If that doesn't, then he said well have to go in and actually have lymph nodes removed completely to get a full picture. He told me that lymphomas can be very "finicky" when it comes to diagnosing them in pathology and sometimes those cells can literally be in one exact spot in a mass or lymph node and the rest of the lymph node not show anything or the mass. He did say that if the FNA biopsy comes back inconclusive, he would be sending me up to Tampa to Moffitt to have them continue the testing to see whats going on. He highly feels it is some kind of lymphoma. his biggest worry is the mass at the base of my tongue as it is so big and asymmetrical and crosses the midline into the right side. He said that if it were just a few lymph nodes he would say lets wait and see but between my symptoms (night sweats, itching, constant low grade fevers) and the tongue mass and the fact that 3 different areas of lymph nodes are showing activity that SOMETHING is going on and he wants to be aggressive about finding out what it is.

 

So here's to not cancer confirmed as of yet.. but a long wait which is torture!

MrsBD

Waiting

I'm sorry you have had to wait so long. The core biopsy wasn't painful for me and it told us what type of cancer I had. Once they know the type of cell, (squamous or another kind) it gives the doctors an idea of what they are dealing with and where to look. According to the findings so far, you may not even have cancer, but one of several other treatable conditions. Hang in there and think positively. You are in my prayers.

jim and i

Praying it is not cancer and

Praying it is not cancer and that an answer if found this next round of text.

Debbie

Sailor123

Hi,
Initially when my ENT

Hi,

Initially when my ENT examined me he said it was either a mass in my neck or a lymphoma of some sort.  I guess they can appear similiar in the original exam.  The cat scan confirmed the mass at the BOT for me and from there I had a biopsy.

Sorry its taking them so long to figure this out.  I think the waiting is the most difficult part of this whole process.  Are you holding up okay?  Is your husband helpful?

Good luck to you.  I wish they would rush things a bit for you.

wmc

Hurry up and wait........ That's the hardest.

But over all is doesn't sound too bad. REACTIVE LYMPHOID HYPERPLASIA is the benign and reversible enlargement of lymphoid tissue secondary to antigen stimulus. There was alot of the word benign which is very good. Keep the fath and try to keep your mind on other things, I know how hard that is and it's not going to happen. But try.......

Never forget you can always come here and vent or say just what's on your mind and that can help some. We're always open 24/7.

Bill

debbiejeanne

yes, the waiting is very hard

yes, the waiting is very hard on your nerves.  i will be praying that you get answers on the next round of tests and that it is not cancer.  we will be waiting to hear.

God bless you,

dj

avisemi

Praying that it isn't cancer

Praying that it isn't cancer and that they figure it out fast. We were dealing with scheduling issues too. We could not wait. It was torture to have to wait 2 weeks just for the appointment. A friend of ours who is a pediatric ER doctor told us to go to the emergency room and mention Dima's symptoms: fever, low blood pressure, etc  but she told us to say that he was also confused since this is one of the warning signs docs look for.

it worked for us. he got admitted and things went fast from there. We left the hospital with the diagnosis and the appointment with the oncologist to plan the chemo schedule.

 

hwt

avisemi said:

Praying that it isn't cancer

Praying that it isn't cancer and that they figure it out fast. We were dealing with scheduling issues too. We could not wait. It was torture to have to wait 2 weeks just for the appointment. A friend of ours who is a pediatric ER doctor told us to go to the emergency room and mention Dima's symptoms: fever, low blood pressure, etc  but she told us to say that he was also confused since this is one of the warning signs docs look for.

it worked for us. he got admitted and things went fast from there. We left the hospital with the diagnosis and the appointment with the oncologist to plan the chemo schedule.

 

Sorry for the wait

Unfortunately, your doctor says he wants to be aggressive but then says can't schedule you for two more weeks???? All the worry in the world won't change the final results so try not to waste energy on worry (I know easier said than done). I will pray for good results.

OrchidNancy

The waiting is the hardest part

It is such a feeling of being in limbo when you don't know. When my husband had his lymph node biopsied (it was removal of the largest one) they did a frozen section and had the preliminary results in 30 minutes (it was a Friday morning and final report came on Tuesday morning). I don't know if they can do that with a fine needle aspiration, but I'm suspecting not. I hope you're not having problems with swallowing or sleep apnea with the obstruction in your throat. Please be careful if you're on pain meds. When you're sleeping you may want to keep your head well elevated to keep your airway open. I hope they can get you in earlier and you get your answer much sooner than 2-3 weeks. Keep the faith.

Mom2ThreeGirlsFL

Another Update

So the results of my ultrasounded needle biopsy of my lymph nodes came back and again I'm stuck at a 'benign'/inconclusive diagnosis. I dont have the report in front of me right now but my ENT is really disappointed as he swore this would show something as of what's going on. So I have had a biopsy of the base of tongue mass and now a needle biopsy of 2 lymph nodes that the radiologist claimed to match up to the active ones on the PET scan and no diagnosis or confirmation of everything being all clear. My ENT is super concerned still because of this mass being so large. When i asked him exacly how large he showed me with his hands and i would say that easily the size of a large lemon if not bigger. The reason it's not blocking my breathing or anything is that only part of it sticks out in my throat, the rest of it is all intertwined with the actual muscles of the base of my tongue and part of it goes forward to my hyoid bone. He said that with my symptoms and the way the mass looks submucosal??? vs i think he said mucosal, basically he's almost positive it's not squamous cell carcinoma just from looking at it alone because he said there's no ulcerations or anything. He said he would be less concerned if it hadn't lit up so much on the PET scan but seeing how it did along with so many lymph nodes, he is worried. Although not too worried because he gave me the option of going to Moffitt now or having him do another biopsy of the BOT mass to see what results we get. So i opted for him to go ahead and do another biopsy but come to find out, he's only set at the hospital OR for 1 day a month (his other days are at the surgical center which is out of network with my insurance) which means I dont get this biopsy done until April 2nd. I also have had more hoarsness along now with enough swelling that is putting pressure on my eustacian tubes and causing fluid to block up - and nothing (tried a medrol dose pack, sudafed, claritin, flonase, etc) is clearing it and my hearing is dwindled down to a good 50% of my normal at least.

So he was going to put tubes in at the same time on april 2nd. After talking with my cousin who is a surgical oncologist in St. Louis, he highly reccomended that I go ahead and tell him I'd like to go to Moffitt. He said that i need a place that can do a better tissue diagnosis and that in his opinion it is not appropriate that he is making me wait another month after having 2 biopsies and no diagnosis. So i think my route is going to be to go ahead and ask that he refer me up to Moffitt after all - what are ya'll thoughts?

MrsBD

Mom2ThreeGirlsFL said:

Another Update

So the results of my ultrasounded needle biopsy of my lymph nodes came back and again I'm stuck at a 'benign'/inconclusive diagnosis. I dont have the report in front of me right now but my ENT is really disappointed as he swore this would show something as of what's going on. So I have had a biopsy of the base of tongue mass and now a needle biopsy of 2 lymph nodes that the radiologist claimed to match up to the active ones on the PET scan and no diagnosis or confirmation of everything being all clear. My ENT is super concerned still because of this mass being so large. When i asked him exacly how large he showed me with his hands and i would say that easily the size of a large lemon if not bigger. The reason it's not blocking my breathing or anything is that only part of it sticks out in my throat, the rest of it is all intertwined with the actual muscles of the base of my tongue and part of it goes forward to my hyoid bone. He said that with my symptoms and the way the mass looks submucosal??? vs i think he said mucosal, basically he's almost positive it's not squamous cell carcinoma just from looking at it alone because he said there's no ulcerations or anything. He said he would be less concerned if it hadn't lit up so much on the PET scan but seeing how it did along with so many lymph nodes, he is worried. Although not too worried because he gave me the option of going to Moffitt now or having him do another biopsy of the BOT mass to see what results we get. So i opted for him to go ahead and do another biopsy but come to find out, he's only set at the hospital OR for 1 day a month (his other days are at the surgical center which is out of network with my insurance) which means I dont get this biopsy done until April 2nd. I also have had more hoarsness along now with enough swelling that is putting pressure on my eustacian tubes and causing fluid to block up - and nothing (tried a medrol dose pack, sudafed, claritin, flonase, etc) is clearing it and my hearing is dwindled down to a good 50% of my normal at least.

So he was going to put tubes in at the same time on april 2nd. After talking with my cousin who is a surgical oncologist in St. Louis, he highly reccomended that I go ahead and tell him I'd like to go to Moffitt. He said that i need a place that can do a better tissue diagnosis and that in his opinion it is not appropriate that he is making me wait another month after having 2 biopsies and no diagnosis. So i think my route is going to be to go ahead and ask that he refer me up to Moffitt after all - what are ya'll thoughts?

Go somewhere else?

You have been waiting long enough. If you have the chance to go to a larger cancer center, you should. I was told BOT cancer is slow-growing, but you are experiencing problems now and they should be addressed for your peace of mind. I hope you find an answer soon.

debbiejeanne

Mom2ThreeGirlsFL said:

Another Update

So the results of my ultrasounded needle biopsy of my lymph nodes came back and again I'm stuck at a 'benign'/inconclusive diagnosis. I dont have the report in front of me right now but my ENT is really disappointed as he swore this would show something as of what's going on. So I have had a biopsy of the base of tongue mass and now a needle biopsy of 2 lymph nodes that the radiologist claimed to match up to the active ones on the PET scan and no diagnosis or confirmation of everything being all clear. My ENT is super concerned still because of this mass being so large. When i asked him exacly how large he showed me with his hands and i would say that easily the size of a large lemon if not bigger. The reason it's not blocking my breathing or anything is that only part of it sticks out in my throat, the rest of it is all intertwined with the actual muscles of the base of my tongue and part of it goes forward to my hyoid bone. He said that with my symptoms and the way the mass looks submucosal??? vs i think he said mucosal, basically he's almost positive it's not squamous cell carcinoma just from looking at it alone because he said there's no ulcerations or anything. He said he would be less concerned if it hadn't lit up so much on the PET scan but seeing how it did along with so many lymph nodes, he is worried. Although not too worried because he gave me the option of going to Moffitt now or having him do another biopsy of the BOT mass to see what results we get. So i opted for him to go ahead and do another biopsy but come to find out, he's only set at the hospital OR for 1 day a month (his other days are at the surgical center which is out of network with my insurance) which means I dont get this biopsy done until April 2nd. I also have had more hoarsness along now with enough swelling that is putting pressure on my eustacian tubes and causing fluid to block up - and nothing (tried a medrol dose pack, sudafed, claritin, flonase, etc) is clearing it and my hearing is dwindled down to a good 50% of my normal at least.

So he was going to put tubes in at the same time on april 2nd. After talking with my cousin who is a surgical oncologist in St. Louis, he highly reccomended that I go ahead and tell him I'd like to go to Moffitt. He said that i need a place that can do a better tissue diagnosis and that in his opinion it is not appropriate that he is making me wait another month after having 2 biopsies and no diagnosis. So i think my route is going to be to go ahead and ask that he refer me up to Moffitt after all - what are ya'll thoughts?

wow, that is unbelieveable! 

wow, that is unbelieveable!  i agree with your cousin, you should go to Moffitt.  I would not want to wait any longer if it were me.  Plus going to a bigger center, they may be able to do a more detailed biopsy.  I'd call them and make an appointment asap.  Wishing you the very best and praying for you also.  Please be sure to let us know what you decide.

God bless you,

dj

wmc

Mom2ThreeGirlsFL said:

Another Update

So the results of my ultrasounded needle biopsy of my lymph nodes came back and again I'm stuck at a 'benign'/inconclusive diagnosis. I dont have the report in front of me right now but my ENT is really disappointed as he swore this would show something as of what's going on. So I have had a biopsy of the base of tongue mass and now a needle biopsy of 2 lymph nodes that the radiologist claimed to match up to the active ones on the PET scan and no diagnosis or confirmation of everything being all clear. My ENT is super concerned still because of this mass being so large. When i asked him exacly how large he showed me with his hands and i would say that easily the size of a large lemon if not bigger. The reason it's not blocking my breathing or anything is that only part of it sticks out in my throat, the rest of it is all intertwined with the actual muscles of the base of my tongue and part of it goes forward to my hyoid bone. He said that with my symptoms and the way the mass looks submucosal??? vs i think he said mucosal, basically he's almost positive it's not squamous cell carcinoma just from looking at it alone because he said there's no ulcerations or anything. He said he would be less concerned if it hadn't lit up so much on the PET scan but seeing how it did along with so many lymph nodes, he is worried. Although not too worried because he gave me the option of going to Moffitt now or having him do another biopsy of the BOT mass to see what results we get. So i opted for him to go ahead and do another biopsy but come to find out, he's only set at the hospital OR for 1 day a month (his other days are at the surgical center which is out of network with my insurance) which means I dont get this biopsy done until April 2nd. I also have had more hoarsness along now with enough swelling that is putting pressure on my eustacian tubes and causing fluid to block up - and nothing (tried a medrol dose pack, sudafed, claritin, flonase, etc) is clearing it and my hearing is dwindled down to a good 50% of my normal at least.

So he was going to put tubes in at the same time on april 2nd. After talking with my cousin who is a surgical oncologist in St. Louis, he highly reccomended that I go ahead and tell him I'd like to go to Moffitt. He said that i need a place that can do a better tissue diagnosis and that in his opinion it is not appropriate that he is making me wait another month after having 2 biopsies and no diagnosis. So i think my route is going to be to go ahead and ask that he refer me up to Moffitt after all - what are ya'll thoughts?

I agree, get a second opinion.

Call your insurance and ask where else you can go for a second opinion that this is taking way too long.

Here is a link to the ranking of hospitals, check cancer and ENT both. Then you can call and see if they take your insurance and request a referral. http://health.usnews.com/best-hospitals/rankings . You might have to travel but it might be better. I have to go 215 miles to mine and had to go every two months for one year. It was up and back in same day and 12 hours, but it paied off.

Moffitt seams to be the higest ranked in Tampa area with in 200 miles. 

Well damn, the only good news is they can't comfirm it is, just wished they could confirm it is not. The waiting is the hardest thing to do. After I met with my surgen I had to wait 3 weeks to make sure I had not taken and asprin, motrin, so I wont bleed during surgery, and I had to stop loosing weight as well. I had to put a roll of quarters in my pocket to make weight.

Bill

Duggie88

Mom2

WOW........Sorry you have to go through all this. Sounds like you got them all scratching their heads. Just hang in there, I'm sure you want them to get it right. I had a mass at the base of my tongue which at first they thought was a cyst but discribed as a very odd looking one. After a CAT Scan and a biopsy that all cahnged.

I know it's tough but until they say that bad word it ain't the bad word. Stay positive and strong.

      Jeff

Mom2ThreeGirlsFL

So an appt is scheduled with

So an appt is scheduled with Dr. bello at Moffitt for the 18th. Originally they offered the 13th but too many factors between work home and kids wouldn't allow me to get up there that day but I figured the appt is still sooner than April 2nd and it's at the cancer center with a hematology/lymphoma specialist . I asked why they didn't want to put me with a head and neck specialist in general and they said since it looks like lymphoma that's who I should see and then she can consult with the other specialists there and I can be referred over as necessary. So at least I'm moving in the right direction.