Just diagnosed...surgery is next week to remove tumor... tumor came along with lobular tumors... If i remeber what the doctor said they are a part of the the tumor not extra tuors... my question is what is the % of these tumors that are malignent... or are they called tumors because the doctor knowsit is malignent... in the stun of finding all this out just this past Monday and being sent to my cardiologist today to get clearance for immediate surgery... did i miss something or will the surgery be biopsied and then i will be told if it was cancerous or is a given it is...?

Welcome, you've come to the right place for answers and support. Many here are more knowledgable than I but, it sounds like the tumor has not yet been biopsied? A tumor is not automatically cancer, only a biopsy can tell if it is, Best to you, hoping for good results.

Thank you... this is happening so fast... i just left my cardiologist's office who cleared me for what the ENT Surgeon refered to as "immediate surgery for removal the tumor", not a biopsy... There has been no biopsy taken... just a scope through the nose...i am guessing the mere size, and the lobular(sp)tumors now clearly visible by simply opening my mouth and saying ahhh, and how fast they appeared and have grown may be the reason for the doctors "immediate surgery" request... After many years of experience isn't there a visual sense and high percentage observation of what the doctor is dealing with and the Biopsy is just a 100% reassurance...

Given the timeline and events you describe it seems that indeed they are removing a tumor and since you have not had any tissue biopsy or scans, then I am certain that tumor is going to pathology for a biopsy. The results of that procedure will direct the next steps.

There is nothing you can do until the results come back so please try as hard as you can to not let your mind get all twisted up with is it, is it not cancer. You just need to sit still, don't read any random stuff on the Internet unless you must and then make CERTAIN you go to authoritative sites such as this one, American Cancer Society, or many of the pr4ominent medical institutions such as Memorial Sloane Ketteering, MD Anderson, UCSF, UCLA, etc. Do NOT ready any thing else.

Good luck... Now go play golf.

don

I don't know where you are going for treatment, but you should quickly get a second opinion at a cancer center that has a tumor board. If it's important enough to schedule surgery in a week, they can schedule a biopsy in a day or two. Ask for one and more of an explanation of what is going on.

Did you get a CT or PET scan or just a scope?

I only find one occurance of 'lobular' in these forums and it's referring to breast cancer as are most of the hits i get on google.

It migh be talking about "lobular capillary hemangioma of the tongue."

thanks Don...teeing it up tomorrow... Joe

thank you for the advise on a second opinion... well noted...
the lobular tumors are a for sake of better wording a pimple that grows out of the tumor... they are a contiguous part of the base tongue tumor as we understood the doctor to say...
though i have had this nagging cough and feeling something was stuck in my throat... they were not there two weks ago... now they have the avula at a forty five degree angle and are occupying 65% of my throat opening and appear to be getting bigger each day... the sensation of their presence was nagging before not it is borderline aggrevation... i am in aconstant gag sensation mode...

Just because it is called a tumor does not mean its cancerous. Im hoping this turns out to be benign. Best wishes with your surgery!

seems ur doc is moving pretty fast. a second opinion is always a good thing. I wish u the best and will be praying that its not cancer.

debbiejeanne

they established today that it is cancerous tumor... they biopsied and are only waiting to find out if it Lymphoma or Squamosh Cell... there is fluid in the lymph gland which tilts it towards Squamosh... the pathology report is due back Thursday... Monday surgery was cancelled as the type of cancer will determine treatment... Squamosh could mean major surgery... Lymphoma might be Chemo and radiation only... the waiting is the hardest part....

ur so right, the waiting is the hardest part. i wish u the very best.
debbiejeanne

They do chemoradiation for BOT SCC too. I assume they will check for HPV if SCC. Good luck on Thursday.

Ask them specifically to check for HPV status. It's a very good thing to know.
We are here for you and have all been where you are. Take it one day at a time and come here for support.
Unfortunately, welcome to the family!
Kathy

Just to let you know, I had squamous cell carcinoma (SCC) on the Base of my tongue (BOT) that had metastisized to my lymph nodes and i only had chemo/rads. No surgery.

My husband was diagnosed with scc base of tongue cancer. He received radiation and two sessions of chemo. His first post-treatment CT scan shows that the cancer is gone. Hope this helps to reassure you.

Same here, Stage IV BOT only (as in THAT's ENOUGH) chemo rad and that was 7 years ago.

That's the norm unless it's a tonsil or something then they often go in and remove it for some reason. ;o)

Hello Terry and the Group,

I was diagnosed the 1st week of April this year with stage 4 Base Tongue SQC... would have never known I had it if not for two lobular tumors that floated from the mother ship tumor up in to my throat cavity visible enough and large enough to be photographed ay 1stwith a camera phone...

The main tumor and its two cling ons were removed on May 1, along with a double dissection to remove the lymph nodes on both sides... one side, the same side the mother ship tumor was on, had malignant nodes, had three very angry nodes,one which had grown to a point it was ready to burst or at least split so that there would have been a nasty clean up job...

after about three weeks of recovery from the surgery I began 30 days of radiation and 6 equally split chemo treatments to coincide with the 5 day week of radiation...

During the first weeks I experienced a brush with thrush and it was a precursor of the throat inflammation to come.

During the fourth week I also experienced a day where my fever spiked and my platelet count / neutrophil and a few other key indicators led to a postponement of my 4th chemo treatment... that day I was scheduled to have chemo I instead was admitted so the doctors could watch to see if the fever spikes, all around 100.5 to 103.could be controlled by a battery of antibiotics...

the fevers eventually subsided by the 8th day I was in the hospital and I was sent home without a definitive explanation for the fevers except that the body was not tolerating at that point the cysplatin and I was sent home to rest and see what the next week brought...

I did not miss a beat on the radiation and while I was experiencing the external "sun burn" and related sores and the expected internal sores and inflammation in my base throat and sinus drain area...my numbers were sufficient enough to have another go at the chemo treatment... I might add I had experienced each week the usual fatigue and hard sleep expected after the chemo treatments and other than the fever nothing else was abnormal...

We tried in late week five of six radiation treatments to catch up one more chemo treatment... it seemed to go well on the Thursday but by Friday evening I was spiking fevers again this time in the 102.5 to 103.5 range... I spent another 8 days of watching and trying antibiotics to control the fevers... with much the same results... I finished my radiation treatments and it was decided to pass the last chemo day although note that if you are tolerating the Chemo, its job is to pump up the radiation effect...

I am now at home one week ot from all treatments other the a regin of every other day of hydration to assure my numbers return and / or stay in the common zone...

I am experiencing the usual dry mouth and mucous that comes on with the radiation and chemo treatment and since you stay hot with radiation for 3-5 weeks, I am doing the same things I did while receiving treatments and will wait until I cool off enough to get the Pet scans and test to see what was accomplished... I would not have changed the course of treatments one bit... I feel that the staff at the university Hospital that I am going to are top notch and noted nationally for their success and procedures...

the tumors were removed by a robotic procedure, in the reserved time of 6-10 hours allowed for such a comprehensive surgery... I was fortunate in that my tumor was ecotopic (sp) tumor (growing outward) not endotopic (sp) that grows into the muscle...

and I am PHV positive all in my favor...

when I asked the question you're, basically a root cause... I was assured that this SQC base tongue tumor is almost epidemic in men in their 60-70's.

I am a non smoker, was casual drinker, beer mostly and had no family history...

Good luck and keep searching, while I wanted to search, luckily I was placed in the hands of the best in the nation for the procedures needed and I have only had that confirmed throughout the process...

Joe E

Congrats on finishing your treatments.

Now onto the next phase, recovery! In a short time you should begin to feel a little better. For most patients around the 3rd week after finishing rads is when they first begin to feel somewhat human again.

Keep up the good nutrition and hydration for at least the first year after finishing radiation. A complete recovery takes most patients an entire 2 years. It can be full of ups and downs so try to keep that in mind when you experience setbacks. Its all part of the recovery process which for most of us can never happen quickly enough.

I did find it a bit unusual for your medical staff to say OC is becoming epidemic in men in their 60s-70s. It seems to be more younger HPV+ patients are being diagnosed than the older patients. But thats what I have seen here on the forum which may or may not be an accurate picture.

Best wishes with your recovery!

Considering everything you are doing what's expected. Do try and consume 3000 cals and 48 osz of water each and every day. Most of us had our worse few weeks post Tx so just in case be prepared if you experience this. The recovery period can last every bit of 2 years so also be prepared for that.

Re the root ?, your cancer was HPV+ meaning the virus was able to take control of your cells and turn them to the dark side. HPV is labeled a STD, sexually transmitted disease. It's extremely contagious and just about all sexually active men and women acquire it throughout their lifetime. It's proven that most of us "clear" it fairly quickly and most of us reacquire it and clear it and reacquire it and...you get the point. What the scientific community hasn't figured out is why the virus only causes oral cancer sometimes. So far the treatment is similar to oral cancer that is HPV- (negative), i.e., surgery, radiation and chemo but since HPV+ oral cancer has been proven to respond better to the Tx than HPV- cancers there are studies to determine if less treatment can achieve the same results.