Thursday we found a tumor at the base of my tongue. Friday I had PET and CT scans. This morning the ENT doctor told me the lymph nodes near the tumor are lighting enough to show some activity, but there is nothing conclusive with this. As for the tumor, he said it is clearly defined.

He said that he wants to bring me in to hospital for full set of biopsies that includes the tumor and surrounding areas. Also, he wants a visual look at the nearby areas such as windpipe. I will be under full anesthesia for this. He said he would like this to happen this week.

I asked, why not just biopsy the tumor in the office, see if it's cancer, and if it is, set up the other tests. He said he considered that, but he has seen a lot of these, and he is 99% certain this tumor is cancer. So it is better to do the biopsy in the hospital, look at it right away, and then I'll be right there if other biopsies are needed.

I also asked him if an oncologist should take care of this, and he said that oncologists usually refer this type of thing to someone like him to do. But that after the biopsies and visual exam, an oncologist would definitely take over.

So now my next step would be to see my primary care doctor to get pre-operation screening so I can be under anesthesia for this.

I'm freaking out, and I'd appreciate your thoughts about this.

Andrew,

You have every right to be "freaking out." This is a scary diagnosis and if it is cancer, you are in for a rough ride. That being said, right now the best thing for you to do is take a big deep breath and take the first step which is putting things in place to get that biopsy. If the biopsy is positive....mentally, the next 2-4 weeks will be the worst for you stress-wise as it will be filled with numerous appointments and tests and measurements. You just make those appointments, one day at a time, and pretty soon you will have a treatment plan in place. Once you start treatment, you will feel more in control of your destiny.

It sounds as though the ENT is being thorough. An oncologist, armed with your biopsy reports and specimens will then be able to carry forward with a treatment plan (in your case, it will probably be two oncologists...medical and radiologist.

You might consider a second opinion at a Comprehensive Cancer Center H&N Department. You will still need those biopsies..so get going on the first step.

Good luck!

Andrew,

Go back and read again the "Draft Copy" in the Getting through it project forum. This way you can get familiar with the biopsy and what lies ahead. As Deb said, the next 2-4 weeks will be busy for you in appointments and gathering information.

My ENT also took me to the operating table to do my biopsy. He told me it was better for him to get a good look around in there and down my throat. It appears to be standard procedure. After the biopsy a plan will be developed for treatment.

Keep us updated as we are here for you and will guide you along. Posting and questions or concerns.

Andrew,

From whay you have said, your ENT is a smart person. Biopsys are needed for sure. But the cool thing is that he or she is willing to let the OC look at this and not always want to operate first. An ENT that looks at your best interest first, is a good thing. Scary as hell? You bet. We have all been there. It will be ok though. One day at a time. It will be fine. We are all here if you need anything.

Andrew,

What type of doctor is the one saying he wants to do the bio? I didn't let anyone put me under that wasn't employed by a CCC. In my case that was Moffitt. I had a FNA by an ENT but that was nothing more than a needle prick and 2 weeks of agony waiting for the results.

Be sure that you have an agreement with him that regardless of what he finds, that he is to take small biopsy samples only. You don't want to wake up with some significant part of your anatomy gone. Surgeons routinely think that surgery is the only solution to things, but where this is located, surgery may not be your best course of treatment. Many of us here were dealt with using only radiation and chemo. Or surgery was reserved for things like a neck dissection and not removal of the primary lesion. In the end you want to have your treatment planned by a tumor board made up of doctors from at least three different disciplines, surgery, radiation and chemo. You want you plan to be thought through by all of them and them implemented in a comprehensive cancer center.

My ENT had me come in to an outpatient surgical center for a biopsy of the base of tongue tumor, and a fine needle biopsy of the lymph node. Went home an hour later, with appointment at the nearest CCC. It was then that I was scheduled for the bilateral neck dissection. They did not resect my base of tongue tumor -- it was treated exclusively with radiation/chemo (referred to as "definitive radiation").

This is basically to highlight Brian's points. I still see the surgical oncologist, radiation oncologist and medical oncologist on a regular basis for follow ups. The team approach is key.

Thanks to everyone for your replies. The information is very helpful, and it is nice to not be alone in all of this.

Brian and Jeff. I spoke with the doctor who is doing the biopsy, and he assured me that he is only doing a biopsy of the tumor and some small samples of the adjacent areas. He assured me that he is not removing the tumor, and he added that it would not be an appropriate treatment anyway. But he also said that if he discovers other tumors he will sample them too.

Didn't want to freak you out, but wanted to be sure there were no gray areas in your agreement and understanding of things.

[quote=Brian Hill]Didn't want to freak you out, but wanted to be sure there were no gray areas in your agreement and understanding of things. [/quote]No problem. I was thinking about this anyway, and you underscored its importance. I'm glad you did.

I had the biopsy Friday and it was reviewed right away. It's squamous cell carcinoma. I have an appointment with an oncologist on Monday afternoon. I'm trying to make a list of questions for the doctor, but I keep spacing out.

Not sure what else to say, or what to ask.

Well,this confirms what the doctors have suspected. I know finally, actually hearing the words is shocking, depressing, and overwhelming. If you are feeling anything less, you would not be normal. Hopefully this is where your last ten days of planning and information gathering is going to pay off, as it helps you get right into the treatment process with many of your options already sorted out in your mind.

Please know that all of us here will be with you for the next few months as you go through the process. I hope you get a sense that the people posting here have not only been through the emotional, but the physical challenges before you you. But more than that, what I want you to take away from that knowledge, is that it is a passable path. Were still here after all the crap. With determination, good doctors, and a bit of luck, you too one day will look back at this in your rearview mirror.

Keep the faith. Try to stay positive even though there will be overwhelming times when it is not possible to stay out of the dark place. Deal with each day and don't worry about the next. Take them and the challenges one at a time. We'll be here when the questions arise or the desire to vent presents itself.

Hang in there Andrew and bring a tape recorder or someone who can take detailed notes. Many decision trees will be thrown at you very quickly.

What you can expect now are a lot of tests. Differential blood work, creatinine clearance (kidney function), PET or PET/CT, MRI, Chest X-ray, Hearing (audiology test) TSH level baseline test, etc., possibly an HCV and even an HPV test as well.

If you are not at a comprehensive cancer center I would highly recommend one. Fighting cancer requires a coordinated teamwork approach.

A guestimate on your staging (TXMXNX or TMN) would be very useful for making decisions as well.

You should also be seeing a radiation oncologist.

Make an emergency appointment with your dentist immediately and get all of your minor repairs, etc. done now. Your dental health is very important during and after treatment. Having dental trays would be very useful as well (for in home flouride treatments).