Hi Forum, I am joining the club.

I was diagnosed SCC of the tongue recently. The tumor is quite big. They will remove most of tongue and re-construct.

As I have periodontal problems for a long time ( maybe one reason I got SCC) , almost all of my teeth will be removed during the surgery.

The dentist suggested that two implants be put in at the surgery time. Those two implants will be used for complete denture at later stage

the implants are not covered by my insurance. The dentist said there is 1% of risk that didn't work

After surgery , I will go through radiation. New denture can only be fitted after 6 months.

so I will be without teeth for a long time.

any comments regarding implants , treatment sequence welcome

Michael

Welcome to OCF! Im glad you have found our group. We can help you with info and support.

Losing your teeth is a big deal. Ive been without teeth due to radiation damage. Its not easy to eat at all!!! Going into the treatment you described for oral cancer (OC) means unfortunately you will have eating difficulties for at least 6 months until you can have your implants. Have your doctors discussed a feeding tube? If not I suggest asking about it. I suggest eating all your favorites now. The last thing you want is to go into this with cravings and not be able to eat what you want. As you will find out, intake is a huge part of getting thru your upcoming treatments (and I can be a nag about it... for your own good ).

A couple other pointers. Make sure your doctors order a complete blood count including testosterone and thyroid prior to any treatment. When you tell people about your OC and they offer to help or ask what you need, tell them when the time comes you will let them know. What you will be going thru is not easy and you will need help even if its to drive you to your treatments. Write down their contact info and make a list. Whoever will be helping you during your treatments and recovery needs to be aware of this list and know to call the people on it. I know its not easy thinking about being dependent on others but for almost all of us here, its a necessity.

Best wishes with everything!!! We're here to help and understand everything you are dealing with.

Thanks Christine,

Yes, the doctors will attach a feeding tube after operation for two weeks.

The implants will be installed at the same time during surgery if I want those implants. also they will pull out teeth to avoid radiation complications.

I am worried about the implants because the possible risk ( low risk according to dentist), dentists like implants as it will improve quality of life. The dentist suggested that the implants be put in an area less radiated

it is a very big surgery , they will clear the lymph nodes as well. I wonder I will ever withstand it

I have been on this forum ever since I realized my tumor is dangerous

there are lots of discussion here prepared me for the cruel reality.

Thanks again

Michael

Michael, Im thinking of how this would be the easiest on you. I suggest you may want to hang onto the feeding tube until you are completely finished with all of your treatments. Most patients are pretty sore after having the feeding tube surgically placed. Its no picnic having it removed either. Im just thinking, it does no harm in keeping it for a couple extra months. You probably will need it if you end up going thru rads after the big surgery. It doesnt make sense to have it for only 2 weeks then to end up needing it again a couple months later.

Im wondering why the delay to get your feeding tube. Im pretty sure you will need this during the time your in the hospital for surgery and when you're trying to recover after surgery. It could be done at the same time as your other surgery while you are already under sedation.

It might be a good idea to ask your gastro doc and other doctors/oncologists about the points I mentioned above.

Hi Christine,

I met the dietitian yesterday, as I already lost 10kg.
PEG will be inserted in a couple of days. Surgery will follow, then Radiation. The surgeon told me that they will evaluate whether Chemo needed or not after surgery
I will try to keep the PEG as long as possible as you suggested.
I am going to chat with a radiation oncologist soon, as I am trying to understand the radiation methods

Thanks again

Michael

Michael,

10kg is almost 25 lbs, that’s a lot. I’m glad you’re getting the PEG soon. Is the dietitian suggesting a high calorie supplement to help you make up for the weight loss?

Michael, Heres a link to the main OCF site. Tons of info is there to read thru to help patients and caregivers to better understand OC. The link is for info about radiation. A patient who is informed makes for a strong advocate for themselves.

Main OCF site, Understanding Radiation

10 kg is a lot indeed. As rightly mentioned nutrition is an important aspect and poor nutritional state would slow down your post op healing also.

PEG and careful diet planning would take care of that..

Radiation affects healing and before radiation it's important to remove all potentially decayed tooth or caries. So yes, all the teeth has to be removed. It would be an ordeal for you without them, I can hardly imagine what it would be like, but remember having the disease is worse.

Keep your family and dear ones close, it's goin to be a hard time, but you need to stay strong, keep up the confidence.


Yes it would be a big surgery, with not the greatest post op time. But u ll come out of it stronger !

Take care.

Thanks Christine, gmcraft and flamez91

Yes, The dietitian prescribed HF powder to be used with water

The Rad specialist changed his personal schedule, so I was lucky to meet him today.

I was moved by his professionalism.

It wasn't like a RAD education lesson as I expected.

It went like this ....

Are you scared ? --- yes

What do you do ? --- I work in Telco industry ...

He said the most difficult day after surgery is day 4 .....

He reviewed my MRI scan with me & my family

He showed us the dreadful tumor on my left tongue (T3), The tumor is quite big, crossed the center line, and the left swollen lyphm node (N2b)

I noticed my sudden swollen neck bump this morning in the mirror, he said it was there for months.

He told me not to blame my self for my current situation. and be confident that we can beat the vicious SCC

According to the Rad specilist, my treatment plan was discussed on their hospital's multi-disciplinary meeting. They say it is curable

They decided that surgery plus radiation is best for me. They never done radiation first to shrink, then cut it ( I read this method somewhere else)

probably 3 weeks after surgery, I will go through 6 weeks radiation, 1 per day, 5 days per week. Total 30 times, I shoud be able to drive

the radiation aera is some aera around the tongue , left / right vertial lyphm lines, and a horizontal line across the neck bottom ( this is new to me, may be due to the worrisome N2b)

the dose is 60 gy, the radiation beam is quite narrow, low depth. my other body parts will be less affected. and my jawbone will be less affected

He ordered a full body PET scan. He will have another chat with me after PET.

Next week, I will be very busy --- PET , PEG, addmission to hospital

Michael on your next visit after the PET if you remember, ask your doc to clarify a few things...

Why only 3 weeks after surgery you would start rads? Usually around here we see patients start rads 6 weeks after surgery to give their bodies time to heal before starting rads. Radiated areas are difficult to heal after being exposed to rads.

What kind of rads will you be getting? Most here have had IMRT. In the link I previous posted, theres more info about rads including detailed comparisons.

You mentioned 60 grays will be your dosage for rads saying less affecting other areas. Im curious about which radiation type you will be having as normally patients all get whats called "scatter radiation damage" meaning areas near the tumor will also be affected by rads.

Hi Christine, I asked if Rad starts 3 weeks after surgery, the RAD doctor said something like worry about it later. I guess the surgeons will decide when it is suitable for RAD.
I will ask him what particular RAD I will be getting.
On their Radiation Oncology website, they list
1/ Image guided - IGRT
2/ Stereotactic Radiotheray - SRT
3/ Volumetric modulated Radiotheray - VMAT
4/ intensity modulated radiation therapy - IMRT

Hopefully I am getting the one with less scattering
Thanks again for your advice

Welcome Michael,

From what I know from previous neck dissections, the time between surgery and radiation is optimal between 4-6 weeks, but could be longer. Another thing is they try to keep the entire treatment package from surgery to radiation completion less than 100 days, more recent I heard around 89. If there is a delay they have time to work with, and could even increase the radiation if there are further delays.

The radiation types you mention are probably capable by one machine, namely by Varian, but all are external beam radiation.

IGRT uses a CT scan during treatment to monitor the tumor, such as shrinkage, and makes changes to its delivery.

SRT is more precise. There are other types brands that have names like Cyberknife, which is used often with brain cancer.

VMAT is an advanced form of IMRT where radiation is sculptured and delivered 360 degrees around patient. Another brand that is similar is Tomotherapy.

IMRT, Intensity Modulated Radiation Therapy, is what most if us get, and what you may too.

You mention one lymph node, but N2b is multiple ipsilateral lymph nodes, none greater than 6cm, so it's more than one node. Usually the effected nodes will get the same dosage as the primary, unaffected areas, around 54Gy or so.

I'm not sure if I read if you're having a neck dissection with the surgery? Sorry, just read yes. If there are negative prognostic factors from the surgical pathology, they may add chemo.

Good luck with the PET scan, and they will probably let you know of the dietary, exercise, medications, chewing gum restrictions for the test as they can effect it.

Michael, I forgot about things patients should do to prepare for PET scans. Thanks Paul for reminding me about that! Make sure you avoid exercise, carbs, drink lots of water and get extra rest the day before and the day of your PET. Talk with your doc, nurses or even the people scheduling the PET about important things you need to do so you get the most accurate PET.

Good luck!!!

Hi PaulB and Christine

We met with the RAD expert after PET-CT scan

The good news is that no other body parts are affected except the primary tongue tumor, one big left lymph node, and 2 right lymph nodes

They will continue their original treatment plan

Definitely I will have the neck dissection to remove those lymph nodes with the surgery

In my CT scan 3 weeks earlier, only one left lymph was showing positive. In just 2~ 3 weeks, MRI and PET-CT detected right lymph nodes not good either

The radiation doctor says VMAT , Volumetric modulated arc therapy which is the best, will be used on me

Thanks again for all your kind advice

Thanks for the update! With the extra info you gave I can better understand your situation. That must be why you will start rads so soon after your surgery. I knew your doc sounded like they were on the ball

To prepare, try to eat as much as possible especially all your favorites. Dont worry about putting on a few pounds. You will likely lose it quickly during your treatments and recovery.

I'll chime in with the part where you mentioned you'll be able to drive. I hate to break it to you, but after the first week or two ...no, you probably won't. You will be exhausted, you will be undernourished (if you're like I was), and you will feel like crap. Go ahead and line up a person or two that you trust and whose company you enjoy, and have them on call for the time when you end up needing them. You might get lucky ... but most of us hit a point, it's like a switch flips, and kablooey! there's no energy for anything, and certainly no brain cells for driving. This is time to focus on YOU and your healing.

I managed to avoid losing teeth at that point, but now (a few years later) I get to have all mine removed. Which means hyperbaric oxygen treatments before we can even do the surgery, and long healing after. If you need it done first, it's not bad advice to go ahead and do it.

I too got my PEG tube up front, hoping not to need it, but it was necessary. I didn't tolerate the formula well, probably should've pushed harder for alternate stuff from the home nurses for that to keep my health up, but it was better than nothing. Maybe I just should've made everyone bring me milkshakes nonstop ... at least I would've gotten the calories, even if I couldn't taste them through the tube. LOL. They are pretty simple to remove (for once the doctors actually mean what they say) so keep it as long as you need it.

There's my two cents worth. You do what you need, of course. And we're all rooting for you.

Thanks KristenS ,

I can forget the idea of driving to a RAD session , then a Chemo-sesion

anyway, I had my 8-hour surgery. Most of the tongue got removed , and my tongue got re-constructed.

The surgeons said the surgery is a success. They archived clear margins. They removed the tumor and lymph nodes from the neck.

the lymph nodes from both sides were tested positive. The bad news is that my SCC is very aggressive. post-op analysis showed that the bad cells broke the capsules in lymph nodes.

Chemo-therapy is necessary for me now along with Radiation therapy.

I now have two tubes in my body PEG and Tracheotomy tube

I kind of like PEG

but I had problems after the surgery with breath /sleep. just after the surgery , my air-duct often got clogged by saliva / phlegm. It has to be manually cleared .

My long journey continues