It seems that I cannot get past three years and a few months of bringing cancer free. Back on may 14th I went in for my first appointment with my new dr at the Huntsman Cancer Center in Salt Lake. I was checked over by two doctors and things looked good.

Now three weeks later I had my CT Scan and my follow up appointment. Went in to see Dr. Hunt for my results, the scan came back clean. Here the kicker, in a three week time a tumor showed under my tongue. He said it did not look good and took a sample of it. With the Huntsman center I was back in 3 days later with the results in.

It came back as being cancer and now I will be surgery on the 27th of June. I am looking at ten hours in surgery, 7 to 10 days in the hospital. The flap will be taken from left arm to rebuild the area back up.

I am glad that this will all be done at the Huntsman Cancer Center. They have there own hospital and I hear the care is top notch.

They do not know why it keeps coming back around the three year marks. So now let see what happens in 2016.

All my cancer have not been HPV, never smoked. I guess I am tested in my daily life with this and just need to take each day as it comes.

Sorry to hear Ivrerock. I guess this is a new or secondary cancer or does it have metastatic cells? I had five recurrences in 3 years, so I know how you feel. I'm probably more chemo and radiation resistant, and all mine were metastases. Anyway, you have to deal with it, no choice, and seems you are with the thought of being tested in life, and proceeding with proper care.

HPV is usually not found in the oral cavity, oral tongue. There is something called the "field of radiation" whereby cancer is outside the tumor area, and clear margins, so it can come back, and is usually from exposure to a carcinogen, usually smoking, but there are others as well that may have a casual role. Then there is metachrounous and synchronous cancers that can occur at the same time as the original cancer or a later date, usually from carcinogen exposure in the aerodiegstive Tract.

Whatever the cause, you seem to have a plan of action in place. Any radiation, chemo after? I never heard of this hospital, living on the east coast, but is it a CCC? Maybe get a 2nd opinion. Not too many people get chances after this, let alone after the first time.

There is brachytherapy and intraoperative radiation therapy, that are used as a radiation boost. IORT, which I had, is a mutistep process 1) doing the dissection to remove any cancer 2) High Dose Intraoperative radiation during surgery, 10-20Gy directly on the tumor with probes, while the area is still open, so it bypasses skin, structre, muscle any other areas, protects vital structures. 3) put in a flap, one being to be able to get more radiation after 4) do full dose IMRT and chemo several weeks later. This is only good for SCCC, if that is what you have, and is donne at a few CCC. Just mentioning other options that may be available.

Good luck, and hope this helps.

Im very sorry you are going thru another recurrence! I know how upsetting getting that diagnosis can be. Ive gone thru OC 3 times within 3 years. Seemed like everytime I got well I ended up being sick again. I too had clean scans. It can be a very frustrating and discouraging time when you get a recurrence diagnosis. Im here to lean on if it will help you.

It was hard for me to understand what happened with my recurrences. My doc explained it only takes one teeny tiny cell to be missed to cause a recurrence. The CT scans are in 2 cm segments which is roughly the size of a grain of rice. A couple cells could easily be hiding between those cuts of the scan. A 2 cm sized piece of cancerous tumor is very very small and can easily be overlooked.

Since you have been out a few years from rads, you may be a candidate to do IMRT again. It may be a good idea to check out another opinion at a CCC. I did see your treatment facility on the list as CC. Maybe stepping up to a CCC would be something to look into??? Im just throwing that out to you as an option. It always helps to have some options. Since you have been around here a few years, you are probably aware of the assistance with flights and a place to stay for cancer patients seeking out of town treatment facilities. If you need more info please let me know and I will post the links.

Please let me know if you need help updating your signature. Im very good with abbreviations to get everything to fit.

Wishing you all the very best with everything!

I was very depressed with my recurrence. I was bemoaning what would happen the next time it recurred, when my husband said...wait for it..."Does it ever NOT come back? ".

Well, he had a point. Just because it came back once or twice does not mean it will ever show up again. Turns out that so far. (touch wood) he was right. Take care of it and then live without waiting for another shoe to drop.

You will do great with the surgery. Keep posting.

Donna

Thank you everyone I feel really good about Dr. Hunt here. It knows my old cancer Dr in seattle and they been going over my case. Dr. Mendez my old doctor fom Seattle works at Seattle cancer care. Before I moved back to utah he ws worried about it. It seem that Huntsman and Seattle cancer center follows the same protocols. I feel very confident in dr. Hunt.

But let say this week been hell, I went my dentist on Wed because of a loose crown. Let say it was more of a blessing. The tooth under the crown was almost one and then he found two more bad teeth under the crowns. He pulled them and under one that the roots was infected. If I would have not had the lose crown I would had one through surgery next week and could have been in worse shape.

Christine what is the classification of CCC and CC. This is the first time I have heard of it.

Here is a link to the list of CC's and CCC's. If you look towards the top of the list there is a legend with the symbols for each one. Click on the written out words for each one (ex click on cancer center to learn what a cancer center is and do the same for a comprehensive cancer center). I use a MAC so mine just brings a small drop down box with the definitions.

CCC list (with definitions)

An OC patient who has had radiation should be discussing hyperbaric oxygen treatments (HBO) prior to having teeth removed. On the other hand, from what I understand about HBO it doesnt go very well with someone who already has cancer. Please ask your doctors about HBO. Normal procedure is called the Marx Protocol, 20 dives prior to dental work and 10 after. It does not make a difference if the tooth is on the unradiated side. HBO is very important to help prevent osteoradionecrosis (death of the jawbone).

Marx Protocol

[quote=ChristineB]I did see your treatment facility on the list as CC. Maybe stepping up to a CCC would be something to look into???[/quote]
[quote=lvredrock]what is the classification of CCC and CC. This is the first time I have heard of it.[/quote]
As far as the National Cancer Institute is concerned, in terms of patient care there is no difference between an NCI-designated cancer center (CC) and an NCI-designated comprehensive cancer center (CCC).

According to its mission statement, the NCI is the "federal government's principal agency for cancer research and training." As I've noted on these boards a few times over the years, it provides funding for research, and the terms "NCI-designated comprehensive cancer center" and "NCI-designated cancer center" represent research interests only -- not the quality or scope of patient care. Institutions choose to apply to the NCI for such designation, which involves a peer-review process and a lot of paperwork.

The NCI defines "comprehensive cancer center" differently from how the term is usually used on the OCF message boards. Here, it typically means an institution where a patient's treatment plan is devised by a multi-specialty team, taking a "comprehensive" approach, rather than the patient having to patch together a surgeon, a medical oncologist for chemo and a radiation oncologist -- along with other necessary personnel depending on the type of cancer -- and hope that they will communicate with one another.

In NCI-speak, designation of a facility as a "comprehensive cancer center" means that the institution is involved in three types of research: basic laboratory; clinical; and prevention, control and population-based science. All NCI-designated comprehensive cancer centers also treat patients. An NCI-designated "cancer center" concentrates research in one or two of those areas; most also treat patients, though a few -- like the Wistar Institute in Philadelphia or the Salk Institute in San Diego -- do research only.

Further information is available here: http://cancercenters.cancer.gov/documents/CCSG_Guidelines.pdf -- see page 3 of the document (page 6 of the .pdf file) for the NCI's definitions of CC and CCC. For a look at how the application process works, see this timeline of the University of Kansas Cancer Center's quest for NCI designation -- you'll see how research-focused it is.

Finally, the Huntsman Cancer Institute, the NCI-designated CC where lvredrock is now being treated, is also a member of the National Comprehensive Cancer Network, an alliance of 23 leading U.S. cancer centers (two more were recently added -- UC San Diego and the University of Colorado) that together develop and annually update the state-of-the-art treatment protocols used by hospitals across the country, including the NCI-designated CCs and CCCs.

HI there... I just wanted to wish you all the best. And add, that maybe this time out they should do another round of radiation? It sounds to me like a slow growing cancer, and if it isn't completely cleared it will come back. This is why you hit the three year mark and it has suddenly popped up to a visual issue again. I would look into PDT too. Since this is a lightable place!

(photodynamic therapy)

hugs and best of luck.

Close to Two months post surgery. They ended up removing front front right and left side of the tongue. They had to remove more due to how large the tumor grew in 3 weeks ( grow 3x larger after the byopsy was done)
The edge of the tumor was very close to the jaw again. This time they did not touch the jaw. The finale review was done by the tumor review board, they ruled no chemo or radiation. Just monthly appoints with my doctors. I just need to get use of the skin graft on my lift wrist were skin flap and also the scare to remove the artatary (sp?) for the blood supply.
Now have to try to get the new tounge working right so I can get off the feeding tube. The food stuff always make me sick and drained. I have worked up to drinking Monkey Oolong tea with a hint of peach. It taken the super thick mucus and thin it right down.
I just hope I can ge eating soon ,it is just strange when I try to eat and have no feelings in the front of the tounge. For me it freaks me out when I cannot feel the food. Time will tell.

Open to any ideas from anyone here with help or suggestion . Thank you

Thanks for checking in! Glad to hear you are doing well with your recovery! You may want to seek out a SLP to help you with relearning how to eat with your new tongue. They really can do wonders with speech too.


Keep up the good work!!!