I had my consultation at the Cancer Center yesterday. All in all, it went well. Weird feeling in throat is reflux, thank God. The surgeon said he will be removing the tumor in the back right portion of tongue and "possibly 1/4" of right side of tongue. He will be doing a right neck disection and removing about 25-30 lymph nodes to test. He said there is "maybe a 30% or so" chance that I will not need radiation. I pressed him for that prediction. I am glad that there is a possibility that I won't need the radiation and maybe no chemo. But from what I have been reading here, if you forego radiation your chances of recurrence are much greater. I would rather just go thru hell now and lessen my chances of recurrence as much as I can. I don't really know what to think...can they be so sure there is no cancer from checking that number of nodes? What do you guys think? All in all, I feel real lucky about the visit. The throat issue had me on the verge of a total flip-out.
I guess I will get the staging after the lymph nodes are examined.
Denise

Hi Denise,

The most important aspect to the entire battle is trusting your medical team. You are at the point where you can obtain alternative opinions to validate your trust or possibly seek alternative options.

Once you place your trust in your team you need to weigh the options that are presented and especially consider the recommended approach. The doctors and teams have many years of experience and training and know best what treatment plan works best for your specific condition.

None of us here have any idea of the specifics of your case so can not offer any suggestion of what treatments are best for you. There are a couple common philosophies as you allude to yourself; wanting to be aggressive the first time around with the thought it offers the highest chance of cure and the lowest chance of recurrence.

The other approach is to try a less aggressive treatment plan to still cure the disease, that is remove all known cancer cells, and improve quality of life with fewer short and long term side effects. Only you can decide what is best for you.

Personally, I had 3 rounds of chemo before getting 35 treatments of radiation and 7 rounds of chemo, no surgery. It was very tough but I felt at the time and still do, that in my case I was fit and able to endure the extreme treatments. I wanted it DEAD and GONE and today never have a moment's thought that anything else might have given me a better outcome.

The only thing I have learned since treatment that might have influenced my decision is the long term side effects of radiation. Had I factored in all the potential issues with them, I might have asked if radiation was essential. In my case, the subject never came up across all the professionals including tumor board so based on my case, it was a "no brainer" I needed to do it.

The logic behind the lymph nodes is oral cancer generally travels via the lymph nodes. So by checking how many and how far they find cancer, they decide where they think it is and then decide the treatment plan to cure or treat it.

Cancer can travel to other places like the lungs so it is possible for cancer cells to get lose and go other places. There is no perfect calculation so the experience of the team is so vital.

Good luck
Don

Thanks for your input. Right now I am leaning towards going after it full on. I keep remembering when I was a kid and lived in a tough neighborhood in Brooklyn, NY. My big brothers taught me how to fight. The "bottom line" was always that if someone attacked you, fight back with all you had. If you were gonna punch somebody in the face, throw all your weight in it and knock 'em the hell out. That is just how I think now. I guess it's all speculation till the report comes back on the nodes. I will just try to enjoy my 11 days till surgery and then take it from there. Denise

Hi Denise,

Don said it best. Remember when seeing other posts, they may not be the same type cancer as yours, which sounds like oral cancer, and may be oropharyngeal like tonsil or base of tongue, which is treated differently than oral cancer, usually with chemoradiation initially with or without surgery such as a neck dissection. Even within this group, HPV related is somewhat treated differently now in clinical trials than tobacco/alcohol related oropharynx cancer, even oral cancer within the oral cavity is divided into different groups, have different risks.

Oral cancer is often treated with surgery alone, and based on other factors, such as tumor location, size of tumor, tumor depth, tumor thickness, number of nodes involved, location of positive nodes, and other negative prognostic factors, like ECE, Extracapsular Extension, PNI, Perineural Invasion, may indicate the need for radiation or chemoradiation, even with a neck dissection you're having.

Good luck with surgery, pathology, and keep the fighting spirit.