Update-No real answers at this time

We met with the surgeon (Dr. Renner) yesterday. He advised us against going forward with surgery at this time. He thinks the area on the base of my tongue is too large to operate on without leaving me on a feeding tube and unable to speak for the rest of my life, as the amount of tissue removed would be significant.


I am still headed to the University of Chicago the first week of March. While there I will have several appointments spread over a couple days as an entire team will evaluate previous information and my current status before making any recommendations.

Based on the surgeons thoughts yesterday we are also working to get appointments at MD Anderson Cancer Center in Texas.

We are gathering as much information as possible so that we can make the best decision for quality and quantity of life. My case is just unusual, and more advanced than originally thought, and we don’t have a lot of answers or really know what the future holds.

~Alicia


**Again, if you have questions please post them in the comments and we will answer them**

Alicia's Update...

Last Friday I had surgery to remove some spots on the base of my tongue.  When they were doing the surgery, the surgeons initial reaction based on his visual inspection, was that the spots did not appear to be cancerous (and this is a guy who sees a lot of cancer in this part of the throat).  However when the pathology came back they were all cancer.  So, we have decided to pump the brakes and regroup.  I will NOT have surgery on the 19th.  We are working on getting an appointment at the University of Chicago, thank you to Meredith Boessen for working so hard on this,  to get a second opinion on the route that we should be taking (we are targeting the University of Chicago because of their specialty in head and neck cancers).  My doctors here are also meeting on Tuesday to get a new plan in place.  The doctors (both the surgeons and the lead oncologist) feel that I am not reacting enough to the treatments that I have had.  I don’t have radiation scarring like I should (and scarring is the purpose of radiation; they damage the tissue so that it cant grow the cancer cells or any cells at all), I shouldn’t have so many spots on the base of the tongue (these don't appear to have reacted to the radiation or the chemo at this point), etc.  All involved are in agreement that my case is unusual and rather than rush into a procedure or process without weighing the pros and cons we are all going to work together to form a new plan.  So, it looks like I still have some more fighting to do and a longer fight ahead before I can say that this chapter is behind me.  Since my case is so strange we don’t always have, and may not have, answers or we may  have to change directions quickly.  That is just part of having cancer.
I appreciate everyone’s thoughts and prayers. 
It does hurt to talk and eating is still a challenge for me so if I don’t answer your call or decline an invite it’s nothing personal.

**Edited to Add: If you have questions please post them on the comments and Alicia or I will try to answer them.  There may not be a good answer, but would rather have all the information here, rather than the both us of repeating ourselves to different people.  And your question may have been on the mind of someone else.  Also, Alicia is working right now so she is kinda busy (you know working, having an almost 1 year old and having cancer are a little time consuming) so don't assume that a slow response or no response means something bad.**

A Note From Alicia

Just wanted to send everyone a quick update on me….

-Dr. Renner, the surgeon, that removed the lymph nodes called me late last week and advised me that we have most likely found the primary, the base of my tongue.  Yes, the same spot that we had biopsied  twice and came back negative.  Anyway, we are doing a laser surgery this Friday at 1 pm to remove the spot at Ellis Fischel in Columbia.  I do have to spend the night in the hospital  but shouldn’t have a hard recovery.

 -The neck dissection was more intense than I realized….they removed 57 lymph nodes and 17 came back positive for cancer.  The scar is large and my neck is stiff but there shouldn’t be any permanent nerve damage on the right side.  I have a little bit of a lazy lip right now.

-I will have the left side neck dissection on the 19th of February at the University and will spend several nights in the hospital.  Should expect the same recovery process as with the one before.

-I met with Dr. Laux today to discuss the course of treatment since we now have a primary.  He said the treatment course is/was the same and I will continue to take Herceptin until June.  So, that means if the surgeries go well and we are able to remove all of the cancerous spots/lymph nodes I should be cancer free.  I will be watched very carefully for quite some time with scans, etc.  But will not have to repeat radiation or the “harsh” chemo I did this summer at this point.

-If for some reason I don’t have great scan results after the surgeries then we will work out an plan of attack.  Most likely this plan will include the University of Chicago as Dr. Laux said they are the best in the nation with head and neck cancer.  But he said we will cross that bridge if we have to.

Thank you all so much for your love and support! I appreciate it very much.  

Don’t be alarmed if I am MIA for awhile…just hunkering down and trying to heal.  Here is to an amazing Spring and Summer!!!