Charm, thank you so much for your reassuring words. Hope that you are doing well!! Sally

Hi Sally,

Glad to see that your surgery went well. Radiation is tough but absolutely doable. You will feel not so great for awhile but it really is the best method for killing off any stray cancer cells.The first chance is the best chance you'll ever have at beating this completely. Definitely do the maximum you can do to get this awful thing out of your body once and for all and then you won't have to think about it again.

My doctors were extremely aggressive with me. It was very rough at first but I am almost at 5 years now and I've regained alot of pre-cancer functionality. My neck is still stiff from the radiation and surgery combo. I work with chiropractors and massage therapists and it still gets better. I feel it is a small price to pay for peace of mind that I did everything in my power to get rid of this thing.

Don't be too scared- it wasn't as bad as I thought it was going to be- just gradually more uncomfortable and tiring as time went on. It isn't as horrific as I had imagined in my head.

Hang in there! You will get through this.

xoxoxo Kate

I had perineural invasion too and radiation was reccommended to me too- I also had the 3 mega cisplatin treatments... I think this is the usual reccomendation.

Thanks Kate. I love reading how successful all of you UCSF patients have been... I grew up out there- and if we ever move back, it's great to know that follow-up care would be excellent!! The RO I met with last week here in NYC did two years out at UCSF also. I loved her- she made an incredible impression on both my husband and me.
Thank you so much for your encouragement. What type of chemo did you have?

Congratulations on your almost five year mark and your huge accomplishments after a total glossectomy.

While it sounds like everyone you are around knows what they are doing, I guess I'm a middle of the roader on this. I know some top places do not rely on scans as much as other top places. At MDA, for example, I've never had a PET scan, & I don't think they do them as a rule. But they do CT scans, never without thorough clinical exams though as they think it takes both. My ENT oncologist says that a clinical exam can be subjective, while scans are objective. I know Fox Chase is a place that does not do routine scans AFTER you've been treated. My PCP is always wanting me to count the number of CT scans I have as he says: "no one else is counting, so you'd better".

I know what Charm is saying about a doc finding something that did not show up in the scan. It happened to a relative of mine with breast cancer. But I like to hedge my bets.

I'm coming into your story later, so maybe I'm missing something. Did you have a CT to look at lymph nodes at some point? Second opinions never hurt; you won't have a chance to do that after treatment, only now. You mentioned Sloan Kettering--my cousin was treated for kidney cancer there succesfully and raves about the place. Lots of good places near where you are.

Best,
Anne

Thank you all for sharing your experiences!! This is very helpful.

The treatments they are telling me about are consistent with what they told us presurgery. They told us that evidence of PNI was reason for radiation. They said if my nodes had been positive - chemo & rads would be the course.

Kate, can you tell me more about the 3 mega Cisplastin?

Thanks,
Sally

You didn't ask me but I will tell you MDA seems to have gone for the 6 Cisplatin protocol. The reason for this is that so many people seem to not be able to get through the 3 mega, and they feel the results are the same. I did see a study about it when I researched it before I had the Cisplatin, and the study (just one study) showed that 6 cisplatin was as effective. Some others may tell you otherwise. I do know MDA used at least some 3 mega sessions a year before I got there so they may have just switched.
Anne

Thank you Anne.

How did you do on the Cisplastin & rads?

Apologies if your story is on here- I haven't looked yet.

Thanks,
Sally

I did ok with treatment. I had IMRT, "every lymph node in your neck," I remember the RO saying, but more on the bad side of course, and my tongue. I think I did not have more radiation in my mouth because they had removed more of my tongue after I had the original small lesion taken. There was no additional cancer. Radiation was not too bad until the last couple of weeks, but I still managed to eat & keep the sores from getting to me. The 10 days after treatment lived up to its reputation of being the worst. Chemo was a bear for me, but probably would have not been had I not had another problem, which is too much to go into here. I had a GIST (gastrointestinal stromal tumor) which is a sarcoma that grows out from your GI track, in my case stomach. It gave me lots of digestive problems, resulting in constipation as well. I did not use pain meds, which is just me, and did not have a feeding tube. No one knew about the GIST which was large, had lived in my body for years, but is now gone and needs no further treatment. That story is in the general topics page if you want to know, but it is unrelated to oral cancer, so probably not.
Anyway, how your treatment will go depends upon a number of factors. I had a great will to get through it without using much in the way of pain meds (which was 0 until after treatment), and I wanted to keep my weight up. It became a goal and a challenge. I was religious about taking care of my mouth (baking soda rinses if/when I saw any sore) and tried to make some time in my life to read, watch TV, go to integrative medicine classes, which included exercise and meditation, etc.
You too can get through it!
Anne

Anne is right (she's also amazing!!! ) rads can be hard or manageable it really depends on the individual! How they are with pain! And how their body reacts to things. I too avoided pain meds until the first week post treatment. Then I used them for a week or so to get through the worst. I'm not really into pills and despite all the prescriptions I filled and that they gave me I just really didn't need them so if I didn't, then I didn't take them. Someone said to me don't try to be a hero. I told them I wasnt, if I was in pain or needed them I'd use it... I just didn't see the need to medicate for no reason. With chemo and rads your body is already out of whack adding to it just didn't seem right some how. cisplatin wasn't too bad for me... The nausea was well managed I did take the prescribed anti nauseants for the tree days following my treatment. And i think I used maybe 4 of the break through nausea pills they gave me. But for he most part it wasn't bad. Mind you the hospital protocol here is 24 hrs in the unit on an IV as the cisplatin is very hard on the kidneys. So they bolused me fluids and anti nauseanrs - day one. it's doable. Like Anne ... Getting through it was my goal. take care!