Im VERY sorry you have joined the recurrence club!!! Please try not to panic. I know its shocking when you get the news, its so much worse to hear you have cancer again. You are not alone in this. Just remember this time around you are smarter, you know all the medical terminology. You have OCF to help you. Ive gone thru it 3 times so I understand what you are dealing with. Please come here often and let us help get you thru this.

Ida... did they not operate on you at all? Usually with oral cancer of the tongue (you can see it and feel it on the oral tongue) your first line of defense is actually surgery... then radiation and chemo in tandem... did they operate to remove the tumor? Did you have clear margins on your biopsy? sorry I'm still unsure as to where the actual tumor - recurrence is. The Base of tongue is actually in your throat and invisible to the human eye. It still sounds to me like it's your oral tongue if so it should be surgically excised. Then followed up with radiation and chemo... goood luck - so sorry about the recurrence... hugs.. you will get through this. take care.

We will be meeting the doctor today. Hoping to have straight mind to think and makes fast decision. Option left now I think is surgery and chemo. But lets see. I slept and woke up.. still not feeling good at all.. I guess we all been through that...I know Ida is stronger than me in terms of fighting it.. I am just feeling more devastated from the actual patient!.. Crazy huh.. but seriously I felt like can I go through it if its me? No way..

I will update more on the doctor's suggestions... its just crazy to have to go through it again... the ride is not just bumpy.. but hell crazy.. I wish where I lived have this kind of support group.. too bad..

I am trying to keep myself busy with work,but still breaking down into pieces.. its very hard to keep calm as CG, to show you are strong, tough...having to decide for things, keeping life moving (dealing with daily stuff etc)..

I'm sure everyone went through it especially the caregivers.

Wish me luck guys...

Ida,

Sorry to hear it's back. Tongue Cancer they usually do surgery first then Radiation if it's in the lymph nodes. No ND?

Thinking of you take care.
Connie

Hi Connie, ND are cleared so far, thats the reason we went through radiation first not surgery. Still cleared now I hope but only scans can proved it. So we are meeting the doctor tomorrow to discuss the options, only 2 left, surgery or chemo.. I think surgery would win, but how major it is, that's what we are waiting to hear. Still trying to cope with the news.

Al

Alz - ideally the correct treatment for oral tongue cancer is - removal of the tumor surgically - a neck dissection - then depending on tumor / size and or infiltration ( perineural involvement ) and differentiation - well, moderate, or poor - they decide on radiation, and chemo, or just radiation. They do it this way because first off - it is the best way of getting the cancer - cut it out with clear margin - then they use radiation to clean up any stray cells. Chemo is added to enhance radiation - it works systemically - however it kills stray cells for the most part. Unless there are a combination of chemos used - sometimes they'll do that first if it's a high stage cancer and a large tumor. It weakens the cancer / tumor, possibly shrinks it, then they remove it surgically.

Anyway - this is all would haves and should haves - what's done is done. They need to remove the tumor surgically, and likely do a neck dissection. The decide on possibly another round of radiation and possible chemo. (this is for a visible cancer on the tongue) if it is base of tongue - which it doesn't sound like it is - then radiation and chemo are usually the first choice. Regardless good luck.... And I'm sending prayers your way.

Chemotherapy is on the way folks... please do share what should we do pre chemo (food,mental health etc) and after the first chemo shot --just to stay afloat...

we managed to fight 35x IMRT - stay positive, pain management , food intake to make sure you are not under nutrient.

I frankly dont know what to expect for this chemotherapy sessions, I know hair will be lost, but the doctor keep assuring there will be support systems like medication to control nausea, blood count, etc...

Hoping for some feedback.

Really appreciate it guys...

Al

Hi Al - Until someone else shares some more direct experience with you, you might go to the OCF main page and click in the search box (upper right), put "Chemo" for several links on what it does and its effects on the body. A search for "nausea meds" can also give you an idea the different ones that are available. This could help you to think of some questions for the doctor or for anyone here. Re the nausea, whatever the doctor suggests, be sure and ask about what side effects of the meds are possible and what to do about them so that you can be prepared. My son did not have chemo with his Rad Tx but he did have nausea and some hair loss but the hair all grew back. With the help of everyone here, he made it through just fine and there is every chance that Ida and you will too. Try to stay positive and keep checking back here and let us know what's happening.

ALZ what kind of chemo??? Is it only 1 type???? CHEMO on its own generally DOES NOT KILL TONGUE CANCER!!!!!! Sorry I'm worried - really the tumor should be removed surgically. even if your dr. Chose to go with radiation first - the second line of defense if you face a recurrence is salvage surgery. Check the Nccn guidelines - they will tell you standard treatment. I know of only two people who've had chemo used to treat tongue cancer and I believe the initial chemo was for three months to shrink the tumor and it was a combination of three chemos - then they went through radiation and chemo. . But that was a first time out situation not a recurrence. Please i think you should get a second opinion. Surgery should have been your first treatment. Good luck!

Yep, I did said those to the oncologist, and he insists, this Monday we are getting another opinion from surgeon, and another opinion from another oncologist(quite well known who suddenly inbox my girl asking if he could help her since she added him on facebook and he saw that we were venting about her recurrence... miracle..)...

will update more, just want to have a quiet weekend... thinking of taking my girl for a getaway next week...loosen up abit ... and just deal with the stress management, its been hell since past 2-3 weeks...