Hi everyone,

I am a new member here. 38 yrs old, diagnosed with SCC of the tongue. Had surgery on Jan 20th, a "nearly total hemiglossectomy" and bilateral neck dissection. Multi-sattelite tumor, negative but closish margins, left nodes clean, two right nodes with micromets. Staged as IVa. Never smoked, very casual drinker, no second-hand smoke around, no history of cancer in the family, generally healthy.

I am speaking and eating well so far. A week from tomorrow, I am starting radiation (7 weeks) and chemo (wk 1,4, and 7, cisplatin, 100 mg or something)... I've been talking to many great and experienced doctors, both H&N surgeons and oncologists, and nobody seems to be certain whether or not I need chemo. Everyone says that I am as borderline as they come. Only one doctor (at Sloan of all places) was absolutely unequivocal in his opinion - no chemo. I decided that since chemo opinion is out there, I'd rather go for it because at least I will know that I did everything I could have. I guess I will never know whether or not I made the right decision.

I am deathly afraid of the side effects, not as much those that will go away eventually, but mainly of the irreversible ones. Everyone tells me how great I will do because I am young and healthy (well, except for that one little c-word), but everything so far has been just a tad bit worse than expected, so I am not holding my breath. I am fairly disciplined, so I will drink my fluids and rinse my mouth and do all the right things, but it seems like there is only so much I can control.

Aside from that, I am really disappointed that diagnosing me took 4 months because nobody took me seriously. Everyone I saw (my internist twice, ENT twice although he did brush biopsy and blood test and both came back negative, ER when I went with horrendous pain in my tongue) kept telling me that it can't possibly be anything scary because I don't belong to any risk groups. Rinse your mouth with saline, get a mouth guard because you are probably biting your tongue, it's probably ulcer because you have three young kids and a full-time job and just stressed or something... And then when my dentist told me to see oral surgeon ASAP, it was November and appointments took weeks to get because it was Thanksgiving... Just seems like time was going down the toilet.

But I am here and now, and really hope to weather the next two months somehow and hopefully move forward.

Thank you so much to the creators of this site and the foundation. There is so little awareness about oral cancer among the doctors who don't come to contact with it frequently enough, and so little information so that they don't take patients like me seriously enough that it makes you wonder how many lives can be saved if only people knew more.

Jenka

Welcome to OCF. I know its a scary time right now for you. Please feel free to ask questions. There are many survivors and caregivers here who will be happy to help guide you thru this.

To avoid some of the after effcts you can make sure you do stretching exercises several times per day. This will help to avoid trismus. Also make sure no matter how difficult it is to swallow, you try to drink a few sips everyday.

The only other recomendation is to eat like crazy right now. Eat everything you can since it could be a long time before food will be as tasty as it is right now. Dont worry about gaining weight, you probably will lose some during treatment.

Your age will be a big benefit to you with the healing and recovery part of this. Best of luck with everything.

Welcome Jenka. A couple of things struck me about your post that I want to address right away:

1) Chemo: Cisplatin is, as I understand it, a chemo which is designed to enhance the effectiveness of radiation. It does not have the same side effects (hair loss) as some of the other chemos. I was told that having Cisplatin with radiation would increase the effectiveness by approx 15%. Put that in my shopping cart, said I.

2) I hear your frustration and anger at being mis-diagnosed or not diagnosed. Many of us have lived that tale. I was a year before the diagnosis was made - and like you - received many possibilities from physicians because I too didn't fit the profile (despite the fact that I smoked!) I was 49 casual drinker - at the time I was diagnosed I was told the profile was 70 year old male alcoholics. Eventually, you will need to let go of that anger, but boy I sure feel it with you!

Post often = people on this site are AWESOME. There is so much that goes on with "the C word" besides the actual treatment phases. Feel free to post how you are feeling, we've been there and maybe we can help by listening or offering some suggestions.

Donna

Jenka,

Sorry that you are dealing with this cancer and so sorry that it was not Dx'ed early but unfortunately that happens all the time.

Re Cis, as you can see I had it and when I did, it was routinely given in 3 large doses. Now the norm is 6 smaller weekly doses which appears to lessen the chances of it's adverse side effects. Make sure you discuss this with your MO.

It is good that you are pro active as a patient because believe me the medical profession is filled with just us humans and they are as we say JUST HUMAN.

BTW where are you being Tx'ed?

Jenka
you seem to be getting 100 mg/m2. (strange measurement, for some amusement ask a physician how the get to m2)
It seems to be more common to get weekly doses (around 30 mg/m2) of cisplatin these days. These seem to be better tolerated that the 3 mega doses which often could not all be given anyway. You might want to inquire if that is an option for you as well.

Also.... cisplatin can cause hearing problem stay on top of that.

Best

M

I was told about hearing problems and neuropathy on top of everything else. MO said that hearing loss is usually limited to high frequency sounds and not common, although from reading the forums here it sounds like it's not that uncommon. He also said that it is probably underdiagnosed because not many people notice that they can't hear high frequency sounds right away.

I will ask about about weekly doses of cisplatin, thank you.

I am being treated at Montefiore. I had absolutely incredible, attentive, skilled, and compassionate surgeons, and so far MO seems to be just as good.

I have permanent high frequency hearing loss but because no one suggested or did a pre Tx hearing test to establish a base line it's impossible to blame the chemo even though I'm 1000% sure that's what did it.

Hello Jenka, I am no expert with chemo (I had none) but a couple of other things you might consider asking the docs about:

Since you are young, you will have about 40 + years to live with the side effects of the chemo. Many of the chemo drugs are not studied well at this length of time.

The potential effects on reproductive health and what that means to you.

The potential for other significant health problems.

If I were you I'd get all the reasons for not doing chemo from the one doc and then present those to the ones that think you should. Ask them bluntly for justification. Chemo is not without it's own set of risks.

We've brought up all the potential side effects with all the doctors I have seen. The only one who said I didn't need chemo didn't list side effectsc as a deciding factor, he simply thought radiation was enough - my margins are negative, there is no extracapsular spread, and the nodes involved had less than 3mm worth of cancer, tumor was fully resected. Those who thought I absolutely needed chemo cited PNI, the fact that it was a multi-sattelite tumor, and that margins were close, and to them it seemed like I had enough high risk factors to be aggressive.
And then there were those who said I may not need chemo, and that the side effects may not be worth it, but they weren't 100% in either camp, but it seemed that since I was young and could take chemo better than a 70-yr old, it's a good enough reason to be as aggressive as possible.

Clear as mud.

Thankfully, I have reproduced enough - I have three kids, so my girly parts don't need to function at full capacity. But other side effects are very serious and potentially life-altering, and that obvioulsy a huge concern.

I am not taking it lightly, I have agonized over whether to do chemo for weeks, and frankly experiences of people in this forum terrified me beyond anything I have read and heard so far. But strong chemo opinion is out there, and therefore the fact that a very experienced doctor think that I have a high risk of recurrence and worse if I don't do it, and it is nearly impossible for me to dismiss it.

Not easy at all.

Jenka

Im sorry if you have been made to feel afraid by reading things on this forum. If nothing else, please remember that EVERYONE IS DIFFERENT!!!! What is hard for some is a piece of cake for others. Everyone on here has had different reactions to their treatments and different after effects. Some get thru this so easily while others struggle the whole time. Being upset or scared is a normal feeling when faced with the unknown.

The info on here and especially what is written on the main OCF pages is medical facts. This should be helpful to you and other patients to going thru treatment.

You will find lots of help and support while you are going thru treatment. Its not easy, but it can be done.