Hi everyone. My name is Ilyse. married and have two boys. I am new to this site, but not new to cancer. First diagnosed with tongue cancer (squamous)in 1999. Had tongue surgery and right lymph node removed. Was clear until Feb 2010. I found another sore on right side of tongue and pain in my ear and neck. Yes cancer back and under went another mouth Surgery. Almost a year later felt pain in neck again. Went to my ENT a couple of times. He felt and saw nothing, but I knew the cancer was back. Sure enough lump appeared in right side of neck. June 2011 had modified neck. All nodes clear, but Dr found thyroid cancer and a schwannoma tumor on right side of head on auditory nerve. Thyroid removed, recieved radio active iodine. Radiation and chemo (cisplatin) for 7 weeks. Thank goodness that is over. Now recovering from skull base surgery. Very thankful tumor (Schwanoma) is not cancerous. Dr. only removed 20% of tumor to spare hearing loss and facial paralysis. In a couple of months will have Gamma Knife Radiation.

I have found every cancer. Not the Dr's. Listen to your body. see a Dr. if symptoms are not gone in two weeks. Get a second oppinion. I have two ENT's and they both said get another oppinion.

This is such a wonderful site to read and share information. Let's us know we are not alone.

Keep fighting and don't give up. Treatments are not easy, but do able.

I wish everyone all the best. Take care.

Ilyse,
Wow, you have quite a story. You are so right about us having to be the vigilant ones. It is difficult to know where to draw the line sometimes, especially when it is so easy to worry.

I think a schwannoma is really slow growing--what do the docs say about that in relation to your oral cancer? I had an extremely slow growing sarcoma that was unaggressive in that it did not metastasize, nor infiltrate other organs except for the stomach which is where it originated. I have often wondered since if having a tumor like that made it easier for cancer to establish in my body. No medical person can answer that one for certain.

At any rate, I am glad for you that you are past treatment.
My thyroid lost function following surgery/chemo/radiation. After being on synthroid for 8 months I am finally feeling much better.

Thanks for sharing your history.
Anne

Welcome to OCF Ilyse! Always nice to have another survivor join our ranks! You are so right with your advice to pay attention to your body and when something isnt right get it checked by a professional.

Wishing you all the best with your recovery and upcoming surgery.

Ilyse - wow, you have really been through it. I admire your courage and send you all good vibes for continued improvement. Interesting about your ENTs telling you to go for different opinions. Dunno of course where you are in CA and I'm sure there are great docs everywhere. I had a wonderful team here in LA should you be nearby and need a recommendation.

Thinking of you.

Hi David, I feel I have really good doctors. At least they put their egos aside and said feel free to get e second oppinion and they would not be helping me if they did nod suggest it. I am getting treatment at UCI. They have been wonderful. Did get a secobd opppinion at UCLA, but it is too far. With traffic (and we always have traffic) it is three hours one way.

We all have been through a lot, you included, Head and neck cancer is not easy. We both have had the same procedures and treatments. Nice to know we are not alone. Feel free to email me anytime. We are all in this together. Take care. Ilyse

Hi Ilyse, welcome. You are new here but really a veteran and survivor.

I�m so happy you survived more than 13 years to tongue cancer. Well, through mathematics I see that you had your tongue cancer really young 33 -(just like me, had mine when i was 29).

That�s makes me really curious about you and your recurrence. Afraid of.

What was your first cancer stage? Did you had nodes involved? Did you get free margins? Did you had radiation? I�ll be happy to be in touch with you and help in the way I can!

Best wishes!

Ilyse, you have been through alot! Your a fighter!!! I'll pray for continued health and way to be an advocate for yourself!

First I want to thank everyone for sharing there stories and reaching out. I wish I new of this site years ago. My hospital does have several support groups, but I have been too sick the past year to attend.

Yes, I was first diagnosed 13 years ago. At that time I have never heard of this type of cancer. I had stage 1 tongue cancer. Right side, underneath tonge. Elected to remove right lymph node for this cancer likes to move down and is so micrscopic it would not be detected. All nodes were clear. When cancer came back in 2010 my ent was schocked. After 10 years technically I was clear so they said this was a new primary cancer. April 2011 Cancer came back in neck. They did say it spread from the mouth cancer, even though margins were clear and we thought we got it all.

Right now all my nodes are clear. Last Aug had 7 weeks of radiation and chemo. Next pet scan is May 4th. Last scan was not clear. There may or may not be something in my right lung. Hope it was just inflamation.

Please stay in touch. I am here to help you too in any way I can.

Wishing you all the best.

Hi Elizabeth,

I also have two kids. Both boys 13 & 8. First diagnosed with cancer when my oldest was turning one. Not easy.

My prayors are also with you and you family.

Hi Anne,

you are correct. Schwannomas are typically very slow growing tumors. But nothing is noraml with me. Back in June tumor was 7mm by December grew to 11mm. Neuro Dr's said this was an agressive tumor and needed to be treated soon. I went with surgery because I needed to know if this was cancer or not. Thank goodness no. Next step is Gamma Knife radiation. I have to admit I do not know a lot about this yet. If anyone has had this treatment would love to hear their story and any advice.

They did say it could have metastasized, but they are unrelated. I think I am just prone to tumors.

You pose a good question. I think they just don't know.

I am not familiar with sarcoma. But I am glad you are feeling better.

All the best,
Ilyse

Hello, Ilyse.

Thank you for sharing your story and emphasizing that it is so important to listen to your own body. You certainly are a survivor. Best of luck with the gamma knife. I don't know a lot about it either, but I'm sure there are some people here that could give you some advice/info.

Be well,
Kerri

Hi Ilyse. Thanks for your reply...

I also had stage 1, all nodes clear. had mi 1st control exams, all clear... but I�m really afraid reading about your case and knowing that it came back 10 years later.

How come? my doctor said if it do not come back in 5 years the chance is the same of anyone in the world. I�m really afraid!

As soon you get the lungs report just let us know! Hope it�s just inflammation. There�s a lot of cases like that.

Hi Ilyse,

Wow!! Good for you that you were listening to your self. I think that is something we all need to learn and remember.

Welcome to OCF. I am sure your story will help many here. Thanks..

Diane