Welcome to the OCF Magdalena. My husband has metastasis to both lungs. He had radiation and has been on different chemos since Oct. '07. He is 48 so you have quite a bit more youth on your side. Where are you being treated? We are now going to Sloan in NYC. If you have questions, just ask. I'm on the board everyday now.

Sue

I have my teratment in Center for Advanced center (Lutheran General Hospital -IL)
I had I can say 2,5 surgeries
First January 08'-they removed this horrible thing from my tongue-one week after this they got results -SCC
Next March 08'-I had surgery they removed all tumor from my tongue and they also removed 3 lymph nodes from my neck(negative)
After this I've started my radiation in April,but after three radiations i've noticed that somothings wrong is with my neck-I had bump in the same place where they removed my three lyph nodes.I had bipsy,my doctor thought that this is fluid from my last surgery,but It was SCC.So I had my third surgery in May 08'-radical neck dissection.After this they put in PEG tube and next day (05.22.08) I had my first radiation and first chemo.I finished my treatment in June 08'
In November 08' I had pet scan and after this bipsy.My doctor told me that I have secon spread this time in my left lung.
12.05.2008 I've started my 2 cycles chemo (Erbitux and docetaxel)
yesterday i had my fifth chemo ,three more and I will have ct scan-so wish me good luck:)

How are the side effects from the chemo? Are you very sick? My husband's scans didn't show the spread to the lungs right away either. That all showed up during his second surgery. The lung stuff started on the outside of the lung and then invaded it. Good luck to you-I'll be praying for you.

Sue

After my first, chemo,I've got infection on my head-but they gave me special shampoo and antibiotic so now is really very good my head looks much much better stoped iching. I have also rash on my neck and chest I mean in one week I have rash on my neck next week i have on my arms. I can have rash all that stuff but my horrible side effect is pain in my mouth,some sores- sometimes I have big pain in my mouth so I have problem with eating.My lips are swollen and my cheek.I ask my nurse why I have this side effect I should't have but she told me that I have my radiation few months ago so It's normal.
I have my good and bad days,sometimes I feel weak and tired and on the next week I have a lot of energy.I can say that I feel not so bad.Suemarie I'm also prayinf for your husband,I am sorry that he is so sick. I also feel fear because I have 3 chemos left,and then I will have my ct scan and really I would like to hear that my cancer is shrinking-but who knows.Like I said I have only 25 years and so many things to do,I don't want to hear that they can't help me.But come one I have to keep thinking positive that everything will be ok:)

Magdalena, Yes you are young to have this kind of trouble! Oral cancer (squamous cell carcinoma) does sometimes spread to other locations, the lungs are one of them.

Are they considering surgery?

What hospital are you being treated at?

I can understand you just fine!

Lutheran General Hospital IL (Center for Advanced Care)
Surgery??No this time just chemo.

Hi Magdalena,

I am also young (29) and was diagnosed with T1 SSC the right side of my tongue. It seemed from one of your posts a doctor seemed surprised that the cancer spead to the lung. From my experiemce it is not uncommon. They found a nodule on my right lung during a PET scan. So far they say it's nothing (too small to biopsy)

There are some other threads on the forum about "who" gets oral cancer. There are lots of us here that do not smoke or drink heavily and yet we have OC. It's no fun but there are so many people here who can help. Knowing you are not alone is a huge support.

Always feel free to ask any questions. We are here to help and support each other as much as possible.

Suzanne

Hi Magdalena,
My case fits the description you are searching for. I am currently being treated for my second recurrence, which is in my lungs on both sides. It's not operable and they can't do radiation. I'm about to do my 4th 3-week cycle of chemo (Carboplatin, Erbitux, and 5-FU).

My inital DX was in March of 2006, a tumor on the right side of my tongue and base of the tongue. I did radiation and chemo. I had a recurrence in July 07 with a cervical lymph node positive for SCC. I had a right side radical neck dissection and then another full round of IMRT radiation.

In October 2008 it was discovered (I was having lung pain) that now I have a number of tumors in my lungs. It's not operable and radiation is not an option due to the number and location of the tumors. I'm 'only' 41 (I think that's fairly young anyhow).

So I think my case is similar to what you were searching for. Feel free to shoot me a private message or reply however you feel comfortable.
-Steve

Mark - is the mediastinum a common place for the SCC to spread? My husband has a larger tumor in the mediastinum than the one at the primary site, BOT. Can't find anyone with as advanced stage as his.....T2N2bM1, grade 2, infiltrating moderately differentiated cells. Doctor says his is aggressive, inoperable and uncurable, due to the distant metastasis in the chest area. Do you have any input on his situation or anyone that might have? Thanks, Brenda S

Brenda, The lymph chains from the neck generally end up in the mediastinum. Spread to to this area is known to happen and presents a serious development. Because of the concentration of critical blood vessels, lymphatic vessels, esophagus, and the cardiac and phrenic nerves, surgery options in this area are very limited. Radiation as also an unlikely option due to the potential for very serious side effects. I wish I could tell you something different. I am sorry that I can't come up with any options to add for you.

I will add that we should never loose hope, because miracles can happen. Embrace love, family, hope, faith, and spend time together. Those things are really all we have, whether we think our time is short or not.