My wife was just diagnosed with SCC of the Epiglottis

Hello,

I just came across this site/message board and this is my first post. I'm still trying to sort out all the terminology. Here's how this has unfolded.

Early December 2006 my wife mentioned a lump on the right side of her neck just below the ear. The lump was noticeable and we decided to "watch" it for a few days and see if it went away. My wife had no symptoms at all  After a few days the lump had not changed and we went to see our family doctor who prescribed Levaquin for ten days. After completing the antibiotic there was no change in the lump and we went back to the family doc.

We were then sent to a surgeon for a biopsy. The surgeon said this looked like something an ENT specialist should look at so we got referred to an ENT.

The ENT ordered a CT scan to see if the lump was in a salivary gland or a lymph node. CT scan came back and showed the lump was an enlarged lymph node (3.5 cm x 3.2 cm x 1.5 cm).The ENT then did a needle aspiration biopsy. After a few days the ENT said the needle biopsy was inconclusive and the lymph node had to be removed.

On 2/12/07 they removed the lymph node. My wife did very well and went home the same day. Prior to the surgery the ENT said there was a 50-50 chance it would be lymphoma.

 Two days ago (2/20) I took my wife back to get her stiches out and we got the biopsy results. Biopsy came back and showed a non small cell metastatic carcinoma. This was not what we expected because the needle biopsy had been negative, but the ENT said it may have been a case where the sample he took could have been from good tissue. He then put a fiberoptic scope down her nose and found a small (?) 1 cm squamous cell carcinoma on the right side of her epiglottis. The ENT said that we should probably expect 7 wks radiation, five times per week as well as the possibility of some chemo, but that the two oncologists he was referring her to would decide.

Next step will be a PET scan (we are awaiting approval). On Monday we have an appointement with a Medical Onc. as well as a Radiation Onc. That's the reader's digest version of what has happened to my wife in the last two and a half months. (Sorry to be so long winded.)

After trying to do as much search as possible, it appears that the cure is maybe worse than the disease. Some of the posts here make the treatment sound absolutely ghoulish and horrible. Any advice would be helpful. Any input on what questions to ask the oncologists would be really helpful. I think I know most of the questions I'd like to get answers on but input would sure help. Any good websites for answers? The stuff available on the web is overwhelming. Thank you.

On 2/22/2007 Waltm5615 wrote:

Hello,

I just came across this site/message board and this is my first post. I'm still trying to sort out all the terminology. Here's how this has unfolded.

Early December 2006 my wife mentioned a lump on the right side of her neck just below the ear. The lump was noticeable and we decided to "watch" it for a few days and see if it went away. My wife had no symptoms at all  After a few days the lump had not changed and we went to see our family doctor who prescribed Levaquin for ten days. After completing the antibiotic there was no change in the lump and we went back to the family doc.

We were then sent to a surgeon for a biopsy. The surgeon said this looked like something an ENT specialist should look at so we got referred to an ENT.

The ENT ordered a CT scan to see if the lump was in a salivary gland or a lymph node. CT scan came back and showed the lump was an enlarged lymph node (3.5 cm x 3.2 cm x 1.5 cm).The ENT then did a needle aspiration biopsy. After a few days the ENT said the needle biopsy was inconclusive and the lymph node had to be removed.

On 2/12/07 they removed the lymph node. My wife did very well and went home the same day. Prior to the surgery the ENT said there was a 50-50 chance it would be lymphoma.

 Two days ago (2/20) I took my wife back to get her stiches out and we got the biopsy results. Biopsy came back and showed a non small cell metastatic carcinoma. This was not what we expected because the needle biopsy had been negative, but the ENT said it may have been a case where the sample he took could have been from good tissue. He then put a fiberoptic scope down her nose and found a small (?) 1 cm squamous cell carcinoma on the right side of her epiglottis. The ENT said that we should probably expect 7 wks radiation, five times per week as well as the possibility of some chemo, but that the two oncologists he was referring her to would decide.

Next step will be a PET scan (we are awaiting approval). On Monday we have an appointement with a Medical Onc. as well as a Radiation Onc. That's the reader's digest version of what has happened to my wife in the last two and a half months. (Sorry to be so long winded.)

After trying to do as much search as possible, it appears that the cure is maybe worse than the disease. Some of the posts here make the treatment sound absolutely ghoulish and horrible. Any advice would be helpful. Any input on what questions to ask the oncologists would be really helpful. I think I know most of the questions I'd like to get answers on but input would sure help. Any good websites for answers? The stuff available on the web is overwhelming. Thank you.

I had the same thing and had treatment. Its not easy but your wife will live w/ treatment. without it she won't. I had 38 radiation treatments and had chemo 3 times a week. There are meds to help side effects. Your wife is very lucky it was found before other symptoms appeared so it is still a very tiny cancer. Her cure rate should be around 99%. Before my throat ca I have breast ca a whole different ca. and as I write this I am doing well. been in remission over 5 yrs for throat ca and declared cured. It has been 9 yrs for breast ca. Both of you will get through it and be stronger for it.  Good luck and God Bless You.P.S It's not as bad as the treatments are protrayed on tv and web, with the new meds today. I never even lost my long pretty hair , it just got a little thinner. Robin Hinton from tupelo , MS w/ a great CA Center and ENT.

I was 62 when I was diagosed with scc on the left.I had cat scan,pet scans biopsy. iIstarted on radation 2 times a day for 7 weeks along with chemo 1 time a week.I also had to have a feeding tube (peg) was also on a pump for 2months because I couldnt get enought fluids and nurshiment..I went down to 80 pounds.I prayed and so did a lot of others, through faith and prayer and the knowledge of the doctors it was cured.I never gave up hope and I believed it would be ok.no matter what the outcome I would not be able to change it if it was the worst.trust in the good lord, mine started with a sore throat.

sue cavitt

I was diagnosed one year ago with squamous cell ca of the epiglottis. My symptoms were a constant choking feeling when I would eat, thought it had to do with my sinuses and sore throat, Yes I was a smoker but never thought anything about it. Finally saw an ENT , he diagnosed it immediately in his office after a scope, there after it was continuous running to physicians,surgery to remove the tumor, 40 radiation treatments, 8 weeks of chemo therapy with cisplatin, a feeding tube after I started to lose weight.

to date I have lost around 40ls, just had the feeding tube removed after 10 months, I am eating but internal structure of mouth is still burned from the radiation, changes daily, finally some tastebuds have come back, no saliva, am on meds to see if I can restore this, they claim anything you get back up 18 months is all you are going to get back.Well we will see, yes it gave me more time with my family, but any cancer can go into remission, it is never cured, can rear it's ugly head years later it is just dormant, can spread to any other organ or a new site can appear. Do you give up (NO) you keep going, because the key is we all have cancer cells, some get activated others don't. It is the treament that is barbaric, it doesn't cure, lays it to rest at what cost, loss of weight, constantly tired from the radiaion , steven johnson syndrome, some people get sick from chemo other don't, I was able to tolerate 6 full treatments until that 6th one practically killed me, didn't know a thing for 3 days. still I am alive, worth it, maybe so. waiting for someone to tell me I'm cured (NO) waiting for someone to tell me it's in remission yes. Pet Scans, blood work, chest x-rays, scopes monthly for 3years after treatment, worth it yes, cost prohibitive yes ( unless you have insurance) .