Hello my newest friends!

Well we heard the news of mother's PET scan yesterday & still I'm not so sure.

The spot that was detected in the CT scan (the one in the mid chest area) turned out not to be cancer, but there was a spot that the onocologist said that showed up 'warm' he was concerned about(upper chest area right above left breast) -I thought the whole purpose of this scan was to show exactly where the cancer was, anyway- cancer did show up in the left side of neck in the lymph node & of course under the tongue.
They plan to do the surgery (to remove the lymph node & the tumor) on Dec. 9th and said that if it looked as if the he was going to take more of the tongue than he hoped to he would stop mid-way through the procedure & let us know about other options. Gosh, wouldn't that be awful to put mom through a partial surgery & it not do any good.

Does this sound normal?
Doesn't the tumor grow the longer we wait, It seems the doc is scheduling his surgeries around his holiday plans. He said he didn't feel as if this was an emergency to get this removed.
Also, we were told, sometimes the patient can even go home the day after surgery if they have no problem swallowing -this leads to my next question how many of you had this problem of swallowing?

Mom is in a lot of pain right now (only being able to eat soup, & not drinking anything cold or hot) but she still plans to have her big Thanksgiving dinner as usual.

Doc still thinks this surgery will be all she needs to be rid of the cancer -maybe this is true. I suppose I should trust his decisions & trust that the Lord will not let her go through anything she can't handle, as my mom says, all of this is just very scary. I just want to know we're doing the right thing.

I'm so glad I have you guys for support, all of you have been great & each reply makes me feel like I'm getting a big hug. Thanks to you all & each & everyone of you are in my prayers -Tina

Tina, I really hate to hear all of this right here at the holidays. Don't get me wrong this is terrible anytime of the year but the holidays is the worst. This is when I had my last surgery and radiation. I missed all the holidays up and until JULY. I cannot believe that they told you that this surgery you could go home the day after. Unless I read your post wrong. This is a MAJOR surgery and the hospital stay alone is weeks. It isn't abnormal for the date for the surgery to be so far off during the holidays either. I have never had this happen to me but I have heard of others that have had to wait. If your Mom isn't happy with the date have her talk to him and tell him she wants it done ASAP. Hey she's the boss--not him. I have learned over the years and the hundreds of doctor appts that I have been thru that I don't work for them, they work for me. It sounds hateful maybe to you, but you have to get hard or you will be waiting in their offices for hours and hours. God Bless your MOM and what she is fixing to go thru. It is so upsetting to hear that CANCER has gotten another victum. In my Prayers....Miss Vicki

Tina,

As with many scans used for cancer , the PET is not 100% thorough. For SCC it can be even less. After my completely negative result in May '04 I have had a partial tongue glossectomy, radiation from 7/15 - 9/01 followed this past week with a partial neck dissection and tongue, mouth and palate resection.
PET will do an outstanding job of identifying those high glucose producing cancer cells when compared to surrounding tissue.
Since returning from the hospital, I have been on a feeding tube (11 days) because the radiation has inhibited (not eliminated) my abilities to heal. Also my trach hole is taking longer to close.

Despite all this, I look to friends, family,church and God to help me through. My prayers are with you.

David

I agree with Vicki. I was told in advance to plan on 2 week stay in hospital. I was in hospital 14 days with my toungue resection & neck dissection! Was in ICU 1st 24 hours. This IS major stuff! You do not just go home & sleep this off! You definitely need to press these doctors & make sure your on the same page, talking the same language & completely understand what's ahead as far as treatment & recovery. I am not trying to scare you, but you need to at least understand fully what's ahead.

David, you are AWESOME!!! I am praying for you, Buddy!! Take Care and God Bless You, Carol

Hello Tina,

Did you get a second opinion at a major cancer center? If not I would suggest you do right away. Erik was right on when he said this is MAJOR surgery!!!

Take the time to research some of the older posting's, It will help you in becoming familer with this nasty diaease. Ask alot of questions of the doctors and write them down ahead of the appointments. You never remember when your there.
Hoping for the best for both you and your Mom!!!

Danny Boy

Tinaelise,

I had my partial glossectomy and neck dissection (including removal of many lymph nodes) at age 39 when I was otherwise in excellent health. After 24 hours in ICU, I was in a regular hospital room for about 4 days and then sent home because I was healing well enough. My impression is that this is about the "best case" timing -- when there are no other complications. I can't conceive of any circumstance where a patient could have this type of surgery and go home the next day.

Cathy

Tina,

I am so sorry to hear of the scan results on your mother. Is she being seen a at a national comprehensive cancer center or a major comprehensive cancer center by someone with significant experience with oral cancer? If not, that would be the most logical place to check for a second opinion. In my case, I had the primary tumor at the base of my tongue and two lymph nodes I could feel in my neck. My doctor chose radiation/chemo first because he said if he did the neck dissection, he would not have to leave as wide a narrow margin which could save more of my tongue. At the end of treatment, there was no cancer left and I didn't have the operation done. I still wonder sometimes, though, if there are small cells of cancer growing slowly that would have been found through pathology of nodes removed.

I know everyone is different but my doctor felt stage IV with multiple node involvement chances for five year survival would not go up significantly with the neck dissection. He also felt a neck dissection later could be one last defense of recurrent cancer. I had MDACC review everything. They did this on the phone with my doctor after I sent them all the pathology reports. They said they would totally concur with the direction my doctor was taking. They have a process that allows faster review doctor-to-doctor that didn't cost me anything and I didn't have to travel there.

Get the peace of mind your mother deserves and be as thorough as you can so the health team can make the best possible plan of attack the first time.

Ed

Tina, I have been having computer problems so wasn't able to respond to your original post. Welcome to the site, even though I am a little late. Am very sorry to hear about your mom's situation. Will add her to the very long prayer list. I had a modified radical neck dissection after rad/chemo treatments. I stayed in post-op after surgery until the next morning (I was operated on in the late afternoon and didn't come out of it until about 9 PM) and was then discharged. I was in the hospital about 18 hours. Now I was only 53 at the time, and in very good condition other than the cancer, so your mom may need much more time recooperating. Also, I didn't have any removal of tongue tissue as my cancer was in the tonsil and lymph nodes, so her surgery may be more extensive than mine. But it is possible to have a neck dissection and be discharged in 24 hours. Bless you for taking care of your mom.