Susan,
I don't know if this works for MRIs and Pet scans, but when I have CT scans,I always ask the radiation technician for a copy of the disk and report before they run the scan. Usually takes about a half hour for them to make a copy. Then you can take it Sloan or wherever. There is no charge for this at HUP.

My only symptom the first time was a swollen lymph node in the neck and my ENT was almost positive it was cancer from the feel of it. He did do a fine needle biopsy to confirm it. At this point, get your second opinion from Sloan. You want to be where the best treatment is.

Have hubby eat as much as he wants now. Try Ensure Plus rather than the regular Ensure. It tastes better and is 350 calories rather 200. Also David keeps touting Carnation VHC which is 560. More calories per swallow. This becomes very important later in treatment.

Take care,
Eileen

Welcome to the board. You have gotten a lot of infor here. I reallyu do not have alot to add, but make sure he eats as much as possible now, and anything he wants. Let us know how the biopsy comes out. I know this is a time of uncertainty. I just completed my treatment and this place was wonderful to get me through it. You both will be fine. Just make sure you get the best cancer center you can. I will keep you in my prayers.

Hi Susan and welcome....I see lots of great answers here....just one quick note. If your husband doesn't like the taste of the Ensure Plus, you can make a milkshake with it. Changes the taste a bit and you can add other stuff to it to boost calories as well. I'm sure there are some great ideas on this in one of the other forums but he needs to eat everything now he wants...make his favorites, go out to dinner, etc.

Cheryl

the comment u made about being able to put on lbs just by standing by the bakery made me laugh.
in trying to aggressively put weight on andy before his rads started, i managed to get 10lbs on him and 15lbs on me...geez!

now he still needs to gain weight...and im on a diet

its amazing how the diagnosis changes what is really important. i used to be a fanatic about dusting...now i feed my dust bunnies

If you were to ask every HPV+ SCC patient I would guess a very large percentage of them would tell you that their only clue to something possibly wrong was a totally painless swollen neck node. Many, if not all, of their first doctors put them on a dose or 2 of antibiotics before they eventually had a biopsy and found out they were Staged a III or IV. While the staging of HPV+ SCC patients may one day consider the current response to Tx or the Tx itself may one day be modified to take these studies into consideration remains to be seen. I myself was told by a well respected MO and I quote as he shook my hand " Congratulations, you don't have cancer!" If it were not for my persistant wife I may have found out to late.

It's such a relief to have found this place. We had a very nice escape since last night but now at home I can see both our moods shifting. We are calmer but I still get that punched in the stomach feeling.
Reading the posts here I'm trying to get a better attitude of understanding we may be facing a long process and we will need to have our wits about us. Blind panic doesn't help. Nonetheless it comes and goes.
Tomorrow is the MRI and the day we will also call to make appts with other DRs. We are completely sure that anyone who is more nervous than us when presenting news---does not inspire confidence.
So, a few more questions(I am trying to do searches before I ask so people don't have to repeat themselves. I know when you are on a board for a long time it is tiresome).

1. If the DR was so sure of node involvement on both sides should we have requested a needle biopsy immediately? should we be requesting one now or will the MRI serve the same purpose.
2. how common is it for oral cancer to spread to other parts of the body(the literature confused me on this). I get that the node involvement is common but what about to major organs?
For example, I noticed that Brian said he had bilateral cervical metastasis. I wasn't quite sure what that was and I always associate the word metastasis with spreading through the body.
3. I know skin cancer is somewhat easy(compared to other cancers) to diagnosis through sight. Is that true with this also? Is it often very recognizable? Perhaps that's why this Dr was able to tell us with such certainty.(still don't like his style though). Although we spoke to an MD friend of ours and she was very surprised we were given such a dx without the lab report(and I noticed folks here emphasizing that as well).

I find it amazing how easy it is to get missed with this. As I mentioned earlier Dave went to the Dr because he had this huge(and I mean huge) gash in his tongue. Since he stopped smoking(the second the Dr told him too but only 4 days ago) the gash(for lack of a better word) has started healing and receding. Given what it is now I don't think he would have had it checked out. We might have waited to see what happened and as it continued to heal(assuming it does) just forget about it. Is that common???

Susan,

1. I would wait for the path results before I schedule a FNA or an MRI or a PET.

2. It most commonly spreads to the nodes especially with HPV+ SCC. I was told that it next would spread to the lungs and brain but I don't remember many, maybe only a few, that have had a distant met since I've been on this site.

3. Don't know about skin cancer other than the pictures you see on the Web but this is not a cancer that anyone can Dx with any certainty. That's why we ALWAYS tell people to get a bio and wait for the results.

Finally, I had a huge gash on my tongue post Tx, almost as if the tongue split in 2 literally overnight and mine was associated with thrush and some horse pills takes care of that.

David, we have an MRI scheduled for tomorrow and the PET scheduled for Friday. Does this seem premature to you?
when I came on here and everyone was emphatic about wait for the biopsy, it made so much sense to me. But I'm telling you it is hard to not respond to this guy's certainty and urgency.
Ok so, I'm now understanding that met can be near or far essentially. Somehow I always associated it with CA being widespread. Thanks for clearing that up.

The "gash" ( I really don't know a better word) to use is what started this whole journey. Interestingly, before we thought about CA I went on the web(not always a good place to be) and could not find a picture of it anywhere but your description is pretty good. It's on the side of his tongue towards the back and is just like a deep open cut. Like I said the not smoking has helped it to become smaller. When he first showed me, it was very visible as soon as he opened his mouth. Now when he opens his mouth I have to look with a flashlight.
I did think it was weird the Dr didn't treat it (no matter what he thinks it is) it's uncomfortable when Dave eats. That said, his appetite is still good and he is eating away as recommended.
Theresa, I totally know what you mean about dust bunnies becoming your new pets. It's all about perspective,isn't it?

cervical = neck. If it goes for the tongue to some place else it is a metastasis, to the cervical nodes/neck would be considered a local met, to the lungs, a distant met. Oral cancer does not usually kill you in your mouth, it kills through metastasis to a vital organ elsewhere.

Susan

You have gotten great advice from everyone here as well as very pratical suggestions. I agree with all of them. Again, relax, I was Stage IV (there is no stage V) advanced cancer and I'm still here. As Eileen suggested, ask in advance for a copy of his MRI and Petscan (they had to be put on a DVD not a CD for me, although the CT fit on a CD). Then you can take them to Sloan or wherever. The doctors can read them independently so you won't have to get new ones for each opinion. I sometimes had to wait a day to get a copy made.
The MRI and PetScan should provide additional information on the size and location of any tumors or cancer. Don't worry about getting more biopsies at this time. But do NOT schedule any surgery, nor any chemo nor radiation until you have gotten a second opinion instead of this doctor's.
Keep the faith
Charm