I'm doing pretty well, I suppose. My taste buds are mostly back, mucositis is mostly gone, and those suffocating saliva balls no longer exist. I am still having tough tome eating normal foods.

Part of the reason is that I still have pain on the side where radiation was stronger, and it hurts to eat. I do eat, and I supplement with ensure, but it hurts as if I was pouring salt on an open wound. The doctors say everything looks fine. It doesn't feel fine. My gums near the flap hurt, floor of the mouth under the flap hurts, and the flap itself that should have no sensation whatsoever stings. I'm off the patch and take just a few percosets a day (amusing that FDA panel recommended today banning it, but I don't care), 2-3.

Somehow I thought that by now I'll be all healed. Is this pain normal? I don't when to start worrying. I am on monthly visits to oncologists and the surgeon, so nobody is due
to see me for another couple of weeks.

Also, they are scheduling me for the PET scan for the second half of July. If I'm still in pain, does it mean that something will light up on the scan even if it's not cancer, but a spot that is still healing? I don't quite understand how it would work.

Jenka,

PETs only light up when there is cancer in there. The injection that you get prior to a PET is sugar-based, which goes directly to sugar-loving cancer cells. My hubby just had his first post-tx PET in May...it was nerve-wracking until the results came in...we had a hard time sleeping, but, all was well. Results were negatory for cancer.

Best of luck to you and as always, you and everyone here are in my prayers.

My husband finished treatments on April 15th. His Oncologist doesn't want to do a PET scan because he said there are to many false positives after this type of treatment. He wants him to have a CT Scan with IV contrast of his neck and chest the beginning of August after things have "calmed down".

Jenka,

Don't get discouraged as our recovery can and usually does take about 2 years to get back to feeling "normal", whatever that may be. The first few months are the worst and the first year is worse than the second but just be patient. Re the pain, call all your docs until you get some answers that satisfy you.

The pet scans lite up and give false positives for sure, False flashes were going to delay my last aneurysm repair. It took 3 Drs to decide the fate of surgery day.

Donna,

Pet scans don't only "light up" when there is cancer. This is the reason why there are so many false positives. Many people here have been freaked out by this and many, like myself, have never had a PET for that reason.

I thought you should know this.

Jenka,

Considering what you've been through, you are doing well. I know it's hard to believe, but it's along battle and you are well on your way toward feeling "normal".

Jerry

Jerry,

Thanks for that one...I am sorry if I said something controversial. I was told more than once about the "lighting up". I do know that T's scar tissue and staples lit up but, the CCC said that was expected. I guess it is all relative to where you go and who is reading the scan.

The healing will also exhibit a high uptake, hence the high false positive rate. PET/CT will increase the accuracy because they can geographically visualize the hot spots a little better. In most secondary readings, i.e., by the ENT or RO they will rule many areas out as a "region of interest" (ROI). The primary reading by the radiologist must include ALL anomalies and it's up to the rest of the team to interpret that information. That's why the reports from the radiologist can scare the crap out of you.

My 1st false positive was at Ohio State in Aug of 07 and it was still doing it in Jan of this year before surgery. Talk about confusion, we had plenty of it going on.Had to have more heart tests just to be sure of it and my lungs.

Wanda, its so much better to wait rather than get a false positive. Also for a PET scan make sure your husband drinks tons of water the day before and avoids sugar and carbs. He shoudl kinda take it easy too. I had a scare before I found out you need to prepare for the PET. Best of luck with continued healing.

I heard that healing spots can throw off PET, and since the areas of interest are all around the healing spots, that's why the doctors give full three months before ordering the scan so that everything would heal.

I'm seeing the surgeon 10 days from now, I'll ask him more about this and report what he tells me.

3 months is not nearly enough either.

Jenka,

Don't despair! I finished treatment last August, and I'm still not 100% healed and overall, I've healed incredibly quickly. If your docs are telling you that you'll be fully healed at only 3 months, then you're getting faulty information. Your mouth was under full assault, and those tender taste buds and other tissue need lots of time to recover. Try to be patient and just keep doing what you're doing.

- Margaret

I have to agree with Margaret and David that 3 months might be a little optomistic foe a PET, especially with all of the surgery you have had with radiation. 6 months might be more realistic. 3 months might make sense for a post Tx, baseline MRI however.

From past experience I can tell you there is nothing more terrifying than a "bad" scan report only to find out days later that the secondary reading says it's no big deal.

I do not know about PET scan results but I do know about Bobs experience in healing and at three months it was the first time he actually thought he MAY have really tasted something ..besides coffee which he was not all that fond of before treatment but for some reason was the first "taste" he really enjoyed after. So many things "burned him" as he described it or just tasted funny. It took at least a year before he was close to having most things taste the way he remembered them, and much longer before some things that seemed bland to me were tolerable him to like anything with vinegar in it even ketchup!! So do not be discouraged!! It takes a long time but it truly does continue to improve in tiny steps every day over that long time!

I would say 3 months isn't even on the score board. Sounds like a Dr is trying to ease your mind some. Just do your best, as you know you have to and the time will be here for the Scan. The Drs hate to see us worrying about these situations and trying to hurry them.

Yes, I have tons of burning! We were at a party yesterday ( hey, I couldn't even think of going to a party a month ago!, now I get tired, but I can manage a couple of hours!), and while I usually avoid anything with any type of acidity, I forgot that nestle iced tea had either lemon or ascorbic acid. My eyes nearly fell out, it burned so much. Anything tart or sour is really awful, and it reverberates in my ear and neck. I thought it was because I had open wounds, but the drs don't see it.

As for scan, my 3 months post-tx is Aug 8th. Radiation oncologist said that
everything looked so strikingly beautiful that he ordered PET for the "second half of July". I don't have a date yet, but he wrote the 15 th on the order form.

My first PET scan was at 3 1/2 months after radiation and chemo ended. Remeber everyone here is different, the location of their cancer (base of tongue, cheek, gumline, etc.), treatments, ages, medical histories and how fast they heal. I did not have surgery so thats probably why I was able to have my PET scan done so quickly after the end of chemo and radiation.

Jenka,

That must be the INNER BEAUTY we all hear about!!!

Congrats!!

A PET scan detects elevated metabolic activity in tissues. If the scan shows a "hot spot" in an area where there wouldn't normally be increased activity, it's considered a likely cancer. The problem is, garden-variety tissue inflammation also reflects elevated metabolic activity. So if your mouth is still sore, and if that's accompanied by any tissue inflammation, then you could get a "hot spot" on your PET scan that looks just like cancer -- a false positive. That's the risk of having a PET scan done too early in your recovery process. My oncologists are waiting months before scanning me. I finished radiation on June 4, and they are tentatively planning on September -- at least 3 months later -- just to make sure all the tissue inflammation subsides first. I'm sure that if I still have mouth soreness at end of summer, they'll delay scanning even longer. If you still have mouth soreness and your scan time is approaching, you may want to raise this issue with your doctors. You don't need the stress (and wasted cost) of a false positive.

Ari, that's what I thought. I don't have soreness in my mouth unless I eat or drink, so who knows what that is. I just got a PET date scheduled for the 15th, which will be just 9 1/2 weeks after the end of treatment.

I am seeing my H&N surgeon two days before that, so I will ask him if he thinks it's too early. Radiation oncologist thought I was good to go.

Got my pet scheduled for the 15th. That would be 9 weeks after the end of radiation, which seems too soon. I'm seeing H&N surgeon on Monday, and will ask him if it's reasonable.

Also, my nearest oncologist appointment is three weeks after the scan. I don't think I can handle waiting this long to hear the results, so even if they do scan me then, I'll probably try and reschedule appointments for a closer date, although I've been bumped and bumped and bumped and I don't see anyone on a monthly schedule anymore. If it's 6 weeks, it's a blessing.