Hi, I'm 48 and was diagnosed with tongue cancer (squamous cell carcinoma) in February. None smoker, non drinker,no risk factors. Had a hemiglossectomy with neck dissection (lymph nodes and salivary glands--cancer free) beginning of March. Pathology results had shown a spec of cancer still, so had a second tongue surgery. Had a bit of rough time after 2nd surgery, but turned it around very positive outlook since. I'm very fortunate in that I haven't needed radiation or chemotherapy, my speech is, by everyone else's account, excellent (including speech therapist). Had follow-up appt after first PET scan today and still showing cancer. Surgeon examined and did not see any signs of cancer. Assured this is common to get a positive read after surgery. But I can't help being a little apprehensive about this and with all the tingling and slight throbbing in my tongue. Can anyone share any similar experience and insight? Thank you.

Welcome to OCF! Im sorry you have the need for our group but its great that you have found us. We will help you with info and support.

Yes, a false positive PET scan can happen. Ive gone thru that myself. Usually false positive PET scans happen when they are done within 3 months of having treatment. Getting a false positive result can be nerve wracking and can really give the patient a good scare. Any residual swelling or inflammation can make a PET scan light up with a false positive result. An oral cancer tumor is not able to be detected just by looking or even with a thorough exam. Sure a doctor can suspect or even guess but honestly, even an experienced doctor isnt able to identify a few stray cancer cells with the naked eye. What type of follow up do you have after this test?

Your tongue is healing which is why you experience tingling and throbbing. Recovery from your type of surgery can take many months, even up to a full year. Think of all the tiny blood vessels that are involved and how the tissue must grow and evolve, it takes time. If you are in pain, ask for pain meds. Neurontin also known as Gabapentin works very well on nerve pain which it sounds like you are experiencing.

If you have doubts about your PET results and how your after care is being managed, seek out a second opinion at a major comprehensive cancer center. Surgeons always want to operate, radiation oncologists will always advise rads. Best to get a whole team of experts together and use the team based approach to determine what avenue works best for your individual situation.

Best wishes!

Thank you so much for responding! I am confident in my surgeon, I'm being seen at the Univ. Of Penn and they have been very good to us. It's just something I don't have a lot of knowledge about and really never thought I'd be tackling since I have no risk factors, no family history. It seems to be more common than I expected.

I am scheduled for an MRI in 6 weeks, and then another PET scan 6 weeks after that. Really praying and hoping they both come back clean. I thought exactly what you wrote about the exam. But the surgeon has done thousands of these surgeries,so I guess I need to trust his judgement again. I had no misgivings when we initially met with him and he was my second opinion. Locally, the gen. surgeon wanted to remove half the tongue down the middle and radiate.

And I'm am very glad to hear your confirmations about the tingling. This is what I've suspected all along and the surgeon and speech therapist have confirmed a few times. The feeling is sometimes reminiscent of the tumor so I wonder.

I haven't needed the pain meds for about 7 weeks, but I may start them as needed if it keeps up. I guess as time passes and the swelling and numbing decrease slowly, I will have more discomfort for a while where the flap was connected and I am consistent with the speech therapy exercises.

The visit today really has scared me as I was feeling so fortunate and forward thinking, positive. But this kind of knocked me down a notch. I just needed some reassurance from someone who has been there before me. There are no support groups in my area for this type of cancer so I truly appreciate you responding to my message.

I know I am extremely fortunate to not need RT or Chemo. I hope not to ever. I even feel a little guilty about it, but so thankful.

Tomorrow is a new day and I am determined to get right back to living for the day, my family, and accepting that it is what it is, I can only change those things that I have control over, and those are few things in life.

[quote=Zia Lina]Tomorrow is a new day and I am determined to get right back to living for the day, my family, and accepting that it is what it is, I can only change those things that I have control over, and those are few things in life.[/quote]

Sounds like you are right back into living. Keep it up!

Do be viligant and watch carefully.

Thank you for your support! I am trying to live as normal as possible and thankfully,it's not much different from before. Have been a little depressed this afternoon, but feeling better now.

I am trying not to drive myself crazy with worry over every sensation I feel, but I will absolutely be vigilant about any intense throbbing or visible changes anywhere I can see in mouth, anywhere really. 6 weeks seems like a lifetime to wait for the MRI....I wish I could find out NOW! ""Can't always get what you want"....I have 2 teens (13 & 16) to fight for, so I think of them and my husband when I feel a pity party coming on..I..suspect most people dealing with cancer have a pity party at some point.

Hi Zia,

Welcome to OCF and sorry that you need our support. I was around your age when I was first diagnosed and had two teenagers also.

It is common to get a false positive with a PET scan for a few months after surgery (I did). In my case it was in my lymph nodes and I had a FNA (fine needle biopsy) which takes a sample of the lymph nodes. This test came up clear, and a few months later I had another PET which was also clear. I was told to wait 3 months between PET scans.

My tongue has not been "normal" since my first surgery, with tingling, pain, sores, etc. So what you are experiencing is common but still caused me many sleepless nights. I'm sure having two teenagers will help keep your mind off of your problems. I know it did for me!

I live in PA also, and had gone to HUP for a 2nd opinion. It is a good hospital and if you are being treated by Dr. W he is very good. A few OCF members have been treated by him or at HUP. I also had gone to Fox Chase which is also a good hospital. I have had 4 surgeries - 2 locally and the last 2 at Johns Hopkins (really great place).

It is hard to find a in-person support group for H&N cancer. I have found the OCF forum to be a better option since it is open 24x7. It does help to meet other survivors, and one option is to attend an OCF event. OCF volunteers hold OC awareness walks throughout the country, and there are a few coming up this fall One is in Bethlehem, PA on 9/27 and the other is in Andover, NJ on 9/21. There will be a number of OC survivors at both events. For more information, check out the "More Ways to Help OCF" link that should appear in the upper right corner of this page.

Wishing you the best!

Hi Zia

I've had similar stuff to you. You will heal. Things DO get better but it takes time. You have to use that time to be caring and compassionate with yourself. This is a journey, which improves xxx

Thank you so much for your response and good wishes! I am so glad to hear from people who have been through this also. Although, I do have to say that it is a little scary to see so many recurrences. I have really been thinking that I had gotten through the worst of it. And because I didn't have any of the risk factors, had been reassured about recurrence.

I'm so happy to hear about Dr. W. At HUP! I do feel confident in him, but it's just so scary knowing so little about this type of cancer. You've really put me at ease about the care I'm receiving and the PET scan.

We have friends/family in the Plilly area so we went with their suggestion of HUP. They work in the medical field and have many friends from the area who they've referred there. It was really my friend (who is also my sister in law--we married brothers) who referred us there through her contacts from referrals for cardiac patients. I have thought about John Hopkins also. Will consider in future if necessary.

Thank you for the info about OCF. I will think about it and check with my husband how far the events are. It would be great for us to meet with others in similar situations. My husband could certainly use some support also.

So now I'm thinking that the sensations in the tongue and increased discomfort I'm experiencing (because feeling is coming back? Due to numbness decreases?) May be permanent?
These are the things I'd like to know more about. I guess I need to look around the site more.

I was a little depressed today. But I kept thinking, what is really different today from yesterday? Nothing but my state of mind and attitude. So, life goes on. Still afraid of what is in store for me in the future. Hoping to put it further back in my mind soon and get back my good mojo. Sorry if I share too much, need to get it out. Thank you again.