Hi everyone, this is my first post. As my signature indicates, I was treated for tongue cancer starting back in September of 2012 with a partial glossectomy and reconstruction. A PET/CT scan in March of 2013 showed no signs of cancer. Things were going great until the last few months. I started to have intermittent pain, but it did not seem too bad, and the doctor thought it might have to do with nerve regrowth. On this last visit, my radiation oncologist ordered a follow-up PET/CT which showed a significant tumor in the middle of my tongue toward the back. It also indicated some activity in two lymph nodes in the right side of my neck, although they are not enlarged.

The surgeon who reviewed the scan and presented it to me was shocked to see evidence of cancer go from nothing to something of this magnitude in so short a time period. He plans on performing a biopsy on 1/3/14 to confirm. Needless to say, I am reeling. I am hoping by some miracle that the scan is a false positive, but I know that is probably a vain hope.

Assuming the biopsy proves positive, the next step will be a total glossectomy and removal of the lymph nodes on the right side of my neck. I am not even sure how to cope with this news. I have been coping quite well with the partial glossectomy, but it sounds like the total glossectomy is a whole different ballgame. I keep searching the internet for good news from full glossectomy survivors. It's there but pretty thin on the ground it seems.

I would love to hear some encouraging words and advice on how to cope. Thank you.

Roger, I'm very saddened and shocked to read your post. I can't even imagine what you must be feeling right now, but be assured that every one of us here on the forum is with you in your battle.

There are total glossectomy survivors here and I'm sure they'll be along to offer you expert advice and support.

I'm going to leave it to them, but I'm here for you to lean on at any time.

Sending all positive vibes your way.

Ditto what David2 said. - hopefully they will treat this aggressively. Are they talking more rads? hugs and best of luck also hoping very much it's a mistake.

Hello Roger, I know too well how shattering a recurrence diagnosis is. I want to tell you that you will get through this and that you will be ok.
My Husband Kris is 21 months post his total Glossectomy / total laryngectomy.
Kris is doing very well, as will you. I'm not sure exactly what you want to know about life after this surgery, however I will tell you that you will eat and you will talk.
If you have specific queries please ask and I will try to answer them.
Just know that your life will still be good and bring you a lot of joy. It takes time to adapt to your new "normal" , but you will get there.
Tammy

Thank you all for your support! It's great to have this wonderful community to turn to in such a time of crisis.

Cheryld, they have not mentioned rads yet. I would not be surprised to go through another round of radiation, maybe with chemo added in this time.

tamvonk, that is very encouraging to hear that your husband Kris is doing so well. It gives me hope. The adjustments I've had to make to my life to accommodate the partial glossectomy which I thought were such a burden seem laughable now. I will face what comes and try to keep positive.

Hi Everyone,

Well, my hopes for the coveted false positive were dashed today. The biopsy confirmed cancer in the base of my tongue and in one lymph node. The good news is that a very thorough examination and review of the scans showed not a speck of cancer anywhere else. I am scheduled to see the team on January 7 for scheduling of the surgery. The surgeon hopes to move quickly with it. To fast track me, they made sure the preadmissions testing for the biopsy and scoping was exhaustive enough to cover the full surgery, so that part is all completed. I just have to step into the operating room.

Even though it's not the outcome I was looking for, my anxiety level is much lower than during the couple of weeks running up to the biopsy. I was going crazy with the uncertainty. At least I know now what I am facing and I can stare the enemy straight in the eye. I bounced back from the surgery in great shape the first time. This is certainly more involved and will be harder, but I know I can get through it! My family rocks and is already right there in support of me.

Roger C. I'm sorry to hear, but felt the same up to all my recurrence diagnoses, and had relief once I knew, and what I had to do next. This is still treatable by surgery, as the first line for recurrences, maybe a flap for more radiation or chemoradiation to follow. If your facility does a resection, flap, with high dose Brachytherapy or HD-IORT, as boost, followed by radiation or Chemoradiation is effective for recurrences. You may want to hit this as hard as you can while you can. Were you ever checked for HPV? The oropharynx could have been the primary all along? They can do it from this and past biopsies also, but may not change any treatment strategies. I still don't know myself, 4 years later, but suspect mine is HPV involved.

Good luck with your surgery consultation, and everyone here is behind you for support.

Roger, Im so sorry you are facing a recurrence. I admire your go get 'em attitude. You are right, its so much better knowing what you are dealing with so you can mentally accept it. Sounds like you have a great team who is right on top of everything.

Best wishes!

Roger, I'm sorry to hear it, but good news that you are getting in quickly.

Roger, I am glad to here your family is your rock. I prepared any questions my husband had about his surgery so he could focus on being brave,strong and eating lots.

The most impotant ofcourse is the Oncology Team's expertise and experience. I found that the nurses who helped us during our eleven day stay were so compasionate and open and that ment the world to us as we felt so vulnerable.

I asked the surgeon:
1:exactly what he was planning to take out and which part of my husband's body would be used for reconstruction.
2:how these changes would affect his every day life.
3:I also told him to be generous and make sure he did his best in taking out all he could to give my hubby clear margins. Related to this I asked if the team was using the special light that lets them see the cancer during the operation and also made sure they were doing the sectional biopsies during the operation so they knew when the skin was clear of cancer.
4: they will monitor the flap of new skin in your mouth every hour at first, then every two hours at the end of your stay. Do not rush getting out of the hospital as flap monitoring is very important. In our case they flap on my husband's left jaw was very vascular and strong. So much so that they brought in interns and other doctors to listen to the whoooushing pulse. When we where discharged his flap died within a week. You can keep a close eye yourself on your skin flap. Take photos to document its color. Touch it with a gloved hand to see that it bouces back up after you lift your finger. If your flap changes colour or consistency you must go back to the hospital ASAP, I read that they may be able to save them within 6 to 8 hours of beginning of death. In my husbands case, it turned palish white, stark white with a mushy unresponsive texture, then black and grey specs developed, it didn't even smell bad, just like stale breath. The whole thing just came out without any effort. Flap death happens rarely but I whished I would have been informed myself.

Ps: sometimes when the margin's are not clear they resect must be in cases where a resection is a quick simple resection of skin. It must depend on the complexity of the operation and weighing in all the extra time waiting for healing to be able to operate again and then waiting again for healing for radiation to start.

I asked the radiologist:
1: the type of equipment used for radiation.
What in my husband's case would be the common secondary effects he might get and how long these effects 'typically' last. This is a difficult question as there is a lot to consider such as your age and health, the location and size of treatment and your own body's responce to healing. The radiologist should be able to tell you what the main and secondary target areas are and the intensity of the treatment as well as what part of your anatomy they are hoping to spare. Eg: saliva glands

I saw on this forum that some patients get offered a drug to protect their saliva glad and that it works some of the time. I think it can make you nausious, this was not offered to my husband and I am not sure if it is part of regular protocol

Oh yes! Make sure to see a speach pathologist and a pysio therapist if you can before or right after treatment. They will asses how you swallow after surgery and befor radiation! My husband got a series of swallowing exersises and physio stretching exersises prior to radiation which has been proven to creat greater swalowing capacity in the long term.

That is all I can offer and my great respect for your straight forward positively encouraging courage!!on a personal note I got my husband to record how much he loved me on the recording system on my Iphone so I could listen to it if I needed to during his treatments.

Keep us posted and much love, Sophie

Thank you all for your support and excellent advice. I am so glad I found this site!

PaulB, that is exactly the plan as it stands at this point. The plan (pending any modifications from the coming appointment) is to do a full glossectomy with a flap reconstruction along with a neck dissection to remove the lymph nodes on the right side. The nodes on the left are already gone from the first surgery. We have not discussed rads or rads+chemo yet, but I am pretty sure that will be in my future. I had rads and Cituximab (clinical trial) after the partial glossectomy.

That's a good question about HPV. I don't know if they tested for it or not. If they did, it was never discussed. I do know they did all kinds of tests on the original tumor as part of the Cituximab clinical trial over and above the norm. Also, I think I am throwing the term "base of tongue" around too casually. The tumor is more forward than that, a little behind my wisdom teeth it seems. This is not far behind where the original tumor on the left lateral border was located. The original tumor had penetrated some capillaries, and at that time the surgeon was worried about stray cells escaping, hence the radiation treatment. It seems reasonable to expect that this recurrence is from one of those cells. That is a great question to ask, I had wondered about HPV myself the first time around.

Sophie, first let me say that your husband is a lucky man to have such a fine advocate and caregiver as you. With you handling all those details, his level of worry must have been greatly reduced. I am fortunate that my wife is also an excellent caregiver. She asks all the questions I forget to ask, and she is more frank with the doctors than I might be.

As with the first time around, I am having my treatment at University Hospitals Seidman Cancer Center in Cleveland, OH. It is a top-notch facility that I am lucky to have just 45 minutes away from my home. There is an entire floor (Seidman 5) dedicated to head and neck cancer patients with an elite nursing staff that provides superb care. I could not have asked for better treatment during my 8 days there the first time around. I expect to be a there a little longer this time and expect the same wonderful care. If not for the annoying cancer part, it would be like staying in a luxury hotel with private rooms and a great view. :-)

My flap on the first reconstruction had a strong "whoosh" as you describe. The doctors and nurses all marveled at it. Fortunately, mine stayed in place and healed nicely. It's definitely something to be cautious about and monitor as you describe.

You've compiled a list of great questions that I will want to ask. One that caught my eye in particular was to ask about a drug to protect the salivary glands during radiation treatment. I didn't know about this on my first round of radiation and was not offered it. My dry mouth has recovered quite a bit in the last few months from the first round of radiation, to the point where it is approaching "normal." If I can do something to even partially protect my salivary glands on the second round, that would be great.

Good idea too on the recording. The first time, I got around to being able to speak within a couple of weeks of surgery. It will take longer this time around, and when I do manage to talk it won't be as intelligible.

I am trying to avoid torturing myself now with "what if" questions:
- What if they (or I) would have found it sooner? Would the treatment have been any different? Answer: It was found exactly when it was and there's nothing to do but move forward. On the flip side, it could have been worse and been found later.
- What if they would have done a full glossectomy the first time around? Would it have prevented a recurrence? Answer: Maybe, but the first surgery was entirely reasonable for the cancer as it was at the time and was aggressively followed up with radiation + Cituximab.

Aww you are a supper guy I can tell you that you are surrounded by love. I asked my step brother who did some work along side cancer radiation teams and he said that the saliva drug is controversial because it can cause faster rates of cellular reproduction. I have not researched this much myself but I know that it can also cause dizziness, sweats and vomiting, what I am more concerned about would be any interactions with cancer cells. Maybe someone in our OCF would be able to answer these questions in a more informed maner.

You did everything exactly how you should have under the care of very knowledgable proffesional and you can be sure that you are going to get the best treatments and outcomes again. I wasted a couple of weeks torturing myself and have accepted that I did and my husband is still doing everything in his power to be back to living again. Go forward and be focused in the challenge in front of you, trust in your gut and do not be shy to ask ask ask!

Much love, Sophie

Thanks for the info. You are in good hands at a fine hospital, and did what was advised. I would too. Good luck.

I was just offered the salivary gland med, I have a recent thread on it somewhere. Based on the fact that not many folks here got it, and those who responded did not like it, and after reading all the nasty side effects, I am going to decline. It seems dangerous. It also messes with blood pressure, and mine is too low as it is. Anyway, it was called Amofitine or something like that, Ethyol is the other name. Hopefully you can research it.

Thanks KristenS, I appreciate the information. I took a brief look at in on Wikipedia and there are quite a number of possible side effects so it sounds like a good choice to decline. I take high blood pressure medication now, so if I quit that in compensation I would not be to worried about my blood pressure getting to low. When it comes time for a radiation discussion I'll have to ask the oncologist about Ethyol and see what he says. If it was a no-brainer I am sure it would be standard protocol to give it to everyone, so there must be drawbacks. My saliva output has recovered pretty nicely from the first round, although it's taken the better part of a year to do so. Maybe the ol' salivary glands have enough bounce to come back from a second round.