Hi
My husband is an oral cancer survivor with a recent recurrence. His original cancer in 2006 was on the right side of the tongue and had metastasized to his neck by the time he was diagnosed. He had an excellent surgeon and care team in Baltimore : had a hemiglossectomy and modified radical neck dissection followed by 32X IMRT. He was very lucky: the team declared him cured in 2010; we relocated to Virginia later that year.

Fast forward to early 2016. His dental hygienist saw a spot on the left side of his tongue. He consulted an oral surgeon and they decided not to do a biopsy. After several consultations, they finally do a biopsy in June. It's positive, and the tumor shows signs of perineurial invasion. The follow up is terrible (missed phone calls; staff on vacation) and when he finally connects with the surgeon in July she tells him the tumor board recommends a total glossectomy. He insists on second opinions and meetings with an oncologist and radiologist. He is adamant that he will not have a total glossectomy.

I finally persuaded him in July to consult with MD Anderson in Houston, and he had his consultation appointments in August. The good news was that the tumor was still small and had not yet metastasized to a detectable level on any of the scans (PET, CAT, and MRI). He had chemotherapy in August and September and returned this week for follow up.

The bad news: the chemo was only partially effective. The tumor did shrink from 16 millimeters to 9 mm, but it is still diffuse. The radiologist seems adamant that more radiation is just not possible: it is too dangerous. So, we are waiting for the final consultation later this week with the options and next steps.

I'm frustrated and angry that it took so long to get him diagnosed and into treatment this year. Nothing I can do about that now. I'm scared about what is going to come. I don't think he is going to survive this recurrence.

He's in the best possible hands at MD Anderson and they said in August that he is a long way from clinical trials and experimental therapy. That may not be the case now, after the chemo. We'll hear their options and advice shortly, but I'm interested in what people on this board have experienced and what they know. I'm hoping for a treatment course that can give him a few more years with good quality of life but I'm no longer very optimistic about it.

What have all of you on this board seen with treating recurrences and the treatment effectiveness?
Thanks for listening

Im very sorry you are going thru a recurrence with your husband. If you havent already taken your husband to a CCC I suggest finding one right away. Recurrences can move quickly so try pushing for the earliest appointment with asking to also be on their cancellation list. At a CCC they have the most experience with recurrences and complicated cases.

Best wishes!!!

Thank you, Christine.

He is being treated at MD Anderson in Houston. They are supposed to be the best in the country. They have been absolutely wonderful! I'm sorry we didn't get him there in June instead of August.

They told him before he started chemo that he was a long way away from clinical trials or experimental treatments. We're waiting for the next consultation later this week to see what the next steps are. He has been adamant about not having a glossectamy. The radiologist is pretty adamant that more radiation, even brachytherapy, is too dangerous for him. So we don't know what is left. More chemo? He tolerated this first round extremely well, with very few side effects and those not very severe. But the tumor characteristics are pretty invasive (it's diffuse, has perineural invasion) and it sounds like the odds of a metastasis are still very high.

We were hoping that he was going to be one of the lucky people who had several years of high quality of life left and now we are not so sure.

I'm very interested in hearing what others on the board have experienced.

Hi Caregiver,

I'm sorry you are facing these new struggles. Do you know what kind of chemo he had? Was it immunotherapy? Has his doctor talked about immunotherapy as a possibility at all? It may be worth you while to further investigate.

Hi Gloria

The chemo drugs were carboplatin and taxotere, three doses three weeks apart. The docs at MD Anderson mentioned immunotherapy at the first consultation but weren't ready to go there yet. Maybe they will be after this first round of Chemo. We'll have to wait and see what they say at the next consultation later this week.

They aren't talking about timelines yet. The tumor is still small. Maybe they can keep it at bay for some years. I just don't know and my bet is that they don't know either. No guarantees, just hoping for the best

The fact that immunotherapy has been mentioned is a good thing. That is something the doctors can go to if need be. One member on the form has been given immunotherapy and has had a good response. You may want to look up larry6905 and read what he said.

You are correct, MD Anderson is one of the countries top CCCs. Your husband is in good hands with some of the top specialists. You still may want to check into another CCC if for nothing else than to hear a second opinion.

I thought of something else that might be an option. Are there any trials that he could get into? Its worth looking into. We have had several members who did very well the the new Optivo chemo when it was trialed. That chemo is for mets to the lungs, Im not sure if it works for other things or if it could be an option for your husband. Ask his doctors if he could benefit from trying it.

Hang in there!

I had Perimeural Invasion, PNI, a number of times found through biopsy. Most were treated with surgery, Chemoradiation, but when it wasn't I had recurrences once to the epidermal layer of skin. Evidence suggests PNI to be a risk of local-regional recurrence, metatastic spread, and reduced survival, although it's not fully understood or sgreed upon. PNI, which is microscopic, is basically unseen by scan, but MRI is used to see the tumor extent, and PNZo is almost always an indication got adjunct radiation like IMRT, but it's uncertain what roll chemo has with PNI.

Sounds like the chemo used was a form of induction chemo, which is used to sensitize the tumor for radiation, reduce the tumor burden for surgery, but time, sometimes eliminating it completely, but this response usually doesn't last, and tumor will likely return in less than a year, and in my case, after a complete response, it did, although my tonsil tumor never did. I'm not sure the intent MD Anderson had, but likely had something to do with the refusal of any surgery. Chemo alone does not cure this not does immunotherapy, although durable responses have been shown.

Surgery is usually the first option with recurrences with or without radiation or Chemoradiation. Not sure why a total glossectomy was recommended if the tumor was still small. With PNI i guess the cancer would need to be removed along the nerve line until the margins are clear.

Small tumors, T1, T2 can sometimes be treated with radiation, but as mentioned, they said no. Maybe with Proton therapy it can, and believe it can with a flap with new tissue, but that involves removal of the tumor.

In absence of surgery, I'm not sure what else can be done curative, except palliativly with more chemo, probably different than used begor or maybe an EGFR Inhibitor like Erbitux, where some are on
maintenance for years, and maybe immunotherapy down the line, as mentioned.

Good luck with everything.

Thank you all for the responses and the kind wishes.

PaulB, I know just how bad this tumor is and that it will kill him if he doesn't get treatment other than chemo. I think his medical team hopes to shrink it enough to do surgery that isn't too invasive and we'll find out whether that is possible at the consultation. The thing that makes the surgery hard is that the tumor, small as it is, is really irregular (diffuse). My husband had a hemiglossectomy in 2006. He isn't willing to live with less functionality than he has now. So the question is whether there is a surgery that is less invasive than a total glossectomy and possible.

Christine, I read just yesterday that the FDA approved a new immunotherapy drug, Keytruba, for head and neck cancer recurrence that seems to have a good response. I will definitely ask about it.

If we can't get a cure with surgery or radiation, I am hoping they can keep him relatively healthy and comfortable for some years with chemo and immunotherapy. I know it's a long shot but he beat really long odds with the first cancer in 2006.

Thank you Caregiver, as this explains the situation better. I should have read your profile, and see the prior hemoglossecyomy, but I'm working with my iPhone, and can't see a thing sometimes. Sounds like MD Anderson has a plan to do Chemo in hopes of surgery later on, including what the patients preference is.

Not sure if it was mentioned or is applicable, but there is Transoral Laser Microsurgery (TLMS) that is less invasive than other surgeries, and may not interfere with other treatments. .

Good luck

Caregiver, my Husband Kris has had a total Glossectomy ( along with a total laryngectomy etc.) this was for a recurrence and was considered salvage surgery. Kris had no other treatment for this recurrence and is NED 4 1/2 years later.
Was it hard, of course it was. Kris too initially refused this surgery, but after reconsidering and listening to my pleas and cajoling , outlining all the good things In life and reasons to live for, he agreed to go ahead.
Neither of us have any regrets. Kris has a good quality of life and is by no means an invalid. He swallows all his nutrition , though it is only liquid. He does talk despite also having no voice box. He is very active and looks after our 3 acre garden by himself. We travel overseas and this has proven to be no problem.
Kris has seen our Son get married. The birth of our first Grandchild. Life is good.
If you want to ask us any questions , please do.
I know this is difficult for you and pretty soul destroying. Believe me, life is still good after a total Glossectomy.
Tammy

Tammy

Thanks for sharing your story. There is more to life than eating and drinking - but he is a true foodie, so giving that up will be pretty devastating.
We are still waiting to hear from MD Anderson about the treatment options and next steps. My instinct says that if there was an easy solution we would have heard it by now. So, I'll keep working on my husband about considering the surgery, but it is ultimately his decision.

Maybe this will help your husband to look at his situation with a different perspective. In 2009 I was diagnosed with my third round of OC in 3 years, Stage IV with survival odds being very slim. My doc told me to get my affairs in order. Being a single mother of 2 teenagers I figured the end was near and all I could do about it was to prepare my children for life without me in the time I had left. If it wasnt for Biran Hill telling me there really were some 3 time OC survivors still out there living good lives. Also, the kind members of OCF are who gave me the final push to get treated. They told me that I couldnt quit without even trying. They were 100% correct (also brutally honest)! Without Brian and all the members who bombarded me with pleas to get treated, I would not be here today. Its now over 6 years later and Im still here and Im so thankful for every single day. Yes, I have many "issues" and the surgery left me disfigured but I dont regret being treated in 2009. I do understand 100% about not wanting to have any more invasive and quality of life changing treatments/surgeries. But a good life isnt only about what someone looks like or has for dinner. I hope somehow, someway a treatment your husband is ok with will be an option for him.

Best wishes with everything!!!!

Diagnosis for a recurrence is frustrating once so many years pass. I'm sorry your husband is having to revisit the same systems and scenarios he successfully managed in 2006.

The concept of a full glossectomy would be exceptionally tough to deal with. Particularly, after he has gotten used to the limitations resulting from a hemiglossectomy.

If he decides to not have the surgery. Your husband should consider how, as the tumor grows, his current functionality will most likely be adversely impacted. He will very likely end up dealing with the same issues as he would have with the total glossectomy.

There are no easy, absolute, clear choices.

We heard from MD Anderson today. The surgeon proposed a less invasive surgery to attempt to remove the entire tumor. It does not involve a trash tube or cutting through the jaw. The only question is whether he will truly be able to remove the entire tumor: the tumor boundaries are not at all clear, and the MRI is only so accurate.
My husband is going ahead with the surgery. We are waiting to hear a date: could be as soon as this week.
Keep your fingers crossed that this surgery is successful. The next step after this is the total glossectomy. I'll check back in when I know more.
Thanks again to everyone for the support and the information.

Caregiver,

At least the surgeon is willing to take your husband's wishes into consideration and he's not a "my way or the highway" kind of doctor. Take it a step at a time, maybe the doctors will come up with something more if they can't get all of the tumor. Best wishes and I will keep the two of you in my thoughts.

Caregiver, that is great news. I do hope the surgery is soon.
Please keep us updated as to the plan and how it all goes.
Thinking of you both,
Tammy

Still waiting on a date. Husband emailed MD Anderson on Thursday and will follow up with a phone call tomorrow.
On the bright side, he feels pretty good physically. He is exercising and we have been out to dinner twice this week.

Waiting is the worst, and good you're following up with a phone call on Monday. Exercise is a good idea to be physically fit for surgery, and a faster recover, besides helping relax.

Good luck

Surgery is scheduled for Nov 22.

I have a ton of questions for the surgeon and medical team that my husband didn't ask:

Is there still a possibility of a cure or at least a long term remission?
How much will this affect his ability to eat and speak?
How long will the recovery be? They said he could fly home on Nov 25!

I will keep you all posted

Caregiver,

That's one step forward.

Write down your questions in a notebook and pull it out as soon as the doctor comes in and announce that you have x number of questions that you will have to ask. I have found this strategy very useful; they know they can't just brush me off and that I won't go until I have gone through my list of questions.

Good luck with surgery on the 22nd! I'm pretty sure if the doctors didn't think there was possibility of a cure, surgery or any other curative type treatment wouldn't be offered.

My husband is resting comfortably recovering from his surgery. We spoke via Skype last night. He said he ate some applesauce. That's huge: he's speaking and eating.

I'm encouraged to see him looking so well. The results of the operation are tentative pending the full pathology report but the surgeons say they removed two small areas from the right side of his tongue, both with negative peripheral margins. The interior regions that they removed had low density of cancer tissue.

He is having an MRI shortly, and then they are discharging him to the on site hotel today. More follow up tomorrow. Please keep your fingers crossed for the MRI results.

Thanks all for your support and Happy Thanksgiving!

Thanks for the update, it sounds encouraging.

We are still waiting for the full pathology report and MRI results, but have some concerning news. There are three samples still in pathology, and the operation report talks about both positive and negative margins on one sample.. We think the surgeons stopped cutting at the end because they hit some prearranged boundary that would remain minimally invasive and leave my husband with a functioning tongue. We don't know when we will get the results, or what the options are if one is positive.

On the bright side, he is recovering very well from the surgery. He's eating soft foods and doesn't have much pain. Keep your fingers crossed for us

Dear Caregiver,

While the operation report may raise concerns, you won't get the whole picture until you've got the path report. At that point, the doctors may have a treatment plan to offer. After all, MD Anderson is one of the best facilities to be treated at. The doctors there know what they are doing, put your trust in them.
I am keeping both of you in my thoughts.

Thanks, Gloria. I am trying to focus on the positive this weekend. He has improved significantly this weekend in both eating and speaking, and he has no pain from the surgery.

We will see what the pathology report says and, if it is not clean, what the next steps are. I'm still holding out hope for a long term remission, if not a cure.

Either way, we are going to take the vacation trip we have planned for the third week in December!

Good morning

WE finally connected with the surgeon yesterday to review the pathology results. He confirmed that my husband is cancer free after the surgery. They still consider him high risk and want him back for a scan in 3 months.

This is the best news we could have hoped for. He can eat most things and his speech is not much changed. So far, a good outcome for him.

Thank you all again for the support

That's wonderful to hear!

Best news possible, congrats all is going well!