tongue cancer - reoccurance

Sam999

Hi All,

 

After 9 years  my tougue cancer is back. I just got the biopsy result today and made all the follow up appointments.

 

Anyone went thru reoccurance? Any advice? I know second time around options are liited.

 

This group helped a ton my first time around.   I am so grateful for this group. 

 

Thanks,

Sam

wbcgaruss

Sam I Don't Think

They called any of my episodes a recurrence. But I had throat cancer in 2013, a small spot on my tongue about 5 years later, and lymph node cancer about 1 1/2 years after that. The throat cancer and the lymph deal were tough on me. Especially the lymph cancer as it was outside the node so they had a more major operation to do. Since you only had it once and this is your second your options are better. I don't know the extent of your tongue cancer you don't say but I would say surgery as the first option and hold back on more chemo and rads unless really needed. My tongue cancer spot was small and I did not lose much and the doc got clear margins and left it at that, no follow-up chemo or rads for the tongue. I was radiated twice around the head and neck area although they try to avoid it and I agree fewer rads is better who really wants any of this stuff. Hope this helps just trust in your doc and cancer team and you can do this. Let me/us here on the forum if you have any other questions. NEGU (Never Ever Give Up) Take Care-God Bless-Russ

ProustLover

wbcgaruss said:

Sam I Don't Think

They called any of my episodes a recurrence. But I had throat cancer in 2013, a small spot on my tongue about 5 years later, and lymph node cancer about 1 1/2 years after that. The throat cancer and the lymph deal were tough on me. Especially the lymph cancer as it was outside the node so they had a more major operation to do. Since you only had it once and this is your second your options are better. I don't know the extent of your tongue cancer you don't say but I would say surgery as the first option and hold back on more chemo and rads unless really needed. My tongue cancer spot was small and I did not lose much and the doc got clear margins and left it at that, no follow-up chemo or rads for the tongue. I was radiated twice around the head and neck area although they try to avoid it and I agree fewer rads is better who really wants any of this stuff. Hope this helps just trust in your doc and cancer team and you can do this. Let me/us here on the forum if you have any other questions. NEGU (Never Ever Give Up) Take Care-God Bless-Russ

Never Ever Give Up

Russ gives good advice, as always.  I, myself, hardly know what to say, as it's so disheartening that your attempts to get this biopsied sooner were not given more weight.  That said, it still remains to be seen how far it's advanced and how invasive it is.  My husband developed a sore on his tongue very near the site of original cancer.  It was determined to be a "new" cancer and not a recurrence.  It had not "invaded" deeper cells, and was successfully removed via laser ablation.  About a year later, another sore developed that met the same fate.  You will know more after you meet with the treatment team.  Maybe surgery alone will fix things up.  If not, you'll get through it one day at a time.  Please keep us posted...we wish you the best.  

Sam999

thanks

Thanks  so  much both for the responses. It is pretty scary.  I have my docotor appointments lined up over next few days. Will update this thread with information. 

 

Thanks,

Sam

Kimmy Poo

I can relate because I had cancer 6 times but not tongue cancer

Sam, Russ has memorialized my mantra: Never Ever Give Up. That's how I got through. I never went ahead of myself with the "what if?!". That's the equivalent of tensing up before a shot...it hurts alot more that way. Hubby Bucket is on day 10 of post treatment. Baby steps with the healing. Hellish there for a while. Now there is light; just as I promised him.

Yes isn't it great to have this Network? I wish I'd known about it when I was struggling. I am happy it is here for me now when I am struggling with cancer secondhand. I read posts to Bucket to show him that he is not alone.

That's the ticket: YOU ARE NOT ALONE

Sam999

Kimmy Poo said:

I can relate because I had cancer 6 times but not tongue cancer

Sam, Russ has memorialized my mantra: Never Ever Give Up. That's how I got through. I never went ahead of myself with the "what if?!". That's the equivalent of tensing up before a shot...it hurts alot more that way. Hubby Bucket is on day 10 of post treatment. Baby steps with the healing. Hellish there for a while. Now there is light; just as I promised him.

Yes isn't it great to have this Network? I wish I'd known about it when I was struggling. I am happy it is here for me now when I am struggling with cancer secondhand. I read posts to Bucket to show him that he is not alone.

That's the ticket: YOU ARE NOT ALONE

thanks

Yes this network and all helpful people on this blog helped me get thru first time around.  I am sure everyone will be there for me thru this next time. I was much stronger first time around. Now that I have gone thru it once, I know what it involves and losing my strength a bit. BUt encouraging words like yours helps a lot. 

 

THanks

 

Ateret

I Am New Here

Hi, everyone.  I have had 4 surgeries for tongue cancer, from removal of some squamous cells (first surgery; 2017) to reconstruction of one side of my tongue (last year).  That was a big one because I also had the lymph nodes removed from my neck on the side where the tongue reconstruction was performed.  I had a feeding tube in for awhile and had to spend time away from home post surgery in a rehabilitation unit.  Once I recover from surgery and the aftereffects, I find that going back to my regular routine is the best thing I can do for myself.  It was more difficult this last time, not only because it was such a major surgery but also because of Covid.  However, I have been doing my best to establish a new routine.   I hope this is helpful.  Wishing you the best possible outcome.

wbcgaruss

Ateret Welcome

To the forum. We are always glad to have a new member, unfortunately crappy circumstances are what bring them here. I would rexcommend you take a look at the Superthread at the top of the page if you haven't done so already, lots of info.  I am sorry to hear of your many cancer episodes and with your last being the toughest. So you are arriving here already a veteran and I am sure you have a lot of good advice to share. I think we all agree with you, get back to as much of your regular routine as soon as possible. You have a great attitude and are an inspiration-Wishing You The Best-Take Care-God Bless-Russ

MJG1

Back Again- this is the wife

Five years ago in July my husband was diagnosed with Squamous Cell Carcinoma RIGHT base of tongue, tonsil, and a few lymph nodes all on the RIGHT.  He was treated with two types chemo and 35 rads and was all clear by Jan.  It was hell as those of you have traveled that path know.  Life has been good.  During the pandemic he developed a sore on his LEFT side of his side of the tongue.  The Dr. didn't think it was cancer, but it proved to be and he had surgery to remove it and care was taken to get clear margins.  After the original treatments 5 years ago he continued to have some pain in his left ear, estation tube, and jaw area and that pain continues to this day.  He had a soft tissue CT on July 8 of his head and neck and nothing showed up.  We're going back in to see his ENT on Wed. to see what we might do.  The tongue has healed, but looks to have some white spots on it and that pain he has daily is sad.  Maybe it's going to be residual pain from radiation?  We just don't know and it seems to be increasing in severity.  Thanks for reading and caring.  If anyone has had a similar experience I'd love to hear.  Thank you and God Bless. Margi

LitlCJdoll

MJG1 said:

Back Again- this is the wife

Five years ago in July my husband was diagnosed with Squamous Cell Carcinoma RIGHT base of tongue, tonsil, and a few lymph nodes all on the RIGHT.  He was treated with two types chemo and 35 rads and was all clear by Jan.  It was hell as those of you have traveled that path know.  Life has been good.  During the pandemic he developed a sore on his LEFT side of his side of the tongue.  The Dr. didn't think it was cancer, but it proved to be and he had surgery to remove it and care was taken to get clear margins.  After the original treatments 5 years ago he continued to have some pain in his left ear, estation tube, and jaw area and that pain continues to this day.  He had a soft tissue CT on July 8 of his head and neck and nothing showed up.  We're going back in to see his ENT on Wed. to see what we might do.  The tongue has healed, but looks to have some white spots on it and that pain he has daily is sad.  Maybe it's going to be residual pain from radiation?  We just don't know and it seems to be increasing in severity.  Thanks for reading and caring.  If anyone has had a similar experience I'd love to hear.  Thank you and God Bless. Margi

Cancer returns...

Hello MJG, And others fighting with this cancer returning

I have Stage III Recurrent, HPV Negative HNSCC. On May 18, my Beau passed away with Stage IV HPV Positive, and his metastasized very early to his Liver ( 6 tumors there) and to spinal vertebrae, right hip bone, and around his gall bladder.  Just because its HPV caused doesn't mean it won't metastasize. Unfortunately.

My recurrent and New tumors have been HPV Negative.

2016/2017, mine started in right lateral tongue. It spread to Consume the entire length of tongue:: Actual tumor size wss 6.3 Centimeters by 3.1 Centimeters wide by 2 Centimeters thick. Huge monster. It completely Paralyzed the tongue. I could not extend the tongue, could not lick my lips... Began aspirating because no tongue movement translates into no control of food/ liquid bolus. Dropped weight.

Long story, lots of hospitalizations with literal starvation and weight down to 64 pounds. Yeah, that's low.  Pneumonia, etc. They put my G tube in first, and because they could Not get down my throat to install it the traditional way ( because the tumor blocked back of throat)-- they put it in by 5 incisions in abdomen, Laparoscopic surgery.

By surgery day April 25 th,2017 the tumor had blocked my breathing. Everyone was telling me my skin was grey/ blue. In fact for months I had not been able to lie down because that large tumor blocked my Airway.

They did not know if I would survive, being 64 pounds and lungs not good, etc. Surgery was 7+ hours. First was my Tracheostomy it so I could Breathe! Then,  Subtotal Glossectomy, Tonsillectomy , rim Mandibullectomy ,  ( extracted teeth), cut out my Bilateral submandibular Salivary glands ( because the tumor had invaded them too) They did those through my Bilateral Neck dissection 55 nodes out of Right neck and 25 out of Left neck...They cut a 16" incision from left back under my shoulder to build tongue Flap.

There was a Chyle Leak during surgery...and I had to have several units of 0 negative blood. Etc. Several days in ICU. They would not let my family in for a day or 2 ( this was 2017. Nothing to do with COVID.)

 

Okay, Pathology report showed HPV Negative. Posterior Margin Less Than 1 Millimeter. That's not a clear margin. Its way way too close and my R O. told me its not clear, its a Grey area...

Also I was positive for PNI, Perineural Invasion.

So, the 3 problems which set me up for my recurrences and New Primary were the " less than a millimeter margin" and the Perineural invasion ( that's when the cancer hijacks the nerve cells. It then jumps around that way ) and the huge size of that tumor.

After weeks inpatient, I went home and less than a month back in with another Pneumonia, and Sepsis secondary to the pneumonia. 

Okay, then with 4 more months, my tumors were already back. 3 found in the next surgery. And a previously benign grown had devolved into SCC.  Then a month and half later, an aggressive Base of Tongue tumor which had ulcerated and it extended down to my Suppraglottic Larynx.

By this time, my oncology surgeon had written in his clinic notes that " She has disease which cannot be cured"

66 Gy of IMRT/ VMAT radiation treatments and I was admitted twice during treatments for Pneumonia again, etc.

9 months after Radiation, a very fast growing tumor came up in Floor of mouth and it grew deep, then it decided to invade my tongue Flap too.

Do you have any idea how much I hate writing this stuff?

2 more  " very extensive" surgeries and I begged my R O for more radiation. He denied me, saying too dangerous for my Carotid Artery.

My tongue/ tongue flap is largely gone.  I haven't experienced food in 4 1/2 years. I cannot cover all my surgeries/ admissions but I just had pneumonia #5 this June and it wss Bilateral ( Double lung) pneumonia. Bacterial, from a drug resistant strain of E. Coli. At some point I apparently aspirated my stomach contents . ( it happened in 2019 too. I cannot keep track if this one was #5 or #6 ??)

My weight now is 71- 72.0. Can't get it to move at all.

Oh, but I'm okay.  I take things day by day.

I very much miss my boyfriend Randal, who died in May from this cancer.

I enjoy cooking and baking for other people .

A key is having enjoyable hobbies and also showing Gratitude. Find your new niche.

Pain? Yeah, ...sore throat 24/7. Chronic mucositis, thrush, Leukoplakia . 2 areas of Moderate dysplasia ( at vocal cords).  EGD/ Dilations every 4-8 weeks, do so I can swallow liquids. Irreversibly damaged lungs, Liver disease .  I have never ever smoked and I do not drink. No history of it.

Try to relax and be cool and pragmatic.

Its a hard life but hey, somehow I'm still going! No caregiver, --- and I drive myself everywhere ( except surgeries!)

Everyone, take care and stay Vigilant.

Crystal

Worry less. Take action more.