Tongue cancer

MikefromWinthrop

Kitkat.tulsa said:

Tongue cancer

My husband had a tongue biopsy come back positive.  He has 2 enlarged lymph nodes in his neck that according to the PET scan appear to be positive.  The onocologist suggests stage 3-4a.  No idea on the HPV, they did not test originally but are going back.  Our current team wants to do surgery removing a silver dollar size +1/4" from the tongue, then Chemo and Rad.  I do have a surgeon who starte Cancer Treatment Ctrs that has said they should do chemo first to shrink the tumor then remove the tumor.  His years as a surgeon showed that tongue tumors return and shrinking via chemo was the best option.  I know protocol is otherwise and curious what order others were treated.  We are looking at going to MD Anderson for another opinion.  

I had HPV HandC cancer, small

I had HPV HandC cancer, small origin tumor, less than 2 centimeters on back of tongue, and 1 lymph node involved, it apperaed overnight when I got an infection, how I found the cancer. I was treated at beth israel in Boston, MA, I wanted the node cut out first, but doctors said chemo and radiation first. Now I am having the node removed in a neck dissection because it is shrinking, but slowly. The doctors believe radiation and chemo first is best.

MikefromWinthrop

OKCnative said:

Glad you have somewhat of a

Glad you have somewhat of a plan. Sorry to hear about the HPV- status. 

As for lymph nodes going down with chemo.... I'm HPV+ and we knew that going in after my tongue biopsy. My nodes didn't go down until 2 months after 7-weeks of treatment was over. They literally shrank back to normal within 3 days.

Is he doing Cisplatin chemo? I did and while it left my hearing alone, it attacked my kidneys. I was at 100% prior to treatment and function went down quite a bit. They had me coming in for IV fluids routinely and I had to drink 120ounces of water a day (minimum). Kidneys are almost back to 100% now. The chemo also attacked my legs and I began suffering from neuropathy. It got pretty bad until I was able to go to the gym and start working out regularly. Now I hardly notice it.

Just research all the side effects of neck dissection - not to keep you from doing it, but to be prepared to keep those side-effects as minimum as possible. I had none removed but still started to develop Lymphadema. Luckily I've been able to reverse the problem with excercise and massage/drainage.

Good luck! 

were your nodes cystic? Mine

were your nodes cystic? Mine is shrinking incredibly slowly and scaring the hell out of me, ct shows tumor on tongue gone though.

MikefromWinthrop

OKCnative said:

Glad you have somewhat of a

Glad you have somewhat of a plan. Sorry to hear about the HPV- status. 

As for lymph nodes going down with chemo.... I'm HPV+ and we knew that going in after my tongue biopsy. My nodes didn't go down until 2 months after 7-weeks of treatment was over. They literally shrank back to normal within 3 days.

Is he doing Cisplatin chemo? I did and while it left my hearing alone, it attacked my kidneys. I was at 100% prior to treatment and function went down quite a bit. They had me coming in for IV fluids routinely and I had to drink 120ounces of water a day (minimum). Kidneys are almost back to 100% now. The chemo also attacked my legs and I began suffering from neuropathy. It got pretty bad until I was able to go to the gym and start working out regularly. Now I hardly notice it.

Just research all the side effects of neck dissection - not to keep you from doing it, but to be prepared to keep those side-effects as minimum as possible. I had none removed but still started to develop Lymphadema. Luckily I've been able to reverse the problem with excercise and massage/drainage.

Good luck! 

were your nodes cystic? Mine

were your nodes cystic? Mine is shrinking incredibly slowly and scaring the hell out of me, ct shows tumor on tongue gone though.

tommyodavey

BevyB said:

To Radiate or Not...That is the question

Hi There- New to this BEAST.  Husband has Tongue Cancer, HPV negative, T1N1 (31 nodes removed)

The surgeon says "If it were me I wouldnt do radiation" Ra doc say"I have resons for and reasons why you might not"

Anyone else been in this gray area?  Even the 20 doctor board that is looking at his case seems split 50/50.

Thanks - Beverly

To Radiate or Not

BevyB, I don't like to deviate from the OP's question but I too had the same discussion with my Rad Onc.  Back and forth we went whether to radiate or not.  Ended up doing a low dose version and had less side effects.  Looking back, I'm glad I did it.  My neck dissection took out two positive nodes so I would have been worse off w/o it.  6 years later and all is okay.

Surgery is a lot of times the first choice for doctors.  They get paid a whole lot more to do it.  Second and third opinions are in order before a decision can be made.  OKNative really said it best but we all have different cases and doctors.  We all know how hard it is to get 2 doctors to agree on anything.  The team approach is best in opinion.

OKCnative

MikefromWinthrop said:

were your nodes cystic? Mine

were your nodes cystic? Mine is shrinking incredibly slowly and scaring the hell out of me, ct shows tumor on tongue gone though.

My chemo doc was concerned

My chemo doc was concerned when my nodes had not gone down by the time treatment ended. However, within a few weeks of treatmetn being over, the nodes went completely away. So, we all react differently.

Curlyn

Hi everyone, just to chime in

Hi everyone, just to chime in regarding HPV status, some research is now pointing to the need for longer follow up for HPV + cancers. Which makes sense, as the virus is still there and could reactivate. Anyone read that? Furthermore, in reference to kitkat's question, I would ask if if healing would be a problem if radiation done first, and surgery is later required. Other than that, there seems to be new developments and learning on a regular basis. Wouldn't it be nice to have a vaccine that eradicates the virus even after someone is infected? Hope all is going well.

swopoe

Curlyn said:

Hi everyone, just to chime in

Hi everyone, just to chime in regarding HPV status, some research is now pointing to the need for longer follow up for HPV + cancers. Which makes sense, as the virus is still there and could reactivate. Anyone read that? Furthermore, in reference to kitkat's question, I would ask if if healing would be a problem if radiation done first, and surgery is later required. Other than that, there seems to be new developments and learning on a regular basis. Wouldn't it be nice to have a vaccine that eradicates the virus even after someone is infected? Hope all is going well.

We had been told that HPV-

We had been told that HPV- was harder to treat, but that HPV+ was more likely to reoccur.

MikefromWinthrop

OKCnative said:

My chemo doc was concerned

My chemo doc was concerned when my nodes had not gone down by the time treatment ended. However, within a few weeks of treatmetn being over, the nodes went completely away. So, we all react differently.

I know, mine is shrinking

I know, mine is shrinking incredibly slowly, and freaking me out

MikefromWinthrop

Curlyn said:

Hi everyone, just to chime in

Hi everyone, just to chime in regarding HPV status, some research is now pointing to the need for longer follow up for HPV + cancers. Which makes sense, as the virus is still there and could reactivate. Anyone read that? Furthermore, in reference to kitkat's question, I would ask if if healing would be a problem if radiation done first, and surgery is later required. Other than that, there seems to be new developments and learning on a regular basis. Wouldn't it be nice to have a vaccine that eradicates the virus even after someone is infected? Hope all is going well.

from what my ENT told me,

from what my ENT told me, surgery should wait til at least 6 weeks after radiation or the skin tends to fall apart

SuzJ

Surgery

I had 35 rads, 2 cisplatins, and finally,  about 10 weeks after treatment finished, I had a radical neck disection.

whayever you choose, really, really, really take care of the skin on your neck, sunblock, a good cream, have the radiation people teach you how to take care of it to cope with the blistering.

I am HPV+ also, but I honestly dont think about it, I just think of it as "I have cancer" - so its one day at a time, and I just have to keep going, its not an option.

OKCnative

swopoe said:

We had been told that HPV-

We had been told that HPV- was harder to treat, but that HPV+ was more likely to reoccur.

The center I went to said it

The center I went to said it's stats show the opposite. From the thousands of patients they've treated, they actual use the words '80-90% cure rate' with HPV+ patients. HPV- they don't make those claims. Regardless they do say SCC in general has a higher rate of return than many other cancers but that a combination of radiation and chemo leads to a high cure rate of HPV+ SCC at their center. That said, they still say you have to wait 5 years to be considered in remission.