My father was diagnosed yesterday with stage IV cancer with a lesion at the base of the tongue with mets to the right neck lymph nodes/right neck. Currently is inoperable, but will start chemo/radiation next Wed. They tell me treatment is palliative,not curative. Is there any survivors out there, anyone who can give me some advice? Many thanks

My husband had a similar diagnosis and is doing great. My husband's tumor was small, less than 2 cm, and had gotten into 2 lymph nodes and was forming 3rd one. His treatment team was always optimistic that they would knock this out of him.

Are you at a comprehensive cancer center that specializes in H&N patients? Why are they telling you this will be palliative only?

Second Margaret's comments,

Welcome to OCF...you have found the right place for answers to your questions as well as emotional support.

Many here with stage 4 diagnosis and have undergone "curative," not palliative treatments. You need a second opinion (and perhaps a third) ideally at a comprehensive cancer center (CCC.)
Perhaps there is more than you are telling us, but spend some time reading and you will find lots of folks in the same position as your father and they are surviving.

Tell us more and we will try to help, but also, spend some time researching this website. Read, read, read, and you will become a very informed advocate for your dad.

Deb

With the disease still loco-regional to the mouth and neck, this treatment should be thought of as curative not palliative. Other people here have made it through that same staging and are still around. Unless your doctors are not telling you something... like they have done a PET scan, and they see that it is in his lungs or brain etc. I would be asking them what factors make him a patient they do not believe they can eliminate the cancer from. As others will tell you here, the institution has a great deal to do with outcomes as they have varying degrees of experience and technology at hand. Having him in a CCC makes a difference and we frequently tell people not to let geography dictate treatment facility choice.

Hi Darcy, my diagnosis was worse than your dad's, because many nodes on both sides of my neck were malignant, and my primary tumor was in the same place as your dad's. Definitely my treatment was curative! It's been 18 months since my diagnosis, and there's no trace of malignancy in any of my scans. I'm "fit as a fiddle," as the saying goes, and soooo grateful!!!

So if your dad's docs are telling you everything, then the possibility of total recovery is substantial. Please don't think it's time to ease up in the treatment. Now is the time to go to WAR! Fight that demon, help your dad resolve to get through this! Is your mom in the picture? What other support does your dad have? I notice that in your profile, you report that you're in the healthcare industry. Are there people in your organization with expertise that can help you? Please know that we are ALL here to help you! Can you get your dad to a comprehensive cancer center? Do you have relatives who live near one? (like Johns Hopkins in Baltimore? I'm trying to think what other centers are near West Virginia--does anybody out there reading this have any ideas?)

Please let us know what your dad's docs are saying now, okay? We've been through this, Darcy, and you can really depend on the information you get here. Let us know what treatment facilities you're looking at, and get your dad eating a LOT right now while he can. One thing about this process is that it causes weight loss, so have him beef up while he still enjoys it! Was he a smoker at all? If so, there are some aspects of his condition about which others will be more helpful to you than I can be. We're all here together, though, so if you share a little more information about your dad's challenge, we'll answer! You're in the right place for facts and lots of encouragement and cyber hugs. :-) You and your dad are in my prayers!

Carol

Hi Darcy...a big welcome im so pleased you found your way here, it's the right place for amazing support.

I had a similar diagnosis to your Dad only i have two leisions and no mets but was stage 4, i was told by my first ENT Dr i had a 50/50 chance but not to hold my breath ....and so far (touch wood) im cancer free... i would get a second opinion.

I second what Carol said about beefing up your Dads food intake pre treatment he will loose a lot of weight.

wishing you much luck Debz

Margaret,

Dad was seen by a H&N surgeon at UVA. His tumor in his right neck is 8.5 cm. Thank you for replying back.

Deb,

My dad found a small nodule in his right neck 1 month ago shaving and had neck stiffness for about 2 weeks. He went to his primary care Dr. and had a CT scan which showed probable stage IV CA, a lesion on the base of his tongue with mets to the right lymph nodes. He then had a biopsy of the mass last Wed.( he was on asprin and had to be off of it for 5 days prior to the biopsy) and the biopsy came back positive for a cancerous primary site stage IV lesion on the base of tonge and mets to multiple clustered lymph nodes, size 5 x 5.5. His MD then sent him to a specialist in VA. at UVA who looked at his CT scan, biopsy results and measured the mass and said it was 8.5 cm and it had affected the right side of his neck from the mandible to the clavicle with muscle involvement and he could see it in his throat. He told us at that point surgery was not an option and basically told us he was terminal, without intervention 6 mos. or less and with chemo/radiation possibly 1-3 yrs. He then sent us to a radiation oncologist who basically told us the same thing but said with agressive tx. it may shrink the tumor and then he could be scheduled for a radical neck. He went today for his dental appt. prior to starting tx. and he has an appt. tomorrow with an oncologist in Va.

Brian,

My father has not yet had a pet scan, he did have a negative chest xray. Any CCC you would reccomend?, we live in VA. Many thanks.

Darcy,

My neighbor had a 6 cm tumor in his cheek with mets to the neck. Stage 4, just like my husband and your dad. He, too, is doing fantastic. They thought radiation/chemo would shrink the tumor so they could operate, instead it eliminated it and he did not need surgery. He has passed his one year anniversary and is cancer free!

Can you get a second opinion at another institution? Or, at the very least, an explanation regarding why they are talking palliative treatment. It just doesn't make sense to me. Unless, like Brian said there are mets to the lung or brain. If there aren't, I'd really question what they are telling you.

How old is your dad? Other than the oral cancer, does he have any other health conditions? So many people here have had great success with radiation and chemo. Especially when the lymph activity is contained to one side of the neck.