I've lurked on this site for a couple months and want to introduce myself finally. My husband was diagnosed in June of this year with Stage IV of the floor of the mouth, most likely secondary to years of smoking cigarettes. He had surgery Aug. 1 and has had two cycles on radiation/chemo inpatient. The weeks off between cycles have been tolerable, except last week when the paramedics were called because he developed pneumonia and could not breath -scary.
I am his caretaker, an RN myself, but everything is different when it's a family member. I'm feeling drained and cry at the slightest irritation. I never realized how much HE is MY support and now that's taken away.
Does anyone know the significance of positive lymph nodes, having skipped upper levels? His were level III positive, but I & II were negative. I have heard conflicting prognostic significance.

Welcome Donna D from Illy!

So glad you found us my dear, sorry you had to! You will find a huge support network here and I'll say that the experienced caregivers on these forums are awesome and people that can relate to where you are and what you've gone through my dear...and love on you as you need it.

It's not often that I get stumped on a ? however I'm unsure of any significance there. I'm sure if there is one an anwer will be posted shortly.

Keep your chin up

Eric

Hi Donna, while you are here, we shall try our best to help you and your hubby.

I see from your footer that your husband had pT4aN2bMX cancer, and given the tumor size and multiple ipilateral lymphnodes affected, I am suspecting adverse features (Extra Capsular Extension, Perineural Invasion, Carotid Artery Invasion, etc.) and probably in surgery his spinal accessory nerve, internal jugular vein and sternocleidomastoid muscle may have also been sacificed.

Neck Level III is associated with middle jugular nodes (all of them would have been removed), carotid artery - internal external bifurcation, inferior edge of larynx cricoid cartilage, omohyoid muscle. Honestly speaking it is all statistical and every individual is different in cancer. Your husband is receiving Concurrent multi-drug chemotherapy and radiotherapy just to ensure improved prognosis.

All the best for the treatment, as a caregiver it will be difficult time for you but it is more difficult for your husband considering pain of surgery and now CCRT.

Hi here - I have. Friend who's cancer skipped the first 20 NDEA but the next bunch were positive. She's still fighting. Try not to listen to statistics everyone is different. Just mifepristone from day to day! Hugs and welcome.

Hi Donna,

I am sorry that you are suffering. Being a caregiver is a difficult job. Many of the patients here will say that their caregiver had it worse than they did. Also, they will say that they owe them their life. Your husband is lucky to have such a loving and attentive caregiver...and one who is a trained medical professional, as well.

It is different when it is family. When it is your husband, it is your whole world that falls apart. They are too ill and too invested in treatment to be the partner that we depended upon for companionship and support. In addition, we feel powerless to fix it. It is a painful place to find yourself.

Please know that there are many caregivers here who will understand what you are going through and will be here for you whenever you need a shoulder or an ear. Make sure you take care of yourself. Be sure to get enough rest, and get plenty of nutrition and hydration.

I hope things go well with your husband's treatment and he recovers well.

Keeping both of you in my thoughts and prayers.

Sandy

Donna, welcome to OCF. I'm certain this is a place where you will receive some much needed support. Its not unusual for a caregiver to seek out a therapist to talk with and also take some anxiety meds to help get thru this. Having cancer doent just affect patients, caregivers have a very difficult job and play a huge role in a patients recovery. Make sure every single day you take at least 10 minutes just for you, do not make your 10 minutes washing the dishes or cleaning the bathroom your time. Over the years I have seen where caregivers go for a car ride to clear their heads, take long showers so they can cry without being seen, join a gym and hit the punching bag. Do anything you can to get your frustrations out, it will make a big difference in how you feel. Now that you have found OCF, you are no longer alone!

As far as your questions go, I have seen people with Stage IV and a poor prognosis beat this while some with what appears to be an easier battle lose their fight. Its nothing to do with statistics so do yourself a favor and put those out of your mind. If I paid attention to stats, I wouldnt be here as I am a 3 time oral cancer survivor. My last round the cancer was in my jaw bone. The stats show once cancer invades the bone that your chances of survival are very small. Im here and know how lucky I am, so you see you cant be sure. I am a huge believer that a positive attitude will make a difference in a persons battle. There have been members who have had their jugular vein removed and they have recovered successfully. I have seen the hardest cases that looked like it would be next to impossible to get thru it and a few years later the person is doing great. So you see you never know how it will play out.

Best thing I can tell you is to be strong! This is for your husband. He needs your strength to help him get thru this. To me, I think caregivers are angels who watch over a patient and protect them. Its a darn hard job too! Having to watch the person you love in pain and the terrible things they go thru all with a smile on your face and to also at the same time be their voice and advocate for them. Definitely a tough thing to do!!!

I wish you both all the best with everything you are facing.

((((HUGS))))