Just Found Out

Many Been There
Hello Ron,
Sorry you to hear of your news, but glad you found this site. There is a lot of information 1st hand from patients that have the same thing you speak about. I was diagnosed in April 2010 with SCC cancer, stage 3. The primary was in my right tonsil, and had spread to two lymp nodes in my right side. Had three teeth extracted and a partial neck dession in Aug 10, removed tonsils and 4 lump nodes. Started radiation treatment middle of Sept and finished about 5 weeks go. My advise to you is to ask questions before you proceed with treatment and feel comfortable with the doctors and treatment plan. It could be the most difficult thing you have done, but it is doable. Getting a 2nd or 3rd opinion is suggested. You will find on this site, there is a variety of treatment, some surgery, radiation, chemo, some have all, some have one or two of the options. Everyone reacts differently to each treatment, so make sure you are comfortable with the treatment plan you choose. Are you HPV+? If you do not know, ask you ent to test. I was negative, my was beleived to be tobacco related. If you have any specific questions, please feel free to ask.
Debbie

Sorry to hear
Hi Ron, tough news for the holidays, but I'm glad you're here given the situation. I got my news at about this time last year, so I know, we all know, how you feel. Just know that this can be beat, and this site is the best source for support and information. For now, tonsils out, and a thorough diagnosis are the first steps to recovery. Come back here often for advice.

best, Hal

Just Found Out
Hi, Ron. I'm sorry to hear about your condition. Many on this site have had similar issues and this is a really good place for support and advice. Believe me that all of us on this site know how scary this is. I think a lot of us do the internet research thing and yes it can be very scary as well. I found that sometimes I had to just shut down the research and go do something else. It is very easy (and human) to dwell on all of the horrible things that we find and that tends to get us all upset and depressed. Every situation is different and where there is life, there is hope. I know there were times when I wanted to give up, but I kept on fighting and I am doing pretty well these days.

been there done that
Yes you have come to the place with the answers, I was diagnosed with stage 4 cancer in a lump in my neck and tonsil, they found that the tonsil was the primary source. The tonsil was removed during the biopsy as my Doctor was an agresive one. and I liked that about him. No need to let it sit there if you recognize it and just wait for a test result to come back. Anyway I had 6 teeth pulled to prevent future problems as I my treatment was Radiation and Chemo at the same time. My lump in my neck grew to be very large (about the size of an apple) in about 5 weeks time and my doc recomended things and I just did them without waiting for results to come back. It was growing so fast I didn't want to delay anything. or have something cause a delay. shortly after all the prep stuff (teeth being pulled, G-Tube, and Port tube). treatment started. after 2 months of radiation and chemo. I followed that with a surgery to remove the leftovers. its been 14 months now and my appointment on friday the 17th said I was still clear. as for advise I would have to say, keep a very positive attitude and eat soft food. Drink water!!!! Lots of water.

Kevin

Ron49 said:

Hi, great question and I will definitely ask that during my pre op. I am not sure if I will have surgery before or after christmas. I am ready anytime and just want to start with treatment. That probably sounds nieve right? I guess I don't know yet what I am in for but the lump is big and I can feel it inside.

Thanks for taking the time to reply to me and your encouraging words. It is so nice to hear from others who have had similiar symptons.

Ron & Robyn

not naive
just ready to get down to business. it's all good

second opinion
I am so happy that you were able to find this website. there is always someone on who can help, and if they are not on today, they will be soon. I can not relate as far as location of tumor and since I don't know what type, I can't relate there either but I understand about the unknown and the internet.
From the time you get diagnosed it can be very scary. then you have to determine which option your doctor offers you is the best for you. Unless your tumor is very fast growing, things can progress very slowly. while waiting, get a second opinion...it never hurts to see another doctor and you might get a less invasive option. My tumor was in my hard palate and had grown into my sinuses. I had to debate between seeing the doctor everyone said was the best in my area, but who had a backlog due to a death in his family or seeing someone else who was available right away. I chose to wait for the best. I am very glad I did...he was the right fit for me. while waiting for my surgery I went to my family physician and asked him what I could do to improve my recovery time post surgery. (I am the mother of three kids under 5, my youngest at the time of diagnosis was 4 months old) he ran blood work and was able to get me started on iron pills so that I wouldn't be anemic when my surgery came. he also said to exercise as much as I could...it gets your blood pumping which helps healing!
It is important that you become your own advocate. ask dozens of questions about what will happen, what your options are, why they recommend those options, how soon they need to begin, etc. if at all possible, write everything down and then if you don't feel 100% comfortable with the options...wait a day to decide. it will leave you feeling in charge and more confident when it comes time to have treatment.
Be very careful with online resources...many will just make you depressed with inaccurate information for your type of tumor. I even found one site that I thought was telling me accurate prognosis rates, only to read the fine print that indicated the last patient treated was treated in 1990 and that they were just indicating who was still alive at the time of the survey, it didn't include who had died from natural causes or who had died from the cancer. I ended up trying to read the actual document, not the summary with graphs that was online and found that most of those who were listed as deceased had died due to old age. they had been in their late 70's and 80's at the time of diagnosis! I am 31 years old...that sort of information didn't give me quite what I needed. a lot of research and improvements in treatments has happened in the last 10 years. with the surgery I had, the doctor didn't even have the equipment to perform 2 years ago! I found a better study that concluded in 2008...with vastly different prognosis rates! My tumor prognosis went from 50-75 in the first study to 75-95% in the second, with only one death caused my the type of rare tumor I have (minor salivary gland tumor called Mucoepidermoid Carcinoma).
Ask if you need a PET scan or other diagnostic test before your surgery.
Wishing you the very best. You and your family will be in my thoughts and prayers.
Hugs!

hpv +
Hi Ron, I am sorry to see you here but this site has helped my wife and I as the people here know more about the treatments and survival and side effects than some doctors. My wife Connie has cancer at the base of her tongue which spread locally to the lymph nodes in neck. My wife's lymph nodes (2) swoll up to the size of a golf ball from the time she received her initial diagnosis until she received her 1st round of induction chemotherapy. (approximately 2 months)It takes time for diagnosis, biopsy, we needed assistance from hospital because we did not have insurance, once accepted it took 10 more days for 1st appointment and then it took another 10 days from 1st appointment for all the scans, tests etc. to start the chemo. We were hoping for surgery to remove the lymph nodes but it was too late for that and she was prescribed 9 weeks of chemo followed by 7 weeks of radiation. I was afraid that we had waited too late to treat this because the nodes had become so large her appearance looked scary. After the 1st treatment the lymph nodes responded immediately to the chemo and in 4 days 80-90% of the swelling had gone down to almost normal. The reason I wanted to let you know this Ron is because your lymph nodes will probably respond well to chemo also, at 1st when I found out that she could not have surgery to remove the nodes I thought I had let my wife down. So right now the most impotant things you need to do is 1. Try to find out where the primary tumor is located. 2. Find out if the tumor is HPV positive which will give you a better prognosis 3. Find out where you will receive your treatment and what your treatment will be. 4. Try to receive treatment at a cancer treatment center that specializes in cancer care. I wish you well my friend and remember you have friends on this site that are willing to help you and want you to beat this disease. Your friends, Homer & Connie Price