confused..2 different treatment plans

What do you feel best with?

socalgal,

In the subject section I asked what do you feel best with? This was not to confuse you at all, it is an honest question. I too had a few options prior to my decision. 1- Chemo and Radiation, no Surgery. 2- laposcopic surgery on the Base of my Tongue where the Tumor was, followed by Radiation and maybe Chemo. 3- Major Surgery to remove the Tumor, followed by Radiation and maybe Chemo.

I chose #2-Laposcopic Surgery, which ended up not getting done because the Surgeon was not able to reach the tumor. I then chose #3 to have done 2 weeks later as I wanted the tumor/cancer out of me as completely as possible. So, Major work was done, I had part of my tongue removed, roughly 1/2 along with a Radical Neck Disection of over 30 Lymphnodes removed, Trach and Peg Tube.

After my Surgery, I did 30 Radiation treatments after about 7 weeks of healing from the Surgery. I did not receive Chemo as the Surgeon and Radiation Oncologist wanted to keep it as a back-up in the event of reoccurance which did not happen.

We all make up our own minds on how we handle this battle, I felt I only wanted to do this once and hit it as hard as possible. The side effects from the Radiation have changed my life as I have no saliva what-so-ever, but the radiation was over 10 yrs ago. The machines have improved since that time and are more pin point. Newer Medicines are out there to help with recovery of saliva and the Physicist programs the machines to try to avoid the saliva glands when possible.

I feel I made the right choice for me, the tumor was removed, I had radiation to clean up the area and have lived a new normal life for a bit over 10 yrs now.

My Best to You on what ever you decide.

Choices

The choice will be hard either way.  Have you had a second opinion and biopsy done on lungs?  You need to know if what is in your lungs is cancer or not before you make your decision.  My husband was first diagnosed with laryngeal cancer and they did radiation and chemo first.  He was clear for about 2 months or so they said.  Someone read his PET/CT scan after treatment wrong or they did it too soon.  (Our biggest mistake was not getting a second opinion from a head and neck specialist -- hindsight).  He was then referred to a head and neck specialist who said surgery -- asap.  Thankfully the tumor, even though large, had not spread.  But then a year later, when doing an endscope the head and neck specialist found a secondary tumor at the cervical of his esophagus which is rare.  Surgery ruled out, so another round of radiation and chemo.  NED for about 8 months when they found the tumor had returned and spots in his lung had grown.  The H&N Specialist pushed for a biopsy, something they didn't want to do because of the location and how small the spots were.  It was done and it was cancer.  He declined all further treatment -- only thing offered was chemo and we were told it would only prolong and could hasten his time.  We are 2 years out but he is now loosing his battle.

After watching the side effects from radiation and chemo, surgery would be my option.  I have wondered if his radiation caused the second primary because it is right below where his first primary was.  Radiation and chemo have many side effects and the main thing to remember is that everyone reacts different to their choice of treatment.  This is your choice and one that only you should make.  Don't let family or doctors talk you into something you don't want because you are the one going thru it, not them.  And get a second or even third opinion, something I desparately wished we had done in the beginning. 

Wishing you peace and comfort -- Sharon

 

socalgal63 said:

I had 2nd opinion at USC with

I had 2nd opinion at USC with highly recommended doctor. He states either course of treatment would most likely have same result. The surgical plan would be robotic surgery to remove tonsil and a separate surgery for neck dissection. This would be followed by 6 weeks radiation. He did not see actual pet scan just the notes. He thinks that the chest lymph nodes are inflammation because of the distance from cancer site. He cannot be sure without a biopsy and nobody is planning to do that at this stage. He had mentioned some possible damage to nerve in shoulder from neck dissection which scares me a bit as I am very active. The other would be chemo (2 agents 1 times weekly) and radiation (5x weekly) for 7 weeks. My preference would be for the one with least permanent damage. I am leaning toward chemo/radiation as I feel if the chest nodes are cancer this would be receiving treatment as well.

One thing to consider....

You can have surgery before the radiation or always after if needed. However, the surgery before is on tissue that has not had radiation and is still soft and it goes better from what I have seen. The neck dissection is often done as a precaution, as it was in my condition. They thought right befors I went into surgery my numbers went up to T4; N2; M0 and the neck dissetion was on both sides level 2~5 and a total of 86 removed and a sample of BOT with a patholigust right there and giving rhe results to the surgen. I knew the results when I woke up I was all clear and there was no cancer in any lymph glands. My first question was, am I in ICU? The nurse said no, you are in your room so I knw it went good. 

This is your choice and only you can make it, but ask more about your lungs. I would do surgery first. I was lucky because of where mine was I new it had to come out with surgery, but the Rad Onc wanted to do radiation first untill he was informed about mu COPD and the tumor board all had to agree on the procedure. When I was able to go home is when I was told that I could have radiation if "I" wanted it. The tumor board all got together and agreed it was not needed and my doctor said I could if I wanted but he did not think it would be necessary, so I never had chemo or raiation. I had to be seen and scoped every two months for the first year and every the second. In the third year it might go to once a year. It was an 8 hour surgery but it could have gone as much as 15 hours. I woke up with a few drain tubes and no voice but I knew that going into it. For me, it was the best Tx. They will tailer your Tx for just you as well based on all conditions. I was given a second chance on life and I thank having a great team of doctors and God every day I wake up. They put in a prosthesis so I still can talk with my voice and sound just like I have a cold and I can use an EL [Electronic Larynx] when I have any problem. 

It is a tough dision to make, but you will be guided from above , and make the right one for you. You must have faith, and get the attidue you WILL BEAT THIS. Also Never Give Up. Everyone here will be here to give you support and try to answers you have. It is a very rough road and scarry you are going to go down. Know that we all have been down the road and you will make it as we have befor you. Just stay hydrated, and just take one day at a time. On good days celabrate, and the bad days come here and vent, we do understand. You are not alone it this fight. You and your family have my thoughts and prayers.

Bill  Oct 2013 and still NED