Hi Gang, I am within months of my five year anniversary - being cancer free - almost. My latest PET/CT found a spot on my right lung. Needle biopsy confirms the same (SCC)cancer as my BOT primary years ago. The shape and conformity of the tumor lead the pathologists to believe it is metastatic disease and not a new primary.

I haven't met with my entire team yet. What are my options? Since this new tumor is some distance away from the original site, could I have radiation again?? They zapped me all they could in 03 and told me then that I could not have more radiation. I assume that meant to the original base of tongue site. How about a different site (lung)? Anyone know the rules around repeating radiation? The several original sites are all clear.

What kinds of surgery are effective against lung tumors? Can anyone steer me to some reading resources? I don't know whether or not to return to the Oral cancer experts I was working with, or go in search of lung docs. Feedback anyone? It seems like there is more literature available on lung cancer than oral cancers.

Ideas and feedback please!! Thanks, Tom J

Oh Tom, I'm so sorry to hear this.
However, I believe the prognosis and treatments for SSC are very good.
Mine is a primary NSCC, but has responded to chemo by shrinking more than 50%--a seriously good result in my circumstances!
I hope your existing docs will point you in the right direction for where you should be consulting/deciding on treatment.
Keep us posted!

Brenda

Hey Tom, I am sorry to hear this....I had made it to my 5 year anniversary in May and got kicked in the butt with a new second primary tumor in my mouth in November. It is my understanding that I have had my full dose of radiation for head and neck cancer, however, I believe that if it were in another part of my body I could have radiation again......Let us know what your docs say......I will keep my fingers crossed for you (you can do the same for me if you wish) I am having surgery 12/14.....Thanks, Carol

Brenda, Thanks for your encouragement. Your new primary is non-small cell - is that right? It sounds like I may have to deal with that. The pathologist, after doing some frozen sections and dye, now believes the hot spot in my lung is a new primary, non-small cell. I should have a copy of the path report tomorrow. Brenda I would like to hear more about your Tx plan and how you are doing with it. Tom J

Carol, I'll be sending you positive beams on the 14th. How are you coping with this second round? Do you feel a bit like a bull's eye?? I do. Good thing I don't believe in karma, cause I guess I would have to face some really dark stuff in my past. Staring at the beast again doesn't scare me this time like it did the first time. It just makes me mad. Be strong Carol. Tom J

Oh My Gosh Tom, don't even go there, my past scares me when I think about it! SMILE!!!!!!!!!Yes, I agree it does make me mad this time cuz I really thought I had it kicked, at least oral cancer......BUT I am gonna do it again!!!!!!!!!!!!!!!You be strong too Tom....thanks so much for writing, you are in my thoughts and prayers! Carol

Words yet again fail me.How i hate this damnable disease,and my thoughts are very much with you both every day

Liz xxx

Have sent you a PM Tom

Brenda

Oh Tom, I am SO sorry. I've missed you around here but this is a crappy reason to return!You've been such a strong supporter for others here, though, including me, you know you have lots of people here willing to support you through whatver you have to go through.

In answer to your question about radiation, if you recall, I was diagnosed with two cancers (oral and breast) almost at once and had radiation for both within the year. My understanding is that if the cancer is in a different part of your body, you can get more radiation within some limits and the limits are because there is a maximum amount of rad. your spinal cord can take. But of you had IMRT before, your spine probably got little or no rad the first time and with all the new techniques they have, it seems quite possible to me they could focus on the lung the same way. But that's just my limited knowledge speaking--obviously a radiation oncologist could tell you a lot more.

Please let me know if there's anything at all you think I could do to help you.

Nelie