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PET scan results show spots on lungs

tamjam
Posts: 1
Joined: May 2009

My husband just received results of PET scan. Original SCC in neck, too large to remove...radiation/chemo all summer. Very strong/stubborn high school football coach. Never missed practice or work! Still can't swallow and using PEG. Waited 90 days for PET scan and now it shows both lungs are full of 'spots' and more lymph noded in neck infected. Starting new chemo rounds next week and possibly getting into MD Anderson in Houston. It's stage 4...anyone out there have any advice or similar story? Overwhelmed and second guessing our treatment choices.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I had surgery in oct of '05 to remove cancer from tongue and neck (replacement of half of tongue along with radical neck dissection) followed by seven weeks of radiation and several rounds of chemotherapy.

All seemed well until I asked for an additional scan in June of '07 because of a persistent cough (I had a long history of smoking, and wondered why I was still coughing, since I had quit at the time of the original surgery).

The results of that scan were that I had a shotgun pattern of hotspots in both lungs as well as another in my mouth: the SCC had returned with a vengeance and I was given as little as 10 months to live.

It happens that SCC does in fact like to migrate to the lungs. However, in my case, between the time of that scan and another one three months later, I was taking an antibiotic for cellulitis in my lower face. Lo and behold! All but one spot in my lung had disappeared when I got the second scan, and the spot in my mouth turned out to be an infected tooth.

I had had, it turned out, a lung infection that the antibiotic I was taking for another purpose knocked out.

I DID have a lobectomy in January of '08 to remove the spot in my lung, and it was too small to determine whether it was metastasis or not, but since then, I have been NED (no evidence of disease).

Most folks do not have such a happy story to tell, I suppose, but it is true and it is proof that we should continue to have hope and to continue to fight as it sounds as though you and your husband are prepared to do!

There are few finer choices than MD Anderson, from all that I have gathered. Not only are they included in most conversations about the best cancer treatement facilities in the nation and the world, but I know from my own reading that they are on the cutting edge in many areas of research.

The only advice I might offer beyond the above is that it is long since past the time to second guess what you have opted for in the past. You are where you are and it is time to deal with that to the very best of your combined abilities (yes, YOU matter a GREAT deal too, as his primary caregiver, and have an even harder job, in my opinion).

I wish your husband and his family the very best.

Take care,

Joe

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Ask if Dr. Mario Luna is still there. Long story, but as a Second Opinion resource he literally saved my life back in 2007. I think he and his predecessor Dr. John Batsakis (retired) may be the leading research experts on SCC in Head and Neck Cancers in the US, if not the World.

Worth a try.

God Bless and both of you are in my prayers.

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