Scc Metastase To Lungs

I too have SCC with mets to my lungs. I have been on a "watch", since they were discovered in 8/'06. I chose not to have a biopsy due to the nature of the procedure ( in the lung ). I figured time would tell if they showed any sign of "change", which they did in numbers and size. My onc.  feels I should start to experience symptoms within 6-8 months at which time he would plan to start "treatment" (chemo). I am not sure I really want to go that route ( even given the fact it is suppose to be my only option). I have been looking into all my options...my onc said I was not a candidate for Cyberknife (not sure why). I have researched Tumour Ablation which I have been turned down by 3 doctors so far. It becomes difficult dealing with rejection after a while. But the pursuit goes on. I am looking into Hyperthermia now. I have been approved by the Valley Cancer Clinic in Ca..I am a little skeptical...Just being a little "out of the box". Even when your life is on the line you still question things. I am still researching and actually speaking to them tomorrow. Time is moving on ..........I am open to any suggestions. Stay Strong ! Pam

 

Pam:

I really have no direct knowledge.  But, I do ALOT of research both on and off line.  I have a direct connection to the dept head of Otolaryngology at John's Hopkins in Baltimore.  They conduct extensive work, clinical and protocol, on a variety of Head and Neck cancers.  Their research is often out of the norm including many clinicals on hyperthermia.  I've read positive results with many alternative medicines on some H&N but not specifically yours. 

My suggestion, which comes only from my experiences, would be to contact John's Hopkins Otolaryngology and get an appt.  I believe you said you are in Mass?  The train lands daily in downtown Baltimore from there.  JH has deals with local hotels/hostels for pp visiting too.

Being a teaching hospital, it is rather involved when you go there.  However, they really think out of the box with treatment programs.

Good luck, godspeed and good healing to  you.

My best,

Kara

Pam-I've been looking for more info on metastesis from H&N to lung. Pls help! How many (and what size) nodules do you have? Both lungs? How do they know it's metastatic and not a new cancer? Were they diagnosed by biopsies/or scans or what? Are they watching them now just by scans? What symptoms do they expect you to have. Hopefully you won't think I'm being too nosy/forward! I have 2 nodes and have been concerned-another PET/CT next week. (stage IV SCC, unknown primary) Thanks for any help-Gayle

Gayleann   I have Salivary Gland cancer ( Squamous cell ) that I had treated locally ( at the primary site ) with surgery, chemo, rad. Then 6 months later it was determined through a CT scan that I had a few nodules roughly 3-4mm. When they eventually became large enough to biopsy I opted to not go through the procedure. Just due to the nature of that particular procedure, I did not want to subject myself to all that. I figured that  if they continued to grow we would be certain it was cancer and they did grow. Nobody has ever really questioned whether they were the same as the primary or another type. So we have been going on the assumption this what they are. My onc has never even talked other wise.I have had CT scans every 2-3 months to check on their progression. They have been averaging 1mm per month.As I look back I wondered if I really needed to have so many scans over the past year and half knowing we were not going to address them until they got to a certain size. At this point in time I have roughly 5 in one lung and 6 in the other. The largest being 2.3cm. At my last visit with my onc. He is projecting I will start to experience symptoms within 6-8 months. Symptoms being..cough..shortness of breath and some discomfort depending on the location of the different  nodules. My onc wants me to start on chemo just prior to symptoms starting to reduce and minimize the symptoms. He has mentioned once I satrt on chemo...I will be on it forever.....don't know how long forever is though. I am not a fan of chemo and have been searching for some alternative approach....but have not had much success. Apparently it is a very aggressive and resistent cancer.

On another  note right now I feel absolutely and would never know I have anything wrong with me if it were not for the scans...HATE THOSE SCANS!!!!!!!!!!!!!!!!!!!. I have another one coming up at the at the end of March.

Not a problem asking questions......I could never find someone who had anything similar to mine. I think it all seems better when we have someone to talk to.   Best of luck to you with your scans let me know how you make out.   Pam 

 

Thank you so much for the reply.I just can't seem to get much info on any cancer site regarding this. I found the most out by searching for 'pulmonary nodules' on the internet. Apparently if they don't really grow/change in 2 years, they assume they are something else (non-malignant) They say needle biopsies aren't very accurate, so excision is preferrable, to get a definitive diagnosis. I can see why you wouldn't want to do that-altho there's a proceedure called VATS that seems less invasive. I've also been having CT's and PETS on a rotating 3 mos basis. My PET has also shown a corresponding hilar lymph node that shows some focal metabolic activity, which seems scary. Best of luck to you-keep in touch! Gayle  

Hi,

I just read your email and am asking you to please write back.  I have a friend names Susan who has mucoepidermoid carcinoma of the salivary gland that has spread to the lungs.  SHe has 15 nodules on them.  they are slowly growing.  She gets a PET every 3 months or so.  She is totally asymptomatic at this time and it's been 3 yrs. since she's been diagnosed with the cancer.  She had surgery and radiation, and is currently on chemo- 3 wks on and 1 wk. off.  SHe looks great , so whatever they are doing is working,  Since the cancer is so rare, even sloan kettering turned her down for treatment as they can't do more than the cancer center she is going to.  I wondered how you are feeling and wanted to suggest that you try these treatments too as they seems to be keeping her from any limitations at all.  We walk several times a week, up hills, and she has no problems.  I am  hoping to offer you some reassurances, but would appreciate it if you could share any new info you may have, and I will do the same as I research.  Susan refuses to look at the internet as she is afraid of what she will read.  So I am the one doing the searching.  If you are interested in talking to her I will let her know.  Hope to get an update back - I'll pray for you as I do for her .  Patty

Hi, I am responding to you as well - just wrote to another lady named Pam.  Any info you have on treatment for metastases to lungs from salivary gland or oral cancer would be much appreciated.  A good friend of mine has it and little is known.  I am searching for answers.  Supposedly there is a treatment with lasers in Germany to remove the lesions on the lungs.  It is a very difficult operation however.  I hope to hear back to see how you are doing and what they are presently doing for you.  Patty