My husband was diagnosed with squamous cell carcinoma on the floor of his mouth in September 2013. A bilateral neck dissection was performed. I am unsure of the amount of lymph nodes removed but all tested negative. The tumor board recommended no chemo or radiation at that time. In May of this year, he was diagnosed with a metastasis to his lung, A VATS procedure was performed in June to remove a portion of the right lower lobe. Again, all lymph nodes removed from around the nodule tested negative. The oncologist is now recommending 3 different types of chemo, but my husband is extremely hesitant to do it due to horrific side effects. It has only been 8 months since his first surgery. We are devestated. Has any member of this forum been in this situation or can give us any words of encouragement?
Can anyone tell me how to remove the smiley face next to my screen name? This certainly does not represent the way I am feeling.
Welcome to OCF! I removed the icon next to the title. Then I realized you meant the one next to your name. Sorry but that isnt able to be removed, it will show up when you are on the forum.
Im very sorry to read what your husband (and you) are going thru. I would advise getting a second opinion before beginning treatment. Preferably at a comprehensive cancer center where a team based approach is used. There they should have the most experience with difficult cases and give the best chance for a successful outcome. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital. Find the best medical care you can and also get a second opinion.
CCC list US News Best Hospitals List Best wishes!
Thank you Christine, I am very glad to have found this forum. My husband has been treated at the University of Minnesota which was #37 on the list of Best Hospitals.
After each diagnosis he has been given, we have gone to the Mayo Clinic in Rochester, a CCC, for a second opinion. Both times they have told us they would perform the same treatment as the University of Minnesota. My husband is getting very discouraged at this point, and seems to feel it will be a waste of time to get a second opinion when the Mayo Clinic both times has just recommended the same thing as the University of Minnesota.
Christine, tonight I read a post that mentioned, if I understood correctly, that surgery and/or radiation, is the best way to kill the cancer and chemo may also be included. I am so confused and wondering why no radiation or chemo was given after his first surgery, the bilateral neck dissection. At the time, I thought this was a blessing and didn't even question it. Now after reading these forums, I am thinking he should have at least had radiation. I am so confused and frightened. Thank you for letting me vent.
Monica
Chances are the clean nodes indicated no further treatment needed - this always concerns me but treatment is so brutal that they only like to give it if it meets the parameters layed down by the national cancer center. usually this is at the very minimum nodal involvement or peri neural involvement. It's rare that this cancer skips the nodes and moves elsewhere but it does happen. Your drs. Did the right thing with the neck dissection - how big was his tumor? Hugs.
Thank you Cheryl for the hugs. Explaining to me that the clean nodes were probably the reason for no recommendation of radiation makes me understand why it probably was not recommended at that time. I knew less than nothing about treatment for oral cancer when he was diagnosed and from his diagnosis to his neck dissection surgery was only about a week apart. The whole time period was a blur and I felt like a was living in a nightmare I wasn't waking up from. I'm not sure of the size of his tumor, that is probably something I should know off the top of my head, but I don't have his medical records in front of me right now. I will check to find that out though.
Thank you again for your reply. You forum members are very knowledgeable.
Monica
Knowledgeable but not by choice Monica!
Welcome to the forum, I hope you have a good outcome and I hope we can help you on your journey.
When determining a treatment plan, doctors will use a flow chart and should go by the NCCN Guidelines. Of course everyone is different and all kinds of other factors can get added to the mix. This is why a second opinion is so important. All you or any patient can do is to seek out the very best medical care they can and go with it. Second guessing why things have turned out the way they are will only add unneeded extra stress and anxiety. I wish you had found our group earlier but Im at least you are here now and we will help you both.
NCCN Guidelines for head and neck cancers
This is a Head and Neck Cancer website and with mets to the lung you are some what out of our comfort zone. The standard radiation/chemo treatment mention here is for cancers in the H & N region, not lungs. I wish I could offer more advice than what's been offered.
There are several people dealing with mets to the lungs. Most of their posts are in the recurrence section of the forum. There have been many approaches taken, from radiation to treat the mets (my husband) to clinical trials involving immunotherapy, etc. Christine's advice is right on though about the CCC. It's great you can go to the Mayo clinic. Don't give up on seeking their second opinion for each round of treatment. We had 3 different second opinions before we selected the current CCC where my husband is being treated. The odd thing about the lung mets is that it is still considered head and neck cancer because that is where it originated.
Best to you,
Mary
Thank you to everybody in the forum. I appreciate all your excellent advice, support and well wishes. I will also check into the reoccurrence portion of the forum.
Monica
Monica,
I just realized what your screen name might say. I worked for Jostens years ago and my girlfriend lived on Lake Minnetonka before Tonka Toys moved away. She was a U of M grad also.
Yes Uptown, you are correct, Lake Minnetonka. We drove by the old Tonka Toys factory in Mound just last week!
Monica
