#1636 08-26-2003 08:12 AM | Joined: Aug 2003 Posts: 4 Member | OP Member Joined: Aug 2003 Posts: 4 | I'd greatly appreciate any help you all can provide! My mom had squamous cell gum cancer 7 years ago, went thru surgery, it came back 5 mo.s ago, went thru surgery and radiation, and now it's come back as spindle cell on her lip/gum that seems to be spreading quickly. ENT surgeon at Stanford Hospital (who she likes a lot, been seeing for yrs) feels surgery at this pt. would disfigure her greatly and not necessarily catch it, and that chemo is an option but not very promising. I love her dearly and want to find other treatment options and a doctor who really specializes in this to make recommendations. I'm not willing to give up. Thanks for any information or help you can offer - even support! | | |
#1637 08-26-2003 03:56 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hi Lauras2, I am so sorry to hear of your mother's troubles.
I think it is time for more opinions. I find the Dr's comment about disfigurement interesting...as in...how disfiguring is dead. You shouldn't have to give up!
I hope you have access to a large medical facility. Push for more options.
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#1638 08-27-2003 07:23 AM | Joined: Aug 2003 Posts: 4 Member | OP Member Joined: Aug 2003 Posts: 4 | Thanks for your words of encouragement, Mark. She been seeing a top surgeon at Stanford Hospital, who seem to give only the standard treatment recommendations. He was very negative about gene therapy and clinical trials (as not being too promising), but my me+my mom+our family are stubborn and fighters. We're definitely exploring all avenues. I've heard UCSF and University of Texas MD Anderson have excellent head+neck cancer departments/reputations. Am trying to pursue a couple of good oncologists at each, in addition to taking advantage of the clinical research matching service of cancer association and massive reading we're all doing. I'd also really love for her to talk with a gum cancer survivor to keep her spirits up. Appreciate everyone's suggestions - this is all very new, emotional and urgent for me! | | |
#1639 08-27-2003 10:43 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | You are doing great! You and your family are fortunate to have each other.
There are many here who have been through oral cancer not all have had gum involvement but you and your mother are welcome to ask questions as needed. If you have spent time here you will note many of us are kind of down on statistics. Let the statistics give you added energy to fight but don't let them get you down.
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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