Forgive me if I come to this community without the proper abbreviations, I hope I'll learn them all as I go!
I'm facing my 6th inpatient tongue surgery next week & feeling overwhelmed & a bit scared. Second surgery was diagnosed oral cancer-stage1. ENT had it reviewed with ONC, felt no need for chem/rad so just surgery.
Three month follow-ups & more surgeries. I went six months and now had a rapid growth show up. Feeling very overwhelmed, not the least bit scared. Not sure whether to get another opinion.
Background history: never smoked or chewed, no family history of oral cancer. They've not done an HPV test, though I asked about it. Just keep telling me that "these things happen".
Christi, I feel so bad for you having to deal with all this! But you've come to the right place for support and advice from people who've been there.
I think most of us would recommend at this point that you do get another opinion, preferably at a Comprehensive Cancer Center. Here's a list taken from the OCF main page:
http://www.oralcancerfoundation.org/resources/#centersIt's a good starting point. If you can't find one near you please let us know where you are and someone in your area might be able to suggest something.
Hang in there and welcome to our family!
Thanks David!
In the second part of your list was Univ of WA, which I know to be a fabulous care facility. We're part of an HMO- Group Health of WA (GHC). It's pretty comprehensive, but not real helpful when you want to go outside of their network.
My doctor is a great ENT, and very helpful in answering questions/having things reviewed by the GHC oncology docs, but I feel like I have a million questions and lost about why all this keeps re-occurring & how I can combat it. There has to be something I can do to stop losing my tongue. Not to mention the anxiety & cycle of living around surgeries for the past few years.
Part of me feels silly...my surgeries are so small compared to what so many of you are going through. And, only one diagnosis, with no chemo/rad. I don't FEEL like a survivor when so many have gone through so much more.
I would seek another opinion.
HI there. Okay yup - to ditto everyone else - get another opinion. Tongue cancer can be tricky. Even a stage one. Often what happens post dx is the tumor once messed with tends to grow and spread rapidly. This is no time be wait. Push to be seen by a top ENT at a top cancer center. Unless they are really experienced with this type of cancer they tend not to treat it as aggressively as they should. Hugs to you. I do not relish the idea of 6 surgeries - one for me was enough. But after that one they hit me with the works. Rads and chemo. Plus my initial surgery for the same cancer you had - a stage two - also included a neck dissection as this cancer likes to travel to the lungs.
Welcome to OCF!
Great place for first hand info and experience. Given the multiple attempts, I would absolutely seek advice from a team of doctors who will review your case at tumor board. I would also push very hard for as aggressive treatment that is discussed as you really have to do everything possible to kill it off on this next go around. Good luck, Don
Sorry all, for the lack of update. I truly appreciate the support and information on this forum. Unfortunately, I really minimalized much of what was happening. I have had 7 biopsies...perhaps I shouldn't have labeled them as surgeries... now, not six as I've had to review my records.
The last two biopsies have had complications, aggressive swelling, mouth viruses and this past time a swelling growth of tissue and now another tiny white spot.
Last month, just as I had decided to ask for referral to CCC, ENT felt his care had gone as far as possible. I'm headed there on Tuesday. They are a team of Head/Neck cancer specialists and the doc I'll be seeing is a specialist with TORS.
Feeling sad as I become more informed, apprehensive about the next step, but thankful I appear to be headed in the right direction.
I'm glad you've taken the innitiative to seek a second opinion from the CCC specialists. As stressed as we were when we faced Stephen's surgery, we told our surgeon to be as agressive as possible. We wanted to fight our best fight first off. You are in good hands, ask as many questions as you need to ask.
Sophie