Posted By: didier Possible recurrence 10 years after initial dx - 06-21-2013 11:42 PM
I received a call from my Mom's ENT today telling me that she wants to remove a 1cm lesion from her tongue as she suspects it's cancerous. Crap, as if the past ten years haven't been challenging enough with post treatment issues, now the possibility of a recurrence is looming. Apparently I was under the false impression that after a certain amount of time, the incidence of recurrence might dwindle. The doc told me she sees a bit of it and thought it could be due to the amount of radiation she received. I dunno.
Sometimes it happens but this is not a recurrence it's a new primary. Things have changed in treatment hopefully it will be easier this time out.. Hugs!
Posted By: PaulB Re: Possible recurrence 10 years after initial dx - 06-22-2013 02:35 PM
Survivors of cancer have a 14% increase risk of developing a secondary cancer due to treatment. For head and neck, it seems the risk increases every ten years, from radiation, but forget the starting percentages the first year. Hopefully it's all clear. Good luck.
Thank you for the feedback. I thought I had become pretty tough over the years, but again I was mistaken. A sleepless night filled with a big old mess of thoughts just proved that. Time for me to stop whining and pull myself together.
Well, it's official. Cancer again. This time on the tongue. It's more advanced than anticipated. To think a couple of weeks ago I was this close to sending out 10 year anniversary cards in celebration of my mom being cancer free. This sucks. Looks like the options are going to be more challenging than the first time around. The surgical option basically removes a portion of the tongue rendering speech a thing of the past. The possible other option is chemo and radiation -- more toxic than the regimen used for the Stage IV diagnosis in 2003. If my mother is a candidate for this, which she may not be due to previous tx, this could possibly save her tongue. No idea on prognosis as we await a full path report and scan results. This disease is a bitch. Full recovery in her case was never achieved, perhaps due to her age (71 at the time) and the aggressive tx, but the side effects never ended and now to be faced with this crap at 81. It sucks at any age. I realize 81 is a full life, but the last ten years have been far from a walk in the park. Over the past decade I've made friends and lost friends on this forum. It's a great place and resource, yet sadly oral cancer still doesn't get the attention that it needs. Great strides have been made in getting the word out, but it still amazes me that I have to debate a physician about the dangers of HPV and its link to oral cancer. It's scary to know there are health care professionals out there who are still telling people it's still okay to indulge in a practice that can potentially kill them. I don't know where I'm going with this diatribe as my mom's initial cancer could may have been caused by my dad's second hand smoke or from my mom being a closet smoker for a couple of decades. I'll never know and it doesn't matter much. Last night my older sister gave me a lecture on how my mom's limited diet of chocolate ice cream didn't help her situation much. That's the sensitivity that I get from my siblings. Unreal. Instead of being concerned about her mother, she goes off on a rant about her diet. Truth be told, my mom eats a lot of ice cream because she barely produce saliva, she has difficulty swallowing and she hardly has any teeth left. Her options are limited, although she had a g-tube inserted again today. I don't post much for a number of reasons, but I continue to support OCF as I have since I was fortunate enough to find this site in 2003. I apologize for my rant, I suppose I find it cathartic. I'm frustrated, tired, sad. I wish you all well, I really do. Fight the fight and kick some ass. Best regards, D
So sorry to see your mother is going thru OC again! Its bad enough to have it once but twice or more can be emotionally devastating. I wish you had a better support system. Its stinks that everyone isnt on the same page with their priorities. A cancer diagnosis can really bring out the worst in some people.

Wonders can be done with speech pathologists. You never know, she may be able to talk understandably after surgery. I had a friend who had a glossectomy removing the majority of her tongue and she shocked them all when she was still able to speak. With work her speech wasnt too bad. Ive seen some do amazingly well with a very small portion of tongue. Some get graphs or a free flap if a large section is being taken.

Hopefully your mother is being treated at a CCC. You may want to consider a second opinion too.

Best wishes!
Posted By: PaulB Re: Possible recurrence 10 years after initial dx - 06-29-2013 11:43 AM
Sorry to hear of the cancer confirmation. Like any serous life event, blame is sometimes a normal reaction. I hope this passes, and all can work together.
So so sorry but at 81 or hell 71 anything she wants to eat or do for that matter is OK by me. Be sure and keep us posted on what they say next.
Thanks, everyone. I was on a roll last night. I have three older siblings who don't get involved much, if at all, and I know she could use their support. Fortunately I have a wonderful wife, OCF and some incredible doctors who look after my Mom. The docs are also great to me; they respond to my emails around the click and another doc gave me her cell number. That's pretty amazing. I'm certainly open to other doc's opinions and once we have the full path report and scan results I will most likely scour the country in search of feedback. I did that last time and fortunately everyone I spoke with, even internationally, spoke highly of the team that we're working with. Nevertheless, it's good to cover one's bases. Thanks again for listening and responding.
I guess the docs consider this a new cancer since the initial was on the cheek and the new one is on the tongue. Initially I was told it was a 1 cm lesion, but apparently it's approx. a 4 cm tumor. Crap. Due to previous radiation and chemo, and a difficult recovery, surgery (removal of the better part of her tongue) seems to be the consensus with the possibility of induction chemo (Taxol). Not quite sure how it's staged at this point, I'm told it could be II or IVa. If the surgery and possible chemo don't do the trick, some follow up radiation could be used, but that evidently could be risky given past history.

I just learned there was "something" that looked suspect in May. Gotta admit, I'm scratching my head a little wondering why "something" that looked suspect wasn't acted on until two weeks ago. Maybe I'm overreacting, over-thinking, etc. I dunno.
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