Hello everyone. My name is Lisa and I have been reading your posts since sometime in early April when my Aunt Rosemary was diagnosed with Stage 3 SSC of the base of her tongue. Before I go on, I really do want to thank all of you kind, generous and brave souls for sharing your pain and your triumphs with all of us "lurkers". I simply can't tell you how much I admire your strength, your courage and your stick-to-it-iveness in battling this disease. Your stories and of course the information is so valuable to those of us who are newly thrown into this whirlwind unexpectedly.
My Aunt Ro had a large portion of her tongue removed and reconstructed with a grafted free-flap on May 19th. She is recovering well, is breathing on her own, swallowing liquids and has just started eating regular foods again. Her PEG is being removed in a week! We were overjoyed.... until she got the news yesterday that one of the biopsies done during her surgery (way back on May 19th) came back bad. She's now been told that she has a cancer on the floor of her mouth. The bad news is that this one is fast growing, whereas the tongue was a very slow growing variety. She's been offered radiation treatments for six weeks but she really would prefer not to do that. This is my question-
is there any other treatment for cancer of the floor of the mouth? We are hoping that she has some other options to choose from. Of course if this is the only choice she has, she's said she'll do it but I do understand her feelings after all that she's been through already. She'd like to feel that she has a choice, that she can participate in choosing her treatment. Any information you can share or any suggestions would be truly appreciated. We are gathering information on this new challenge before she sees her surgeon and her Oncologist in a little more than a week. And just out of curiosity...... have anyone's biopsies taken six weeks to culture?
That seems like a long time to us.

Thank you and may God bless you all with continued strength, courage and generosity.

Sincerely,
Lisa Stankus-DeStefano
Long Island, NY

"With God, ALL things are possible".

Hi Lisa,

I'm sorry to hear about the relapse your Aunt has experienced. I'm one of the newest here and still trying to learn things myself. I received a response from your Aunt I believe to my post and she seems like a wonderful person. Let her know she is in my prayers please.

My biopsy results took a little more than two weeks to come in. That, unfortunately, was due to the mail. It took that long to get there. When it did get there though the results were given to me the following day.

Peace,

Fr. Mike

First I am sorry to hear your news. It always is worse emotionally when you think that you are out of the woods, only to be turned around again. The only alternative that I know of for this cancer in the floor of the mouth is surgery, and you do not what to go there if you do not have to. It can be extensive; much muscle is lost in the process affecting the movement of the tongue and mastication in general, and it can be disfiguring. Radiation is no walk in the park, but is the treatment of choice here. Chemo is not really effective against SCC that is in this location. This will be a tough road, but it is passable. She has shown great strength to this point; no doubt that same strength will get her through the next obstacle. There is nothing to culture in biopsy for cancer, it is not like culturing bacteria or viruses. So there is no waiting period. They look at the sample under a microscope and they determine if malignant cells are present. My biopsy results for instance came back in 3 days. There is no excuse for this taking this long and it has adversely affected her treatment choices, and possibly even her outcome. She has certainly been harmed physically by the extended delay, when this could have all been addressed at one time. I'd be curious to hear what their explanation for this is, and how they intend to defend this inaction. While there are survival issues that are the most important right now, down the road you may wish to explore compensation for this oversight.

Hi, I had the floor of my mouth removed because of Cancer. They should have your aunt in for tests very quickly to be sure it has not spread to her jaw bone. If not , this is a very good thing. My lining was replaced with a flap from my arm. They took a vein and tissue ane went in thru the side of my neck to do flap. This worked very well for me, the floor of my mouth feel more natural than since all of this started. I have no problems eating or talking except I do get tired because of an artifical bone in my jaw.If they do this , they may leave it bare and do flap later, in 10 days new flesh grew on the floor of my mouth, it covered the bone that was sticking up and rubbing my tongue raw.I was suprised at the growth myself. Even if they do surgery they may still want the radiation.Hope this moves quickly for her after such a long delay.

Hi Lisa,

Unfortunately, there is no way to know what the best treatment is for your aunt. Radiation would be the obvious choice, but as gnelson has pointed out, surgery sometimes is the right choice. Chemo generally is not a viable choice, but if the cancer is truly a fast growing variety, it might just be the ticket.

If you have read any of my posts, you know my daughter is currently undergoing chemo for the recurrence of her tongue cancer. Most of her oncologists didn't really expect the chemo to work, but it is. The tumors are shrinking. I'm not going to paint a rosy picture and tell you that everything is great and the chemo is working miracles. It could stop working tomorrow and we'll be back to square one. But in Heather's case, it was the only treatment available. She didn't have a choice. The only reason it was thought that the chemo might work was because the cancer was fast growing, but it was still a long shot.

Your aunt does have a choice and she needs to ask the doctors to explain all her options. Ask them why they think radiation is the best treatment. And get a second opinion. It would be good to talk to a radiation onc., a surgeon and a chemo onc. Listen to all the advantages and disadvantages, then make the decision.

Rainbows & hugs,
Rosie

P.S. I agree with Brian about the biopsy. 6 weeks is a ridiculously long time for biopsy results. We had Heather's results within a few days. Someone obviously dropped the ball on this and I think you should think about some sort of legal action. But, as he said, that is for later. The important thing now is to get treatment started and beat this cancer!