View Full Version : Now I have tongue cancer
Sun Sep 9, 2012, 12:18 AM
Last week, on the 21 month anniversary of my successful BMT, I was diagnosed with cancer on the base of my tongue. It was like being hit with a truck! This was so unexpected. I'm feeling great physically and have done so well against the odds with my high risk MDS and subsequent MUD bone marrow transplant. Michael and I are trying to gear up for round two - most likely surgery and radiation. More info on our blog, linked in my signature below.
Sun Sep 9, 2012, 05:41 AM
How terrible that you have got tongue cancer! I do hope that they can treat it successfully!
Sun Sep 9, 2012, 07:47 PM
Hi Karen, I'm really sorry to hear that you have another battle on your hands. Winning the war is the long term goal.
I have been doing a little bit of research on Vidaza as I may have had it unnecessarily. There has been a study which associates its use with SCC among other things in laboratory animals. There doesn't appear to be enough data to come to any conclusions about it's carcinogenic effect in humans.
Good luck with your surgery and radiation.
Mon Sep 10, 2012, 12:52 AM
Karen, so sorry to hear about this. Hit by a truck is right.
Tue Sep 25, 2012, 02:17 AM
Johns Hopkins has confirmed my diagnosis and will be scheduling me for robotic surgery on my tongue base to be followed in several weeks with the removal of some lymph nodes, the number yet to be determined. This sort of cancer is usually treated with radiation and chemo but they're trying to avoid that due to my history with the bone marrow transplant. Time will tell. I don't have a date yet - they have to find a slot on the schedule where both my surgeon and the robot are available. Although it is technically classified as stage IV due to lymph node involvement on both sides of my neck, the doctors are very optimistic about my prognosis. There was no evidence of cancer in the rest of my body and the primary tumor is small. It's still difficult to believe this is happening. I'm feeling so well. Just like when I was diagnosed with the high risk MDS, I didn't even know I was ill.
Tue Sep 25, 2012, 10:11 AM
So sorry to hear about this Karen. Do they think this is a secondary cancer from the prior chemo? I know you'll be in good hands at Hopkins. Wishing you only the best.
Tue Sep 25, 2012, 11:30 AM
I too am very sorry to hear this. I wish you well.
Tue Sep 25, 2012, 07:11 PM
I wish you much luck with the upcoming surgery, and pray that the Dr.'s and robot's 'eyes' work well together.
Tue Sep 25, 2012, 09:15 PM
Thank you all. Marlene, the tumor is HPV+ so they don't think it's related to my prior chemo or other predisposing factors for head and neck cancer such as family history or prior smoking. The HPV+ cancers seem to occur independent of other factors. The good news is that HPV cancers generally respond better to treatment than the HPV- counterparts. I'm learning a whole new vocabulary.
So now I'm part of an elite group who has had not one but two rare cancers. Obviously, I'd rather be ordinary! This, too, shall pass. Right now, the difficult part is the waiting.
Wed Sep 26, 2012, 09:19 AM
Thanks Karen. I just sent you a private message with a link to a study on your type of cancer. You may have already seen this though. It basically says your type responds really well to radiation treatments.
Tue Oct 9, 2012, 01:11 PM
I am so sorry Karen. You have a good attitude, which I believe helps the body greatly. Hang in there and I will keep you in my prayers. Lori
Thu Nov 8, 2012, 02:54 PM
There's a longer version in my blog but the brief version is this: my surgeries are done and I'm recovering well. The cancer turned out to be less extensive than believed, limited to the small tumor they removed from the base of my tongue and not in my lymph nodes. I won't be needing chemo or radiation after all! Michael and I are doing a happy dance!
Thu Nov 8, 2012, 04:14 PM
Yeah!!!! That is great news.
Fri Nov 9, 2012, 01:24 AM
Wonderful, Karen. :)
Fri Nov 9, 2012, 01:56 PM
Congratulations Karen :)!
Fri Nov 9, 2012, 02:03 PM
This is a huge relief, Karen. Congratulations!
Fri Nov 9, 2012, 02:06 PM
Hello Karen, Have followed your story all along and really appreciate you sharing it with us. So glad to hear that your scare has gone away. Good Luck tytd
Fri Nov 9, 2012, 04:27 PM
Thank you, everyone! I'll still have regular follow-ups to make sre nothing was missed but it is a huge relief to skip the chemo and radiation. Next month is my 2 year post bmt checkup! Time really flies by.
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