where do we go from here and what to expect-3rd recurrance?

joannaw81

hi everyone, not sure where to start. So after the surgery which my mom had on 3/1/12 which was a 3rd surgery since diagnosis in nov of 2010 we were planning brachytherapy for the tongue. So when we met with the doc to plan the treatment of brachy he said that there still may be some cancer left in the tongue therefore he asked to wait 2 weeks (since it's only been 4 weeks since surgery)and then do an MRI with contrast. The MRI showed vogue enhacement in the tongue area. Now she will have biopsy on 5/11 to confirm that it is in fact a cancer. Met with 3 different doctors and they all say it's 50/50 chance that it's cancer. Reason being is that the area of enhacement is not clear and that mom does not have any pain so itmay be just a scar tissue or somethign else. After the biopsy we will then move on with the treatment which will be eaither brachytherapy alone or intraoperative radiation possibly with brachytherapy and later possible chemio. now the question is how often can MRI show false posstive results? I am so puzzled. Overall the outcome doesn't look to great, I can't believe I am typing this. This is like a bad dream, I just want to wake up from that hell. I'm so afraid for my mom, if she will have to do the surgery it may leave some major speach and swallowing problems. I would like to hear from anyone who had breachytherapy or intraoperative radiation, or someone that had about half of their tongue removed, can you still talk? swallow? I would love to get some hope. Thank you

josh r.

prayers
Hi Joanna,
I don't have any knowledge of what you and your mother are going through with that type of treatment but I do have prayers coming your way. Josh r.

Hal61

Half gone
Hi Joanna,
I'm sorry you and your mom are in such uncertain spaces on her treatment. That's very difficult. I've not had part of my tongue removed, but know of several on the board who have and are doing well.

MRIs can show false positives as long a scar tissue and tissue still active from treatment are there. I don't know how to tell you to move forward with the treatment plan you, your mom, and the doctors agree on, and feel less helpless, but that's what is needed.

Take comfort in the fact that I know several people on this board who have have interoperative and outeroperative therapy, and have kept heart and had a positve outcome and enloyed their lives.

I wish the best for you and your mom,

Hal

Skiffin16

Thoughts & Prayers
Coming your way also...

There are a few on here who have had some of the procedures you are concerned with and doing quite well. I'm sure they'll communicate their knowledge and expereince soon.

Stay Positive and Keep the Faith,
John

longtermsurvivor

Hal had some good things to say
there are people who post here who have had half their tongue removed. They still talk and with practice, pretty clearly. I have half my tongue paralyzed, and people don't even notice as a rule. I can easily talk well enough to be understood on the phone, which is the ultimate test.

I thought they were doing brachytherapy because there was a recurrance in the tongue, maybe i misunderstood. Yes, the MRI can be misleading. This discernment, in an area that is scarred due to previous treatment, can be pretty hard to do. I'm not seeing anything about the current situation that should freak you out, beyond the situation that is ongoing. Gotta take a few deep breaths. This is a marathon, not a spring.

Best to you.


Pat

Jan Trinks

Praying for you and Mom
Joanna:

Sorry I can't tell you anything about your particular situation but do know how hard it is to deal with recurrence and am praying for you and your Mom. God Bless!

Jan (basketcase)

joannaw81

Jan Trinks said:

Praying for you and Mom
Joanna:

Sorry I can't tell you anything about your particular situation but do know how hard it is to deal with recurrence and am praying for you and your Mom. God Bless!

Jan (basketcase)

as always all answers are appreciated so thank you
longtermsurvival:perhaps I wasn't clear after the surgery in March, the margins were "not able to be assessed" because tumor was taken in very small pieces. The doctors said he thinks he took everything out. Because it was my mom's third surgery they wanted to do the brachytherapy as a preciousion and becasue the tumor was very invasive if that makes sense. I'm not exactly sure, it's also very confusing to me, all doctors that we see are questioning this new tumour. Supposely it is not in the exact same spot where the old one was but very close so they think it may also be skipped leasion or new one or it may be just a scar tissue. Anyway the biopsy will confirm what ever it is. I wish I was on this board more to help others like they help me however I have a 3 year old daughter and she always keeps me so occupied as well as my mom's doctor appoitments so please forgive me. Anyway thank you for all the answers.

kimmygarland

joannaw81 said:

as always all answers are appreciated so thank you
longtermsurvival:perhaps I wasn't clear after the surgery in March, the margins were "not able to be assessed" because tumor was taken in very small pieces. The doctors said he thinks he took everything out. Because it was my mom's third surgery they wanted to do the brachytherapy as a preciousion and becasue the tumor was very invasive if that makes sense. I'm not exactly sure, it's also very confusing to me, all doctors that we see are questioning this new tumour. Supposely it is not in the exact same spot where the old one was but very close so they think it may also be skipped leasion or new one or it may be just a scar tissue. Anyway the biopsy will confirm what ever it is. I wish I was on this board more to help others like they help me however I have a 3 year old daughter and she always keeps me so occupied as well as my mom's doctor appoitments so please forgive me. Anyway thank you for all the answers.

Hang in there!
Hang in there and try not to get overwhelmed with worry. I know how hard the waiting is.