| | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hello Con,
Just read about your recurrence, so sorry that you have to go through so much again-and am so inspired with your strength and courage to do so! People on this fourm are truly amazing.
Shar is right, my mom did recently go through brachy therapy. She was not able to have a partial glossectomy due to new found heart problems that we were unaware of until pre-op testing.
I'm not sure what questions you have, I am happy to help you in any way that I can. I can tell you right up front that her RO was very pleased the last few times we saw him, we see him again today--hoping for the same results!
My mom's brachy was done in a CCC, I do believe that you need a skilled person to do this procedure.
I'm here and available to any questions I can help you try to answer. You can also e-mail me, it is listed in my profile.
Will be thinking of you.
Donna
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I just found out the cancer is back and on the left side again. I posted this in the anger & fear area. I still am in shock that they didn't call sooner and tell me. LOL but i am gonna whip it again.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | You 'second-time arounders' have done it once before and just need to open a bigger can of whoopass this time around!!
So sorry to hear that and so feel for you,
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Ilost 1/3rd of my tongue the 1st time and had no rad or chemo. I hope this time is just as easy to deal with. I had a radiologist tell me I should have had rad & chemo last time. Maybe he was right, maybe not but I hope to find out tomorrow after they finish in the operating room. Whatever they want I will agree to.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Con,
I'm on my second cancer, tongue this time, and I had one third of my tongue removed. My speech is very good, better than I expected and I am slowly working my way back to eating. Good luck with your surgery or whichever treatment option you choose.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hi Con,
Just met with mom's RO yesterday, he is so pleased with her healing. Brachy made all the difference!
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Take it from me,, they can all make mistakes as I found out yesterday at the James Cancer Center at Ohio State. Seems a local radiologist was right and I should have had Rad Chemo combo. My Dr at the Cancer Center says I need it now as before he didn't think so. Oh well , we are all human and make human mistakes, Just as long as it works I will be happy to go thru it.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2007 Posts: 18 Member | | Member
Joined: Jul 2007 Posts: 18 | So sorry to read about your recurrance. In answer to your question about how you will know if the cancer is gone without surgery, I think the answer is that you will never "know." But I've read enough on this board to believe that even with surgery you never really "know" either. From what I've read, it seems that each case is different. There are so many variables in the mix. My advice is to find a doctor that you believe is knowledgable and one that you can trust to look at your case and your particular set of circumstances. Make sure the doctor knows what is important to you. For example, living to see another month or year is of utmost importance to some. For others, it's quality of our time on earth that matters. Some will avoid death at any cost; others believe there are things worse than death. If there are several options for treatment, ask him what he would do if he were in your place. Ask him to explain his answers fully.
CG to mom (non smoker) during treatment. Dx 7/07 SCC side and base of tongue, Stage 3/4, T4, N1. Refused surgery. Completed tx (41 rads, 8 chemo) 10/07. PET on 1/9/08 showed active cancer. Fought bravely until the end -- 2/12/08.
| | | | | Joined: Nov 2007 Posts: 45 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 45 | Well - it's been about 3 months since my bio and I've been through a CT, PET and now just had a MRI. Both rad Drs. think the internal Rad is the way to go. The CA Dr. still thinks I should have the whole works. The PET showed the CA on the left side of my tongue ( same place as 7 years ago ) and going from the front to the back, however it has not crossed the center of my tongue to the right side. Now I'm waiting for a review of all the information from the Dr. I really feel that I want to have the internal and see what that does before I commit to Chemo and surgery. Who knows!! My ENT seems to confir with the rad Drs. Thanks for all your support.
Connie
con
| | | | | Joined: Nov 2007 Posts: 45 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 45 | Well Things have changed. I am now going to a oncologist surgeon, the best we have around. I start chemo tomorrow, had a scope done on Thurs. ended up on a ventilator for awhile ( I really don't know why) and morphine, so I went home a happy camper. I started a blog because I appreciated Kate's so much. Hope my experience will help someone else.
con
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