#12177 09-13-2007 04:30 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | After much lost sleep and the most anxiety I've felt thus far...........the report from my Spiral CT showed it is scarring in my right lung and not cancer. I got the call at 5:00 today, during the prayer circle at the end of my Varsity cheer teams practice......how cool is that.
The PET I had done showed the spot in my right lung, with an SUV uptake of 4.5. When I read about the PET and saw that 2.5 uptake and above is usually malignant, I felt absolutely hopeless. SO, it is true that we need to step back a bit when we get a PET scan result and await further testing. PETS are awesome tools for our cancer, but they can also cause us tons of anxiety!
My surgery is on September 25th, 5:30am arrival time......which sucks, I'm so not a morning person. We're leaving here as a family on the Sunday before and spending Sunday in DC and then Monday doing some fun things with the kids in Baltimore. The girls will stay with us at a suite until Thursday morning than they will go back home with one of our older girls to get back into school.
I like having a plan in place, I like what Hopkins has to say, they have even included re-radiation in my treatment plan. I'll keep everyone posted.
Thank you for all the support through this, it's certainly been a hectic, scary time.
Love, 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.
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#12178 09-13-2007 04:42 PM | Joined: Feb 2006 Posts: 27 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Feb 2006 Posts: 27 | Oh Minnie I am so happy to hear the good news and especially love the timing of its delivery.
CG to husband, dx 02/09/06 tumor base of tongue spread to lymph nodes. 35 combined xrt/imrt rad plus 3 rounds Cisplatin. Final tx 05/18/06. Parotidectomy & Sel Neck Dis 08/09/06. Lung cancer surgery 04/20/07. All currently in remission.
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#12179 09-13-2007 05:14 PM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Hi Minnie, I am so happy to read about your good news. Very cool timing indeed!
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.
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#12180 09-14-2007 05:55 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Minnea, Glad for the good news. My CTs always show scarring on the upper lungs also. I've had several bronchospies to make sure nothing is wrong. I too hate these 5:am check-ins and then it is hurry up and wait for several hours. We will all be thinking and praying for you next Tuesday. Try to get some sleep. Your doctors seem to have things in control.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#12181 09-14-2007 09:19 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Yay Minnie! I had a strong feeling this was not malignant, but that's easy to say when it isn't your own scan. Having had PET scan scares of my own, I know how hard it is when you're waiting for additional information. I am so glad that burden is off your shoulders.
5 am check-in--yuck. I'm not an early morning person either. Hopefully it won't be too much waiting between then and when you are actually knocked out for the surgery. It's wonderful your girls will be there and you'll be doing fun things beforehand.
You remain in my thoughts and prayers and I will say some special prayers for you on that morning.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#12182 09-14-2007 03:01 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Thanks you guys.........what would we all do without this board? I really thought about that tonight, while reading all the people on here praying for me, sending good vibes, wishing me luck, CARING about what happens. I know for me it lessens my stress AND takes stress off my family as I can unload here rather than on them.
Brian, you are our Champion. You may not get the limelight of Lance Armstrong, but you get the love of all of us.
Love, 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.
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#12183 09-14-2007 03:39 PM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2006 Posts: 378 | Hi Minnie, that's great news and I wish you continued good luck. Go to the Inner Harbor if you get a chance, it's pretty cool, things to do, lots of choices for eating. One of the good stands is from Vacarro's Bakery - try the cannoli. Regards JoAnne
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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#12184 09-14-2007 04:12 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | So glad to hear that good report, Minnie. Waiting for lots more good ones! Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#12185 09-15-2007 04:49 AM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Minnea, what great news. And, I love reading about how your family rallies together so well. You can feel the love emanating from all your posts. Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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#12186 09-15-2007 07:19 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Hi Minnie, the Little Italy neighborhood is not far from Hopkins, that is where I grew up, it is pretty neat and so is Harborplace, the Aquarium, Science Center and Fells Point, also cool. I will be in touch with your family or they can call me, I have given you my phone #'s in the other email.....YES, Brian is our Champion......gosh, what an amazing man, I am so grateful. Thank you Brian! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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