| | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | I agree with Cheyrl and Susan. Waiting is the worst! I just finished waiting 15 days for my biopsy, which report was available the next day, according to the pathology report obtained yesterday. I never waited this long, and usually was told by the pathologist on the spot or by the doctor, picked up my own report in pathology, otolaryngology or meducal records, which I was going to do. I made the mistake of going to the Otolaryncology department first, new hospital, and wasn't like I was used to at other places. The doctor wasn't in, and the PA said the full report was not back yet, and met a few other staff along the way, kindly asking what I was doing there...to pick up my biopsy report. Wrong answer lol, and didn't get it. Susan had a good suggestion to copy your PCP, which I do, but didn't this time, and even they don't give out the results until you see the doctor. Anyway, knowing the results, I feel, slept better. Good luck.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Damien, I always attend the NJ OCF walk. Make sure you find the hostess Susan Lauria and introduce yourself to her. You can ask her to point me out. I will have a burgundy OCF tshirt on and be sitting with a group of survivors and caregivers I have met from the OCF forum over the years. Sadly some of my NJ walk friends are caregivers of deceased members. You both are more than welcome to join me at my table if you would like. If you scroll thru the OCF key staff page below, you will find photos of both Susan and myself. There should be well over 200 attending (hoping its over 300) the walk so this should help. OCF Key Staff photos/bios
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jun 2004 Posts: 30 National OC Advocate/Speaker Contributing Member (25+ posts) | | National OC Advocate/Speaker Contributing Member (25+ posts)
Joined: Jun 2004 Posts: 30 | Damian, I will be at the NJ walk, too. I would like to give you a copy of my two books to help you talk to your children about cancer. I'm sure I will find you, and you will find me...'younger' with silver hair! My friend Ed had a glossectomy 18 years ago, when the surgery was more barbaric, and he eats, speaks.....he is slightly hard to understand for new people in his life. He works in real estate! He has a device that raises the floor of his mouth so food can sit close to his teeth for chewing. He even tastes! I guess there must be taste buds around the tongue area. So, no point in worrying about the unknown at this point. Looking forward to meeting your family.
| | | | | Joined: Feb 2013 Posts: 78 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2013 Posts: 78 | Hi Damian,
I am one of the forum members that recently finished treatment at MSKCC. I was very happy with my treatment and have only good things to say about my experience there and the doctors' expertise. It is a blessing to be in an area with a large number of world class hospitals. Let me know if you have any MSKCC specific questions.
Good luck,
Andrew
Andrew
age 25
early 10/12 - enlarged lymph node area
01/13 SCC of L tonsil, L BOT, 2 L lymph nodes
stage IVa, T2N2bM0, HPV+
2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT
4/13 TX finished
7/13 PET/CT - NED!
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