| | Joined: Feb 2011 Posts: 3 Member | OP  Member
Joined: Feb 2011 Posts: 3 | March 2011 Dear Sir or Madam, I am a graduate student in Speech-Language Pathology at Portland State University (PSU) in Portland, Oregon. For my Master's research project, I am conducting a survey of people with a history of head and neck cancer. The aims of this study are to: (A) learn about the information and communication needs of people with head and neck cancer, and (B) determine how medical institutions go about meeting those needs. This survey is designed for people who are currently being treated or have been treated for head and neck cancer. You are receiving this invitation because of your participation with a support group for head and neck cancer. If this applies to you, I would like to invite you to participate in this study. Your unique experiences with cancer treatment are important to research in patient care. With an understanding of patients' perspectives and experiences, medical professionals and researchers can better determine what factors lead to more comprehensive cancer care. However, there is no obligation for you to complete this survey; all responses are strictly voluntary. By completing this survey, you are consenting to voluntary participation. There is minimal risk associated with completing this survey; if you experience any discomfort or distress due to the subject matter of this survey, you can refuse to answer any part of the survey or discontinue the survey. If you would like more information about this survey, you are welcome to contact me, or Andrew Palmer, a certified speech-language pathologist (SLP) at Oregon Health and Sciences University, who is a member of my research committee. Sarah Sellevaag Email: [email protected] Andrew Palmer Email: [email protected] Phone: 503-494-2421 Toll-free: 1-800-222-6478 extension 2421. The responses you provide to this survey will be summarized with those of other people with head and neck cancer. All responses will be treated anonymously so that identification of individuals is impossible, as approved by the PSU Institutional Review Board. Completion of this survey should take no more than 30 minutes. Questions are multiple choice or fill-in-the-blank. Here is the link to the survey: https://www.surveymonkey.com/s/XKQ8WPLThank you for taking the time to share your experiences and opinions. Our goal is that research like this will lead to better coordinated medical care for people with head and neck cancer. Sincerely, Sarah Sellevaag, BA Graduate Student Researcher Portland State University | | | | | 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 | This is a very quick survery. It takes less than 10 minutes. I hope more than just myself and Charm will help her out with the survey. Its a chance to help change how oral cancer patients are treated.
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: Feb 2011 Posts: 117 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2011 Posts: 117 | Ditto what Christine said..... I did the survey also. Questions are super easy and the whole thing takes maybe 10 minutes.
Ingrid K
DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | Will do it when I get home!!!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | I'm in too as soon as I finish my work today.
d2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Done. That was one of the better surveys I have taken.
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
| | | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 |
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | 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 | Good job everyone!!! Thats one thing OCF members are so good at, teamwork!!!! So happy we are able to give our input to help make it easier for other oral cancer patients.
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: Apr 2010 Posts: 24 Member | | Member
Joined: Apr 2010 Posts: 24 |
Tommy
Initial Staging T1N0M0
Invasive SCC of the R Lateral tongue
Moderately Differentiated
Evidence of Perinureal Invasion
Depth > 3 cm
Diag on: 03/25/2010
Partial Glossectomy and Modified Neck Disscection on 04/21/2010
Clear Margins/No Radiation or Chemo
Age 40
Former Smoker Quit 1/03/2010
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 |
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | |
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