| | Joined: Feb 2011 Posts: 1 Member | OP  Member
Joined: Feb 2011 Posts: 1 | In every posting, article, flyer etc. they tell you to get a second opinion. Our "Heavy's" cancer has now returned and we are in desperate need of a second opinion as his medical team has all but fallen apart. We called Sloan and they basically said that they don't want to come into the middle of something that has already started with another team. Ridiculous! Any suggestions from anyone out there as to how to get another Dr/Hospital to see him? Any help is so appreciated! | | | | | 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 | All you can do is call and ask to have the patient seen asap. It would be helpful if you dont already have copies of their medical records to get them together. Here is a list of cancer centers. http://www.oralcancerfoundation.org/resources/cancer_centers.htmThe following is a list of the top US hospitals. http://health.usnews.com/best-hospitalsBest of luck with this.
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | I agree with Christine. Call and then call again. Talk to the head of the Program and don't take "No" for an answer.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Dec 2010 Posts: 24 Member | | Member
Joined: Dec 2010 Posts: 24 | Hi Lynne,
Getting a second opinion was crucial for me. It was a difference between losing 1/4 of my lower jaw, having another neck dissection,and radiation treatment which was the course laid out by one team , which I did not question at first until I came to this forum and was motivated to get another opinion. The surgeon I went with did everything inside the mouth no trach, no neck dissection, was able to determine the cancer did not go into the jaw bone by taking a sample instead of performing an over the top surgery like the other team wanted to do. Good luck and question everything!
2001 age 30 SCC on LS Tongue, non smoker, casual drinker. Partial glossectomy
2002-2006 yearly Lichen Planus, 8 surgeries, PDT for 6 mths
2007 1/4 glossectomy, neck dissection, radial forearm flap, 18 nodes removed, trach
2009 erythroplakia gums, 3x cut
2011 SCC gums,recovering surgery Feb
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Lynne, I had a team in Wheeling, W Va, one in Morgantown and then in Columbus at ohio State at the Arthur james CCC. They all seemed to take right over each time. Now I have one in Pittsburgh at AGH.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Lynne..without a doubt push for a second opinion. I have never heard of a hospital/doctor say no to providing one. I would call Sloan again and you will probably talk to someone else, hopefully someone more helpful. I went there for a 3rd opinion and saw Dr. Shah. Please don't give up.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 67 | You don't mention where he was seen the first time. There are some fine hospitals closer than sloan. If you are set on sloan, please call the OCF office tomorrow am and I will help you with contacts there.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | lynne - I totally agree with what's being said here. Push for a second opinion... It's bizarre that the team has fallen apart, and left you in limbo - it's a persons life they're dealing with. Take your records and find another hospital/dr. for second opinion. It doesn't make sense thar one can't or won't take over from a previous treatment. Take care
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
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