| | Joined: Apr 2016 Posts: 75 Likes: 2 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Apr 2016 Posts: 75 Likes: 2 | Hi, well hoping someone can help. I don't understand what is going on with Dana Faber. My oncologist left the practice suddenly in January due to personal reasons and doing that he has displaced 800 patients, me included. There are only three oral oncologist at head & neck right now. I met with my new oncologist a few months ago and suddenly now I have developed a lump and that broke open and a harder nodule has come up and when I called the doctor assistant she stated no room to see me and set up an appointment for end of June. When I told her the seriousness of what I think is happening she commented do I understand that 800 patients where displaced? I don't know what to do I need help and advise. PLEASE HELP, MICHELE
SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | That is horrible. They should have sent a letter and told you back in January who was taking over your care. Call patient relations first, 617-632-3417, then call the President's office, 617-632-4266, if you don't get an appointment immediately, third is go to the ER if there is an open sore. I, personally, would consider the ER first if there is an open sore. That gets you assigned to a doctor quickest.
I got these numbers off of their website and I have not been there. I hope this helps.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 246 Likes: 1 | Do you have an ENT or other physician to turn to for advice? I can't imagine being in this situation. They must be obligated to cover the displaced patients. Keep in touch with us.
Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | I think this is very irresponsible of the hospital/department/doctor to leave patients in this predicament. I don't know if Dana Farber has an ER, our hospital here doesn't. But the ER at any other hospital can contact the doctors at Dana Farber for you and get you some treatment. If I were you, I would get on the phone and make a lot of noise irrespective of whether the ER is involved or not.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Apr 2016 Posts: 75 Likes: 2 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2016 Posts: 75 Likes: 2 | Thank you I actually called my family physican and have an appointment tomorrow at 2:00 with and E&T who is an otolaryngology for head and neck and is a part of Mass Eye & Ear. And thank you uptown I will call those phone numbers next week. I am looking towards dealing with Mass General/Mass eye & ear in the future. So sad about this all. And looking at these web sites I have found so much information, thank you all. I can't tell you how many times over the last 9 years that this cancer does not go to the brain, even though I have a co-workers sister who died from this condition going to the brain. Yesterday I was looking and reading that indeed it is true. Well I will be in touch and thank you all, Michele
SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Michele
I am sorry that DF let you down. Mass General is a wonderful institution and I am glad you have that option locally! We Clevelanders and Bostonians are lucky to have multiple resources available. Please keep us updated - hoping for good news.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Jan 2013 Posts: 80 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 80 | Hi Michelle,
How horrible to be (and feel) deserted by your doctors and Dana Farber; that seems so uncommon for them. However, welcome to the Mass Eye & Ear / Mass General group. My ENT is with MEEA (Dr. Kevin Emerick); I've had very good experiences and highly recommend MEEA.
Best wishes,
Nancy
Nancy
Age 56 at diagnosis
Neck Lymph node removed 11/2012
Tonsillectomy perfomed 12/2012 - identified as primary
SCC Left Tonsil with Left Node involvement, DX 12/2012
RX started 1/29/2013, finished 3/23/2013;
Daily IMRT (35 Sessions)
Weekly Taxol/Carboplatin (6 weeks)
PEG placed after week 4 (3/1/2013)
PEG removed 6 1/2 months later (8/12/2013)
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | You've gotten some great advice here so I am just going to wish you luck.. and many hugs.
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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