| Joined: Aug 2018 Posts: 3 Member | OP Member Joined: Aug 2018 Posts: 3 | My Dad was diagnosed today with tonsil cancer via an MRI. I don't know what stage as of yet. My parents live near Cape Cod, Mass., most of the year, but also have a condo in Conn. (Which is where I live.) Does anyone have any recommendations for a top doctor in thus field fir my dad to see? His local ENT on.the Cape recommended a doctor at Mass. General, but I'm wondering if there is an expert in Connecticut he should consider. Any and all advice is appreciated. Thank you.
Michelle acri
| | | | 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 | Welcome to OCF, Michelle! Im sorry to hear about your fathers recent diagnosis! You're in the best place for help from people who have been thru it. We''ll do our very best to support you and your father with up to date, correct info. As far as doctors go, you may want to call your fathers insurance company. They would have a list of doctors for every specialty you are looking for. A doctor referral site may also be a resource for finding your father doctors. At OCF, our members are patients/survivors and caregivers without medical backgrounds so we are not qualified to rate physicians. Im pretty sure every patient/survivor on here if asked would rate their own doc as "the best". Instead of focusing on one specific doctor, it may be a good idea to look for a cancer treatment facility. At a Comprehensive Cancer Center (CCC) is where you should find the top doctors who all work together using a team based approach so everyone is on the same page. At a CCC the doctors all get together and discuss each individual case at whats called a tumor board meeting. Patients and caregivers are able to attend too. Im not completely certain but I think Mass General is a CCC. In the US, the top CCCs for oral cancer are Sloan Kettering, Moffitt, MD Anderson. Ive added some links to help you at the end of this post. Read and learn about oral cancer (OC) so you can be a strong advocate for your father. OC is a horrible sickness to have. OC and treatments for it can be hard on patients. Since you've found us dont worry, we will help get you and your father thru whatever he faces. As you share the bad news of your fathers cancer with friends, loved ones and co-workers, many will offer to help. People are genuinely good and you definitely will need help to get thru everything. Its a good idea to take down everyone who offers contact info and begin your list of helpers. Hopefully you will have someone who can be his caregiver. Anyone who has offered to help, take them up on it. Even if its just to drive your father to his treatment one day a week, its a help. There are a million small things that can be done to make this as easy as it can get. Dont be afraid to speak up and ask for help! Anyone who asks what they can do, they really want to help so if you need a hand give them a job. Take out the trash, do a load of laundry, walk the dog, mow the grass, pick up children or even playdates so you can get a break (of course that is if you have children), picking up groceries or cooking your family a meal are all small things that add up to making your life easier in this difficult time. Best thing you can tell your father to help him at this point is to eat. He should have all his favorites, desserts too! Dont worry about calories or gaining a few pounds. During your upcoming treatments he will probably be like most of us and lose weight. If he's on the average or slim side having a few extra pounds going into this is a smart thing to do. Once your father starts treatments (if he does radiation... most of us unfortunately do end up doing rads), he will need to focus on his intake as much as possible. The better he does with his intake, the easier things will be for him. I cant stress enough how important it is to not lose any weight which can be very difficult to do. Patients weight loss is an early indicator of patients who are starting to struggle. During rads (if rads are part of his treatment plan), patients need at the very least 2500 calories per day and 48-64 oz of water. A patients intake is one of the most important things to focus on in order to get thru everything as easy as possible. I dont want to go too far ahead of myself but intake is a huge part of going thru cancer treatment of any kind so the sooner your father begins to watch his intake closely the easier it will be to do later when he is being treated. Stick with us and we will do our best to answer your questions and help guide you and your father thru the treatment and recovery phases. It can be a long road but you arent alone, we are here to lean on. Hope I didnt overwhelm you with too much info. Best wishes to you both!!! NCI list of CCCsUS News Best Hospitals ListOCF main site --- Diagnosis OCF main site --- Treatment 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 2015 Posts: 133 Likes: 7 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Feb 2015 Posts: 133 Likes: 7 | Mass General and Dana Farber are affiliated (Partner's healthcare). I would suggest that these are two of the leading cancer centers. It is possible that not all appointments (follow ups, etc.) need be done in Boston, I have been in the care of Dana Farber since 2003 and they are great.
SCC stage 1 Nov. '03, SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15 SCC stage 1, lower gum Mar '23
TLC356
| | | | Joined: Aug 2018 Posts: 3 Member | OP Member Joined: Aug 2018 Posts: 3 | I really can't thank you enough. I will read through everything and start trying to get my head wrapped around it.
Michelle acri
| | | | Joined: Aug 2018 Posts: 3 Member | OP Member Joined: Aug 2018 Posts: 3 | Thank you so very much. That makes me happy to hear that.
Michelle acri
| | | | Joined: Jun 2018 Posts: 1 Member | Member Joined: Jun 2018 Posts: 1 | Dr derrick lin mass eye and ear he is tge best my husband just went thru this in jan and finished everything on may 9 | | | | Joined: Mar 2018 Posts: 83 Likes: 1 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2018 Posts: 83 Likes: 1 | My dad had the same team at Mass Eye and Ear as Chris rs husband, but in May. Just a phenomenal hospital. Nurses were so great.
Last edited by Vicky1; 08-07-2018 08:34 PM.
Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC Mandibulectomy and free-flap reconstruction 5/30/18 Diagnosis changed to SSC. Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18 Decided not to do any more Cisplatin after the first one. Finished treatment on 8/31/18. 3.19 Abscess & Recurrence wide mouth resection 4.16.19 Scapular Flap Reconstruction surgery 9.6.19 Clear CT! 8.6.20 Clear CT!
| | | | Joined: Mar 2018 Posts: 83 Likes: 1 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2018 Posts: 83 Likes: 1 | By the way, if you need a place to stay, the Beacon House is affordable and within walking distance. Little kitchenette and laundry facilities, too.
Dad was diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) an uncommon variant of SSC Mandibulectomy and free-flap reconstruction 5/30/18 Diagnosis changed to SSC. Began treatment of 30 rads and 5 Cisplatin Cycles on 7/18/18 Decided not to do any more Cisplatin after the first one. Finished treatment on 8/31/18. 3.19 Abscess & Recurrence wide mouth resection 4.16.19 Scapular Flap Reconstruction surgery 9.6.19 Clear CT! 8.6.20 Clear CT!
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