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Looking for a bit of advice #198289
05-07-2019 11:09 AM
05-07-2019 11:09 AM
Joined: Aug 2016
Posts: 9
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Bonita Offline OP
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Bonita  Offline OP
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Joined: Aug 2016
Posts: 9
My Hubby has just been diagnosed with oral cancer/tongue. We live in western Massachusetts. I’m/we are going to have lots of questions and I am grateful you are all here. After the results of the biopsy the oral surgeon said hubby has to get himself to a specialist for blood tests, xrays , MRIs cat scans etc.. He/we are thinking of Dana Faber, Mass General, ? or a particular Dr at Mass Eye and Ear. Mass General appeals to hubby because his oral surgeon mentioned that Cooley Dickinson Hospital in Western Massachusetts is a Massachusetts affiliated cancer center. So if he had to have radiation he could have it there and be home in his own bed at night. But I see you all mention it is best to go to a Comprehensive Cancer Centers which would mean Dana Faber.

So for now our questions are, and I know this may sound stupid, but what exactly does it mean when you all talk about a second opinion. Is that after he is given a plan at one of the places I mentioned above, he should then go to the other one to see what they say? Or would the Dr his oral surgeon is sending him to be the second opinion?

Next, which is better Dana Faber because it’s a CCC or Mass General because it has an affiliate near us?

Thanks in advance for all of your help.

Last edited by Bonita; 05-07-2019 11:59 AM. Reason: Grammar :)
Re: Looking for a bit of advice [Re: Bonita] #198295
05-07-2019 08:05 PM
05-07-2019 08:05 PM
Joined: Mar 2018
Posts: 56
Maine
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Vicky1 Offline
Supporting Member (50+ posts)
Vicky1  Offline
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Joined: Mar 2018
Posts: 56
Maine
I don't know the answers to your questions, but Mass Eye and Ear is excellent. The whole team is just phenomenal. They are the primary referral site for head and neck cancers in New England. The surgeons teach at Harvard Medical School. Mass Eye and Ear and Mass General work very closely together, because they are next door to one another. Many of the staff work at both hospitals. We are from Maine and my dad was diagnosed in wintertime, so we stayed here for radiation/chemo but when to MA for surgery.

Last edited by Vicky1; 05-07-2019 08:18 PM.

My father's information:
64 years old
Diagnosed 2/28/18 w Stage 4, N0 Verrucous carcinoma (VC) is an uncommon variant of squamous cell carcinoma
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
Re: Looking for a bit of advice [Re: Bonita] #198296
05-07-2019 08:15 PM
05-07-2019 08:15 PM
Joined: Jun 2007
Posts: 10,318
PA
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ChristineB Offline

Administrator, Director of Patient Support Services
ChristineB  Offline

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Joined: Jun 2007
Posts: 10,318
PA
Welcome to OCF, Bonita! Im very glad you have found our site to help you and your husband get thru everything you have coming up. We will be here to help you both as much as possible with correct, up to date medical advice and support. As a caregiver, you have a very important but at times also very difficult role!!! Make sure to take time away just for you to clear your head from time to time. Even a quick walk around the block can be uplifting when someone feels the weight of the world is on their shoulders caring for their loved one.

At OCF, we are 100% neutral about which treatment facility any of our members select. There are many websites which have their own very specific criteria for rating hospitals and treatment facilities. OCF has always operated on a science based theory and does not favor one place over another. only saying what has been scientifically proven ... CCCs have been scientifically proven to have better success rates than other treatment centers. Remaining neutral and not accepting advertising are important to ensure OCF remains impartial which is part of the Health on the Net's certification. We are one of the very few online public message boards for cancer to meet the stringent criteria necessary to qualify to carry the prestigious Health on the Net's badge. OCF encourages our members to seek out the best medical care they can and then "go with it".

Second opinions are VERY important!!! As far as treatment facilities go.... its been scientifically proven CCCs have the best outcomes for patients treated there. I would suggest try to get into a CCC and yes its important to go for a second opinion at a different unrelated CCC (if that is at all possible for your family). Some doctors will suggest to their patients to go for a second opinion. Its normally up to the patient to track down whatever facility they decide upon for another opinion. CCCs use a team based approach so all the specialists are on the same page. The meeting are called tumor board meetings where patients are able to attend and ask questions. This is a fantastic opportunity to not only learn more about their illness but to see their medical team in action sharing ideas coming together to create your husbands individual treatment plan. As far as second opinions go, your husband should try obtaining a 2nd opinion from another facility that is completely independant of any facility where your husband has already been seen to get a true, unbiased 2nd opinion. I have included a list of CCCs where you can search by area if distance is part of whats most important to you in your facility decision. One important thing to remember if concerned about location... do not allow location to choose your fate! .

Other help is available for OC patients and their caregivers for financial assistance. Theres places that will transport cancer patients on their corporate planes or different airlines who provide cancer patients free or drastically reduced fares so they can get to their treatments. It cant hurt to look into these organizations if your family or anyone else needs financial help while they are dealing with cancer, treatments, etc. Each organization has its own criteria and rules but there are many charities and places that help cancer patients, their caregivers and families.

Theres millions of thing you will learn about oral cancer, treatments, recovery, even things about CCCs. We will help get you guys thru everything. By reading posts here and also on the Main OCF site, you will learn a ton of important info. Just remember the stories you read about on our public forum are not what everyone goes thru. We're all different and will respond to medications, surgeries, treatments, recoveries in our own unique way on our individual timeline. One commonality Ive noticed is younger OC patients tend to bounce back quicker when recovering from OC and its treatments. Also those patients who do the best on keeping up their daily intake of at least 2500 calories and 48 oz of water. For now, try encouraging your husband to eat all his favorite foods. If hes on the slim side, he should try adding a few pounds as many patients struggle to keep their weight steady. If during treatments your husband is losing weight every week thats a sure sign he isnt taking in enough and needs to immediately increase his daily calories which for most of us is very difficult to do when we're not feeling well. Theres tons more I could tell you but Im sure you both are dealing with many unfamiliar things with the recent cancer diagnosis. Hang in there and its ok to lean on us, we completely understand where you're both coming from.

Best wishes!!!


NCI list of CCCs

US News Best Hospitals List

Main OCF Site, Understanding Oral Cancer

Main OCF Site, Financial help for OC patients including flights, lodging, etc


Christine
SCC 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 smile
Dana Farber [Re: Bonita] #198302
05-08-2019 06:03 AM
05-08-2019 06:03 AM
Joined: Feb 2015
Posts: 54
Boston suburb
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tlc356 Offline
Supporting Member (50+ posts)
tlc356  Offline
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Joined: Feb 2015
Posts: 54
Boston suburb
I've been treated at Dana Farber since 2003 and have been operated on twice there and I can tell you they are great. Both Dana Farber (along with the joined at the hip Brigham & Women's hospital) and Mass General are part of Partners Healthcare and I highly respect MGH.
Because they are both in the same system, it's possible that your local hospital is also affiliated with Dana through Partners. Check that out, and if that is the case, I'd go with Dana Farber since they only do cancer and the whole 11th floor (on Jimmy Fund way) is dedicated to Head and Neck Oncology.
I've sent you a private message.

Here's what I've posted before:
Based on my experience having had two operations for oral cancer since 2003, I would like to suggest four thoughts for newcomers.

1) Since oral cancer hits less than 1% of the population, get professional care from a center (CCC) that specializes in cancer and has oral cancer specialists on staff.

2) Don’t hesitate to travel extra hours to such a center-your disease can be life threatening. If distance worries you, see 3 below.

3) Follow-on care may be done at a location which the CCC works with and is nearer to you.

4) Don’t wait to get help, and don’t second guess expert opinion, but if concerned do get a second professional opinion.

Last edited by tlc356; 05-08-2019 06:15 AM.

SCC stage 1 Nov. '03, SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
Re: Looking for a bit of advice [Re: Bonita] #198304
05-08-2019 07:10 AM
05-08-2019 07:10 AM
Joined: Oct 2008
Posts: 228
NY state
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travelottie Offline
Gold Member (200+ posts)
travelottie  Offline
Gold Member (200+ posts)
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Joined: Oct 2008
Posts: 228
NY state
My husband and I traveled 2 1/2 hrs. for a second opinion at Dana Farber after biopsy results and treatment plan were proposed by local medical oncologist.

Consult was very well organized. In one appointment he was examined by a medical oncologist, surgical oncologist and radiation oncologist. I found it particularly reassuring that their own pathologists recheck the biopsy results ahead of the appointment (a specimen slide is forwarded from the original lab.) Our local oncology facility took care of organizing and sending all records and lab slides. New patient coordinator at Dana-Farber was most helpful.

The MDs discuss the case, present their recommendations, and then you have time for questions. In our case, the recommendation was that treatment could proceed at our local facility. If this was presented to us as questionable, we would have obtained treatment at Dana-Farber.

My main answer to your questions is to first set up a second opinion at a CCC. Then you can make a decision on how to proceed with more confidence.


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
Re: Looking for a bit of advice [Re: Bonita] #198314
05-09-2019 04:06 AM
05-09-2019 04:06 AM
Joined: Aug 2016
Posts: 9
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Bonita Offline OP
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Bonita  Offline OP
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Joined: Aug 2016
Posts: 9
Thank you all for your advice. I have to admit my husband is very torn between Dana Faber and Mass General. I think part of the confusion is that the oral surgeon recommended a surgeon at Mass General and our regular dentist recommended a radiologist at Dana Faber. I suggested he make an appointment at both places. But he doesn’t want to do that :::shrug:::: So I believe today he is going to make an appointment at Dana Faber. The oral surgeon said if it takes longer then two weeks to get an appt try someplace else. Possibly, timing could be a deciding factor. Thanks again. Have a lovely day smile

Re: Dana Farber [Re: tlc356] #198330
05-13-2019 07:33 PM
05-13-2019 07:33 PM
Joined: May 2019
Posts: 4
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Fpm6464 Offline
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Fpm6464  Offline
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Joined: May 2019
Posts: 4
I too was treated at Dana Farber. It’s a great place. I had surgery on 4/16/19 for stage 2 tongue cancer.
Paul


Fpm6464
Re: Dana Farber [Re: Fpm6464] #198335
05-14-2019 02:03 PM
05-14-2019 02:03 PM
Joined: Aug 2016
Posts: 9
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Bonita Offline OP
Member
Bonita  Offline OP
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Joined: Aug 2016
Posts: 9
Thank you Paul. I hope your recovery is going okay.


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