| Joined: Jun 2017 Posts: 4 Member | OP Member Joined: Jun 2017 Posts: 4 | Thank you so much for all the responses. I feel like I've shifted into a more grounded, problem-solving mode, but I can break down unexpectedly when someone does something kind for me. It's hard to think beyond the immediate next steps, and the last few days have been a roller-coaster. I've done more research, and I've heard from a number of medical professionals suggesting we just stick with our local hospital because it is excellent. I talked to a head and neck researcher at our local cancer center, and he listed what he considered the top five hospitals in the country for head and neck cancer--this included our own local hospital, tied for numbers 3, 4, and 5, which is very encouraging (but I haven't seen that particular opinion also floating around online). I am unhappy with what happened in the oral surgery department, but apparently the ENT surgery department is highly regarded for cancer--maybe much more so than would be indicated by the US News and World reports base rankings. I am quite skeptical of the value of USN college and university rankings, but it is emotionally hard for me to let go of the importance of the USN cancer hospital number. I am tying it to survival in my mind, when it is of course no true guarantee.
What was discouraging about our hospital was the lack of responsiveness. Last week his doctor thought we would get in for CT scans yesterday, but instead it took two full days for the schedulers to get back to us...scheduling the CT scans for next Tuesday and the doctor visit for next Friday. The surgery was scheduled for July 6th, when I will be 37 weeks pregnant and full-term. I had called MD Anderson on Monday for information and I was impressed with how smooth they have made the process of coming in for a visit. After a couple of days of unsatisfying back and forth with the local hospital regarding scheduling, another interaction with MD Anderson, and after MD Anderson said they could likely get us in before July for surgery, I booked tickets and lodging in Houston. Once we started canceling appointments at the local hospital, they called us back out of the blue and gave us a revised surgery date of June 26th, and they offered that they would hold it for us even if we visited MD Anderson. We are not usually the squeaky-wheel types, so it feels a little uncomfortable. But I am glad he will have a little more time to recover before the baby, whichever place we go with.
I wish I knew better how to evaluate the difference between the two hospitals. US News and World Reports says they both have "Best" equipment, but that's kind of meaningless without specifics. Do they really have identically good equipment? It is hard to separate out what is marketing and what really could lead to a more accurate analysis and better treatment for cancer. Hopefully I'll get more details next week. Thank you for listening.
Husband: tongue cancer, T1N0, age 39 at dx, HPV-, non-smoker, no known risk factors self-discovery of spot on tongue 8/12 lesion removal by oral surgeon 8/13, dx SCC 2nd surgery by ENT surgeon 8/13 re-emergence in scar tissue 6/17
| | | | 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 | I dont know if cost is part of your selection in choosing what facility your husband will be treated at. There are a few places that help with free rides on different airlines. There is also something called Hope Lodge where patients can stay for free or very low cost. They are usually very close to the treatment facility and may even offer transportation to and from the hospital as one of their perks. Staying where other cancer patients/caregivers stay can be very helpful with info and support. The info about these programs are in the financial section of the main OCF website. Main OCF site.... Financial AidBest wishes!!! PS... Please add a signature when you can. This helps us to quickly understand your unique situation with your husband. By knowing where your husband is at greatly helps us to help you with more precise info and support. Directions are included in the link thats in the PM I sent you. To review it again, click on the My Stuff tab and then on Private Messages in the middle of the dropdown menu. Thank you! 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: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 246 Likes: 1 | You are doing the right thing keeping your appt at MD Anderson. You might find that it clears some things up for you, if not, you will know that you did not overlook anything.
My husband was diagnosed at a local cancer center. Our medical oncologist encouraged us to obtain a second opinion prior to starting treatment and I'm glad that we followed through. We traveled several hours to Dana-Farber in Boston. After a team review, they assured us that the treatment plan, equipment, and oncologists at our local center were appropriate and we should start treatment locally. Pathology study was redone on slides that we brought -- I also found that very reassuring as I kept wondering if this could all be a mistake!
If you find out that MD Anderson does not agree with initial treatment that was done, or suggests a different plan going forward, it will be difficult, but you need to know. I think you will find that they will provide guidance. Dana-Farber offered to be available to our local MDs if needed, another benefit of the consultation.
I hope that with their help you will get some clarification and be able to make a decision. Waiting for treatment to start is very difficult and so much more so in your case. I wish we could do more... 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
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