I need some opinions! (And I know there are plenty of them here!! :p )Tomorrow we go to see our doctors at UVa. I have no idea what they'll tell us, but just in case we are not satisfied with the options they present us with regarding my husband's recurrence, I will question them about treatment options I've read about here.

Additionally, in doing research about Comprehensive Cancer Centers, I've discovered that Duke in Durham, North Carolina is nearer to us than Johns Hopkins in Baltimore. Not that being closer is the point. We will take whatever measures are within our means to find the appropriate treatment for Scott. We plan to ask about sending our records for another opinion if need be (or we'll take them in person), so I've been doing travel research. The Johns Hopkins option will take 7 hours to drive; it will cost 1800.00 to fly. Duke will take just over three hours to drive, so flying would not be necessary. However, I don't know if Duke's reputation is as good as Johns Hopkins'. And if we are talking about reputations, I have a friend who lives in CA who would let us stay with her if we wanted to see if City of Hope could take a look at my husband's case (and plane tickets to LA are 1/2 of what they would be to fly to Baltimore!!) She says City of Hope is fantastic.

So, my question is this: If we end up going for another opinion, who knows anything about Duke, City of Hope, and Johns Hopkins to make a good comparison?

This may be moot, as my husband's condition has deteriorated since the weekend (the number of small bump-tumors on his neck/jaw have increased considerably...from 2 to 12 to 20 to 30 to now over 40 in one week and he is having increased ear pain). We may just have to let UVa do what they can to get it under control, but if they give us the "there's not much we can do" song and dance, we're considering hittin' the road. We are not willing to throw in the towel. We don't really want to switch to another treatment center because we do love the folks at UVa..they've been very good to us. The truth is, though, they don't have the means of the Comp. Cancer Centers, and we want technology on our side.

Christine

hi Christine,

i was treated at Hopkins in 01. my experience is fine and i think the folks there relate to many patients very well..

i've read hopital ratings that put JH at #3 for cancer and #1 for head and neck stuff. they are well recognized nationally.. they also recently received a very large contribution that i think was the largest ever for the hopital... to support cancer work... thus the facilities are modern.

i stayed in hospital housing across the street from the cancer center for 7 weeks. it made treatment convient. there are various places for out of towners to stay and they have staff to help people locate something that suits.

if you want more info, please contact me offline.

best wishes for you both.
larryb

Hi Christine,
I looked at the sites for different NCCN hospitals and they don't always mention Head & Neck cancer. When they do, they really talk it up. Whether this has any significance or not I don't know. Duke has 3 clinical trials going on in their head & neck cancer group but hardly mention that they treat head & neck cancer on their site (there is a phone number for the head & neck group). Most of the NCCN hospitals offer assistance with travel and housing.

There is nothing better than personal experience and Larry has shared that.

There is an outfit called Angel Flight America, that offers free flights for medical purposes in private aircraft.
http://www.angelflightamerica.org/

Hi Christine,

I have no knowledge about the places you mention.
I wanted you to know that whatever decision you make, don't second guess your decision. Full Speed Ahead!!! Please know there are many members of this forum praying for a complete and full recovery for your husband. The tone of your post reflects a strong decisive woman. Knowledge about this will empower you to ask the right questions.

Best wishes, Dan

Thank you, Daniel, Gary, and larry-b! Time is pushing us! I have watched Scott's cancer spread rapidly over the last few days, so I have to be prepared with a few suggestions up my sleeve if docs are hesitant to take action where we are! But I'm terrified!

Christine

Christine,

You were asking where to go and have received excellent feedback on this discussion thread. I am a patient at Johns Hopkins and live in Baltimore. You are welcome to stay at my house should you decide to come to Hopkins and want somewhere to stay.
As others may have mentioned the top-three ranked cancer centers in the US according to US News & World Report are in descending order MD Anderson in Houston, Sloan Kettering in NYC, and Hopkins in Baltimore. As already noted Hopkins has a top ranked ENT department too. While one of the parameters to consider in a place to go for care is the reputation of the institution, another consideration is the reputation of particular doctors that you see. The ENT specialist treating me is Dr. Cummings and the radiation oncologist is Dr. Lee, and I recommend them. I found a clinical trial at http://www.clinicaltrials.gov/ct/show/NCT00006248?order=19 entitled "Combination Chemotherapy in Treating Patients With Metastatic or Recurrent Head and Neck Cancer". I am not expert in interpreting clinical trials' solicitations, but your husband might be eligible and some facilities participating in this trial are near your residence.
In addition to addressing your husband's treatment, please also take care of yourself. I took my 5 and 7 year old children to sessions for children of cancer patients at Hopewell Cancer Support (http://www.hopewellcancersupport.org/) in Baltimore and found that helpful. Perhaps a family support center is near you. This Tuesday Hopkins hosts a head and neck cancer patient discussion group.
I hope that you and Scott have the best possible outcome.

Yours,
Roy