Hello, all. I want to thank you all for your prayers and concern. The biopsy results are in for my husband, Scott. The re-resection of margin taken from bone in his hard palate area on the 21st came back clean, thankfully, but the mysterious bumps that have popped up around his skin graft site on his neck are mets. We have to wait until Tuesday to find out what this means as far as treatment options (I spoke with a member of the surgical team, but not the "boss")...I'm assuming more surgery, I don't know. These bumps cover such a large area...it's just depressing as hell to think about it. I'm too tired and disappointed to be angry.

Christine

Hi Christine,
I went back and read your original post and if I read it right, he had only the surgery? That chemo and radiation are scheduled or proposed? Many of us feel that radiation and chemo are critical to knocking out micromets and other areas that may not even be detectable on scans. The people who have had multiple modality treatment seem to fare better overall with lower recurrence. If he has indeed had surgery only there are many more tools in the arsenal that are available. Typically they would wait until the surgery healed before they would start radiation anyway. It doesn't seem fair to have extensive surgery and then radiation on top of it but it is quite common and in most cases quite prudent.

Recent studies with breast cancer survival have shown that the women treated with surgery and radiation fared significantly better than those with surgery alone.

I went back and re-read the post again and somehow missed that he had been radiated last year. They may be able to retreat with IMRT.

He may also be a candidate for IMPT. There are only three IMPT treatment facilities in the US today. Go to the "currently in treatment, re: proton therapy" thread and there is a lot of information about IMPT.

He may be a candidate for brachytherapy as well.
These are just additional possible tools to ask the oncologist about.

Thank you, Gary. The more information I have, the better. I've realized from your recent posts just how knowledgable you are about treatment options. I appreciate you sharing that expertise.

The whole area that is erupting in small tumors is the very area radiated a year ago. I guess that's why I'm so alarmed that that's where the most cancer activity seems to be. When the surgical incision from last month failed to heal in that area initially, I blamed it on previous radiation, and I even thought that might be why the skin graft wasn't taking. Obviously, it's not healing because there's so much cancer in that area. I had no idea it could grow this fast. It's scarier than I imagined. We knew docs planned more chemo (from this past October to December, Scott had 2 rounds of Docetaxel, Cisplatin, and 5 FU, but they really did a number on his blood counts so they switched him to Methatrexate; he had two rounds of that from December to January just before surgery ) and we knew that more radiation was dependent upon what kind of radiation he had before at the previous facility. But...we thought that would happen as a safe-guard, not because they had no choice due to mets only one month post-surgery.

Christine

Hi Christine,
it is one of the paradoxes of radiation therapy is that the very treatment used to treat cancer can also cause it. I don't have a handle on the numbers yet or even if it is something to worry about(like it be very uncommon). Some people have mentioned
"radiation nodules" and having to have those removed. I wish I could be more specific. It is worth discussing with your radiation oncologist.

Let's start from the beginning. I am unclear of the chronolgy of events. He had radiation (type- XRT? IMRT? w/chemo?) a year ago and then they did "salvage surgery" a year later, with a second procedure a month later and then currently they are determining need for a third possible procedure? Is that accurate?

Based on the seriousness of this I would be seeking second opinions from possibly Johns Hopkins in Maryland, probably the closest comprehensive cancer center to you geographically. http://www.nccn.org/profiles/hopkins.htm
Your doctors may help you to arrange that.

Also, Christine,
My husband is having treatment at University of MD Medical Center and we are very happy with the team. They have a tumor board there and we have had very good treatment. For head/neck cancer, it is very good. If you want any other information, just let me know.
You and Scott were in my prayers today!
Debbie

Gary,

Here's the timeline, simplified:

10/02...biopsy reveals T1 SCC in retromolar area

11/02...tumor removed "successfully" by local ENT surgeon

12/02-2/03...33 radiation treatments (I don't know what kind) at local cancer facility --they made a mask for him and aimed the beam at a certain spot on his jaw each time

9/03...CT shows recurrence, we change docs

10/03...biopsy of tonsil and hard palate at University of Virginia are positive

10/03-1/04...chemo at UVa

1/21/04...surgery at UVa to remove hard palate, tonsil, and do right radical neck (where a tumor the size of a small orange was removed from salivary gland)

1/29/04...incision below ear begins deteriorating

2/21/04...re-resection of bone in hard palate area (due to questionable margin on 1/21), skin graft to neck below ear, gold weight put in eye (due to total paralysis on right side of face)

2/24/04...in three days, several bumps appear around skin graft site; site itself is deteriorating. Biopsy of one lesion (bump) is taken

2/27/04...biopsy report: bone margin in mouth clean but bump from neck is metastatic

There are now about 20 bumps surrounding the skin graft site. These have appeared in less than a week.

We go back this coming Tuesday to see what happens next...I only guessed at surgery, not sure. I spoke with a resident today and not the head surgeon. I do feel good with this team of doctors, but if going to a bigger place means more/better options, we'll do it.

Thank you, Gary and Debbie, for your responses!

Christine

Hi Christine,
In my opinion, for what it's worth, it sounds like you have done all of the right things. If I were in your shoes, I would taken the same path. I can understand why you have confidence in your current medical team and I would stay with them.
I would discuss the possibility of having Kimmel (Johns Hopkins) review the case just to be sure that all aspects have been examined. There is always the possibility of having access to a clinical trial and more treatment options.

I will keep you and Scott in my prayers.

Thank you for your guidance, Gary. This is such a difficult time. Doing research about Johns Hopkins has at least kept me from feeling like I'm sitting on my hands.

Christine

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