Welcome to OCF! Im so glad you have found our site to help you and your husband with info and support. We've been thru many of the same things your husband has and can help guide you with our view from the patients or caregivers perspective. One important thing to always remember... OCFs members do not have medical degrees or years of medical education, clinical patient experience, your husbands complete medical history (not that it would help us anyway) or the patient in front of us to examine or to ask clarifying questions. We arent qualified to second guess a doctor or know what they were thinking when drawing up a patients treatment plan. They should be going by guidelines every facility in the US abides by which is a highly detailed flow chart for all kinds of different scenarios.
Thanks for giving so many details! You're absolutely correct... the more you pass along to us, the easier it is for us to understand the situation and try to help. Just like any serious health condition, anyone with cancer can and should go for a second opinion before agreeing to a specific treatment plan. If at all possible, the patient should have a consult at a top Comprehensive Cancer Center (CCC). I know for many it seems like an impossible task to travel far to be examined/treated, but theres places to go for assistance with transportation. From free to ridiculously low airfares to patient hospitality houses where patients and their caregivers can stay at very nominal cost ($5, $10, $20 a night) or free when they live a great distance from the CCC. I'll give you the link to the financial page if thats something you would like to look into. The link to the financial help section is at the end of this reply...
Even though Im not a medical professional, I am curious what led up to the second part of the treatment plan where another major surgery is necessary??? If this was the plan from the beginning, WHY??? Especially since the outcome for the original surgery isnt anything anyone can predict, not even the most experienced doctors! I cant imagine the initial diagnosis and/or treatment plan would knowingly put the patient thru another mandibulectomy, especially after rads. Plus, that you and your husband were unaware of it and surprised to hear theres a need for another mandibulectomy The only explanation I can imagine is the surgery is more for cosmetic reasons and/or reconstruction. Basically your husband would first go thru the mandibulectomy for the goal of eliminating the cancer. Patients going thru a surgery like what your husband did, followed by 30 rads that were probably done to clean up any random straggling cancer cells will have a very long road for a full recovery. Ive been thru this myself, and know many others who have had this done as well, so I completely understand how complex this kind of surgery can be. After a major invasive surgery like the mandibulectomy, swelling can take a long time to go down. Doctors have all told me it takes a year for everything to "take" and after a year its ok to go in and make minor changes. Ive run into many of the top doctors in the US when doing different OCF events and medical conferences. A few have suggested more surgeries to "fix" my appearance from the mandibulectomy complications I went thru 10 years ago. However this is NOT worth risking my life for and it would be much to much for me to get thru so I refuse any other major surgeries. My regular ENT has told me after what Ive already been thru I run a very high risk of having even more complications than with the original surgery. Im assuming the next phase, a second mandibulectomy is to go back in to clean it up, swap out the titanium for bone and make a few changes to rebuild the area while making it look even better and more functional??? I have had a couple surgeries to adjust what the mandibulectomy did, but definitely NOT anything close to what is being suggested to your husband. Plus, this kind of surgery already comes with a high rate of complications where missing a couple teeny tiny blood vessels could mean it fails or if a couple become untied even worse... bleeding! I have not interacted with anyone (out of at least 30+ that I know) who had a mandibulectomy and their treatment plan included a second mandibulectomy a year + later. This does NOT mean, its never been done!!! Its something I have not seen before but I have seen many mandibulectomies have complications (including mine) and require several "tweaks" for cosmetic purposes a year or more after the original surgery... myself included!
I really tried to avoid speculating but hearing the second mandibulectomy was part of the original game plan just doesnt sound like what anyone else Ive ever talked to about a mandibulectomy has been thru or that it was even suggested. m hoping all my speculating isnt making this any harder!!! Its just not possible to determine the whats behind things doctors/specialists do. This is another reason why its so important to seek out a CCC for at the very least a second opinion. The CCCs use a team based approach so all the specialists are working together with everyone on the same page. They meet and discuss each individual case at whats called their tumor board meeting which patients and caregivers are able to attend and participate in the meeting. Its the perfect time to ask any and all questions so you both fully understand everything. You can still get your husband seen at a CCC, some of them will even do a consult without the patient traveling. Before any other surgeries are done, get all your husbands medical records together and get a second and 3rd opinion. If this was part of the original treatment plan it should be written down somewhere in your husbands records.
Im sorry Im not more helpful. Wishing you and your husband all the very best with the difficult decisions you are facing. Since cancer isnt part of this equation, to me I feel you are being very smart proceeding with caution and talking to other professionals before doing anything. As I always say... surgeons cut, thats their job so they always advise patients to have surgery but that may not always be what works best for every patient. Especially when its so complex like a mandibulectomy.
Best wishes!!!
PS... Vicky mentioned the HBO which in this situation would be something necessary doing 20 before and 10 more immediately after the surgery. This would help with healing as well as post radiated areas do NOT do very well with healing!!!
Main OCF Site, Financial Assistance NCI list of CCCsUS News Best Hospitals List
