I finally got brave enough to venture into the world of online patient forums. We found out last week that my husband's tongue cancer has come back and we are still reeling. We have a three-year-old and I'm currently 32 weeks pregnant with our second child. The first diagnosis was close to four years ago, and we went along with the recommendations of our local hospital, which is ranked well but is not a top cancer center. I'm definitely feeling this time that we need to be more proactive about second opinions and treatment, including perhaps traveling to distant hospitals. I have about three weeks left when I can fly with him to help him, but after that I need to stay at home for the birth. From what I can tell, we have family members near two major hospitals/cancer centers who might be able to house and help him, but I don't know how highly those centers are ranked specifically for oral cancers. How do you even find out about subspecialties of cancer centers? The research page here mentioned MD Anderson and Sloan Kettering as being the top two for head and neck cancers, but I am wondering what the rest of the list is. I know that specific recommendations of hospitals and doctors are against the rules of the board, but if you have some information that could help, please pm me. I am so overwhelmed and we don't have much time before the new baby arrives.

I read the forum a little bit, and I know I need to figure out the abbreviations and make a signature, but I thought I could write up a patient history here so you could get to know us better. My husband was 38 when he noticed a nonhealing sore on the side of his tongue (8/12). At that point it wasn’t even visible, but he could feel a difference. He mentioned it to his dentist two months later (10/12) and the dentist told him to keep an eye on it, and if it got worse, let him know. It did not get worse, but he brought it up again at the next dental appointment (5/13). At that point the dentist decided to refer him to an oral surgeon at the local hospital. It took about six weeks to get an appointment with the oral surgeon (7/13). The oral surgeon didn’t think it was cancer but agreed it was unusual. An appointment was made for complete removal a month later (8/13). The tissue was examined -- it was cancer, and the margin hadn’t been cleared, so cancerous tissue was stitched to healthy tissue. (We both wondered if this surgery set the stage for the cancer’s re-emergence.) He was referred to the ENT department at the local hospital for further treatment, and the surgeon said the cancer was barely T1 (as opposed to T0), and that she would excise it (late 8/13). No neck dissection or radiation was offered. It seemed like the surgery went well and was very thorough in terms of mid-operative testing. The cancer was not tested but due to its location it was unlikely to be HPV-related (which means his cancer was more likely to recur or would potentially be more resistant to treatment, as I learned). I was pregnant with our first child then as well but much earlier along, and it seemed like we had had a bad scare but been pretty lucky.

About 7 weeks ago, he first noticed a visible spot on his tongue in the same place and in a couple of weeks he contacted his continuing-care surgeon. They got him in and did a biopsy last week which came back as cancer last Friday. Again, it looks likely to be T1, although the cat scans haven’t happened yet. The doctor thinks that the cat scans are unlikely to pick up lymph node involvement, but there may be microcancer there. This time the spot on his tongue was about 5mm across; it apparently grew much more rapidly. In addition to all of the other emotions, I am mad because I feel like medical professionals didn’t take him seriously soon enough because they considered him low risk and they underestimated this cancer. My husband is young(ish), a non-smoker, very occasional light drinker, eats well, exercises, meditates daily, and has no family history of cancer. This time the surgeon said under new guidelines neck dissection was recommended to increase survival rate and radiation therapy has been approved. We think he will get tongue surgery and neck dissection, but speaking professionally is an important part of his career (which he loves), so the permanent damage caused by radiation is definitely a concern. I understand there is a less damaging form of radiation, but I don’t know where that is offered.

I don’t want to make this post so long that people don’t read it, but thank you in advance for commenting. Right now we think we will have cat scans on Tuesday (not confirmed yet), and as soon as the workweek starts I also want to make some calls to far away hospitals to get the ball rolling on that and get more information. This is all so foreign to me. We have been very lucky to never have had major medical problems before, so I feel out of my depth. But it is so important to me that these babies get to keep their father—I want to be sure we are making the best, most informed choices.