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.
Wendy,
Welcome to OCF - it is the best source for information on oral cancer.
My story is similar to your husbands - T1 at diagnosis in 2005 and had a recurrence in 2010 in the same location. (More details in my signature).
Where you are treated is very important - I found that out the hard way. I was first treated at a local hospital, went to a few different hospitals for a second opinion (long story), and ended up at Johns Hopkins in Baltimore when I had the recurrence in 2010. I truly believe if I had started at Hopkins, I would not have had the problems I faced along the way. Hopkins is one of the best hospitals for head and neck cancer in the USA, along with MD Anderson. I had 2 surgeries before I went to Hopkins, and one thing that the local hospital did not do was to conduct a biopsy during the surgery (referred to as frozen sections) so to help ensure that all cancer is removed the first time. I found out months later that there was cancer in the margins from my first surgery.
You can read more about my oral cancer recurrence adventures by clicking on my username and looking for posts I created in 2010. I had 4 surgeries on my tongue in the same area. My speech is pretty clear but I find when I talk a lot not so much. This week it will be 12 years since I was first diagnosed. It's been a rocky road, but I'm still here and enjoying life.
If I can answer any other questions just ask!
We have had the reality check that our insurance company has made the process of obtaining treatment outside the network very, very difficult to impossible. Hopefully you will be able to navigate the process without any issues. We are still working on it. I wish you the best but I agree, getting quality treatment, especially at this point is important but we all have to work within the limits of our lives. You truly have a lot on your plate and I send you the best and most hopeful thoughts possible.
Welcome to OCF! We can help you and your husband with info and support.
Im sending you a private message with info on how to add a signature and tips on posting. Click on the tiny flashing envelope next to the My Stuff tab.
This link may help with rankings in which are the countrys top centers.
List of CCCs
Susan, my husband and I thank you so much for your kind reply and your suggestions. We will definitely be looking at your old posts tonight and tomorrow since your story sounds so similar.
Also, an etiquette mistake--I had meant to post this in the introductions board but apparently clicked on the wrong tab in my browser when I was copying in my post text. If an administrator thinks it should be moved, please do so. Sorry!
Wendy,
If you go for a second opinion, you will need copies of all medical tests and doctor notes. They will also want the actual biopsy samples sent to them. You can start collecting the reports now. Start making a list of questions. Many of the larger hospitals such as Hopkins are used to having people travel for treatment and they can help with travel arrangements.
If they recomend radiation or chemo, they may be able to coordinate with a local hospital for treatment. There is no place like home when going through this treatment, but it is more important to get treatment at the best hospital.
Thank you, Sooner and Christine. I am sorry to hear about your insurance difficulties, Sooner. We are fortunate in that my husband works for a large company with many offices around the country, so the places that I've checked appear to be covered. But in general insurance stinks in this country. I know my parents' insurance coverage is pretty regional, which means they couldn't move away if they wanted to (at one point they were thinking about moving out here to be near their grandchildren).
Wendy,
I'm sorry for your troubles. You received sound advise, and can add that the U.S. News Report has an annual listing of top rated hospitals, including specialities such as Cancer, and Ear, Nose and Throat, if you want to look there too, which shows John Hopkins. MD Anderson and others, and those listed by the NCCN and NCI. As advised, many will need your records. I get copies of everything anyway, for future reference, including a cd disc of my scans, surgical, and pathology reports.
As far as radiation with less damaging effects, you may be speaking of Proton Radiation, where there are about 25 locations in the U.S., but they're usually not for a broader radiation field, if that's needed, as it would take some time to set up and deliver. Sometimes it's used in conjunction with another type of radiation also. There is a new type of Proton delivery called Intensity Modulated Proton Therapy, IMPT, but there may be only 6 locations in the U.S. that has this, including MD Anderson. This can do a number of areas like IMRT radiation does.
There are other types of precise radiation such as Cyberknife, a type of Stereostatic Radiosurgery, Brachytherapy, a type of internal radiation, but again the radiation field is not as broad, but may be used with another type of radiation such as IMRT, as a boost dose.
Another new type of treatment with a photosensitizer, is Photodynamic Therapy, PDT, where the tumor is only a specified depth. This type of treatment allegedly does not interfere with future radiation treatments, but all these, and other type of treatments are at top rated, experienced, and high patient volume cancer centers in that particular field.
For all my cancers, I had a whole body PET/CT scans too either alone or in conjunction with another type scan. A PET/CT can detect cancers as small as 5mm while a CT or MRI is around 1cm. I had one that was 3mm that was detected by PET/CT
Wendy,
You've received a lot of great information regarding second opinions and treatment options from the group. Please follow through with second opinions and be as aggressive as possible with the treatments.
My advice would be more towards how you being a mother and expecting again and your husband. Set up a support network using family and friends for support. I cannot imagine how stressed you are at this point. Just thinking about your situation of giving birth while your husband is dealing with the effects of his treatments / surgeries and still trying to be a mom to a three year old overwhelms me.
Get things in order as soon as possible. Insurance / transportation / etc.
The timing is terrible, the surgeries and treatments are tough, sometimes the long term damage is unavoidable, but the battle can be won.
Good Luck
If you havent already done so call (available 24/7/365) the American Cancer Society (ACS) and ask about their volunteer driving program. Its survivors and caregivers who give rides to patients while they need it to go back and forth to their treatments, appointments etc. This is a nationwide program so no matter where your husband gets treated he could potentially have some help with driving. Even if its only once a week this gives you significant breathing room to tend to your own things and not to worry about how he is making out. I drive once in a while for this program. Its nice for the patient to go out on their own and they feel a connection to the driver being thru cancer successfully either themselves or their spouse. The paperwork takes a while to get set up as it must be filled out by his physician (any of them is ok to fill it out, doesnt matter about location yet). The ACS also has a program to help pay for prescriptions or transportation up to $300. It can be a voucher at the pharmacy to pick up co-pays or part at the pharmacy and the rest for transportation costs.
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.
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!
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