Posted By: Kekelove New, Needing Support - 11-10-2020 09:47 PM
Hello I’m new here . My husband recently was diagnosed with oral squamous and will be going to remove the tumor in Dec. they informed us that half of Chin and his jaw ’s will be gone and will be constructed. I’m so afraid and just looking for any support in here . They haven’t told us what stage he’s in or of any has gotten in to cells .
Posted By: tlc356 Re: New, Needing Support - 11-11-2020 12:51 PM
Based on my experience having had two operations for oral cancer since 2003, I would like to suggest four thoughts for you.

1) Since oral cancer hits less than 1% of the population, get professional care from a center (CCC) that specializes in cancer and has oral cancer specialists on staff.

2) Don’t hesitate to travel extra hours to such a center-your disease can be life threatening. If distance worries you, see 3 below.

3) Follow-on care may be done at a location which the CCC works with and is nearer to you.

4) Don’t wait to get help, and don’t second guess expert opinion, but if concerned do get a second professional opinion.

With the right team, things will look better than you fear now.
Posted By: Nels Re: New, Needing Support - 11-11-2020 10:51 PM
Hi Kekelove

First, I am so sorry to hear all this. It is scary to suddenly hear "you have cancer" and all these wild procedures from the doctors. I was recently diagnosed with squamous cell carcinoma stage IV on my tongue. I had surgery April 1 and radiation treatment from late May thru early July this year. I lived a very active and healthy life my first 52 years and I was never a smoker. It was a major surprise to me and my family.

What I can tell you is that this is a good place to reach out. Although I did not have a section of my jaw removed, I can tell you there is hope. It is a long process no matter where oral cancer strikes. Are you in Southern California? There are many resources available in the area that specialize in oral cancer treatments.

My doctors (Kaiser in Irvine and Anaheim) had experience and gave me confidence. They tell you all the bad things that can happen because they want you to be prepared. I was glad to know what to look for so overall we were prepared and had a plan. Today, I am back to full strength work and exercise. My speech is almost back to normal and food is getting better by the week.

Keep us informed. We are here to help.

Posted By: ChristineB Re: New, Needing Support - 11-14-2020 04:54 PM
Welcome to OCF, Keke! I’m very sorry to hear about what’s going on with your husband. There’s several other members who have been thru the same kind of surgery as your husband faces. In fact, I’ve been thru a similar surgery myself 11 years ago.

I’m sure the consults were NOT easy! Just hearing what options are available and descriptions of the surgery (mandibulectomy) is enough to upset and cause significant worrying in anyone. Definitely uncharted territory for most couples!

The best thing you can do is to locate top physicians who are very experienced with oral cancer (OC) and specifically preforming manbulictomies. I suggest finding this type of highly skilled medical professionals/oncologists at a CCC (Comprehensive Cancer Center). A team based approach along with newest procedures and treatments are very important as is getting only the best of the best specialists available which you will find working at CCCs. Yes, it really is that important!!! Don’t let the choice of location determine your husbands fate. I also suggest reading but only from reliable sources that have correct, up to date medical info. With OCFs badge from Health on the Net, rest assured OCF is one of the very few to meet their stringent criteria to always allow only correct medical info to be on the OCF site.

The info I’m passing along is probably not what you or any patient likes to hear. But, a well informed patient/caregiver helps to make better choices and can understand how important that one decision could be. Unfortunately you and your husband are facing one of the most important choices of your lives and his life could depend on making the right choice. This complex type of cancer surgery might only have one shot to eliminate every single microscopic cell of cancer. It’s likely the team will not be able to have a redo if complications arise. Smaller, local hospitals or cancer treatment facilities probably will NOT be a good fit for your husbands situation. Even if they come highly recommended from other patients.... ask almost anyone here about if they would recommend their treatment specialists and almost every OC patient will say their team was the best and/or I love my team, they saved my life! For example you may run into patients or caregivers whose patients tumors were found nearby near them he throat instead of blood they he chin. For those patients their OC surgeons probably will have much more experience in surgeries involving tumors located in the base of the tongue or tonsil areas. This is also a complex surgery but that doesn’t mean that surgeon has the same experience doing mandibulectomies.

There’s several options for reconstruction down the road and can greatly vary from patient to patient. This is dependent on soooo many variables for which option should work best. All options given and selected could change depending on what the surgeon runs into during the operation. A piece of lower leg bone from your husbands leg could be used, a titanium jaw created by taking your husbands bone measurements, a cadaver bone may sound awful but it actually has better odds of success than other choices. Regardless of what option is chosen, the end result of the usual 10+ hour surgery could be different. It’s a very long road which requires lots of time to eliminate all the cancer and recovery back to as close to his former self as possible. No matter if complications arise from your husbands mandibulectomy he must wait at least one year after the mandibulectomy for any reconstruction work to be done. Yes, it does take that long to be considered recovered from such a long and complex surgery. That’s the part many patients get upset over, especially if they aren’t looking like they did before the surgery. Definitely NOT easy!!!! For example swelling seems to last forever takes months to dissipate! Unfortunately many patients must do further cancer treatments after the surgery so that could also delay his recovery and change when post-mandibulectomy reconstruction is ok to do. Another important thing that helped me was to remember to take it one day at a time plus understanding everybody is different meaning results will vary.

Please let me know if you have any further questions. I’ll do my best to help with further info. Best wishes with everything!!!
Posted By: Mark Re: New, Needing Support - 11-16-2020 11:44 PM
Keke, please take a deep breath, you will get through this. I hear how you are doing but how is your husband?

For sure the road ahead can be bumpy so take one day at a time and if necessary take even smaller bites. Literally one minute at a time is OK.

The surgery you describe is, I'm sure, pretty hard for you to imagine. I encourage you to not dwell on that aspect. Instead think about your valuable role as support for him emotionally. Do you have confidence in the doctors involved? Have you thought about a second opinion?

Reach back to the experience here and ask questions as needed.

Posted By: Lisa D Re: New, Needing Support - 11-22-2020 04:13 AM
Hi Keke, I see you are very scared! These are scary times...not only with a cancer diagnosis but also with Covid on the rise again. Have faith. It's okay to be scared. You are brave to ask for support. There is a wealth of info online these days. Take everything in stride. I did not get my staging until surgery was done and over (about a week after surgery to get the results back) as they had to send the tumor and my lymph nodes to pathology. Be well, and there are lots of us out there to help and support you and your husband! Make sure to take some time for yourself too!
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