Hi everyone,

My mom (65) is currently a cancer patient and I'm her daughter. Her cancer was detected in April of 2012 and she was diagnosed with Stage 4A squamos cell carcinoma in the jaw in September 2012. The tumor mass is primarily located on the bottom of her chin.

The story begins with my mom losing her teeth in the summer of 2011. She visited several dentists who proceeded to tell her that she was suffering from severe gingivitis and inflammation of the gums - prescribed her antibiotics and sent her home. Overt time, more and more teeth began to just fall out. The pain was so severe that she visited the ER on several occasions. During this time, blisters also started to emerge on her chin. On her 3rd ER visit, one doctor decided to do a biopsy since all her other tests came back inconclusive and meanwhile she wasn't responding to the medications they had been giving her. The biopsy confirmed cancer. This was end of April in 2012.

Time passed, got shoveled around between several doctors and eventually secured an appointment with the ENT surgeon (no one scheduled her to see an oncologist before the surgeon - and we didn't know). This was September 2012. By this time the tumor was the size a half sized tennis ball on the bottom of her chin and it bled on a regular basis. The surgeon staged her at stage 4A, recommended surgery but also trying out chemo first. She also can't eat anything but liquids/extremely soft foods.

Since then, she's been through 3 cycles of aggressive chemotherapy and the tumor has receded significantly (externally, it looks like it's gone). It wasn't easy and she had to be hospitalized with every chemo cycle. Her jaw bone has also deteriorated and now there is a small hole in the bottom of her chin.

We're at a point where we have to figure out the next steps in the treatment. We've seen the ENT surgeon, a plastic surgeon, and supposed to talk to the oncologist and a radiologist. The surgeons seem to want surgery but the information they've communicated about the success of the surgery are very grim. In fact, I'm not sure if I understand all of it - let alone my mom.

The surgeon told us that he believed the success rate of the surgery is 20%, 14 hour surgery where they would remove her bottom mandible and then the plastic surgeon would try and reconstruct some of it. If they are fortunate, they can save her bottom lip. The risks are (assuming she makes it past the 14 hour surgery) that she may lose her ability to speak and eat (even liquids) - in that case she would need a feeding tube. Rehabilitation from the surgery would be about a year long. They mentioned that we should take "quality of life" into consideration when considering surgery. On the other hand, if she does radiation. The surgeon said he would suspect that the cancer may return in 6 months to a year. And we would start the treatment process all over again with a decreased chance that it would be as effective. Also, if she decided to do radiation, surgery would not be a good option because of the radiation damage to her facial tissue. The ONE thing working in her favor is that she's healthy in the sense that she doesn't drink or smoke - says the plastic surgeon.

It's just my mom and I living in CA and trying to figure out these decisions. My mom is clearly overwhelmed. And, I'd like to be supportive, but I'm trying to wrap my mind around everything that's happening.

So this is where we are today. Lost. I'm trying to finish school and take care of my mom the best way that I can. Looking to learn more.

Thank you for listening/reading.

Hi there:

Just saw your post and wanted you to know that you will be getting many responses soon from some of the more informative members of this Forum - others who have experienced what your Mom is experiencing. I'll pray for your Mom and a sucessful tratment.

julieann

Hi, nayucla,

I am sorry that you and your Mom are going through this. My husband was Stage 4 also and had his mandible rebuilt and the surgery was successful. Your Mom is healthy and relatively young. You may consider getting a second opinion. Are the doctors you have seen at a Comprehensive Cancer Center? This link will show you NCI recognized centers in the US.

http://oralcancerfoundation.org/resources/index.htm#centers

I wish you and your Mom a successful outcome. This is a tough road but there are many on this forum who have been there and are living meaningful lives. Keep us posted. This is a wonderful place for information and support.

I am so sorry to hear this. I am so sorry I cannot be of help but I will be thinking of your Mum, I know how hard it can be.

Thank you everyone.

@AnitaFrances. Yes, she is being treated primarily at UC Irvine (University of California, Irvine). What was your husband's experience like? I have no idea what to expect. She can only eat soft foods (mostly soup) or speak as well as she used to. Facial disfigurement has already happened. How much worse does it get? What does survival rate of 20% mean? Initially, they didn't even want to give us any estimates, so I don't understand why now.

So many questions...
Thank you for the link as well.

Nay, welcome to OCF! This is a very good place to get correct medical info and support to help both you and your mother.

A mandibulectomy is a major operation. It is very complicated and yes it does have its risks that go along with it. The best thing you can do is make sure your mother is being treated at a top notch cancer center. In this type of situation a second opinion would probably be a very good idea as well.

Here is a list of easier to eat foods. This might be helpful to your mother since her eating is compromised.

List of Easy to Eat Foods


Usually after a mandibulectomy the doctors will want the patient to heal for a full year before they will attempt doing any reconstruction. I did have a plastic surgeon working right along with my ENT during my mandibulectomy surgery. But he would not do any other reconstruction until after I had healed for a year. As part of my check ups, I would also see my plastic surgeon right along with my ENT. It was one long year for recovering from the mandibulectomy. I had complications that not all patients will go thru so I may have had a rougher time than many others have.

I can honestly say my quality of life is not anywhere even close to what it was before i got cancer. I have many limitations but even with daily struggles, I have learned to adapt to my situation. I do live a very full and happy life. I find helping others is a very positive way to spend my time. Even if your mother has some facial disfigurement, she still can live a good life. Being different is not very easy with everyone so hung up on appearances. It takes a strong minded person to be able to overcome their insecurities and continue on with living their life as close to normal as possible when they have become disfigured. It can be done successfully but it takes alot of work to overcome any insecurities a person can have about their appearance. I still go out in public all the time, I have even done public speaking. For many people we are all own worst enemies and think we look much worse than we do. But to someone who really is disfigured, especially when its their face just going out in public can be a giant hurdle to get over. When I was recovering, I kept telling myself "time heals all wounds" and in time I was better.

Anita's husband and I went thru many of the same things around the same time. She is a great caregiver and Ive been lucky enough to meet her in person a few years ago. The info she has given you has been very good.

Wishing you all the best with everything! please dont hesitate to ask questions, we will help you as much as possible.

Best wishes!!!

Hi there and welcome. I can't talk to what your mother is facing because my cancer was different, however Christine is a pro. She's a 3 time survivor and had been through what is facing your mom. Drs. Have to give to a worse case scenario but they don't know for sure that cancer will return, no one does. It's a numbers game. I would suggest doing what you can to stop it n its tracks. If your dr says its a 20% success rate for this surgery I would say get another opinion from someone tops in their field, as you know some surgeons are more successful than others, ideally they will do he surgery then chemo radiation. Best of luck

Nay,

My husband's doctors never talked about percentages, so I can't comment on that. I am glad to hear that your Mom is at a major hospital. But having said that, I might still consider a second opinion by a surgeon who has done hundreds to thousands of this type of surgery. It is not unusual to ask a surgeon how many procedures of this type has he/she done. Your current surgeon should not have any issue with you requesting a second opinion if you decide to pursue it. It is very common and done all the time.

In his initial surgery, my husband had three teeth and a large chunk of his jaw removed. The remaining jaw deteriorated from radiation induced necrosis 21 months later. My husband had a mandibulectomy with a fibular graft. Three pieces of bone are notched out of the fibula (non weight bearing bone in your lower leg) along with blood vessels and some soft tissue.

A Plastic Surgeon and an Oralmaxillofacial Surgeon work as a team rebuilding the jaw. A titanium plate is attached to the mandible to stabilize the jaw while it heals. Before the surgery, my husband's jaw was disfigured and his bite was completely off center making it impossible for him to chew food. At that time, he was also on a PEG tube for nutrition. He had that placed before radiation. And while he wanted to get rid of the PEG, we were so glad he still had it as it helped his recovery from the mandibulectomy.

He seemed to have a more difficult time with the pain in his leg than with the jaw. He had to use a walker for a while to get around. The wound took weeks to heal. I hope I am not scaring you. It is a big procedure but you must know that today my husband is on the treadmill a few times a week, and plays golf when the weather is warm.

He had several more plastic surgeries to fix a defect on his face from repeated infections. All of that has healed nicely and he eats almost as he did before cancer. The only things he does not handle well are meats like steak and other foods that require a lot of chewing, He just gets tired of chewing and he lost his taste for foods that require that much work.

A lot of my cooking today is focused on providing tasty meals that are more soft. Every morning he has crispy bacon, and english muffin with lots of spread, a banana, and skim milk.

For a long time, my husband did not have much of an appetite and the PEG helped him get what he needed to heal and survive. He still has a large skin graft that is visible to all but he gets out there and is living life.

My best to you-
Anita

This is a very difficult situation, and I think that the other posters have already done a great job of answering your questions.

But the one thing that stands out to me, is that there is no comment that you mother was seen yet by anyone from radiation. This makes me wonder if she got this far seeing doctors at UCI with no tumor board being convened in the hospital to discuss her case and make a group recommendation as to how she should be treated and what is the best treatment course for her.

Clearly you are talking to several different surgeons, and given that, I can see why you are getting surgical solutions to the problem. When most of us went thorough major treatment, we had our case reviewed by doctors of all cancer disciplines before anyone told us what to actually do. When as a group, doctors from different training come up with a treatment plan, it is usually some combination of al their therapeutic skills, not a singular approach ( though your mothers case may be unique). I would just confirm with one of the doctors that her case has been reviewed by a tumor board, and I would make sure that the radiation oncologists opinions are being considered in any final plan. I don't think there is a way for a surgeon ( or even a radiation oncologist) to know for sure that if you have radiation that it will come back, and I find that comment odd for him to make, unless he has already reviewed the case with the radiation oncologist who does not feel that radiation would be curative.

Ditto what brian said.

Brian, at the initial meeting in Nov (2011), the ENT surgeon did mention that they held a meeting to discuss her case. My understanding is that her scenario is unique and they were surprised at rapid rate at which the tumor grew. The oncologist was pleased at how the cancer responded to the chemo but the surgeon said that it is common for a fast growing tumor to also quickly respond to chemo. I will talk to my mom about conferring with the radiologist. This was our plan. Her oncologist is not at UC Irvine and I'm not sure if her radiologist will be.

Hi everyone,

Thank you so much for your feedback. I will ask about the number of surgeries of this caliber that these surgeon have done. I just didn't want to offend them (I think it's a cultural thing because I know here (in the states), it is very common to get a second opinion). Both the ENT and the plastic surgeon are highly regarded in dealing with cancer and cancer reconstruction.

I feel like all the information we get is so disjointed. Did anyone else experience the same thing? Sometimes it feels like not all parties are talking to each other on a regular basis.

My other question is, is there a place where she meet (in person) with other cancer survivors to talk through some of her anxieties? Would the oncologist know?

It is best for you to be a place where all the drs are communicating to work together on your mother's behalf that is how she will get the best treatment. The radiologist, surgeon and medical oncologist should all have their say and put together a plan of action for her. Hr tumor does sound highly aggressive (yur dr is right highly aggressive tumors tend to respond quickly. But they also move quickly so the drs. Should move onto their follow up treatment as soon as they decide what to do. Best of luck. Ps standard radiation cuts the recurrence rate in half normally. Best of luck

Thank you Cheryld. Btw, I don't understand what you meant by "standard radiation cuts the recurrence rate in half normally"

We're seeing the radiation therapist tomorrow. What kinds of questions should I be asking of him? Dr. Woodhouse in Fountain Valley, CA. Does anyone have experience working with him?

Have you had a chance to read the section of this site on radiation treatment? You may particularly want to know about what kind of side effects to expect, the percentage of the patients who suffer from these side effects, how they may impact your mother's life post-treatment, what kind(s) of medication she may need to help reduce pain from the side effects. The hospital my husband is being treated at has a range of information pamphlets, from how to deal with constipation (from taking painkillers), doing saline soaks for radiation burns, to feeding tube management etc. Get hold of as many of these as you can if they have it at the doctor's office and read through them. It is all invaluable information. Good luck to you and your Mom.

Hopefully they have all available records from the other doctor's. Just in case, you may want to bring any you have or call the other doctor offices, and ask they send them electronicaly to the RO. I always ask what is their experience in treating H&N cancer, this particualr type, but I usually know before I go anyway having sought out the ones that specialize in head and neck cancer. Below is another source of info for radiation treatment from ACS, which you can compile a list of qustions to ask for any concerns. Some cancer centers have support groups for Head and Neck Cancer, like SPOHNC, that are throughout the country, but you don't have to be treated there. Good luck.

http://www.cancer.org/treatment/tre...diation/radiationtherapyprinciples/index

Thank you Paul!

Hi...
Where oral cancer is concerned cause, and location play a role in treatment.

Often HPV tumors are treated with radiation and chemotherapy alone. If it involves the tonsil, then surgeons may remove it prior to treatment. HPV tumors respond very well to radiation and chemo alone.

NON HPV oral cancer is a dog of a different color. Gum, cheek, tongue, palate etc (it sounds to me like your mother's started out in her gum area and moved into her jaw)... are generally treated with surgery first. And sometimes a dr. will leave it at that. However, depending on size and involvement of the area and other factors they will suggest chemoradiation. (more and more this is becoming standard as oral cancer can be aggressive and spread quickly) So I was told by my rads dr. and surgical oncologist (ENT) post surgery and post biopsy that they wanted to give me radiation and chemo as it cuts the odds of recurrence in half as opposed just surgery.

There are no guarantees with anything. But where your mother is concerned if she is healthy enough (radiation is NO PICNIC - its far worse that just chemo and just surgery) the initial treatment of chemotherapy - to shrink the tumor, would likely be followed up with surgery, to remove the remaining cancer and possibly rebuild the affected area - then based on her staging and involvement, radiation should be offered after she has healed from surgery - this is normally 6 weeks but depends on how quickly she heals and what they have done for her surgically. Usually 6 weeks is the average. Her healing and immune system may be compromised due to her chemo, so it's important that she get good nutrition and regain her strength during this healing period.

Do look into rads. It's hard. Even for people who are have an "easy time of it" Pain management is very important, and being proactive. knowing what to expect, and educating yourself should help you both get through it if it is suggested.

take care

Your story sounds all too familiar. My mom went through the same thing in August 2008 when she went from DENTIST to DENTIST until finally she was referred over to an oral surgeon who determined she had SCC.

A few weeks later she was in the Operating room under-going jaw reconstuction. The mandible from her leg was used to rebuild the jaw. I believe it was about a 10 hour surgery which included six days in the hospital. After a few weeks she began radiation + chemo-therapy. I remember she lost 90% of her hair and had a great deal of difficulty during the chemo.

Surprised your mom was not operated on immediately..

Let me know if you have any questions.

Just to make something clear. Outcomes from HPV+ and non HPV oral and oropharyngeal cancers are different because the HPV+ disease appears to respond better to radiation. There is a distinct survival advantage to patients that come from HPV etiologies.

Treatments for oral cancers vary widely, NOT BASED ON HPV etiology, but based on anatomical locations, and the philosophy of the treating institutions and doctors. Given this significant variable, the NCCN set some guidelines for treatment that hospitals all around the country can review (this does not mean they will follow them). These guidelines are established by the really big NCI designated treatment institutions as a group, and them published so that smaller institutions can see what is being done successfully at the big institutions that we sometimes consider the best of the best.

Today the guidelines show that for HPV + or negative disease, patients are treated in the same manner. There has been no clinical trial, and there will not be for years, that shows that we can reduce radiation for instance, to reduce treatment related morbidity and long term QOL issues (because of the significant, documented survival advantage), even though some doctors are speculating that this could be done. But no one is changing treatment protocols yet based on etiology. The next ten years will likely see some changes, but not until clinical trials definitively prove that a reduction in radiation (the most damaging of the treatments in the short and long term for patients) will still have the same cure rate as the levels of radiation being used today.

So there are guidelines that we know have consistent end points that are positive. There are institutions that do their own thing with outcomes that are not published. We have some treating professionals that come from different training and therefore hold perspectives that have distinct bias to particular modalities of treatment, and regardless of the NCCN guidelines - follow their own experiences and preferences.

These are the reasons that we like patients to get more than one opinion, and hopefully to have one of their treatment plans developed at a larger teaching institution that is a NCI member. When it comes to measurable peer reviewed outcomes statistically, the NCCN guidelines are the current standard of care in the USA.

There are lots of ways to skin a cat. However no two cats are exactly alike. But there is a way to do it that for the majority of cats ends up with the best results.

Update: She had another scan completed on Friday. We are taking the CD of the scans to the radiation oncologist on Wednesday and she also sees her regular oncologist on Thursday. Then we were advised to make a new appointment with her surgeon.

Her ENT surgeon at UC Irvine is the chair of the department. I'm not entirely sure who else we could get a second opinion from. Unless we seek out the next largest and closest research institution - UCLA. Thoughts?