Introduction to my Mom- Squamos Cell Carcinoma in the Jaw - Stage 4a

Hi everyone,

My mom (65 yrs) is currently a cancer patient. 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 (induction chemo TPF) 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, daily visists for hydration, and neupogen injections. Her jaw bone and jaw tissue are 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. I'm trying to finish school and take care of my mom the best way that I can. Looking to learn more and be able to ask the right questions. 

We are seeing the radiation therapist today and I'm curious about questions that I should be asking him. 

Thank you for listening/reading! 

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    Your poor mom....

    She certainly has been thru the wringer trying to get this resolved.  Being in CA, I'm wondering...have you been to any of the big cancer centers there?  If not, and if it were me, I'd want to get a second opinion from one of them.  Radiation carries with it a lot of side effects, and the big center have the latest in equipment and the know how to run things.....same with surgery.

    p

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    Coordination

    The first thing I would as is are the various doctors going to get together and evaluate her case as an entire problem or is each going to just do their thing.  If the first great if not find as quick as you can a group or at least a set of doctors who will work together.  I am so sorry your mother has all of this going on, I cannot even think about how hard it must be.  There may be hope, but until there is some sort of coordination I don't see how.  That is just my take.  If others think I am wrong please say so, I don't want to give bad information.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    I can't imagine!

    What your Mom has been through thus far shows a woman of strength far beyond the grasp of many. It's beyond what I can even imagine and I'm a week out of a neck dissection and second set of tonsils removed, biopsies etc. 

    Faced with the prospect of a 14 hour surgery with a high morbidity rate just to be able to be alive is certainly overwheming. Quality of life is very important and should be looked at whenever one is faced with a life changing disease such as cancer. Have you sought a 2nd opinion? There are several highly rated cancer centers in California. Your biggest ally right now is knowledge and a team of doctors that can objectively give you the facts so your mother and you can make an informed decision. 

    Best wishes, positive thoughts and prayers.


    "T"

  • patricke
    patricke Member Posts: 570
    DIFFICULT DECISIONS

    I'm sorry to hear about the ordeal that your mom has been going through, and what you are still going through to make a decision about the best course of treatment.  I second the previous suggestions about obtaining a second, and who knows, maybe a third opinion in regard to course of treatment.  Doctors views are based on their education, training and experience, and based on those factors different doctors and teams of doctors may have differing views about treatment and outcomes.  My thoughts, wishes, and prayers go out to your mom for a very positive, victorious outcome from whatever course of treatment is chosen.  Your mom is lucky to have you for her daughter to help her get through this formidable challenge; you are awesome!  Remember to take care of yourself, and take things one day at a time, as well as utilize the support such as friends, or support groups that may be available to/for you.

    PATRICK