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Joined: Jun 2008
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Hello All,

I am so glad to find the listserv. I would love to hear your thoughts about mom�s situation.

In September 2007, my mom was diagnosed with mouth cancer. It was described as tumor on the jaw bone. In October, she had a partial segmentation of her mandible. In January 2008, she had 32 rounds of radiation. Two weeks ago, we found out the cancer had returned (or really never left). It�s in her jaw bone.

At this point, the doctors have presented her with two options:

1) Have an extensive surgery to remove the right half of her jaw bone. They will replace the tissue with healthy tissue from another part of the body. It will be disfiguring. The fact that she has endured radiation in the area may hinder her ability to heal. Her Oncologist is pushing for this option;

2) Go through a course of Erbitax or some form of Chemo. Her Oncologist keeps emphasizing that neither one of these will �cure� the cancer. The goal would be to slow the growth down. However, he is not too keen on putting her through a course of chemo because of her previous reaction to chemo.

In addition, my mom has other major health issues. She has breast cancer which is a completely different kind of cancer. She�s lived with the reoccurrence of the breast cancer for the last four years. My mom has lost the use of her hand due to the surgery related to her breast cancer. To top it all off, she also has epilepsy.

Right now, she is on a heavy regiment medication for all of these conditions and the pain associated with them. To top it off, her mouth is sore, has a fugal infection and white spots on her tongue that looks like blisters.

My feelings about which options she should take shifts from hour to hour. I also wonder what happens if she does nothing.

I would like to hear your thoughts about or experiences with any of these options.

Scared and tired,
Les

PS: Mom is 73 years old.

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Les,
First of all, your mother's age should be of less concern than her present state of health. The recommended surgery may not be as disfiguring as you think and that is relatively unimportant when weighed against the possible effects of chemo given her history. I had most of my left mandible removed and opted not to have reconstruction at that time. I have posed for an advanced portrait painting class with people who are extreemly observant and those who did not know I had the surgery did not realize it.
It seems that your mother is under the care of a competent team of doctors. Are you getting information first hand from them, from her or from another family member? What is her opinion about the options? How does she feel about your input? Did the doctors recommend the reconstructive surgery for functional reasons? It would seem that "doing nothing" is the least option. Have you spoken with a clergy person and/or a social worker?
Please consider the advice that you will receive from others posting here. Our experiences are all different but we are facing the same basic issues.
Malka


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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Others on this site have had a similar surgery to what they propose for your Mom and since the chemo will most likely not get rid of her cancer, I would lean towards the surgery. This cancer is not forgiving and whatever she plans to do, she needs to decide quickly. She could always get another opinion but it doesn't sound like her options would change.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Hi Les,

My dad had this type of surgery 12/27.
He continues to get better, and has had 3 subsequent surgeries to improve function, and appearance. He is 64. He can now eat anything he wants, albeit slower, and smaller bites at one time, but his quality of life is good.
I hope this helps, and wish the best for you and your mom.

Deb


Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"

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Hi Les,
You said your mother has a lot of pain. Is that related to the breast cancer or the oral cancer or something else? She should get proper pain management. What is the prognosis on the breast cancer? Is this under control? If not how long do they give her? Since the chemo would be palliative, I would op for the surgery especially if the pain is from the oral cancer. What option does your Mom want?

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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Hi Everyone,

Thanks for responding to my previous post. I appreciate hearing your thoughts.

At this point, my mom and I are leaning towards the surgery. I started to doubt our thinking because some of my friends think it is crazy to do another surgery for something that is not guaranteed.

To answer your questions:

� I am very involved with my mom�s medical care. Although I live in VA and my parents are in NY, we maintain frequent contact. If I am not able to accompany my mom to doctors� visits, I make a point of chatting with the doctors via phone. She wants me to be involved in what is going on.

� The breast cancer is under control at this time. It�s been under control for the last four years.

�We are working with the doctors on getting a pain regiment that works for her. She is on Oxycodone and Oxycontin for the pain. Currently, the drugs seem to wear off before her next dose is due.

�The oral cancer appears to be the culprit of the pain. While she feels discomfort with the tongue, the jaw seems to cause the most pain.

I asked the surgeon about the possibility of replacing the jaw bone with bone from another part of the body. He feels that type of surgery would be too much for my mom to handle. However, I never thought about asking about prosthetics. Does anyone have experience with them?

Les

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Good luck


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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All the best to your Mom and to you too.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here

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