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#125263 11-26-2010 05:35 AM
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Hello all my name is Dr. Ken Morgan.
I am here because about a month ago I found cancer on the lateral border of my siter's tongue. I live in Louisiana and she lives in Mississippi. Her Dentist failed to check and then make the correct diagnosis. She is the most beautiful 39 yo mother of a two year old boy. The cancer has spread to a single cervial lymph node in the neck. I guess I am here becasue I would like some TLC advise. How can I help her emotionally. I understand the cancer but as you know and hopefully can help, I need to understand the person with the cancer. Any and all of your considerations will be greatly appreciated.
Thank you
Dr. Ken

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Was/is she a tobacco user?

Has her cancer cells been tested for HPV?

Where is she being treated?

What have they recommended?

IMO these need to be answered before one can even begin to understand what may be going on inside her emotionally. Obviously no one wants to be told they have cancer and I assume she was Staged a III but there are potentially many treatments options which could determine how she copes.

Also try and get her to join this site as she could gain invaluable information that she will never get outside this site and she may well get misinformed by even her treating doctors and nurses.


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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Hey Doc K

My recommendation is that you browse thru the "Don't you just hate it" thread on the Coping/anger forum to get a quick overview of many of the things that irk cancer patients. Many of them won't apply to you, but sometimes well meaning family members fumbling attempts at reassurance hurt the most - for starters don't tell her "this will all be for the best" or minimize this tragedy (at her age with a 2 yr old son, this is dramatic and not a comedy).
In a bit of serendipity, I just ran across a book: Help Me Live (20 things people with cancer want you to know) that has an excellent appendices that read as though cribbed from this site.
[please use the Amazon link on the OCF forum if you buy it}
Finally, be sure to keep in touch and volunteer to do something specific. It's really not very helpful to offer a generic "If there's anything I can do.." as that places the burden on your sister. It's difficult being in different states so I agree with DavidCPA on getting your sister to join up here at OCF so she will have a virtual support group.
Charm

Last edited by Charm2017; 11-26-2010 06:47 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
davidcpa #125271 11-26-2010 09:10 AM
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David
No my sister is not a tobacco user. She is the picture of health. Excercise, diet, you name it she is squeeky clean.
Yes, she has been encouraged to join this site. I believe she will very soon.
The testing for HPV is underway and she should know something soon. As for treatment options we will know soon.

Charm
Thank you for the book recommendation and for pointing out the forums. I will take these things under advisement. It is not in or families nature to offer passing help. We will be very proactive in helping and nuturing Kim
Thank you both for you replies. I hope to post more in the near future.
KM

Last edited by kenmorgandds; 11-26-2010 09:12 AM.
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KM

I did not mean to imply in any way that you would not be 100% supportive of your sister. I was just speaking from my experience and that of my caregiver wife, that specific offers such as "we are coming over to rake the leaves " or sending a box of DVDs to watch could be gratefully accepted with no effort on our part. We were both just too worried and too tired to be able to articulate exactly what would have been helpful. Sorry if it read otherwise.
You sound like a wonderful brother. Certainly taking the initiative to join OCF to be able to help and support Kim is proof positive that you are already proactive. Finally, my wife liked Gail Sheehy's newest book on Caregivers. Here's a link to her website so you can see if it might also be of interest to you. We liked the Labyrinth metaphor also in the video
Caregiver Advocate - Gail Sheehy
Charm

Last edited by Charm2017; 11-26-2010 11:48 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #125275 11-26-2010 12:27 PM
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Charm,
No apologizes please. My sincerest thanks for you comments.
Ken

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Hi Ken, welcome to OCF. So sorry to hear that your sister is having to deal with this awful cancer but glad you found this forum, it helped me to help my aunt. Just keep reading and the knowledge you gain will guide you.

Your new friend in NC

Dodie


Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
penners #125301 11-26-2010 07:19 PM
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Ken,

It's very lucky for Kim that she has a brother that is not only a dentist, but one that canrecognize tongue cancer. Sorry to read that another one of our colleagues missed the diagnosis.

You didn't mention where she is being treated and I hope that it is at a Comprhensive Cancer Center. Your emotional support as well as your helping her make decisions about any treatment options, will certainly be a big help for her.

If you would like to speak directly to me for any reason, send me your phone number in an email, as well as a good time to call.


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
wilckdds #125303 11-26-2010 09:39 PM
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This disease is very unforgiving of poor treatment choices and delay. I think that everyone's concerns so far are built around the idea that you need to make good informed choices now, choose the best treatment team and facility possible (hopefully one not dictated by geography), and that as individuals who have seen the plus and minuses of this one time opportunity to get it right - assist you in that process. I know that you are already moving forward somewhere, and I would be interested to know who is offering you their opinions on your menu of options.

I will toss my hat into the ring as someone who is very connected in this realm and can make introductions, can be available to you by phone or email, behave as a sounding board to the questions and options that you are going to wish to sort through, and where qualified, help as needed. Tuesday through Thursday next week, I am only available by cell phone as I am traveling to a cancer conference and lecturing, but the staff at OCF will provide you with a cell number to reach me at.

If this is an anterior of the mouth lateral tongue lesion, it is unlikely an HPV16 etiology, and I would expect that a proper PCR test of the biopsy sample will bear that out. But there are no absolutes in cancers as you are likely aware. While things are rapidly changing, the treatment protocols for HPV+ and negative oral cancers are still the same, though they are distinctly different diseases and respond differently to the current NCCN guidelines for treatment. This will all likely change soon.

I think that everyone here will push you towards a multidisciplinary treatment modality right from the start, and a treatment decision process using a differential discussed by a proper tumor board of doctors from different disciplines. Monotherapies in OC are only appropriate in the very earliest carcinoma in situ's, and even then, not always the best choice.

Obviously we all wish her the best in this process, and a rapid return to a cancer free state and normal life.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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WoW.. I am completely humbled by everyones response. From the deepest part of my being thank you.
Here is a brief history and where we are as far as treatment considerations.
An Oral Surgeon sent the biopsy to LSU, where I recieved my training, two pathologists reviewed the slides and agree it is well differeintiated SCC on the lateral border. A third pathologist has confirmed the diagnosis and for whatever reason it is now being sent to MD anderson. Monday my sister saw a local ENT, mississippi, he ordered the tests. SHe had her CT, blood work, PET all over a two day period. This Wed afternoon via a phone call they believe it has spread to a single node. We found out from an appt yesterday that they beileve it is in a submandibular node..
Now that we have an idea of the location she will be going to see Dr. Gahali at a cancer hospital in Sherevport, La. I live in Lafayette, La, MD Anderson is actually closer in proximity than Sherevport but from research I have gathered and through many discussions with colleges we have decided on Shereveport mainly because there is a surgeon that is suppose to be one of the "most talented, gifted surgeons in the country" who lives and breathes oral cancer. He has been explained as the most talented man in the South if not the entire country. I have spoken to many people in regards to this and would like to assure you that I am not using the good ole' boy approach. His Name is Dr. Gahali.

Now havig said the aforementioned I will be happy accept any and all recommendations. I understand that people here have a better understanding of this cancer than I do. I again thank everyone for the considerations.
Ken

Last edited by kenmorgandds; 11-27-2010 05:46 AM. Reason: bad spelling LOL
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