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
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.
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
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
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
Charm,
No apologizes please. My sincerest thanks for you comments.
Ken
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
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.
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.
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
My thoughts are to take her to a CCC as these Drs are the best and work in teams to best handle each case . Not 1 Dr but many working as one to make the decisions. They have performed not a few OC cases but hundreds. You sis is lucky to have you. Welcome to our World wide Family.
Welcome, but sorry you had to join us. This is a very unforgiving disease. You can just be there for and listen to her. Allow her to vent and rant and rave. She will need to. Sometimes just being quiet and let her do that will help. I know that as soon as I found out I had it all I wanted was someone to talk to and listen to me, and not try to fix it.
My thoughts as well take her to a Cancer Center, MD Anderson they're up on the latest.
I'm sorry your sister is going through this, come to this forum frequently, listen to what people have to say they are all very knowledgeable.
Take Brian up on the phone call in my opinion he knows more than most Doctor's.
Your family is in my thoughts and prayers.
Connie
EZJim,
Please tell me what CCC means. Thanks friend.
Connie,
I have been told that if you have a lymphoma, leukemia, or certain type of cancer MD Anderson is the place to be but for Oral Cancer I had been advised elsewhere. I am not saying I am correct on this by any means.
I do want to speak with Brian. I tried to PM him with my number and email address. I hope to speak with him soon. I will change plans on the advisement of those on this board. Dr Gahali according to many has a great team of doctors, nurses, rehabilitation people, nutritionist, etc.. I have also been advised that this facility and doctor see OC patients by the masses and from all over the country. JFYI.. Please do not think I am defending this place in way shape or form.. Really, I thought I put in the research time until I found this site with its wealth of info...
I wish I could personally meet and thank each one of you for your caring, others first generosity, toward helping me and my sister.
Thanks so much......
Your new friend
KEN
Ken,
Brian will give you input about MD Anderson, I know it's a Cancer Center. I know what I went through until I reach Moffitt Cancer Center, hell. I can't say enough about the place if I lived closer I would volunteer that's how much I think of it.
I also did a Goggle search on your Dr. I couldn't find anything. I then did a Goggle on my Surgeon at Moffitt and came up with pages about him. Not sure if that means anything, it does mean something to me.
I'm sure Brian will lead you in the right direction. I hope you get to talk to him soon. Keep us posted, we all care.
Take care,
Connie
CCC's
http://www.oralcancerfoundation.org/resources/cancer_centers.htmAlso:
BEST CANCER HOSPITALS
http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/MDA is a great choice. I was treated at Moffitt but MDA was my second choice only because of distance.
I agree with Brian that HPV is likely out but only the test will confirm that.
Connie,
Thanks for your reply. I actually spelled his name incorrectly. He is Dr Ghali, Ghali Elias.
I just got off the phone with Dr. Wilck. WOW, what an incredible human being. Brian just called so I need to get off this computer and get a pen and paper. Thanks for everything..
Ken
Ken,
Yes on Jerry he talked to me when I was going through it.
I looked up the doctor you talked about. Hmmmm...he's an Maxillofacial Surgeon, Dept of Oral Surgery. It didn't say anything about cancer surgeon unless I missed it.
If I were in your sister's shoes I'd go to MD Anderson, just my opinion.
I do want to mention I had the ND you can't see the scar and my neck looks like it did before surgery.
Another thing if you go to MD Anderson take all the scans, biopsy reports, the biopsy disk and all her medical records with you. Moffitt Cancer Center wanted the biopsy disk for sure they wanted to read it. This way she won't have to go through them again. If I needed radiation or chemo Moffitt would work with the Radiation Oncologist where I live. That also might be an option if she does have radiation and chemo with MD Anderson.
Connie
Hi Ken. So glad you have found OCF. This is the place to get all the help you could ever ask for relating to oral cancer. Since you are a dentist, hopefully you will be able to take what you learn here and use it to help not just your sister but also any patients you encounter who have oral cancer.
So far, it sounds like you have been welcomed with open arms. Glad to see you are being steered towards cancer centers and the top places in the country. Your sister is very fortunate to have you in her corner! Keep up the good work
