Dealing with Melanoma and My 20yr.old Daughter

Dr. Pippen at Baylor Dallas is an awesome Oncologists. Any of the doctors in his group are rated among the best.

You can call Baylor and ask for a referral for the Texas Oncology group and a doctor that is familiar with treating melanoma.

Good luck!

Dearest K. and Daughter, at 24 years my daughter was diagnosed with breast cancer. She is now a five year cancer survivor. Hers is a very long story that I will gladly share details if you are interested. I will provide my email address in a private message.

Our family went through 3 stages - Non Acceptance, Denial, and Reality. Non Acceptance is different than Denial. Non Acceptance is, 'No, they made a mistake.' 'You have been perfectly healthy all your life, they made a mistake.' 'You have nothing to worry about.' and, we didn't worry. Those statements were made with assurance and confidence that they were correct statements.

Then, even though we knew for sure she had cancer, we just denied it. The same statements were made but with a different tone - 'No, this can't be happening.' 'You are so young.' 'I am sure they must have made a mistake.' Our thoughts and fears ran rampid. 'Lets see another doctor.' Unfortunately, it doesn't take long to go from denial to reality. But, that's a good thing because then you take action, you get involved.

Once reality sets in, you will become a fighter. Thank God my daughter got there before I did. She thrust herself into learning everything she could about her cancer. She read book after book after book. She could hold an intelligent conversation with her doctor and she asked the right questions; and, if she disagreed or wanted to go another route, she knew what her options were.

With that being said, we ran into obstacles that caused confusion and mistrust; and, confusion caused fear. My daughter armed herself with knowledge, I armed myself with God and put Him in complete control over her situation. In addition to these - your daughter and you MUST take control of her medical treatment. Ask questions, change doctors if necessary. Be In Control!

I say this because if we had stayed with my daughter's first doctor, she probably would not be here today. After her first biopsy, the doctor told her she had breast cancer....but, he came to the waiting room and told my mother and I she did NOT have breast cancer. We WANTED to believe she did NOT have breast cancer. Boy, we loved this doctor! Imagine our surprise when he then scheduled my daughter for chemotherapy and radiation! We were confused. When my daughter asked to see her medical records from this doctor, he refused. When she changed doctors, he refused to send her files to the new doctor. However, before she could get set up with another doctor in Denton, her military husband returned from Iraq and they were moved to Lackland AFB in San Antonio.

Due to complications from a test, and not yet familiar with the medical facilities on the AFB, my daughter went to a civilian doctor. This doctor took immediate action and after all the months that had passed, we knew for the first time, my daughter definitely had breast cancer.

Both my mother-in-law and sister-in-law have had breast cancer and one surgery and they are back to normal - no complications. My daughter has not been as fortunate; but, she has been faithful, knowledgeable, and involved in her treatment.

My daughter has had a hysterectomy, a double mastectomy, and at one point the cancer had spread to her spine, but, it reacted well to radiation. The treatments have caused her to gain a lot of weight. In addition, her body swells to the point of looking nine months pregnant when she is tired or overworked. Her hair fell out starting from the bottom to the top and has come back wavy and kinky. She suffers from two diseases that the doctors say is impossible for her to have both; but, she does. She has Von Willow Brands disease, which causes her to bleed internally for no reason at all and she also suffers from blood clots. The doctors tell us she can't be a bleeder and suffer from blood clots! But, she does; and, they are the ones that diagnosed her!!! She is tired most of the time, even now, five years later. She has been in and out of the hospital from complications due to her body's reaction to reconstructive surgery and illnesses.

However, today, we know our prayers have been answered. My daughter has been in remission for several months. And, as her mom, I must say my daughter is a stronger and better person today than she was 5 years ago. I am in awe of her! My daughter counts her blessings and gives praise to God above for His healing. She shares her story whenever she is asked. She has shared her story on television in San Antonio on a local station. She has been honored as a breast cancer survivor at a fund raiser ceremony in San Antonio. She has trained for and ran in the Susan G. Komen Race for the Cure in San Antonio.

At first, she was the youngest cancer patient at Wilford Hall (hospital) on Lackland AFB and the hospital used her to counsel a 19 year old girl diagnosed with cancer. She tells a story of hope and survival and family and friends and what you have to do to get through this time. She tells how she kept her hands busy to keep her mind busy on things other than her cancer.

Laughter is a must for everyone! We are a family that can laugh at ourselves and we kept that up during this time. My daughter made it easy by not complaining and showing her fears - but, moms know. But, it did make it easier to laugh. The first time her hair fell out we were at the hospital for my mother-in-law. My daughter and her husband were visiting and he offered to take her out to dinner. My daughter went to the bathroom to brush her hair and all of a sudden it was coming out in chunks. She screamed and we all went running to find hair all over the bathroom floor. The under part of her hairline was scattered everywhere. We scooped it up and put it in the trash can and then laughed to think what the cleaning woman would think when she came into the room of a white haired older woman and find a trash can full of long brown hair! Early on, we had all agreed to shave our head if her hair fell out. But, because of the way it fell out, she was able to wear hair pieces and extensions and the rest of us kept our hair. (Her dad did shave his head but it only made him look like Humpty Dumpty!)

Then, there was the Thanksgiving dinner party, just weeks after the last inflation of the expanders in her chest prior to having implants, where one side deflated! Here she was, dressed in a sexy top, showing off her new boobs and one went flat! Even though we all knew the process and complications it took just to get to that point, she still laughed hysterically!

Also, in September, M.D. Anderson Hospital in Houston, Texas holds a three day information seminar related to cancer patients. There are breakout sessions you can pick and choose which ones to attend. My daughter and I split up so we could see as many as we could and I shared my notes with her. Everyone thought "I" was the cancer patient because I cried so often. The support was phenomenal! We made lots of friends and received a lot of information. Due to finances, we can not attend this year; but, the hotel that sponsors the event gives a great discount and the room is wonderful! My daughter was so tired after our journey there that she went right to bed as soon as we arrived. She pulled her head off the pillow and said, "Wow, Mom, this is great!" "I may just spend the whole weekend here!" It was our first introduction to hotel quality 600 thread count sheets!

So, K. and her Darling Daughter - have faith that God is in control of your life and He will be your strength and see you through times you just can't imagine. Learn all you can. Participate and be in control. Let others help you - they want to, and, it really will help. If you don’t feel comfortable with a diagnosis or a procedure, ask for a second opinion. Don’t give up or let someone else make your decisions because, when all of the procedures have been done, and, you are in remission, “cancer” is still in your life and your will wonder “What Now?” So much of your life, your thoughts, your time will have been spent on cancer related issues, you won’t know how to act when there is no more cancer. This is a serious issue and it is covered in the seminar. Cancer or the threat of cancer will always be in your life. BUT, remember, Sweet Darling Daughter, from the first day you are diagnosed to every day of your life….You Are a Survivor! From the glory and mercy of God, my daughter is a five year survivor!

My prayers are with you and know God will heal you even before the biopsy!!!! God Bless You!

I am 36 and was diagnosed with melanoma last October. The main thing is to find out how deep the initial spot is. Mine was .85 mm and staged as Clarks Level II and so all I had to have done was what they called a "wide excision". So after the initial malignant diagnosis, they scheduled the other surgery for the following week. Mine was on the back of my calf, so now I have a pretty large scar from the surgery, but I am alive, so I'm okay with having the scar. When they do the wide excision they will send that off for another biopsy to make sure that they got down to where the clean cells are and to make sure that they got it all.
I also went to see an oncologist and still see him about every 3-4 months just for bloodwork checkups and we also do chest X-rays every 6 months to make sure it hasn't spread.
If you're in the DFW area I can recommend the oncologist that I saw b/c I really, really like him. Although I think you said your daughter was going to A & M....
Anyway, if you have any other questions, please feel free to respond. The one good thing about melanoma is that if its caught early enough, its very curable.
I wish you all the best of luck.
~B.

You must be terribly worried-I would suggest looking for an oncologist at UT Southwestern as teaching hospitals always have the most up to date information-you should be able to find one who knows melanoma by looking on the internet. Make sure that the slides from her mole and surrounding area are seen by a dermatopathologist even if you have to pay more for that ( a lot of times insurance pays for a lab that may not be as capable with dermatology issues-there is a good dermatopathology lab associated with the University of Cincinnati that the slides can be sent to for review) I don't know anyone in this area (I am from the Chicago area and worked for a derm there) but you will find someone good in this area, I am sure.
As for going back to school, if she is up for it and the docs give the ok, it is probably best for her to be going ahead with her plans so that she feels happy and normal while going through whatever she needs to go through. A & M will be helpful if she needs time to come home for doctor visits and such.
The best to all of you while you go through this struggle.

Hi K.,

I worked for the M.D Anderson cancer network for 5 years. In that time I worked with many oncologists and radiation oncologists. If I got cancer, or if one of my children were to get cancer these are the doctors I would consult for treatment.

My first pick for oncology (chemo) would be Dr. Debra Prow. She really cares for her patients and she is a perfectionist. She is a very brilliant physician. She is extremely thorough and she listens to her patients. My second choice would be Dr. Mary Milam. As far as medicine goes, she is a genius. She really knows her stuff; however her bedside manner leaves a lot to be desired in my humble opinion. My husband doesn't care about bedside manner--he just wants to know he's in good hands. Me on the other hand, I need a physician that has a friendly beside manner. Dr. Ray Page is also phenomenal! I don't know what area you live in but I think Dr. Page moved his practice to the Cleburne area.

For Radiation Oncology I would recommend Dr. Raphael Chan hands down. Second choice would be Dr. K. Neilson.

You would be in excellent hands if you chose any of these doctors or thier associates.

Finding out that your loved one has cancer is a very scary thing. My heart goes out to you. Your daughter will be in my prayers.

~~H.

Hi K. -
I also had a Melanoma. It was on my breast and stage 3. My dermatologist sent me to a plastic surgeon because he also didn't believe in treating me further. Then the plastic surgeon sent me to a surgical oncologist who removed the area. His name was Todd McCarty at Baylor, but I don't think he is practicing any monger (but I could be wrong). I also had lymph node mapping and bone scans, and I was ALL CLEAR. No radiation, no chemo.

I did see an oncologist in Lewisville, Dr. Dennis Costa - and quite frankly that was the scariest part for me. I was fine, felt fine, and would have to go into the treatment center with people who where very sick, needless to say, I felt very blessed.

I was checked every 3 months for the first year, including a chest x-ray, then the next year every 6 months, and now annually. I have not had any more melanomas.

I'm certainly not trying to make light of it, because it was terribly scary hearing I had cancer, but being caught early, I had a 99% cure rate, although I am higher at risk of having more.

I will certainly keep your daughter in my prayers!

L.

I had a mole removed 7 years ago, when I was 24, that came back as melanoma. The initial shock of hearing "you have skin cancer" was the scariest part. I still have a hard time not "laying out in the sun", but I know it is for my own good. I used to be really good about routine checks with my dermatologist and have not been back in over 3 years- this email is just another reminder that I should probably be seen. I have several odd moles showing up once again. I will keep your daughter in my prayers. I had the mole along with its margins removed by a surgeon in Plano (Dr. Freidman- whom I HIGHLY DO NOT recommend) and did not have to see an oncologist since the margins came back clear after the removal.

K.,
I am a RN and aggie mom. you can call me and I will ask the nurses I work with and our nurse manager for names if you would like.

If I can help in any way pick up and bring anything back from TAMU , I will be going back there Aug 18 19 ??to take my son.

T.
____@____.com

I am so sorry to hear about your situation. I only have one suggestion and that is that your daughter may find that returning to school is good and keeps her mind off of the diagnosis. She may need that sense of normalcy??? It wouldn't hurt to give it a try. She could always drop her classes if it is too much. hd

I will keep your family and daughter in my prayers. I would try to find the best doctor you can and also get more than one opinion, just to be safe. My sister works at Baylor Garland and I will ask her about Oncologists in the Dallas area. In Christ, A.-Argyle, TX

Hi K.,
I was diagnosed with melanoma Stage 0 in July 2005. After the dermatologist removed the mole, I went to an oncologist in Irving.

Dr. Gregory Echt
Las Colinas Cancer Center
7415 Las Colinas Blvd
Suite 100
Irving, TX 75063
###-###-####

He was very complete with various tests to make sure that it hadn't spread into other parts of my body. But after a full body scan he became concerned that it might be in my lung and my ovary, so I was under his care for about a year. After numerous tests and scans, he determined I was cancer-free and released me. He did put me on Prednisone for about 3 weeks. Honestly, that was probably the worst part of my treatment because I had experienced every side effects from that medicine. The worst one being weigh gain.

Do you know what stage the cancer is with your daughter? The best thing she can do is stay busy. All the stuff I had to do for the cancer, which entailed doctor visits or some sort of tests almost every other week for about a year, messed with my head. Because your daughter is young, she probably doesn't understand how serious this is but she MUST keep all her doctor's appointments. As you know it's critical if anything more is found, that it's found early.

I still go for mole checks; first it was every 3 months, then 6 and now it's supposed to be yearly but I go every 6 months. I actually added a new dermatologist just in case my old dermatologist isn't thorough enough. When they find anything, they remove it and send it to the lab.

I hope this helps. I wish you and your family the best of luck with everything. Feel free to contact me if you have any other questions.

Take care - J.

I don't have any referrals or experience for you. However, I did want to say that we will be thinking of her and praying for you all. Please keep us posted as to how she is doing. Take care and God bless!
M.

Children generally handle things like this much better then their parents do. I agree in the other post about letting her stay in school as much as she wants to. A friend of mine in elementary school had leukemia and although she did miss a lot she was always so happy to be able to come and see her friends and try and keep things normal.
Let us know how her next appt goes and we'll say a prayer for your family.