CancerCompass message board discussion started by Glenann on 9/29/2005 http://www.cancercompass.com/message-board/message/all,3083,0.htm Fri, 21 Nov 2008 00:00:00 GMT Fri, 21 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My 33 year old daughter has just been diagnosed with Level 2 melanoma in the center of her back. It was detected during her third trimester right before the birth of our second grandson, who is now three months old. Someone in the Atlanta, GA area, please respond with the name of a skilled oncologist/surgeon. She's meeting with a doctor at Emory Hospital tomorrow, but doesn't know who to trust. Please help. Prayfully, Glenann Glenann Thu, 29 Sep 2005 00:00:00 GMT Try to get her to Houston Texas at MD Anderson Dean in Georgia Thu, 29 Sep 2005 00:00:00 GMT Dean in Atlanta, Thank you for your rapid response. M.D. Anderson in Houston was suggested to me today by a teacher friend at school. I'm starting to get frustrated because I feel a tremendous sense of urgency, and it seems that the dialogue between our daughter's dermatologist in Cartersville and the dermatologist at Emory is taking too long. Shannon , as of late this afternoon, has a consultative visit at Emory next Tues. She is leaning toward finding a specialist closer to Cartersville, eg. (Kennestone Hospital.) She doesn't want to be so far away from the little boys. I feel this may be a huge mistake to choose a smaller institution. Have you had a personal experience with the cancer research hospital in Houston? Do you know a particular specialist that is renown in melanoma surgery and treatment at this hospital? Prayfully, GlenAnn Glenann Fri, 30 Sep 2005 00:00:00 GMT Yes, my son was treated at Houston. By pass the locals, especially Emory University. We were also at North Georgia Oncologist in Kennesaw. Houston is a first class operation, you do not have to a referral from a doctor unless your insurance company requires this. You make your own appointments. MD Anderson was rated the #1 Cancer Hospital in the world from NewsWeek world reports. They treat aggressivley and are unique to their set-up. Example, when my son was in the hospital section receiving treatment and ready to go home, the pharmicist comes to the room for prescriptions, they are (MD Anderson) the largest single pharamcy in the world. Visit their website, they have a travel department as they treat people from all over the world. Many type accomodations are available. They make each patient feel they are the only patient. When you go to MD Anderson's website, search for the department (dermatologist) that your daughter falls under and you can find out about that department and it will list all the doctors in the department, treatments, etc. You will be assigned a doctor when you make the appointments. View all the website very informative. Fly into Houston Hobby Airport, it is only about 25 minutes to MD Anderson, unless you drive. I know your daughter hates to disrup to life with her children, however her future is at stake. Go to the best. Dean in Georgia Fri, 30 Sep 2005 00:00:00 GMT I did not get to finish my last message so it continues to you. You cannot delay with Melanoma as it jumps around, it travels to the lymph nodes, lungs, and brain. Catching it earily is most important. Agressive treatment. Later I will finish this and tell you about my sons journey with Melanoma. Dean in Georgia Fri, 30 Sep 2005 00:00:00 GMT Thank you, Dean. I detect a sense of urgency in your tone. I'll be in touch. God be with you, Prayerfully, Glenann Glenann Sat, 01 Oct 2005 00:00:00 GMT melanoma's that have not spread beyond the site where they developed are highly cureable. This would include stage II as, by defination, these have not spread to lymph nodes and have no distant mets. Once melanoma begins to spread (metastatic melanoma) it is rarely cureable. The 5 year survival rate for localized melanoma is over 95%. Be thankful it was caught early and continue with frequent checkups. Oncrx Mon, 03 Oct 2005 00:00:00 GMT Hang in there with your daughter. My husband and I just returned from the Moffitt Cancer Center in Tampa, Florida. I highly recomend them to you. They are a comprehensive center, and was very informative and helpful. They gave direction where no one else could. We now have a treatment plan, and the prognosis is very much encouraging. Also, stage 2 is normally cureable. They have a department that specializes in common and uncommon cancers. They also have a Melanoma Research Clinic. Dr. Daud is our Oncologist. Be blessed with on this journey. My prayers are with you all. Gail Tallahassee, Florida Anxiouswife Mon, 03 Oct 2005 00:00:00 GMT Someone I recomend is Cancer Treatment Centers of America/Southwestern Regional Medical Center. I am a 6 year survivor of Stage 3 Maligant Melanoma. My prognosis was death in 5 yrs or a reoccurance. Do NOT dwell on the prognosis, that is negative thinking and postive is what you must be. Call 888.816.5122 and ask for Oncology Information Specialist. They will answer all your questions, are very informed about all types of cancer; and have more than one hospital and will refer you to the one best suited to your location and cancer treatment. They offer the Holistic approach and believe me my body needed help to handle the surgeries and years worth of Chemo. But with God's help I did it and your daughter can too. Thru nutrition, naturopath, mind/body therapy, massage, rehab, pain management, Faith Factor etc., there is so much you as patient can do to help the oncologist and the treatment plan work in your body. Be proactive also with a dermatoligist and be aware of "any" change on body and "LIVE" Living with cancer is doable and then the next step is being in remission. Yeahhh!! I am a 6 yr survivor and go for checkkups every 6 mos. If it would help to talk to me my phone number can be given thru the Cancer Treatment Centers of America in Tulsa, OK. My energy level is forever changed and some other "liveable" sideaffects from the chemo and surgeries, but life with my children and grandchildren, neices and nephews is just so sweet, colors so bright, flowers and food odors now are so wonderful. May God give you wisdom and direction. If you don't hear from anyone with the 800 # I gave you, call it back and ask for another 24/7 # that will still route you to who you need to talk to. Sister in Christ, Sheila Plummer Melanomablessingsliving Fri, 07 Oct 2005 00:00:00 GMT I agree also that Stage one and stage 2 are highly curable and are at that stage because they were caught early. If you would like a personal touch/comfortable atmosphere where they call you by name no less and not a "number" the Cancer Treatment Centers of America have several excellent oncologists and have many patients that were told my MD Anderson to go home and get their affairs in order they could do nothing. I met many of these people personally, that is stealing hope. Also if there is another hospital in the nation that can help your daughters specific cancer, Cancer Treatment Centers will tell you and recommend that you go there. They want whats best for you the patient and that may not be going to their facility. Doesn't happen often. The hospital also flys the patient round trip,if not on medicare, every single time to the hospital and will pay for a family member too, the first time, but always the patient. They also have outpatient guestrooms within the hospital itself, with organic food cafeteria, and provide transportaion away from the hospital for a "Day out" to shop go to a park etc., along with all the other holistic opportunities I mentioned in the 1st message. You will have many opinions and strong recommendations; but pray and ask God to give you divine direction, I did, and for me, He sent me to CTCA in Tulsa OK. Their web site is www.cancercenter.com Hope that can give you info as well. God speed and rest easy stage 2 is a early diagnosis, but melanoma being what it is, don't dwadle get going somewhere and have a treatment plan in progress. Sheila Melanomablessingsliving Fri, 07 Oct 2005 00:00:00 GMT Dear Sheila, Thank you for your response. I pray that God will continue to strengthen you every day. My daughter met with a dermatologist/melanoma specialist at Emory University Winship Cancer Center in Atlanta, GA last Tues. They were suggesting to perform surgery that day and not check lymph nodes. She requested and received a 2nd opinion that same afternoon from an oncologist at Emory. The latter one suggested surgery and a check of the lymph nodes via a special "blue" dye procedure. The date hasn't been confirmed as of yesterday. They aren't getting in a hurry, and I personally feel frustrated. They assured her that her surgery is being processed. I'm glad she asked for a 2nd opinion, but wish that the melanoma could be removed quickly. Prayfully, Glenann Glenann Sat, 08 Oct 2005 00:00:00 GMT The blue dye is part of the node dissection and they give her a shot of nuclear medicine, kinda like a geiger counter so they can tell what area of the body the node is that takes care of that melanoma site then the blue dye, for me they used Vital Blue Contrast Dye, they inject that so it goes right to the node that could be affected so they know which one to biopsy. I had had no surgeries 6yrs ago, just 2 babies and unbeknownest to me I am deathly allergic to the dye and my blood pressure crashed in surgery and they bout lost me BUT they knew what to do and for 2 days afterward I was getting syrenges(sp) thru my iv of benederyl and my husband at the time said I looked like I had been in a car wreck back in the room total body swelling , looker beat up I guess, all I knew was I couldn't stop ctying as I was emotional plus being in pain. I was at a facility in NE before I knew about Tulsa and they didn't tell you anything of what had happened, they were God and I was the patient. It took way too long to find out what had happened as I'd ask about the injection to my IV the male nurse told me what it was and I couldn't figure out why they were giving me benederyl. Anyway. that is all a dark memory as I was and am empowered with knowledge to help my body fight cancer thru Tulsa. Just telling you about my reaction in case your daughter has something similiar, it will all be okay. Keep pressing for the surgery, as a melanoma patient they have to know that you want it out of you asap! If they get there act together within 3 to 4 weeks that is pretty normal. No later. When they find the stage it will put the treatment plan into the proper perspective and hopefully give a sigh of relief. Keep sunscreen on those grandbabies. I still have to harp at my two daughters and have 3 grandchildren, and many neices and nephews....my aunt had melanoma on her face and then me, so our family genetically is predisposed to the disease and I sometimes feel I just wasn't a good enuf melonoma "Poster Child". So Frustrating!!!!! When you go thru this, you want NO ONE to ever have to go thru it EVER! Just like life guess they have to find out for themselves and it is sooooo senseless. I will have computor access thru the 15th then its hit and miss bout once a month as I don't have a computor. My home phone is 785-737-2030 or cell 785-672-7334. Call me if you ever need to talk or just to tell me whats going on and what may happen next. The bad thing about cancer is that no one person responds in the same way to dyes, chemo's etc., thus there not having a cure as what didn't work for someone else very well may work for your daughter and vise versa. I can tell God is your strength, and I am glad you are there and computor savvy as I was in a vegged out state for about 3 mos, zoning, denial, not really "getting" what the disease was; not understanding what all the hustle was about, and then I found Tulsa and have a medical team that includes anything medical, plus all avenues of a hospital as cheer leaders, guest rooms, patient relations, nutrition, nathorpath, therapy, chaplins, acupucture, pain management, physical therapy and other patients, we strengthen each other thats where we get the "fight" and the drive to take control of this disease and with God's help is the only way it can be done. Frankly getting into these messages has lit a little flame of fear, lest by the grace of God go I, especially the ones that are stages higher than mine as I could be next with a reoccurance, but that is the devils game and thank God, Christ counters that quickly. This journey you and your daughter are in is a new way of life and will be your life but it can be a very healthy happy life surviving and then thriving as healthier, stronger fighters of cancer. The odds now of someone getting cancer is not if but when, the minority are those who have never had cancer. If our immune systems are working correctly everybody is getting rid of at least 500 cancer cells a day and if I didn't tell you, cancer "THRIVES" on sugar and aspertane causes cancer. So eat lean meats and lots of dark colored fruit and veggies. I was and am on a stringent supplement program approved by the nutritionist and the nathuropath as we dont tend to eat well in this state of shock and going thru treatment but even tho I am not in treatment now I continue to take cancer fighting supplements, believe in them as helpful preventive tho expensive have had to modify doseage. Prayerfully, Sheila Melanomablessingsliving Sat, 08 Oct 2005 00:00:00 GMT