Cutaneous T Cell Lymphoma

By debteague on Tue, 02-21-12, 18:00

Posted in Group:

Non Hodgkins Lymphoma

Looking for doctor referrals in the Atlanta, GA area.
I am almost 41 years old and was diagnoised on Dec. 29, 2011. I had a biopsy done from a spot on my right breast on Dec. 9, 2011...I noticed the spot around end of Oct. 2011 and thought it was possibly a ring worm. The biopsy results confirmed early stage of Cutaneous T Cell Lymphoma. I had no other spots at that time, but within a few weeks spots began to show on my sides, lower back and hips, as well as the front of my lower abdomen. I have a weakened immune system and have dealt with Hypothyroidism since 1996. I have also had many other T Cell problems. At age 12 I had Pitaryasis Rosea on my lower back, psoraisis on my ankles and back of neck through my teen years, and in 2000 I had Lichen Planus on the cheeks inside my mouth. I have none of these issues now, though since finding the rash spot on my chest I now have two itchy patches in the back of my head near my neck line.
I have seen my family doctor, 2 skin care specialists at Emory, and a Cancer Specialists and all say use Vanos cream and see them back in a year. One skin care specialist did want to put me on Soratane and light box therapy, but I am afraid of Acutane drugs and light therapy is very expensive to purchase. I feel like no one is addressing this from possibly spreading. I would like to see other doctors or find information to tell me whether or not there is anything else for me to do at this early patch stage.

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By rascal1 on Wed, 02-22-12, 00:43

Hi there... I would consult with an Oncologist...they deal with the cancer aspect and the treatments you should do. They will also refer you to where you need to go after seeing you. If you have medical records on this make sure you have them transferred to him before your appt. so he has all the info. for the appt. Once you have the type and stage you can call 18004cancer and they can give you all the up to date info on your cancer. Good luck on yournsearch...you have found the right site for support!

Sending hugs and prayers your way for strength.

Diffuse Large B Cell Lymphoma Stage 3A
Finally finished treatment 6/13/11 and in remission!!!
Gotta love it,

rascal1

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By Geri on Wed, 02-22-12, 05:46

Sadly, many of us deal with multiple woes, in addition to the FN cancer. I agree with Rascal-see an Oncologist. Have you done an Oncologidst search on the internet for your area? At any rate, start with one..you can always change.
It is prudent to wait for a complete DX, but you also need to feel comfortable in the interim. Please keep us up to date....

Geri
NHLymphoma B-Cell
Nodal Margnal Zone
Stage III
Diagnosed 1/07
Treatment started 5/10
Treatment ended 11/19/10

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By judy905 on Wed, 02-22-12, 12:37

Emory has a cutaneous lymphoma clinic. The specialists you want to see are, either Sareeta Parker (dermatologist) or Mary Jo Lechowicz (oncologist). Both are very good and should be able to give you all the information you need.

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By debteague on Wed, 02-22-12, 13:18

Thanks for your suggestions. I saw Dr. Sareeta Parker on Feb. 9th. She was ok, but didn't really seem interested. I guess she sees so many that to her my case was mild, which is great, but Lymphoma by it's name sounds to me like there must be something that I should do rather than just apply cream to spots. I feel lost, but I guess I should be glad that I have early detection and that my rash is very mild....but I still can't stop worrying that if I am not treated in some other way that this will all spread. I am not to see her again until a year from now unless I begin to see more spots. So for now I will rely on prayer, eating healthier, excersise, and holistic care.

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By rascal1 on Wed, 02-22-12, 16:28

Hence the reason you should see the Oncologist to be sure you are covered from each direction. This is their specialty! Go now so you can rest assured you did your best, and quit worrying. Stress is soooo hard on one's body you would be suprised what it can do for you!

Sending hugs and prayers your way for strength.

Diffuse Large B Cell Lymphoma Stage 3A
Finally finished treatment 6/13/11 and in remission!!!
Gotta love it,

rascal1

Support Points: 31875

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