Daughter diagnosed, 2mm?
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January 25, 2013 at 8:16 pm #20964
shep
ParticipantMy daughter’s biopsy came back as melanoma 1/22/13. Her dermatologist told her it was 2mm deep but had her schedule a surgery to remove more with a surgeon. This procedure is to take place 2/7/13 along with a radioactive ‘tracer(?)’ test, I guess, to find out if it has metastized? Did the dermatologist ask her to see a surgeon because it could be deeper, or is this just a normal practice? Her appointment today with surgeon left us with more questions. He will be taking a ‘diamond’ tissue removal instead of ‘circular’. This has no meaning to us, and she has not been ‘up’ to asking questions yet… thanks for any help!! January 25, 2013 at 8:36 pm #58823Catherine Poole
KeymasterYour daughter is very scared right now and it is normal. She needs a Sentinel Node Biopsy which you can read about here on our website at: http://www.melanomainternational.org/melanoma_info/sentinel_node_biopsy.html Also, I highly recommend you look over the topics in
above, especially the terms and newly diagnosed section.BLUEOnce she has received her results from the SLNB, she will know her stage which depends on whether they find any melanoma cells in the lymph nodes. From there we can try to guide you, but there are few adjuvant therapies for melanoma from stage 2-3.
It is great you are doing research for her until she is in a better state of mind to deal with it all. It is overwhelming I am sure. Make sure she is getting treatment in a place of excellence too. Let us know how we can support you.
January 25, 2013 at 8:42 pm #58824shep
ParticipantThank you Dr. Poole. She told me they will do testing and/or removal of lymph nodes that show any mitosis(?) from radioactive tracing. And i will read the ‘Blue” stuff above!! January 25, 2013 at 8:56 pm #58825Catherine Poole
KeymasterShep, I’m not a doctor, but patient navigator. If you go to the link I gave you it explains what the sentinel node biopsy does, here is a bit of it: “ This diagnostic technique involves injecting a small amount of radioactive material around the site of a primary melanoma and then scanning different areas–the armpits and groin, for example–to see which one or ones “light up.” The technique is called sentinel lymph node biopsy (or SNLB) and has been designed to determine whether the lymph node that would potentially receive colonies of cells from the primary melanoma has actually done so.I hope that helps you further.
February 1, 2013 at 3:22 pm #58826shep
Participantnew information on my daughter. she has had 6 more nevi removed, 3 were positive but not malignant. she is now being diagnosed as having dysplastic nevus syndrome, more nevi to be biopsied. still no WLE or SNLB (scheduled for Feb 7) however, with this new diagnosis, should we be looking at a clinical trial? there is one being done and actively recruiting at 3 locations near us. 2 in Chicago at Rush and Northwestern. another in Peoria (even closer) at OSF St. Francis. the trial # is NCT00297895. it looks as though this decision must be made prior to a WLE or SNLB which would be performed at Peoria or Chicago locations and not at our current appointed surgery. Please let me know about this trial, as much of the terminology is foreign. February 1, 2013 at 6:05 pm #58827Catherine Poole
KeymasterNO! Your daughter has dysplastic nevi, my husband and his family all have it and they are just watched closely. It just means you need to have whole body photography and go to a pigmented lesion clinic if possible. I will look to see where there is one, but possibly Northwestern does. Her previous moles removed were benign. So no worry. It is doubtful any would be malignant, but with careful watching, you will find any change early. This is not a serious disease, but just a syndrome that many people have. Rush has a clinic: http://www.rush.edu/rumc/page-R12605.html and Northwestern has one too:
http://www.cancer.northwestern.edu/public/learn/early_detection/programs/s_pigmented.cfm I would get a second opinion from either one.
February 1, 2013 at 6:48 pm #58828shep
Participantshe has been diagnosed as melenoma (minimally stage IIB depending on WLE and SLNB) AND with dysplastic nevus syndrome. this is why i asked about the trial, because she has been diagnosed with melanoma (2mm deep with ulceration). sorry about the confusion. February 1, 2013 at 10:25 pm #58829Catherine Poole
KeymasterOk, I looked at that trial. You don’t know if she have positive nodes yet? This trial specifies: All subjects receive sentinel lymphadenectomy. If the subject is sentinel node positive and meets study requirements, the subject is randomized to receive either (1) completion lymphadenectomy (2) observation with nodal ultrasound. Interesting trial! Let us know what you/she decide. February 1, 2013 at 11:57 pm #58830shep
Participantok, thanks… will do… still nothing but waiting till the 7th of feb. i have e-mailed the trial contacts to get more information. this is a world where it seems you get info one step at a time as you get more information to lead you to the next ‘step’. i did hear from a forum at MRF from a survivor who participated in a similar trial, different # with good results. trial started in 2004 with this person and is ongoing. had manageble lymphodemia(?) with complete lymphodectamy(?) or LND(?) February 15, 2013 at 3:20 pm #58831shep
Participantmy daughter’s 4 lymph nodes found to be sentinels two each under her arms were returned negative!!! her WLE from primary and 4 other dysplastic nevi all returned benign also. she was diagnosed melanoma positive on 1/22, had her SLNB and WLE surgeries on feb 7 and drove with us 5 1/2 hours south the next morning to help coach her sister thru her first child’s birth… very proud of her. we were so worried because the radioactive isotopes only took 15 minutes to reach the sentinels. results came back on tues 2/12 and i burst into tears at the news. we are so thankful and am wishing well to all in this forum who have helped me get a handle on this disease. now she realizes how important it is to keep up on her nevi conditions. February 15, 2013 at 5:31 pm #58832cohanja
Participantwhat does it indicate, the time it takes the isotopes to reach the sentinels? i didn’t realize that had meaning congratulations on the results, good news
February 15, 2013 at 6:48 pm #58833shep
Participantcohanja… well, usually the techs that administered the test said it could take up to 1 1/2 hours for the results to show up in the lymph nodes. we were worried that since it didn’t take much time, that it would be more likely that the melanoma could have traveled to these nodes. i posted this to let others know that a quick response doesn’t necessarily mean anything. thanks February 15, 2013 at 8:46 pm #58834Jenni
ParticipantJust wanted to say , Congratulations on the good news!!!! Have a great weekend I hope your daughter (and everyone) can get back to living life. Just keep up on those derm appts!! Best,
Jenni
February 16, 2013 at 1:40 pm #58835Worrywart
Participant Congratulations on the great news! -
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