› Forums › Cutaneous Melanoma Community › Family history
- This topic has 14 replies, 6 voices, and was last updated 7 years, 8 months ago by
stephanierm.
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- March 12, 2017 at 11:25 pm
I will try to make this a short version. I was diagnosed with a congenital atypical spitz nevi that turned into melanoma in situ stage 0 in August 2013,age 24 while pregnant with my first daughter, it was removed with clear margins. My brother, age 33, was diagnosed with stage 3a melanoma in December 2016, my father was diagnosed with melanoma in February 2017 (still awaiting staging results), my grandfather had multiple melanomas and has since passed and also my husband was diagnosed with stage 1a melanoma at age 15.
I have 2 daughters, age 3 and age 7 mo. Their pediatrician referred them to a Preds dermatologist because of our family history. My question is, should I have their peds dermatologist remove ALL moles they develop throughout their lives, and I believe my 3 year old has congenital spitz nevi but the derm said we can watch and wait to remove.
There is just so much family history of melanoma in our family, I feel like my children will 100% get melanoma in their life and I want to do everything in my power for that not to happen. What should I do?
Thank you
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- March 13, 2017 at 6:51 pm
Has you or your family members with MM ever got genetic testing? if not, then may be you could get them and also get your babies tested, and then compare your results for any similar mutations
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- March 14, 2017 at 4:12 am
Thank you for your reply, my dad just got some kind of finger print test done for genetic testing but we haven't received the results yet, he got it done last Friday and his dermatologist said it takes 3-4 weeks for the results and they would use his results for further research. My husband and I decided we would get our girls tested as well as us. I will post our results when we get them for feedback. Thanks for responding.
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- March 14, 2017 at 8:43 pm
You Dad's genetic testing is not what you need. That is testing tumors for treatment options. That is not the same as checking your existing DNA to see if you have a predisposition or existing genetic defect for melanoma. That is what tells you how high a risk your kids are. Obviously, they are at higher risk because there is a family history. But melanoma can run in families and not be related to a genetic defect. (Sun exposure, hair and eye color.. these are other risk factors). But if you have a genetic defect, that will significantly increase the risk for your children. I'd consider a test and talking to a genetic counselor. As for removing all the moles… it's never been considered a good option. Since 50% of melanomas grow on new lesions, removing existing moles doesn't tend to change survival. I would just watch for change. In kids, change means "asymmetrical growth" as opposed to just getting a little larger as your child gets larger.
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- March 16, 2017 at 4:43 am
Thank you for all of this information. I really appreciate it. In doing my research I feel like I am still not understanding everything I read, or its getting jumbled and I am not obsorbing everything I should. I feel overwhelmed. I will surely get the genetic testing done and speak with a genetic counselor. Should my husband be tested as well since he has had melanoma also, at age 15. The only other person in his family that has had it other than him is his grandmother on his mom’s side. Is this something our insurance will cover? Even if it doesn’t we will still get the testing, just wondering. I just want to be as prepared and knowedable as I can be for my babies. Thank you, I can’t tell you how much I appreciate everyone’s replys.
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- March 14, 2017 at 1:18 am
So sorry to hear of the fear you are feeling when you consider this sort of intense familial link to this disease.
It seems logical for a person to think that removing all their moles will prevent melanoma. It would be a great thing if this could work. But as I have understood it, cancer is a disease that attacks organs usually, and the skin is the body's biggest organ, malignant melanoma starts in the melanocytes of the skin. It often first shows up in the moles where there is a concentration of melanocytes, however, it can erupt anywhere on the skin. It is for this reason that removing all our moles, does not prevent the disease.
As a Mom, if I were you, I would raise my kids with an embedded habit of safe skin care which would include SPF clothing, sunscreen, avoiding the sun and monthly skin exames. I would make is seem like a positive, normal part of life to always be conscious of their skin and sun exposure. You could also do mole mapping photos of them, your dermatogist will suggest the right age to start that, I have heard age 10 is right.
The best defense against this disease is awareness and early detection. Armed with those tools, it is highly cureable.
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- March 14, 2017 at 4:25 am
Thank you for your reply, it subtled some of my anxiety. Also thank you for explaining melanoma the way that you did, it makes a lot of sense how you described it. I will raise my kids exactly how you described and already went online to look for everyday SPF clothing for them and purchased some cute hats! My husband said safe skin care and sun exposure will be just like brushing our teeth in our household now!
I really didn't realize that melanoma was so dangerous. I am now awaiting new biopsy results for a few suspicious moles, but am optimistic it was just my heightened anxiety after my brother and dad were just recently diagnosed.
Thanks again and hope all is well
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- March 14, 2017 at 4:34 am
I don't want to say this to scare you but you should know that from what you've described there definitely seems to be a genetic connection. With genes, it doesn't matter if anyone has been exposed to the sun or not, they can still get melanoma. I was raised with major sun safety, never getting a bad sunburn or a tan in my life. But, now I know, because of my genes I got melanoma anyway. Obviously it is still good to teach them safe sun techniques so it becomes second nature like it did for me.. no one wants to deal with sunburns. Just make sure you are open with your kids as they get older about keeping an eye out for any new or changing moles and make sure they always keep up with regular skin checks. Any new or changing mole should get biopsied. I hope your kids never have to deal with this stuff, but they will be fully equipped to be able to spot something very early in order to make sure they get a full cure by surgery if ever needed.
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- March 14, 2017 at 6:14 pm
What cancer center should we go to ? My brothers melanoma specialist is in San Francisco and my dads is in Redding CA at this point. My husband also was seen in SF as a teenager. How do we go about doing all of the testing ? Thank you
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- March 14, 2017 at 7:05 pm
UCSF in San Francisco would be the best option if you're in that area
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- March 14, 2017 at 7:12 pm
I agree, UCSF would be the place to go for genetic testing. I've never had it done myself, but I get treated at the melanoma center there, both my dermatologist and my oncologist are there, and their level of knowledge is tremendous.
https://www.ucsfhealth.org/clinics/melanoma_center/
I would give them a call and ask them about getting an appointment with a dermatologist because you're interested in genetic testing based on family history.
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- March 16, 2017 at 4:51 am
Thank you for your input. We will give UCSF a call and go from there. We live about 3 hours away so i think think that would be a good option for us also. I hope treatment is going well for you. I’m glad you really like UCSF . My brother does also. -
- March 14, 2017 at 6:18 pm
Thank you for your reply. This is what I was worried about, is the genetic factor of my children being predispositioned to getting this awful disease. I am sorry to hear that you got it even with your awareness and sun safety precautions. I hope they do not have to deal with it either but we will make sure they are aware of how serious it is when they get older. Everyone's replays really help and make me see different aspects of the disease. Thanks again and hope all is well
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- March 14, 2017 at 8:32 pm
I would have a consultation with a genetic counselor at the cancer center. I am not sure which one. I go to UT Southwestern in Dallas. I had genetic testing done and no gene showed up. I had it done on panel of cancers since my mom is a breast cancer survivor.
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Tagged: cutaneous melanoma, pediatric melanoma
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