Hi my name is Megan and I was diagnosed with melanoma in July 2016. I'm a mom of a wild toddler and a 5 month old, and I'm 33 years old. Id been getting yearly checks since high school at my dermatologist. For some reason I felt like I knew I'd end up with some sort of skin cancer, but I didn't think I'd be so young and have melanoma. It was still a huge shock to get hat phone call. I had a wide excision done the day after I got the results. The particular doctor I saw, I felt like I had to convince him to remove my "lesion". When it came back as melanoma I was angry. I thought to myself if I hadn't convinced him to remove it, where would I be in a year? Would I even be here? I have hundreds of moles on my body, and I was pretty concerned that this doctor probably missed other melanomas. I felt like I couldn't trust that doctor and was feeling a bit hopeless. I have since switched dermatologists and I'm going on every 3 months for checks. The melanoma was on my right thigh and I continue to get biopsies done every time I go back! Maybe it's a little excessive but I feel like it does bring me a little peace of mind on other areas I'm not so sure about. I've had 2 come back A typical, but no melanoma.
My incision was numb at first, but in the last few weeks I'm starting to get feeling again. The last couple days it's feeling a little off though. I can't really describe it, but it almost feels like restless leg, but in my thigh area? Weird way to describe it, but that's the only thing that I can compare it to. I'm hoping it might be because of doing lunges, but why isn't my other thigh sore? Or maybe it's just the nerves? Anyone else have this problem? I should say it's "Clark level 2 PT1 A" what stage would that be considered? 1A? I get confused by the Clark level and stage. Sorry for the long post! I'm just happy there is a place for us to talk about our concerns and get support!!
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BlondieMeg
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I would guess that your melanoma was staged as a 1A and that the initial lesion had a Clark level depth of 2.
I had the WLE on my shoulder and I did have a few days about a week after the surgery where it felt weird. The feeling I had was like the floppiness you feel after drinking too much water. You may be able to call and speak to your surgeon or nurse to see if it is anything to worry about.
Thank you! It's all very overwhelming isn't it? How are you doing? It's been a year for me, but I still get pretty nervous from time to time. How are you dealing with the summertime? I miss going outside in the middle of the day and not worrying about the sun. It's been quite an adjustment. But Im so thankful I'm here! Just gotta stay positive!
I miss outdoors too. But I wouldn't have been outdoors much this summer anyway, as we have been saving vacation time for an extended honeymoon. And wedding planning has been keeping me busy.
I was only diagnosed end of July, but I agree with getting nervous. Did you find that the nervousness eased over your first year?
Congrats on your wedding! That is so exciting! When is the big day? Or did it pass already?
Yes it has gotten easier over the last year, and I expect with time the nervousness will fade more. All I can say is I'm relieved winter is on it's way! I wish I would've found this group earlier!! That's great you found it early on.
I am also a 33YO mother of 2 little ones with PT1A! Agreed the staging is confusing and the only insight I had was from a Google search. I had 2 atypical moles removed after finding the melanoma, and now I have a list of 5 I'm worried about for my next derm visit in November!
I felt the same shock - I have some family history but thought I was careful and it wouldn't impact me til much later. Now I feel like I am afraid to step outside. Have you made changes to your daily skincare routine? I haven't decided if I should apply suncscreen every morning after my shower, or right before I get in my car on my 30 minute drive to work, or just always wear longsleeves. Get lotion + SPF AND wear sunscreen in addition? If I'm driving after 4pm, do I not need to worry about the sun? I wish there was a guide to exactly what to do. I love being outdoors, hiking with my kids, and now I'm afraid to walk down the street with them. I'm sure it will get easier with time, but I want to know what to do right now.
Hi my name is Charity, it is very scary. I just was diagnosed melanoma in situ this summer. My surgery is in a couple weeks. Now I am concerned with other spots on my body. I actually made a natural sunscreen with essential oils today which I will wear every day. I will wear stronger if I am outside for a period of time. Just sitting in the car I have been paranoid trying to cover up my skin. I do hope it gets easier. Good luck to you both!
Still getting used to this site, I didn't see your post! That's cool about the sunscreen! How'd you find the recipe? I've been curious about natural sunscreens myself. Good luck with your upcoming surgery. Are they doing a wide excision or something else? Sorry I'm still not the best with medical terms
My mother in law got the recipe for the sunscreen on a site she follows. If you on Pinterest there are a few recipes. There are some oils that have natural spf. I figure I moisturize everyday anyway so why not make my own with benefits to the skin and no chemicals.
Hi!! Thank you so much for replying! It's so nice to talk on here. Sometimes I feel like no one around me understands how serious and scary this can be. I have to say this year has really been a head trip for me! And yes you're right with time it's going to get better. I'm already much better emotionally than I was last year, (it was probably pregnancy hormones on top of it!) but I'm not allowing myself to get too comfortable. This is a major lifestyle change for sure!
We are a very active family too like you!!Hiking, and biking being our favorites with the little ones. This summer we have gone on our bike rides and hikes well after 4pm. Also I wear sunscreen on areas exposed to the sun. Look into under armour long sleeve hiking shirts. They are spf 50+!!! I bought 1 in all colors. Also Fabletics (the Kate Hudson brand) has SPF leggings and capris in really fun patterns and colors. I also wear a baseball cap. It's pretty much been my mom/melanoma uniform this summer if we are doing active stuff or just hanging out outside. I also stay in the shade when I can. Unfortunately, I have had a few people comment on my attire. "Wow aren't you hot?? You should be in shorts!!" That sort of thing. But really, I don't care. I want to protect myself and be around for my boys. So I too was worried about driving and sun exposure!!! My mom told me it's a law that windows in cars have SPF! ( it's probably not called spf with vehicles but you get what I'm trying to say). Maybe I'll google it tonight. So If you like to do active stuff outside, I'd wear spf clothing and sunscreen! And a hat. I definitely don't know what to wear other than that tho! I'm scared to show any skin at all. And going to the lake or beach, or pool? Pretty much makes me a nervous wreck! Any advice? It makes me sad thinking I will miss out on outdoor activities with my boys. I'm still trying to get used to all this.
When were you diagnosed? What made you go get checked? Btw my next app is November too! 🙂
Thanks for the tip about the under armor. I would never have thought of that.
I love being in the water, so I am looking into a diving fleece. It doesn't get as hot as a wetsuit and it covers from head to toe. Depending on your water activities, it might work for you too.
Thanks for the info on diving fleece! I've never heard of it before. Might be kind of nice if I decide to venture out to the lake next summer! If you get one let me know what brand you get and what you think of it!
I was just diagnosed in August and I'm recovering from surgery last week. Stitches are 5 inches right on my spine. I'm glad it's Fall because I don't know what I'll do next summer with swimming. Wear a full body wet suit at the local pool?
I want to get back to my normal activities and teach my kids to be careful of the sun but not afraid. Not sure how to do that yet because I am still feeling scared!
Oh wow that was so recent! I'm so sorry! On the spine sounds pretty painful. I hope you are recovering ok!
I know I'm pretty bummed about swimming too, no shorts, or bikinis! It's kind of a loss, and we just gotta deal with our new normal. We still have to live our lives. It's scary tho. I don't ever want to get comfortable and careless, but I think it will get better.
Oh, and my dermatologist found the melanoma during my yearly skin check. I've had yearly skin checks since I was a teenager but I still didn't expect this!
My name is Mark my melanoma started the same way yours did and I made the mistake of not going to see an oncologist because now five years later I am at stage four and it metastasized through my whole body into my spine also please go see an oncologist that would be my advice to you God bless you and good luck
I'm 29, had a melanoma in situ diagnosed in 2015 after having had a skin check, being cleared, going home thinking something was strange, went back, and melanoma. I just has my second melanoma in situ diagnosed on my left thigh a few weeks ago. I live in Seattle, which is why I was inclined to reply to this post. I'm going to UW right now, but am curious if you have any recommended hospitals? I tried to call the Melanoma clinic at Virginia Mason today, but they aren't taking new patients and haven't been for three years.
For me, the worst part is since I have so many moles and am so young, do I have other melanomas that are unknown? Really unsettling to know this is something I'll have to deal with the rest of my life.
Hi! So sorry to hear about your melanomas, but I'm happy you caught them so early!
Is your dermatologist at the UW? Have you been seeing dermatologists only? If you are going to the UW I feel that you are lucky! I have been trying to get in with them but they are not taking new patients. I've tried several times. I have a friend who is going there, she is our age, and has had melanoma 3 times. She feels confident with her care there. Plus i would think they would have all the latest technology, and cancer care alliance is near there too.
I have been seeing dermatologists since I was 11. Just for the minor things like acne. Then in high school I decided to get my yearly skin checks. I had always gone to cascade eye and skin. If you've ever been there, typically you get a different dr every time. Usually I would just ask for whomever had the earliest appointment so I could be seen asap. The last dr I had to convince to remove my lesion. He doubted it was melanoma , but sure enough it was. Now that was unsettling for me!!! After I got the call that same dr did my surgery at the clinic. After that I decided to go to another dermatologist in Renton. She has been really great. I can give you her name if you are interested. I've been seeing her every 3 months. I feel scared to move it to every 6 months. I feel like I'm not quite ready for that.
I get nervous with every little ache and pain anywhere on my body. With so many moles on me as well, I was feeling kinda hopeless and overwhelmed. Do you feel that way too? I have a large 6 inch scar on my thigh. I don't mind it . I just don't like the fact it looks like a shark took a chunk out of my thigh. But hey, it's a small price to pay, I'm just thankful to be here!!
I think it's great you are taking photos! My dr takes photos and my husband looks at my backside, but I think I may do photos as well.
Good to know that you've heard positive things about UW, thanks for sharing.
I totally feel that way too, I've had a few permanently swollen lymph nodes in my neck for probably 10-12 years that doctors have told me are fine and just never went down after an probably a cold at a younger age, and I'm like convinced they're metastatic melanoma. It's hard because being a psycho is such a slippery slope, but also being a psycho helped me find these melanomas early.
Yes, my leg has a 2" gash now, that will need to be opened back up to take more margins. I'm glad to hear that you've grown used to it, and I agree with you I feel SO dumb for considering any cosmetic level to this, but it's like, this whole issue has already taken a bit of a toll on my mental state, can't I at least keep some vain self worth
I would HIGHLY recommend the photos. Both times comparing my body to the photos found the melanoma. I did them at UW in the dermatology clinic. I want to say there were around $1k, but insurance covered and I think I paid like $150 out of pocket. Pretty weird to have a set of high res photos of every inch of your body, but I couldn't recommend it more.
Thank you so much for replying. It's nice to talk to people that understand the anxiety of all of this, my boyfriend is supportive, but also I don't think understands the weight of how serious melanoma could be.
You are so like me!! I've been a total psycho myself.... I can't help it!! But I love that you said bc of being that way, you found your melanomas early. So true!!
Where are you having your surgery? Oh and when is it?
Let me know if you find something for your scar. I've excepted it, but if I can make it look better, I'm all for it! I've been getting so many biopsies done this last year, they are all really red. My other ones from the past have turned white, but I'm starting to think these will stay red forever. For some weird reason they bother me more than my "shark bite"!! My dr said vitamin e, but I haven't seen too much improvement. I think it will just take time.
How did they know it was melanoma? Was it black (like mine) or did it just grow bigger? I have a few that have grown, but I don't know which ones I should be concerned about.. There was 1 that was super small and normal looking, but I had it biopsied bc it was kinda scabby. It turned about A typical! Then I've had some super gnarly ones biopsied and they are totally normal!! That's what is so frustrating about them, I don't know what to think half the time! So yeah I can relate!!
Are you in Seattle then? I'm in pierce county. Graham near Puyallup!
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