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Newly diagnosed – How much do you cover up? sunscreen vs. protective clothing

Forums Cutaneous Melanoma Community Newly diagnosed – How much do you cover up? sunscreen vs. protective clothing

  • Post
    KatieB
    Participant

      Hi all,

      I am newly diagnosed 1A.  I have kids and want to do everything possible to stay on the good side of the statistics.  I have been told to wear protective clothing at all times during daylight hours but that seems really difficult.

      I run marathons and I can run a lot of my miles on a treadmill but when I'm doing a hot long run in the summer, I can't imagine wearing long sleeves and tights…

      And it feels sad to me not to wear shorts all summer.  Though I can get over the sadness – I would rather be alive with pants on if it's important.

      So, I guess, I wonder what you think about sunscreen vs. protective clothing when you are outside?  Is sunscreen ever enough if you're outside for a couple of hours? Or is protective clothing really the right answer.

      Also, I have a number of moles on my back and stomach but don't have any on my arms and legs.   So, are my back and stomach the most important areas to cover or does it not matter?

      As I said, I have kids and more than anything I want to be there for them as they grow up.  I'm wondering how you all handle the need to avoid the sun with living your life.

      Thank you for any thoughts,

      Katie

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    • Replies
        Jamie1960
        Participant

          The Aussies understand melanoma and sun protection; "Coolibar" is one retailer offering well-reviewed sun protection products for men and women. Everyone has their favorite sunscreen; I lean towards those which have the lightest feel, maximizing the probability that I will actually use them – Neutrogena stick and spray products are my go to, usually SPF 70 (whatever that means).

          Bottom line: if you like, you use it.

          How much to cover up ? I am a farmer and boater, so wear a broad-brimmed hat outdoors, long-sleeved shirts, and long pants. Starting this year, I am also incorporating fingerless gloves (by Mangrove) into my fashion ensemble since the backs of my hands have begun to react quickly to sun exposure.

          During my last visit to the derm, I quipped, "My skin wants to kill me", and received the sobering reply, "You're right".

          I have not been religious about my sun protection, but after four WLEs and an SLNB, the message is beginning to hit home.

          Best to get ahead of the curve on this.

            KatieB
            Participant

              Thank you, Jamie!  I appreciate getting the Aussie insight.  I live in Oregon and thought I was safer that way – but it turns out we have the 4th highest melanoma rate in the US. 

            Alce123
            Participant
              I just asked my dermatologist the same question (on the mind since summer is coming). His answer was actually quite refreshing. Basically, don’t get burned. Wear sunscreen (broad spectrum UVA/UVB, spf 50 or higher), cover up when able (when not in the water or being active) and reapply sunscreen frequently. I specifically asked if I should buy a long sleeved/long pants swim suit and he clearly did not think that was necessary. He made my life feel much more liveable ๐Ÿ™‚
              I often have to remind myself that it is unlikely a little extra sun while gardening or running with sunscreen on gave me melanoma… it was tanning booths and hours of unprotected sunbathing. I realize this is not the case for everyone but I belive it is for me.

              Happy summering ๐Ÿ™‚

                jennunicorn
                Participant

                  My derm gave me a similar answer too. Although she was more of the "your mel already spread so no need to worry so much about the skin now.." But, in any case, I just follow the same sun protective regimen I have been following my whole life.. since I am a fair skinned ginger, my parents instilled very strict sun protection into me since birth, so I've never had a bad sunburn, and I certainly don't tan.. but melanoma could care less, it got me anyway.

                  But, I still don't mess with the sun, I wear sun screen ONLY when I am going to be exposed to direct sun for more than 20 minutes. I have Coolibar and other brands of sun protective clothing to put on when I don't feel like lathering up in sun screen as much.. since I hate the feel of it and my eczema hates it too. We have to live our lives the way that it makes us happy, and just be a little more aware of how long we are exposed to the sun. Wear shorts and a t-shirt when you're running if that's what you're comfortable in (I wouldn't want to run in long sleeves and leggings either), just lather up with the sun screen beforehand, bring a small bottle.. or my personal favorite to keep on me is the solid stick version since it's less messy and fits in most pockets.. and remember to reapply. Cover your scalp with a hat. Oh.. and have fun! ๐Ÿ™‚

                  KatieB
                  Participant

                    Thank you, Jenn!  I really appreciate your advice!  It's hard to reconcile this disease with both caution and the ability to still live life.

                    KatieB
                    Participant

                      Thank you, Alc!  I really like that answer.  Not getting burned is easier to monitor than hiding from the sun forever.

                      That's a really good point about what caused it – for me, it wasn't running for 45 minutes with sunscreen on.    But, hopefully the blessing is that my kids now know that they are high risk. So maybe this will keep them from making the same mistakes I did.

                      Jamie1960
                      Participant

                        +1 on that

                      messedmelanocytes
                      Participant

                        This is a great an important topic, thanks for bringing it up Katie. It is beneficial to all of us to share the ideas and advice we have been given over the years.

                        I personally am suspicious that it is even true that we can blame the sun for causing all our troubles with mm.  I would not be surprised if science advises sometime in the future that avoding the sun does not prevent mm as much as we have thought. But still, just in case I have practised safe sun all my life. Now that mm is a fact and not just a fear for me, I have cranked it up a few more notches.

                        Not all sun screens are created equal. Twenty years ago I was advised to make sure I read the labels on the sunscreen and look for titanium dioxide and parsol1789. I can't find any with the parsol in it anymore. It seems the favour now has swung to Zinc Oxide and Octinoxate. I use two sunscreen products exclusivley: Ombrelle 60 Face and Elta MD UV Sport SPF 50.

                        The important things about sunscreen making them handy and accessible so that you use it and often, so I have a small one in my purse, and in the glove box of my car. I have a huge bottle on my bathroom and ktichen counters, it goe all over my face and neck in winter every morning before my make up, in summer it goes all overf anywhere clothing won't be  covering. Also, I use make up and moisturizers that include SPF, even if it is only 15, which is what i usually find is all I can get inbedded in these products.

                        I have read and been warned that it can be misleading to rely on sunscreen. If it does not contain the proper ingredients then it is useless at best and can even be harmful by misleading people into thinking they are protected when the are not. This is especially sad for children who rely on their parents to be dilligent and informed.  It also has an expirey date that should be checked.,  

                        I am an avid cyclist so I have learned not to rely on sunscreen because it sweats off. That is the biggest problem with sunscreen, you don't know how well protected you are even if you are using the right product if you don't know how well covered you are when you are perspiring. Sunscreen I only rely upon to protect my face and for when I am out doors but inactive.

                        Sunscreen is our weakest ally, there is so much more we can do.

                        The best protection is coverage by clothing and shade. I store in the car long pants, an SPF light jacket, hat, socks and runners, just incase I am caught somewhere outside in the sun and wearing a t-shirt or sandles.

                        I take transit to work, I always have an spf wrap, a hat.  I never leave myself unprepared to cover up if I end up outside longer than I expected. I think this is thee most improtant lifestyle change I have made, its ideal to wear long pants and long sleeves etc. most of the time, but I will wear shorts, tank tops, sun dresses etc., on summer days, I just don't want to get caught even walking when taking transit with uncovered skin.      

                        I wear gloves at mostly all times, I wear light winter gloves in the spring and fall and wear the SPF nude colour gloves during summer when outside. I keep a spare pair in the car and one in my bag/purse.

                        For swimming outdoors, I wear a sleevelss wetsuit with an spf swimshirt underneath, wetsuits with arms are not very comfortable to swim in. For hot summer days and when boating, I wear spf swimshirt with long sleeves and a high neck and the leggings. I wear thin socks and water shoes. I have not found any spf socks. I avoid outdoor swimming pools.

                        For cycling, I go early morning or late afternoon, I wear full leggings. or bike shorts with leg sleeves, I wear a long sleeved very light loose windbreaker jacket with only a sports bra underneath, it has zip off sleaves which I take off on a warn day once i stop under the shade of a tree or cabana. On really hot summer days, I don't go biking. For a helmut, I use mountain biking helmuts, they have larger visors.

                        For footwear, I threw out all strappy sandles and flipflops, I keep my bare feet in the summer inside a shoe made of breathable fabric with as much coverage over the tops of my feet as i can find. I own a large selection of hats and have fun with them. I'm going to get a sun umbrella for ths summer to use when commuting.

                        My backyard has been reconfigured to maximize shaded areas for seating, I love my yard and sitting outside to read and listen to the birds. It all matters and every little bit helps I believe. I am an avid outsoors person. I won't change my life, but all these small steps to minimize exposure hopefully mitigates the risk. I have been sun safe all my life, but have amped it up over time and since they have invented the spf clothes added that in as well. I'm not sure if it will help, but I'm sure it won't hurt, I spend a lot of time outside, but my skin won't see the sun. 

                        BillMFl
                        Participant

                          There is an excellent brand of stylish protective clothing from SOLUMBRA. It is specifically designed for active outdoor folks. Not cheap but very good quality. I have used their clothing for boating, beaching, etc. I belive they provide an SPF of 100. Having had two mms and dozens of basal and squamous skin cancers I mostly limit my outdoor activities to morning and evening. I confess to not liking to smear  on sunscreen goop and only use it if out during peak sun hours. Google Solumbra and ask for their free catalog. And no, I don't get paid for suggesting them. There are other active sportswear lines but I personally think they are one of the best.

                            messedmelanocytes
                            Participant

                              I looked up SOLUMBRA and I like what they have to offer. Thanks so much for the tip!  

                            ccco
                            Participant

                              Hi Katie- I just noticed that you had sent me a message  but it found it's way into my junk folder. Sounds like we went/are going throught the same process. Got diagnosed with .3 melanoma a couple of years ago. Totally freaked me out but it became very clear that so many others have much more advanced melanomas. Still-when it happens to you it really makes you reevaluate. I had a wide excision (unfortunately I had a allergic reaction to the sutures) so it was not exactly pleasant. But it has healed (like 4 inch scar on shoulder) and saw derm every 3 mos and now every 6. I see that you are in Bend, me too! I sunscreen up daily and actually have added some hats and clothing with SPF. One thing that I had a trouble accepting is that docs felt that nothing else was needed-I thought there should be more testing, more aggressive action – but apparently not. They always ask about swollen glands and any weight loss (If only!) and the 6 mo. check up. Check out Eddie Bauer outlet in town-they have some long sleeve shirts that have spf.  Hope all goes smoothly for you!

                               

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