MRF-Logo2019-Horizontal-RGB
New to this
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

New to this

› Forums › General Melanoma Community › New to this

  • Post
    • August 15, 2016 at 8:04 pm
    s Mom
    Participant

      My doctor told me on June 13/16 that I had melanoma. Stage 1b. I have since had it excised with 1.4cm and 2cm margins on the side and under, respectively. They say it's good news. Now my job is to be sun smart, do regular skin checks and try to figure out how to live my life with melanoma.

      I am not a sun worshipper, but do love to be out enjoying activities like gardening, hiking, photography and kiteboarding. The latter is the easiest since I am completely covered in a full wetsuit, booties, gloves and helmet.

      Since getting this diagnosis I have been afraid of the sun. I wake up in the morning and my first thought is "what can I wear that is safe and not too hot?"

      I am weeks away from retiring. My husband has been patiently waiting for me to do so. We are all set to carry out our long prepared plans to travel in our RV through the southwestern US national parks and open areas. Now I am scared to do what we have worked so long to do. We are looking into having window film put on the RV windows to screen out UVA/UVB rays. Hopefull that will help and give me a safe shade place.

      My question is could someone please, please tell me about clothes? I have spent more money on SPF clothing than on clothing in years.  Does everything have to be rated SPF 50+ to protect me? Plus, where can you buy SPF clothes besides on line?  Does anyone know if the Sunguard Laundry additive really works?

      There must be a way to do this, but I don't feel at all confident about how. I don't want to make mistakes, due to my ignorance that will cost me my life. Any help will be deeply appreciated.

       

    Viewing 11 reply threads
    • Replies
        • August 15, 2016 at 9:25 pm
        btcedarr
        Participant

          I was also diagnosed 1b with a negative SLNB. My doctors have told me to live my life, just be smart.  I have not bought spf clothing. I spend time outside and just make sure I have applied good sunscreen. I spent 3 weeks in Jamaica with my doctor's blessing. When not strolling the beach, swimming, snorkeling, etc. I sat in the shade. I even sat on the beach for lunch, lol!  Now, I know some people may not be comfortable with that, but I lather on the sunscreen, don't spend hours on end in the sun and my doc says that is fine. When I do a hike, I now wear a hat!

          • August 15, 2016 at 9:25 pm
          btcedarr
          Participant

            I was also diagnosed 1b with a negative SLNB. My doctors have told me to live my life, just be smart.  I have not bought spf clothing. I spend time outside and just make sure I have applied good sunscreen. I spent 3 weeks in Jamaica with my doctor's blessing. When not strolling the beach, swimming, snorkeling, etc. I sat in the shade. I even sat on the beach for lunch, lol!  Now, I know some people may not be comfortable with that, but I lather on the sunscreen, don't spend hours on end in the sun and my doc says that is fine. When I do a hike, I now wear a hat!

              • August 16, 2016 at 12:12 am
              s Mom
              Participant

                Oh. 

                I guess I can't get my head around it the way you have. I'm happy for you that you've been able to adjust.

                I think part of my problem is that I've worked in a hospital for over 25 years and have seen enough to know that things can get complicated fast. 

                I hope someone will respond with information about the clothes issue. I've read many of the posts on this site and in awe at what people are dealing with. Perhaps my question is too trivial compared to others. But I am hopeful to learn as much as I can about sun protection so to more comfortably get out there and live my life. 

                Thanks for your response. Hopefully I will be able to be at ease eventually.

                • August 16, 2016 at 12:12 am
                s Mom
                Participant

                  Oh. 

                  I guess I can't get my head around it the way you have. I'm happy for you that you've been able to adjust.

                  I think part of my problem is that I've worked in a hospital for over 25 years and have seen enough to know that things can get complicated fast. 

                  I hope someone will respond with information about the clothes issue. I've read many of the posts on this site and in awe at what people are dealing with. Perhaps my question is too trivial compared to others. But I am hopeful to learn as much as I can about sun protection so to more comfortably get out there and live my life. 

                  Thanks for your response. Hopefully I will be able to be at ease eventually.

                  • August 16, 2016 at 12:12 am
                  s Mom
                  Participant

                    Oh. 

                    I guess I can't get my head around it the way you have. I'm happy for you that you've been able to adjust.

                    I think part of my problem is that I've worked in a hospital for over 25 years and have seen enough to know that things can get complicated fast. 

                    I hope someone will respond with information about the clothes issue. I've read many of the posts on this site and in awe at what people are dealing with. Perhaps my question is too trivial compared to others. But I am hopeful to learn as much as I can about sun protection so to more comfortably get out there and live my life. 

                    Thanks for your response. Hopefully I will be able to be at ease eventually.

                    • August 16, 2016 at 1:41 am
                    btcedarr
                    Participant

                      Yes, I hope someone has that information for you. I too work in the medical field, so I know what you mean. Please remember it was caught early. That's important. 

                      • August 16, 2016 at 1:41 am
                      btcedarr
                      Participant

                        Yes, I hope someone has that information for you. I too work in the medical field, so I know what you mean. Please remember it was caught early. That's important. 

                        • August 16, 2016 at 1:41 am
                        btcedarr
                        Participant

                          Yes, I hope someone has that information for you. I too work in the medical field, so I know what you mean. Please remember it was caught early. That's important. 

                        • August 15, 2016 at 9:25 pm
                        btcedarr
                        Participant

                          I was also diagnosed 1b with a negative SLNB. My doctors have told me to live my life, just be smart.  I have not bought spf clothing. I spend time outside and just make sure I have applied good sunscreen. I spent 3 weeks in Jamaica with my doctor's blessing. When not strolling the beach, swimming, snorkeling, etc. I sat in the shade. I even sat on the beach for lunch, lol!  Now, I know some people may not be comfortable with that, but I lather on the sunscreen, don't spend hours on end in the sun and my doc says that is fine. When I do a hike, I now wear a hat!

                          • August 16, 2016 at 1:46 am
                          Janner
                          Participant

                            Remember, if you hide from life now, melanoma wins.  Sun exposure is implicated in new primaries and the other skin cancers, not a recurrence.  Live life NOW!

                            • August 16, 2016 at 1:46 am
                            Janner
                            Participant

                              Remember, if you hide from life now, melanoma wins.  Sun exposure is implicated in new primaries and the other skin cancers, not a recurrence.  Live life NOW!

                                • August 16, 2016 at 4:48 pm
                                s Mom
                                Participant

                                  Good advice, which I will take. But plan to get out there wisely.

                                  Thanks for the response.

                                  • August 16, 2016 at 4:48 pm
                                  s Mom
                                  Participant

                                    Good advice, which I will take. But plan to get out there wisely.

                                    Thanks for the response.

                                    • August 16, 2016 at 4:48 pm
                                    s Mom
                                    Participant

                                      Good advice, which I will take. But plan to get out there wisely.

                                      Thanks for the response.

                                    • August 16, 2016 at 1:46 am
                                    Janner
                                    Participant

                                      Remember, if you hide from life now, melanoma wins.  Sun exposure is implicated in new primaries and the other skin cancers, not a recurrence.  Live life NOW!

                                      • August 16, 2016 at 2:11 am
                                      Polymath
                                      Participant

                                        Hello Anon,

                                        I assume you have discovered Coolibar as a good resource for SPF rated clothing.  My initial treatment was a drug that produced photo-sensitivity that frankly you cannot imagine.  I too loaded up on long sleeve t-shirts, began wearing hats, and as noted faithfully used sunscreen.  Now, later in treatment, on different drugs, I remain a bit sun-shy, but don't react like I did before.  Frankly, the damage has already been done in our youth's and getting some sun now, in moderation, has more benefits than living in a cave.  As for additional clothing sources, where you may be able to walk-into a store, I would suggest trying surf shops and possibly "Outdoor" apparel brands. I do think the widest variety of clothes, especially for our age, will indeed be online.

                                        Gary

                                        • August 16, 2016 at 2:11 am
                                        Polymath
                                        Participant

                                          Hello Anon,

                                          I assume you have discovered Coolibar as a good resource for SPF rated clothing.  My initial treatment was a drug that produced photo-sensitivity that frankly you cannot imagine.  I too loaded up on long sleeve t-shirts, began wearing hats, and as noted faithfully used sunscreen.  Now, later in treatment, on different drugs, I remain a bit sun-shy, but don't react like I did before.  Frankly, the damage has already been done in our youth's and getting some sun now, in moderation, has more benefits than living in a cave.  As for additional clothing sources, where you may be able to walk-into a store, I would suggest trying surf shops and possibly "Outdoor" apparel brands. I do think the widest variety of clothes, especially for our age, will indeed be online.

                                          Gary

                                            • August 16, 2016 at 4:53 pm
                                            s Mom
                                            Participant

                                              Thanks for the response.

                                              Yes, indeed I have discovered Coolibar.

                                              Good point for me to keep in mind that it is damage done in youth. Being mindful on how to moderate sun exposure from here on is doable. I have around surf shops when kiting and will see what they have that will help. My doctor just pointed out that she has never gotten a tan through clothes, assuming the clothes aren't mesh.

                                              Perhaps I will just take a big, deep breath and ditch any mesh like clothes in my closet.

                                              Thanks for your resonse.

                                              Hope your situation is going well.

                                               

                                              • August 16, 2016 at 4:53 pm
                                              s Mom
                                              Participant

                                                Thanks for the response.

                                                Yes, indeed I have discovered Coolibar.

                                                Good point for me to keep in mind that it is damage done in youth. Being mindful on how to moderate sun exposure from here on is doable. I have around surf shops when kiting and will see what they have that will help. My doctor just pointed out that she has never gotten a tan through clothes, assuming the clothes aren't mesh.

                                                Perhaps I will just take a big, deep breath and ditch any mesh like clothes in my closet.

                                                Thanks for your resonse.

                                                Hope your situation is going well.

                                                 

                                                • August 16, 2016 at 4:53 pm
                                                s Mom
                                                Participant

                                                  Thanks for the response.

                                                  Yes, indeed I have discovered Coolibar.

                                                  Good point for me to keep in mind that it is damage done in youth. Being mindful on how to moderate sun exposure from here on is doable. I have around surf shops when kiting and will see what they have that will help. My doctor just pointed out that she has never gotten a tan through clothes, assuming the clothes aren't mesh.

                                                  Perhaps I will just take a big, deep breath and ditch any mesh like clothes in my closet.

                                                  Thanks for your resonse.

                                                  Hope your situation is going well.

                                                   

                                                • August 16, 2016 at 2:11 am
                                                Polymath
                                                Participant

                                                  Hello Anon,

                                                  I assume you have discovered Coolibar as a good resource for SPF rated clothing.  My initial treatment was a drug that produced photo-sensitivity that frankly you cannot imagine.  I too loaded up on long sleeve t-shirts, began wearing hats, and as noted faithfully used sunscreen.  Now, later in treatment, on different drugs, I remain a bit sun-shy, but don't react like I did before.  Frankly, the damage has already been done in our youth's and getting some sun now, in moderation, has more benefits than living in a cave.  As for additional clothing sources, where you may be able to walk-into a store, I would suggest trying surf shops and possibly "Outdoor" apparel brands. I do think the widest variety of clothes, especially for our age, will indeed be online.

                                                  Gary

                                                  • August 26, 2016 at 2:50 am
                                                  brewgirl68
                                                  Participant

                                                    Hi, there – I'm Stage 3c, dx'd last February. I don't do the special SPF clothing, just use good sunscreen and reapply often. I'm a sun lover that lives in the midwest (West Michigan) and I'm not willing to live in long sleeve shirts during our season of sunny summer days. Plus, that stuff is expensive! I still wear shorts, tank tops and bathing suits, but now my favorite accessory is sunscreen 🙂

                                                    I hope you are able to enjoy your retirement and not let this beast take over!

                                                    Very best wishes to you <3

                                                    Sheila

                                                    • August 26, 2016 at 2:50 am
                                                    brewgirl68
                                                    Participant

                                                      Hi, there – I'm Stage 3c, dx'd last February. I don't do the special SPF clothing, just use good sunscreen and reapply often. I'm a sun lover that lives in the midwest (West Michigan) and I'm not willing to live in long sleeve shirts during our season of sunny summer days. Plus, that stuff is expensive! I still wear shorts, tank tops and bathing suits, but now my favorite accessory is sunscreen 🙂

                                                      I hope you are able to enjoy your retirement and not let this beast take over!

                                                      Very best wishes to you <3

                                                      Sheila

                                                      • August 26, 2016 at 2:50 am
                                                      brewgirl68
                                                      Participant

                                                        Hi, there – I'm Stage 3c, dx'd last February. I don't do the special SPF clothing, just use good sunscreen and reapply often. I'm a sun lover that lives in the midwest (West Michigan) and I'm not willing to live in long sleeve shirts during our season of sunny summer days. Plus, that stuff is expensive! I still wear shorts, tank tops and bathing suits, but now my favorite accessory is sunscreen 🙂

                                                        I hope you are able to enjoy your retirement and not let this beast take over!

                                                        Very best wishes to you <3

                                                        Sheila

                                                    Viewing 11 reply threads
                                                    • You must be logged in to reply to this topic.
                                                    About the MRF Patient Forum

                                                    The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                    The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                    Popular Topics