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almostalice

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      almostalice
      Participant
        With three primaries it might be worth seeking the test, if only to have more info at hand if needed. I understand that hesitancy, it was almost 10 years ago when I talked to professor Bishop in the UK and I declined the testing. I was planning the move to the states, it was that 4th primary that made me get the test here at Vanderbilt.
        almostalice
        Participant
          Yikes, I guess if I ever had to have treatment I’d be confined to bed.

          My TSH hit 56 (not 5.6) during Swine Flu. Been on Levothyroxine ever since 2009.

          almostalice
          Participant
            Found this thread on search.

            My mother was dx’d just a few months after I tested positive for CDKN2A with MCR1. That test came about 17 years after my first primary. Between 2003 my first primary and my mom’s first, I’ve had 3 other primaries and about 12 to 15 biopsies (lost count). Most of them come up Atypical.

            It’s pretty easy to pick out a Melanoma from an Atypical because i dont have a tonne of moles (considering most photos of FAMMM) … it’s the itch. If it’s itching then it’s going to punch biopsy.

            They were not expecting me to come up CDKN2A+ mainly because I don’t have a lot of moles. The moles I do have are all baby Melanoma’s in the making and we take an if in dobut cut it out approach. I usually have a gap of 7 years between primary happenings and events of excision.

            My deepest breslow has been 6mm ulcerated. Consistent with CDKN2A I get Nodular or SSM and thankfully more SSM than Nodular.

            Mostly on my legs, my more sun exposed areas shall we say turn up less primaries.

            almostalice
            Participant
              I find that photographing a worry can help me file it away. It’s a positive action that can help you feel in control. If in a couple of years something pops up, you have that record and trend to show.

              The dermatologist is seeing a snapshot on the day of the appointment. I recently found a stage 1 mole and at the appointment I had two instax photos dated a few months apart.

              almostalice
              Participant
                Thank you for the reply, so sorry for my late reply.  This is good information to have and I can keep a check on my counts at regular physical bloodwork.
                almostalice
                Participant
                  I would say you know your moles the best and it’s always good to take the opportunity to take another one out of the picture. For me it was the itching that was usually the sign. So I know itching isn’t always recognized as a sign, in terms of changes without color there could be other characteristics. You’ll know your skin better than anyone.
                  almostalice
                  Participant
                    This is great! I would say the biggest impact I’ve seen is delay in WLE and SLNB surgery. Also my dermatology clinic had scheduled telehealth visits in the first months of the pandemic, but then called me for in person after realizing routine skin checks are harder over telehealth.

                    There could be a way for providers to push skin surveillance apps to their patients instead of telehealth visits.

                    almostalice
                    Participant
                      Excellent, it’s always encouraging to see long term members, though I’d rather we all weren’t part of this club.

                      I’m 16 years on from my Stage 2C, at the age of 24 lurking here and then posting was very helpful.

                      To a better 2021

                      almostalice
                      Participant
                        Danielle, that’s right. Out of the 12 to 15 moles I have had removed 3 were staged melanoma and 1 insitu. Some of them look like they could be something and turn out to be fine.
                        almostalice
                        Participant
                          The Breslow depth is very encouraging. Wishing you a great recovery from the surgery.
                          almostalice
                          Participant
                            Wow what are the chances? Vanderbilt?

                            I was dx in 2004 in the UK, 1mm SSM and 6mm Ulcerated Nodular and denied or rather talked out of SLNB for both. Passed between pillar and post for quite some time before landing at the QE in Birmingham. Where we trundled along taking out future baddies and they all came back atypical.

                            Until … Third primary in 2011 insitu still in the UK, and met with genetics some time later in Leeds at the time decided against testing. I was getting to be a good advocate for what was and wasn’t melanoma for my body.

                            Settled in Nashville 2014, fourth primary in 2018 with SLNB oked, came up negative and well at this point decided on genetic testing and was in network for Vandy. Positive for FAMMM. I actually turned up at Vanderbilt and said hey I got a primary for you guys.

                            An older next of kin now with first primary.

                            Allllll that to say. Man this thing is never done, it’s with us forever. I can’t imagine how it feels to have a primary site come back for more in the same area.

                            There must be some anxiety that comes with that even if they are early stage and thin.

                            almostalice
                            Participant
                              Anxiety over test results is the worst. At the same time if they were punch biopsies or regular cuts, there’s the constant reminder right there.

                              Know that you did the right thing and that you’re taking care of business. It’s hard to feel in control and what I used to do was focus on my hobbies.

                              I’ve had ones where the derm was more concerned than I was and I was like well ok if you must take it but I think it’s fine and I’ve had ones that had me on the phone checking in for results too early.

                              almostalice
                              Participant
                                Thankful to have one of the best patient forums going strong after all these years.
                                almostalice
                                Participant
                                  Sending my best wishes
                                  almostalice
                                  Participant
                                    Gosh this sounds awful.

                                    I’ve had no treatment for melanoma other than surgery. A out 5 years after my diagnosis I got severely fatigued and freaked out. My TSH was 56 … (Not 5.6). I had to stop working and go on disability.

                                    Diagnosed hashimotos. Trust me I know all too well about hypothyroidism, my resting heart rate dropped to below 60BPM. Stick with the thyroxine if you go hypo.

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