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Ellie_82

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      Ellie_82
      Participant
        A friend of a friend had melanoma in situ on the foot. Her podiatrist pointed out the “mole” on the foot to her 18 months before she actually had it removed. And at the time of removal it still was in situ.

        Some melanomas may stay in the in situ stage for years, even decades. Others may progress within weeks. It really depends on the individual tumor. And yes, given enough time all in situ melanomas will progress to the invasive stage. The question is, how much time is needed. The person may die of something else before their in situ melanoma progresses. Of course it needs to be treated. But then it is gone. The odds of recurrence are super slim.

         

        Ellie_82
        Participant
          Here is the lay explanation: pathologist saw a traumatized mole. Sometimes when moles are traumatized, they may look odd. Because it looks a little odd, he or she recommended to completely cut it out. That’s really all there is to it.
          Ellie_82
          Participant
            Hi Mandy,

            I think that you have already heard this before, but stage 1A melanoma is, by definition, low risk. If we knew what made a stage 1A melanoma high risk, it won’t be a stage 1A anymore. These higher risk melanomas would be grouped and upstaged to a higher stage. That’s the whole point of staging, to provide information about prognosis, including the risk of recurrence. For someone with a stage 1A, I believe the 10 year survival rate is about 95%, and that includes people who died of other causes, such as a heart attack. I think the melanoma specific survival, ie your risk of dying from melanoma in the next 10 years, is negligibly small, maybe 1-2% or less. Some thin melanomas do come back after 15, 20, or even 25 years, and that is somewhere in the 5% to 10% range (rough estimate), but we do not know which ones would. All things considered, these odds are very favorable. If that makes you feel any better, there are so many things that can go wrong over that many years, that it is near pointless to worry about the minuscule risk of stage 1A melanoma recurrence.

            The best thing you can do right now is not only keep your skin checks, but be vigilant about any changes on your skin. Know your moles, and know if any of them starts changing. I have made the high resolution full body pictures about 4 years ago and they help a lot. I go back and check them and am reassured that the mole I am worried about has not grown or changed. I only had atypical moles so far and not melanoma, thanks Goodness, but if I do develop melanoma in the future I will definitely keep updating the pictures every few years to make sure I catch anything early on. And don’t forget to check the areas such as your scalp, soles of feet and also female parts and buttocks/ano-rectal area. Physicians often overlook these areas and it is up to us to check them and make sure there is nothing suspicious. Doing so may also give you a feeling of empowerment (as it did for me). Instead of passively relying on a dermatologist, I am being proactive and taking steps to protect my own health. No dermatologist knows my body better than I am, so it is the best thing I can do to protect myself. And it helps with anxiety too.

            All the best to you and hugs!

            Ellie_82
            Participant
              Hi Jewel, your husband may theoretically have an increased reaction to the flu shot while on immunotherapy, but imagine how bad would it be if he actually gets the flu? Of the 2, the flu shot seems to be a much “lesser evil”. In fact, if he just had his first opdivo infusion today, it may be worth getting the shot asap, before his immune system has fully responded to the treatment.
              Ellie_82
              Participant
                Sharon, melanoma can travel anywhere, although is more likely to be found near the primary site. My first question would be, is he sure it is a lymph node. If you google lymph node maps, you see where the lymph nodes are located in the body. I may be wrong but I dont recall that the back of the head has lymph nodes.

                My second question would be, is he sick at all? If he got sick then it’s not surprising that his nodes would be swollen. I would give it a week or so to see if it improves.

                Ellie_82
                Participant
                  Hi Affected, here us what the current National Comprehensive Cancer Network (NCCN) guidelines say about radiation therapy for loco regional melanoma. Based on these guidelines, your doc is spot on with the dose.

                  Regional Disease
                  • Adjuvant Therapy for High-Risk Resected Regional Disease
                  Adjuvant nodal basin RT is associated with reduced lymph node field recurrence in patients at high risk for regional recurrence, but is
                  not associated with improved relapse-free survival (RFS) or overall survival (OS).7,12,13 The benefit of radiation therapy must be weighed
                  against potential toxicities, such as lymphedema (limb) or oropharyngeal complications. The impact of these potential toxicities should be
                  considered in the context of newer adjuvant systemic options.
                  Risk factors for regional recurrence include gross and/or histologic extracapsular extension of melanoma in clinically (macroscopic)
                  involved node(s), ≥1 parotid node, ≥2 cervical or axillary nodes, ≥3 inguinofemoral nodes, ≥3 cm cervical or axillary node, and/or ≥4 cm
                  inguinofemoral node.12,14,15
                  Dosing Regimens: Optimal regional nodal doses are not well established, but potential regimens include:a,16
                  ◊ 50–66 Gy in 25–33 fractions over 5–7 weeks17,18
                  ◊ 48 Gy in 20 fractions over 4 weeks12
                  ◊ 30 Gy in 5 fractions over 2 weeks (twice per week or every other day)11

                  Ellie_82
                  Participant
                    Hi Rebekah,

                    I am usually a big proponent of a quick biopsy, but in this case, what you are telling us sounds a little off to me. A podiatrist (???) taking nearly 1/3 off of your foot area for a biopsy? I do not think that a podiatrist is qualified to do a biopsy at all (I may be wrong, but my gut feeling is that it’s not the best idea), let alone taking such a huge area. If it were me, I would have wanted a board certified dermatologist doing this procedure. A melanoma specialist would be great, of course, but they usually have long waits for those not yet diagnosed, if they take you at all. A big cancer center near me won’t even take you in for a biopsy unless you already have a melanoma diagnosis. Depending where you live, there may be dermatologists specializing in melanoma, but again, these may be booked for a long time. If you can find one – great, if not, I think that a reputable general dermatologist would do, especially if they are affiliated with an academic institution (but not required). All the best!

                    Ellie_82
                    Participant
                      This is wonderful news, Mike. That trial looks interesting. It is open label, meaning that they know which drugs you receive. I wonder if you can request to be in the group that receives all 3. That’s what I would have wanted lol 🙂 Anyway, I am wishing you all the best!
                      Ellie_82
                      Participant
                        HEY OP, I looked at your picture and to me, it looks benign. Keep in mind that I am not an MD though. I’d say that basically, you have 2 choices at this point:

                        1. Go have it checked ASAP; or
                        2. Measure it and take pictures and watch it for a few weeks for changes

                        You know, melanoma (especially nodular melanoma) will be growing, changing. If you don’t see any changes to it within a few weeks or a few months, then it is probably nothing. However, both choices above are valid and it depends more on your level of comfort. Good luck my friend, and keep us posted!

                        Ellie_82
                        Participant
                          Mandy, in the UK, dont you have yearly skin checks included as a part of normal preventive care and paid for by insurance? In the US, any insurance covers it. Especially with the diagnosis of melanoma, every professional cancer organization recommends yearly skin checks by a healthcare professional, preferably dermatologist, for life. It is hard for me to believe that in the UK this essential preventive measure is not covered.

                          As Bubbles have said, there are some risky features of early melanomas that make it more likely to come back, but these are by definition not present in a stage 1A. If they were, you wouldnt be considered a stage 1A. Stage 1A is invasive melanoma, but no high risk features. I think that statistically speaking, you are more likely to develop a new unrelated melanoma than having this one come back. That is why it is important to do self checks as well, to be vigilant. Early stage melanomas often do not look suspicious, at least initially, but if you know that this small mole wasnt there 3 months ago, you can intervene early. It is not rocket science. If you see something that wasnt there before, or if an existing mole starts looking different, have it checked out.

                          In general though, the older we become, the more threats to our health there are. I think that it is probably more important to focus on healthy living in general rather than dwell on a tiny risk of melanoma coming back. I know anxiety, I know that it sucks, but I also know that it lies. It will do anything to keep you anxious. Do not listen to it. Enjoy your good life and being a mommy. If anxiety doesn’t let go, perhaps it is worth having some therapy? I did a few years back and it helped immensely. Eventually I was even able to get off zoloft and live my life. I hope you can do too. Hugs!

                          Ellie_82
                          Participant
                            Sun exposure is only a risk factor for melanoma (one of many) and a relatively weak one at that. Multiple blistering sunburns only increase the risk of melanoma about 2-fold, compared it with lifetime smoking and lung cancer something like 30+ fold. It is known very well that sun exposure alone is not enough to cause melanoma. Other factors are needed. In fact, weak immune system is probably a much bigger risk factor for melanoma than sun exposure. Does it mean that people suddenly need to start exposing themselves to lots of sun? Not really. But it’s also not worth beating yourself up for some past sun exposures, while it is likely that sun played only a minor part if any at all.

                            A little trivia for your guys. Which occupation has the highest risk for melanoma??? Unless you know the answer, you probably would never guess. Airline pilots, 11 times increased risk 😉

                            Ellie_82
                            Participant
                              Bubbles, you know a lot about thyroid 😉 I have autoimmune thyroiditis (Hashimoto disease) from genetics likely. I’m on thyroid replacement (hypo), but I know that people with Hashi can be anything, hyper or hypo or they can fluctuate between these. Some go from hyper to hypo so much that they need to have their thyroid removed. So what i am getting to is, isnt immunotherapy attacking thyroid sort of through the same mechanisms as the autoimmune diseases? If so then indeed he can go from hyper to hypo and back. Not the best scenario because the hyper state may be dangerous (or it may not be, we dont know). So how do you think docs handle that?
                              Ellie_82
                              Participant
                                TSH of .03 is NOT good. Could be really dangerous. There are things they can do to manage hyper, but a lot of them are irreversible because they kill thyroid cells. So he might end up on levothyroxine supplement till the rest of his life. I would imagine they probably would want to see good evidence that nivo actually works for him before they go ahead. This is a harder situation that hypo. If it’s that, I hope it resolves by itself and he is able to restart nivo. Please keep us posted!
                                Ellie_82
                                Participant
                                  A friend of mine had biopsy of her liver lesion (turned out to be lung cancer) and she was able to go home the same day. She was in a very good health otherwise though. So depending on where the internal mets are, it may not be as bad as it sounds. Good idea to talk to your onc about it! He/she would know best!
                                  Ellie_82
                                  Participant
                                    Hi Mark, LN-144 seems to be a promising drug. Is this trial you are thinking about is NCT02360579? I looked it up on clinicaltrials.gov and here is the eligibility criteria for tumor tissue:

                                    At least one resectable lesion (or aggregate of lesions resected) of a minimum 1.5 cm in diameter post-resection to generate TIL; surgical removal with minimal morbidity (defined as hospital stay for 3 days or less).

                                    1.5cm doesn’t seem to be that much. If you are concerned, I suggest you discuss this with your oncologist the sooner the better.

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