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Looking for advice

Posted By
Resistancethrou...
3/3/2020 9:13am
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Replies: 12

Hello friends,

first of all, i want to apologize for typing and grammar errors, as i am no native speaker. I am living in Germany and work as a teacher (32 years old). I am married with a wonderful wife. I came across this site recently and i have the feeling that the people participating here do a tremendous job in supporting and giving knowledge to each other.

I am looking for support as well. Just a little medical background information: I was diagnosed almost 4 years ago with testicle cancer, but it was caught early and i was able to move on. I have many moles and a light skin, brown hair but a red colored beard. I am now seeking advice how to handle some events that took place a year ago. I would be grateful for any thoughts because at the moment, i feel like falling free.

A year ago, i found a mole on my right leg was kind of itchy. I went to the GP (was too lazy to go to a dermatologist and wait there etc.) and thought he would send me to a surgeon, but he told me he could take care of that. I had moles removed before and new it was no big deal, so i was happy with that. In the time between the first visit at the GP and the day of surgery, at the edge of the mole a bump emerged. It just grew out there within one week (or even less, who knows). It looked in fact like a bubble / blister but when i took a photo of it, i saw that it was indeed a tiny nodule in the exact same color as the edge of the mole. It was fairly small (maybe 2 mm in diameter). On the photo i took, it is even possible to see some really small vessels in it.

Some days later the mole was excised by the GP. During the surgery, he said that he would not send all of the material to the histology as "if its bad, all of it will be bad". I was just overwhelmed by this statement and kind of suppressed any thoughts about the whole thing. The (partial?) biopsy was send to a normal pathology. There, they just cut 2 slides from it and noted that it was a completely benign, perfectly normal nevus. It was not noted if he had achieved clear margins, but this seems unlikely: I moved on and noticed ca. 5 months later that there was coloration coming back at the scar.

I got this removed by a surgeon and it came back from a dermatopathology as a recurrence of a dysplastic nevus (still beningn). At this point, i wanted the first biopsy looked at by a proper dermapathology and had it reviewed again. They looked at it and i was told it was a in fact a dysplastic nevus, but of course they could only look at the 2 slides the previous pathology had cut out of the biopsy.

Since them, i can not get my mind to rest. I see the possibility (am almost convinced) of a missed melanoma and i just don´t know how to comfort myself, as there is no way how i could examine this any further. I went to several dermatologists, but they can not help me. I am just told i "should not be too concerned" but i was not told why i should not be worried at all.

I tried to research everything about misdiagnosed and in consequence "inadequately" removed melanomas (will there be metastasis or will there be local recurrence more likely) but i was not able to find much information, which seems to be logical as maybe there are many unknown cases. As well, i tried to gather information about benign nodules arriving fast at the edge of a dysplastic mole but i was not able to find anything in that direction.
I am now at a point where i don`t see the point in trying to push for further information, as it seems to be a question of fate / chance anyways, as it is often enough in life.

I would be really, really grateful for any advice regarding how to cope with the current situation. What can i do concretely? What should i think to comfort myself?

Thank you very much for reading this. I wish everybody here the best from the bottom of my heard.

Felix

tkoss - (3/3/2020 - 6:07pm)

since your in the German medical system I don't know how it works but.....its seems that you can simply do one of the downstream tests, which they would normally do if the mole turned out to be malignant.

first would be a cranial MRI along with a Petscan. They would show tumors. More invasive is the sentinel node biopsy, usually done when the mole biopsy shows melanoma cells that have likely spread. Margins, thickness, and the like.. It would tell you if there was melanoma and that it has spread. Even if the mole has been removed. Melanoma most likely goes from mole to a nearby lymph node.

hopefully others can give you more thorough answers.

Hi tkoss,

thank you for your answer. The health system here is ok, but if you are not diagnosed with anything that requests further going tests or even surgery, they won't do that in general. In my case, i will have a normal CT of abdomen and chest (at the end of the year) because of my past testicle cancer and i think i will be able to get a cranial MRI as well because of that. To get those scans done on a regular basis for several years will be difficult to achieve, but i will try and find a solution.
PET and surgery won't be options, i think the insurance won`t back that without diagnosis.

Thank you very much again for taking the time and helping me. I wish you the best!

Felix

tkoss - (3/4/2020 - 10:18am)

I don' t know others experience but after 1st mole found and biopsied, I have had a least 2 more show up. in less than year. so be on the look out for other moles and make sure they are tested.

tkoss - (3/4/2020 - 10:15am)

I forgot what another poster mentioned.

if you find a lump under your armpit, in other words a nearby lymph node, they can ultrascound it to see if it looks like a cancerous tumor. only biopsy will reveal if melanoma.

having gone from no noticeable tumor to stage 3c in less than 6 months I would encourage you to do all you can to get a definite answer. delayed diagnosis is the enemy

Thank you again for giving me advice. Regarding the other moles, i try to have an eye on them and i go to the dermatologist on regular basis. May i ask you how you noticed your recurrence?

I try to be awake and notice any changes within my body but it is a small difference between caution and panic as it seems to me.

Have a good day tkoss!

tkoss - (3/5/2020 - 9:25am)

I will tell you my experience in the hopes it is enlightening. Ater 60 years of living I went to a Derm for my once in a lifetime mole exam. I only went because my mother went religiously and frankly my insurance covered it, I live in Texas with lots of sun, I can read, and so , well dad gum , why not just confirm that skin cancer is for the weak.

of course the Derm immediately found a questionable mole, on my lower back and which I would have never seen. it was stage 1 and he removed it. On a follow up visit 6 months later he found another that was stage 3c. Honestly I do not know if he simply overlooked second mole. It seems highly coincidental that I get 2 cancerous moles , 6 months apart, and of course after 62 years of living.

but if I think the Derm is honest, then the 2nd mole went from undistinguished to stage 3c in under 6 month. after WLE and infusion of nivo for about 4 weeks, a return to derm found a 3rd suspect mole but biopsy didn't show melanoma.

my experience: time is critical, moles appear in clusters in location and time. and luck is awfully important.

Thank you again for sharing you experience. I hope you are doing well now and wish you the best. It helped me to speak out here.

Tsvetochka - (3/4/2020 - 5:32am)

I'm afraid my experience won't be too encouraging. I had a mole removed in 2015. They said it was benign and didn't save any of the tissue. In 2019 I was diagnosed with Stage 4 melanoma, "no known primary," but all the doctors I've seen assume the primary was that mole. I didn't even think about melanoma after I was told the mole was benign, so I'm thankful for those years when I didn't worry. But...you're already thinking about it. (Smart.) Like tkoss said, maybe you could set up scans? My tumours weren't found until I was in severe pain, then they did ultrasounds and CT scans, followed by biopsies. Maybe a yearly scan would be a good idea for you.

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

Hi Tsvetochka,

thank you for your comment and sharing your experience with me. In fact, i think you did really well not dwelling on the past things. I would be so happy to have peace of mind for sure. It helps not at all. As you can read in my reply to tkoss, i think i can get scans, but i don`t know for how long. But i will try to get them for sure.

After several months, i figured out for myself that i won`t be able to know what happened there right now. So i think i have to look forward. Any thoughts how to handle this beside to get scans (talking about the psychological aspect)?
I am trying to get my mind to rest but it is really hard. If you guys have any mental strategies in the bag regarding that topic i would be really thankful.

Thank you very much for your thoughts and help Tsvetochka. Wishing you the best.

MelMel - (3/5/2020 - 2:02am)

You can read my profile. I have hundreds of moles. Back in 1997 one on my upper back was suspicious and was punch biopsied by a dermatologist. I was told it was apparently normal but that I would be better off removing it. I was sent to a plastic surgeon because it would "leave a large scar due to it's location". I still have a huge scar. Fast forward to summer of 2018. I had horrible migranes and nausea/extreme vomitting on a weekly basis. First I thought, I had an ulcer or gall bladder issue. Gastroenterologist did a colonoscopy and endonoscopy since I never had either done. When they came up short he sent me in for an abdominal ultrasound. Voila! Liver abnormalities were seen. He was convinced they were hemangiomas but sent me for an abdominal MRI. More masses were found in my lungs and thorasic lymph nodes. Immediately the next day, I saw an oncologist who was certain I had breast cancer and immediately sent me for a liver biopsy which confirmed stage IV melanoma. I went to dermatologist who believed 1997 is too long for it to be the primary but my present melanoma oncologist believes it could very well have been the primary. Basically the moral of the story is that all you can do is be vigilant and aware so you can ensure to be regularly seen by an expert dermatologist. Through my own experience no two are the same so find a good one. You are in a way blessed that because of your other cancer you will be tested regardless. This will keep an internal eye on possible melanoma too. I went from stage I to stage IV in 21 years. I am a deep believer that extraordinary stress has a role in this. In 1997, I moved my family and it was extremely stressful since I just underwent a divorce. Just prior to 2018 I moved countries, starting from scratch on all fronts as well as having four extremely close people die within a span of two years (one being my best friend, the other my father....both from cancer). This type of extreme and unrelentless stress from multiple sides obviously took a toll on my immune system. This was God's way of making sure I changed my life. Up to that point I literally worked myself to death being a single parent to three kids. I do not know your circumstances however try to minimize stress. This is crucial. Do not become a statistic. Although you have no control on a melanoma diagnosis you do control how you live your life and how you react to things which happen in it. You are a survivor and learn to treasure each and every day. It should be quality and not quantity. Get your regular scans, see an experienced dermatologist and have a great family Dr. In the meantime, be thankful for all the good in your life, and enjoy it by finding what matters and brings you happiness. Join clubs, take classes of interest, garden, do art, yoga, sport, travel, meet new people, write, read, do whatever appeals to you. Life is very short so make every day count. No need to dwell on something that maybe will never occur. My "few" words of wisdom.
Above all else, remember YOU ARE A SURVIVOR!!!
Best wishes,
Melanie

Hi Melanie,

thank you very much for sharing your experience and your thoughts with me. I hope and am convinced that good deeds come back on the one or the other way. So prepare for that.
The stress you mentioned is as well a factor i see regarding illness of any kind. I suffered from severe stress before i was diagnosed with testicle cancer (had a hard time at work) and i think that may have played a role. Having figured that out, i try to keep calm in my current situation as it does not help at all to panic but i think of being probably ill when going waking up, going to bed and pretty much in between. Keeping positive is a real challenge for me right now. Interestingly, when i was diagnosed with testicle cancer i was just calm. Can not say why, but i did not panic at all. It seems i lost this attitude due to the feeling that something with my mole was done wrong and i can not change that.

Thank you again for your advice, i will try to act like you said. In fact, it already helped me to be able to speak out here. I wish you the best! Have a good day,

Felix