Rollercoaster Time

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    • #12782
      Anonymous
      Inactive

      I had what I thought was a mole on my back and my kids noticed it was very dark. I got them to take a picture and after a few minutes on google, I was about 95% sure I had nodular melanoma due to a textbook like photo they took of my back. My biggest fear is that my kids and wife said that it has been there for a long time, just looks different. Immediately called my new doctor that I have never even met before, after my old one moved away. Took 3 days to get an appointment. She took one look and said, “that needs to go!”. The next Friday I was in to see the dermatologist. She took one look and said, “that needs to go!”. Feeling pretty accurate about my self diagnosis right about this time. She said it was just a bit too large for her to excise so she says that she will ask the surgeon for a favour. 5 minutes later she comes back to say the surgeon had to leave but she will see me first thing Monday morning. Researched nodular melanoma excision and got myself prepared for what was going to be next. Monday morning I had the excision done and it seemed too quick for what I researched. The next day I had my wife take a photo and was surprised how small the excision was. I was expecting a wide excision not a 2mm margin. Back in the next week for results. vertical growth pattern-yes, ulceration-yes, vertical height 2.5mm, mitotic rate-8, regression- no, perineural invasion-no, margins-clear, and distant to margins-2mm. Diagnosis-Invasive Melanoma. Questioned the surgeon about the narrow margin that was excised but was told that was the norm for an unknown. Now I am sitting patiently waiting for a call from Sunnybrook to see what the future entails.

    • #12783
      Anonymous
      Inactive

      Hi Peter

      Same happen to me! I jad a mole as a child it changed. I have two same side of family have melanoma.

      I see dermatologist he said its nothing months later grow back again said i cant touch it sent me to plastic surgeron

      Removed with a 0.3 clear margin.

      Invasive 4.7 mm mototic rate 7 not ulercated stage 3a/b

      Finally after hell from one specialist tell me go straight to treatment and neck dissection is not going to cure you and its not theraputic.

      Referred to Torontp Sunnybrook

      My surgeron is Dr D Enekepekis great Dr.

      So while having first meeting found palpable node same side fine needle aspiration done in office and came pos for cancer.

      Wide local Excision amd neck dissection done took 40 nodes out and 4 cancer but intact dodnt break open to lymph vessel.

      I dont regret neck dissection and we skipped SNB as of how deep my tumor was and went straight to WLe and Neck dissection to save on more and more surgeries

      Well my surgery was nov 4th i finished 25 rounds radiation and 2 dose interferon and couldnt deal with toxity. I entered a trial for stage 3 interferon vs pembro (keytruda) i pulled stage 3 drug interferon.

      So i choose wait watch as we cant do any trials unless i resected or reoccrence or stage 3 as i have past my 98 days from surgery as well 2 dose interferon.

      So now march brain mri showed 4mm lesion and we are watchimg and repeat mri may 25. I having ct scan repeat which was clear in Dec 17 but u never know melanoma is sneaky.

      I also now 5 weeks ago have a node under my left ear same side as surgery. It was big by the time i seen sirgeron it got smaller and he did fine needle and came back suggestive but not guarrentee melanoma sp we dod test last week and see them tomorrow at sunmybrook dr and dr perella to discuss surgery if fine needle results dont show results. We need definitive answer before next opitions. So basically i know he wont get results it too small so another neck surgery remove more nodes and of pos i can enter into new trial with new drugs or i be happy its not a reoccurence.

      Peter

      Be your own avocate take charge of you and your drs and health. I had alot of slip ups and not happy. I started my journey in oshawa where i live and now moving back to sunnybrook

      Your gut feelimgs are usually right. I have proved drs wrong so many times.

      I very pleased with drs at sunnybrook but always ask questions dont leave without a plan.

      Im om facebook under Lisa A McCann in my profile pic its a girl with glasses red lipstick add me i will interoduce you tp a few groups and help you as much as i can through the journey.

      Best of luck my friend

    • #13586
      Anonymous
      Inactive

      Hi peter
      I don’t think that’s right that the surgeon did a small margin excision. I was dx with superficial spreading malenoma insuitu 2 wks ago with clear margins and my surgeon recommended to take out another cm all around.. my scar is pretty big now. But I don’t care about it.. I’m just hoping that it’ll all out. Waiting for the results. I think you need to find a surgeon that would do a wide excision as soon as possible ( to confirm clear margins)
      Also I got in for a full body checkup at women’s college in less than a wk.. so I hope u don’t need to wait to long for you appointment.. once they see malenoma on your chart the see u pretty quickly!
      Take care.
      Julia

    • #13587
      Anonymous
      Inactive

      I had a WLE and SLNB done on May 24th. They went with 2cm margins around. They had to do an island flap to close it up due to the little amount of skin on my back. Just got the staples and stitches removed along with results yesterday, and both the excision and SLN was clear. Good luck with your results.

    • #13588
      Anonymous
      Inactive

      Thanks for the update pereter! I’m glad it’s all clear 🙂

    • #13591
      Annette CyrAnnette Cyr
      Participant

      Hi there – yes, all these appointments take time and you do want them to do it right. Some have unnecessary delays. But the first step is always the biopsy, and that is the only way they can be sure that it is melanoma. A first biopsy, they will never do more than they have to – in case it isn’t melanoma! Once confirmed, there is a standard protocol for the amount of tissue around the primary that must be taken, and this is dictated by the depth of the tumour. SO, it sounds like they have followed a proper process with you Peter. So pleased for you that the SLNB was clear – that is good news. Let us know what they are recommending further, if anything.

    • #13592
      Anonymous
      Inactive

      You right Anitra! They did, I just misunderstood and thought that he ment that he’s dr did not recommend a wide excision.

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