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  • #22208
    Ozgirlinuk
    Participant

    Can someone help me here, I got my SLNB histology yesterday from the surgeon and the dermopathologist used the EORTC protocol to examine it- which means that they only look at parts of it after bisecting it and taking five slices for staining rather than the complete ‘bread slicing’ I was expecting (and what the surgeon initially explained). Now I feel like the comfort I got from a negative SLNB has vanished. What’s the equivalent protocol in the US, has anyone got any advice on this please?

    #65642
    Catherine Poole
    Keymaster

    The sentinel node was clear and that is the most important thing to keep in mind. It is the node that would catch the metastatic cells. How deep was your primary?

    #65643
    Ozgirlinuk
    Participant

    Hi Catherine, you are a godsend, initial tumour was 1.6mm, nodular with mitosis less than 1. Can’t believe how the stress of this whole situation seems to come and go in waves…… I post on here when I’m feeling at my lowest and then have moments when I’m at peace with the situation as I know worry won’t change what happens- at least not in a good way!

    #65644
    HeatFire
    Participant

    Its an odd situation when cancer so often carelessly are thought and talked about as a death sentence and then suddenly they leave your outside in the cold with only revisitis with skinchecks planned.

    Maybe more of those, like me that survive without harsh treatments etc should speak up more often and try to reach out to others in the same situation.

    It seems pretty universal that the healthcare systems dont really care much about the mental stress even from having stage 1 or 2 melanoma.

    when i got back my SNB results i didnt feel happy or sad.. i just felt like it didnt matter..

    Didnt change anything more then my % risk of dieing according to statistics.

    It just feels like this thing will never be “done”.

    #65645
    Ozgirlinuk
    Participant

    Thank you Heatfire, I feel like I’ll never be carefree again, I’ll be a different person, constantly feeling threatened by an insidious internal threat. It’s quite a torment! I’m very glad that your follow up has been uneventful to date and hope very much that it continues!

    #65646
    tbeau
    Participant

    Hi Ozgirl

    I am a Stage 1b with nodular melanoma diagnosed over 2 years ago. I run hot and cold with fear that I will have a recurrence. It does get easier with time but those thoughts don’t really go away for me. I also come on this forum for support and I believe that helps a lot. People don’t really seem to understand the emotional toll it takes on you unless they too have had cancer. That’s why I come here. If there was a support group in my area, I would consider joining it to help myself and to help people who are newly diagnosed. However, coming to this forum is easier in many ways because you can remain anonymous. Take care.

    #65647
    Ozgirlinuk
    Participant

    Hey tbeau,

    Thanks, a bit of a pep talk from someone who walked the newly diagnosed path before you is certainly helpful. This forum is a mixed blessing as people who don’t progress probably drift away. Thank you for continuing to post and not progressing.

    I suppose my biggest fears come from the fact that I trained as a nurse 25years ago in Queensland, Australia, where I witnessed first hand the devastation of this disease- and I find it hard to reconcile those experiences with all the new treatments and hope they bring.

    The derm told me my mole was fine, it didn’t appear to have changed, I asked her to remove it because I thought it was a bit ugly……hopefully my vanity has saved my life? Certainly prolonged it I imagine, time will tell.

    Best,

    Gwenhwyfar

    #65648
    HeatFire
    Participant

    Happy to see that tbeau havent got any reccurence.

    Think we got the diagnosis around the same time.

    Been over 2 years since my first visit to the doctors.

    Sorry for my bad english I so rarly type or talk english.

    Ozgirlinuk having that mole have probably saved you.

    I love how some docs says “it looks fine” and think it shouldnt be removed..

    the doc i first visit said mine didnt look like Melanoma but thought it should be removed just to be sure.

    BTW. I hope your hospital treats you better then mine.. they actully lost the path report from my last mole they removed. and this is one of the best places in sweden to be at, Karolinska Universitet Sjukhuset.

    Got a letter saying it was “normal”. Next appointment when the doc was going to tell me about it he couldnt find the report in my journal.

    And the first plastic surgeon cut alot more then he said he would.. He also failed too cut the translanted skin right, so it died. 2nd surgeon was much much better. She is an amazing doctor and the skin she prepared looked like a net instead of wet toiletpaper with 2 holes in it.

    And the respons i got when whining about it was “we removed so much skin to be safe”. Guess i should think about that when my now 2 year old chronic pain feels bad.

    #65649
    tbeau
    Participant

    Hello Heatfire and Ozgirl:

    My melanoma was discovered completely by accident. I was having 3 raised bumps removed from my leg by a plastic surgeon. I had a fourth bright pink spot on the same leg. The plastic surgeon tried to explain to me that the bumps would grow back and that the scar from the removal could be larger than the bumps. I convinced him to take them off strictly for cosmetic reasons and he decided to remove the bright pink one too. It was the bright pink one that came back as melanoma. He has been the only doctor that I have dealt with who has been consistently professional and genuinely concerned. Every other doctor that I have encountered over the last 2 years has been challenging to deal with in some way. Someone was looking out for me to prompt me to go to a plastic surgeon to have 3 little bumps removed that have been on my leg for years. And all three have grown back.

    Heatfire – I’m sorry to hear about your negative encounters with doctors and hospitals. I’m glad to know that you too have not had a recurrence.

    Ozgirl -I’m right there with you – I think it was my vanity that may have saved my life too. I’m sure things will get better for you as time goes on. You’ll even have days go by where you do not think of melanoma.

    I guess those are my thoughts for tonight. Thank you for listening.

    #65650
    Ozgirlinuk
    Participant

    Roll on the day when I don’t think about melabloodynoma!!

    #65651
    Gordknight
    Participant

    Im in the same boat as all of you as far as worry goes. I have a stage1a melanoma in my neck that is actually getting wide extracted tomorrow. The thing that worries me most is I know if they come back saying Im all clear, all I am going to do is wait for the other shoe to drop.

    I know its dumb to live that way… in constant fear of something that may or may not happen. And after reading so many horror stories of stage 1a recurrence turning into stage IV online (I know its dumb to read those) the 97% 15-20 year survival rate is of little comfort to me.

    I too don’t think Ill be carefree again.

    #65652
    Ozgirlinuk
    Participant

    Gordknight good luck with the WLE tomorrow, I don’t know what to say about your worries as I too have spent too much time (ridiculously late nights) on the internet…. Let’s hope we can post a big sigh of relief in 10 years time hey?

    #65653
    Gordknight
    Participant

    I agree my friend. Lets hope both of us can live easier as time passes. We can’t let the diagnosis control us. Its good to be vigilant and keep an eye out for changes in our skin or nodes.. but its bad to obsess over it. If we are worrying all the time thats kind of like having the illness anyway. I know its easier said than done, but we gotta do our best.

    Also I have decided that if Im NED still in 5-10-15-20 years.. Im gonna keep an eye out on these forums. Newly diagnosed people need hopeful stories among all the horror ones.

    #65654
    TreeFrog
    Participant

    Great, Gord! It’s always reassuring to hear from at least SOME people who have had no further issues, as is the case for the great majority of Stage Ones.

    Since I know this site is monitored for quality and accuracy, I have even “been brave” and kept an eye on the Stage III and IV parts of the Forum for four years now. Although there have been many losses, I have seen a steady increase in the number of Stage III and IV contributors to the forum who are many years out from becoming that stage – with the help of revolutionary new treatments that are beginning to make metastatic mel. into a chronic condition rather than a death sentence. Things are FAR different than four years ago – a big change in a short time.

    So, that’s just to give you peace of mind (and me, too) that EVEN IF we had issues down the road, treatments are getting increasingly effective and decreasingly scary (no more chemo – things are moving towards immune modulators and other very sophisticated, targetted treatments).

    Also, you’ll find that you just tend to worry less as time goes on. We all obsess in the beginning. You’ll likely become less preoccupied. But I’ve found that facts have helped me keep everything in perspective – hence the paragraph above. I got the facts here, and it quelled my urge to scan the internet. That was a big relief in itself.

    Best wishes,

    ~Wendy

    #65655
    Catherine Poole
    Keymaster

    Well said Wendy, indeed we are in another era now of melanoma treatment. The empowered patient who has gathered much knowledge lives a longer, better life. As a 25 year veteran, who couldn’t have a SLNB because it wasn’t invented, I am quite thankful to be here to help patients get the proper knowledge. I also know there are other things that can take us out and I really do try to enjoy each moment in the day.

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