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January 5, 2013 at 1:47 pm #20907axbxlParticipant
Sorry for my english but I am french speaking. I was born in Brussels/Belgium, and still live there.
I am a man, single without children, 40 years old.
+/- 4 months ago I went to my dermatologue for a little problem at my foot. She saw everything ( no big problem ) and afterwoods she asked me : “do you have something else to say or to show?”. I answered : “well maybe yes. As I see you now, maybe you could check at my back, I have there a brown something ( +/- 6 cm long and 4 cm width ) for maybe 20 years now. I think I always have had this anyway, since I am a little boy but I think it became quiet big these last times”.
She saw it and…I heard nothing else from her during some seconds. She came back with a colleague and after having checked it, she said” you have to came back in 2 hours, it has to be removed today!!”
One week later, the results from her at her office : melanoma 2,4mm, clarck IV, 3 mitoses/mm². She already had taken a rendez-vous for me the same day at an hospital in Brussels, with a melanoma specialist.
End november, another larger excision in my back and they have also taken 2 lymphatic nodes under my left arm.
One with micro metastases.
Now I have another chirurgical operation this Wednesday morning ( 9th of January ) and he will remove at least 15 lymphatic nodes, and all of them will be examined.
Untill now it’s ok I mean my moral, but as it become closer ( the 9th of January ) I become more anxious…
Afterwoods, I’ll be checked each 3 months during two years.
I would be so glad to have testymonies from people who have, or still live, the same as me.
Thank you so much and do not forget…Jesus says so many beautifful things as for example : ” this is not yout battle, it is Mine”. Thank you so much to Him being in my life since I was born.
AxelJanuary 5, 2013 at 9:24 pm #58367washoegalParticipant
Sorry you are here. You are very close to where I was almost two years ago. I had 2 nodes positive with micro metastasis. The good news is I am still here and still have No Evidence of Disease (NED). After surgery the only thing I have done is try to make healthy choices, stay out of the sun, follow up with the Derm and the Onc and have Scans every 6 months. Along the road there has been a couple of bumps but nothing serious.
It sounds like you are in good hands. Very best wishes.January 5, 2013 at 10:14 pm #58368Catherine PooleKeymaster
I have sent your post to our sister organization that is in Brussels and hopefully you will hear from them. I can tell you that Professor Bart Neyns is highly recommended in Brussels for his expertise and his compassion. I believe you may be able to find MAGE A3 trials in Europe and that may be useful for you. I would ask about that. I hope the stress eases for you and you will stay in touch with us here!January 6, 2013 at 4:19 pm #58369LinnyParticipant Hello, Axel.
I’m sorry you’ve had to join us. It’s normal to feel very scared initially. What helped me was hearing positive stories from others. I told all my close friends, who told other friends and just happened to hear back about two other individuals who’d had melanoma travel to the lymph nodes and they were still alive and well after 10+ years. Of course, I’m nowhere near there just yet because I was diagnosed two years ago. But I have only 8 more years to go.
I had one lymph node affected and the melanoma was visible without a microscope. A well known American newscaster, Sam Donaldson was diagnosed with a similar melanoma to mine. You can google him to read his story. He also is alive and well.
I was diagnosed two years ago and so far I still have NED. I have a CAT scan coming up at the end of this month and I pray that everything will still be clean.January 6, 2013 at 5:13 pm #58370patiParticipant
Your english is fine!
I am sorry you are going through this, I also live in brussels and have melanoma. f you want we can exchange over email or even on the phone so that I can share living with melanoma in Brussels.
The best melanoma oncologist is indeed Prof Bart Neyns (UZ brussel), I get all my surgeries done with Dr DeLathouwer at CHIREC, and my dermatologist is at Erasme Veronique del Marmol is also extremely knowledgeable, Dr Neyns consults there on thursdays too). For now you need to wait to see the results of the surgery as you may indeed have no more involvement hopefully and then maybe the best thing is to discuss some potential adjuvent immunotherapies. Basically in Belgium you may need to navigate across hospitals and people to have access to what you may need
Who is your Dr and your surgeon?
you can email me on
BestJanuary 6, 2013 at 10:33 pm #58371momofmanynancyParticipant
Our situations sound similar.
I was diagnosed with melanoma (1.76mm- Clark’s level 4, 4/mm sq. mitotic rate) after a mole on my mid lower back grew and had irregular borders.
They did wide lesion excision on it, and tested lymph with dye to see where the lymph from that back area went (sentinel Mode Biopsy). It fed to both axilla, so he took 1 node from right arm pit and 2 nodes from left arm pit. There was micromets on left side in 1 of the nodes..
I went for another surgery where he removed 10 more lymph nodes from left ~ they were all neg. since that time, they have biopsied many moles and found me to have 2 more melanomas, but these were caught early, stage 1 and had wide lesion removal on those.
I have had PET scans every 3 months. I am 18 months NED! Yeah!
The cycle of anticipation before scans has become part of life, hasn’t gotten better, but the rejoicing does give me something to think about when I fear.
Best of luck to you in your journey – i was sure I would have recurred by now, and find my confidence returning between scans. It helps to talk to people who have been there.January 7, 2013 at 10:48 am #58372axbxlParticipant
@ catherine poole
Thank you for your answer but I already have a good specialist, I’m very glad with him.January 7, 2013 at 10:49 pm #58373Catherine PooleKeymaster
I would still take Pati up on her offer for assistance…she is quite expert at navigating your country’s system.January 8, 2013 at 3:13 am #58374XCguyParticipant Axel,
Sorry that you have to join us, but you won’t find a better bunch to commiserate with anywhere else on the web.
I, too, have a Stage III diagnosis. It has been almost 2.5 years since I had the Sentinel Node biopsy and a complete lymphadenectomy in my left armpit. They removed 32 nodes, of which one had micromets. Since then I have had 3 PET scans and one CAT scan, all negative.
I did not do any treatment, as all they could offer me was Interferon. I did not do that because there was not enough evidence that it would have much, if any, benefit. I did, however, make drastic changes to my diet and have been on a regime of various immune system boosting supplements and foods. I don’t know if this has helped, but it surely has not hurt. In fact, I have not had so much as a cold in the past 2.5 years.
The other thing which has helped is prayer. Remember the words given to St. Faustina: “Jesus, I trust in you.” Also, the Memorare has great power and I would highly recommend this.
I cannot say that everything is great. I still am overcome with dread and worry at times. Life is now lived from one scan to the next, with an enormous crescendo of dread in the weeks prior to a scan. One thing melanoma gives you is an appreciation of the small joys in life and perhaps a little more patience to deal with all the irritations.
If you qualify for a clinical trial with a promising new therapy, do it. You usually only have a limited amount of time after the lymph node removal surgery during which you will qualify for a trial, so don’t put off looking into it.
Stay in touch with us, and best wishes for good health for many years to come.
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