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Comments on my relationship with melanoma

Forums General Melanoma Community Comments on my relationship with melanoma

  • Post
    Wilfred
    Participant

      Here is something I wrote for family and friends a month ago. I posted it on facebook and was going to send it out via email; I changed my mind about the email. I know that posting it here will be like preaching to the choir, but maybe you would like to copy it and put it somewhere else. I feel better about where I am even though I don't really know what is around the corner. I am glad I found the MRF group, you are teaching me things I did not know. Thank you.

      Here is something I wrote for family and friends a month ago. I posted it on facebook and was going to send it out via email; I changed my mind about the email. I know that posting it here will be like preaching to the choir, but maybe you would like to copy it and put it somewhere else. I feel better about where I am even though I don't really know what is around the corner. I am glad I found the MRF group, you are teaching me things I did not know. Thank you.

      One week ago today, at Sinai Hospital in Baltimore, Dr Didolkar, Chief of Surgical Oncology, removed a melanoma from my right ear – FOR THE FIFTH TIME. It's not his fault, it's mine. I grew up in the Bahamas, got sunburned all the time; nowI pay the piper. It started in October of 1998 when I went to Dr Ronald Sweren, Dermatologist, to have him look at a mole that had started to break open. This mole had been removed back in the late 1970's. He took a biopsy and it came out positive for melanoma. Dr Didolkar removed it. Nothing more until the summer of 2007, then Christmas, 2007, then December 2009, then last week. I have had radiation therapy twice. Less than 2 months ago, I went to Dr Didolkar for my regular six month checkup. Nothing. The same day, I went to Dr Sweren for my regular six month whole body exam. Nothing. Three weeks ago I complained to Miss Ann that I was waking up in the middle of the night because my ear hurt. I asked her to look at it. She saw a red splotch and a large bump. We went to see Dr Sweren. He said he thought it was Chondrodermatitis Nodularis Helicis, an inflamation/infection of the ear cartilage. BUT, he said, given my history, a biopsy was needed. Because of the location, he asked me to go to Dr Byrne, a facial, reconstructive surgeon, and get him to do the biopsy. Dr Byrne saw me in 15 minutes and did the biopsy. Two days later, Miss Ann and I went to Canada to open the cottage for the year. I was not concerned about my ear, I had a case of Chondrodermatitis Nodularis Helicis (sounds cool, right?) not melanoma. A week after the biopsy, I called the doctor for the results. melanoma!! AGAIN!!! What the hell is going on!!!!! Why me????? This can't be!!!!!!!! I could not finish the conversation. Miss Ann was nearby and could tell that it was not good. I cried. A lot. I couldn't think properly. I was pissed off. I was upset. I was scared. That's the problem with melanoma, even with early detection there is no guarantee that where you see it is the only place where it is. I called Dr Didolkar's office and they asked me to come straight from Canada to Baltimore. We stayed two more days in Canada and left. We spent the night with my brother, Vernon and his wife, Lucy. They were very loving and supportive, as was Miss Ann, I was scared. Macho me scared of something you could hardly see. Dr Didolkar had seen the biopsy report. They arranged for all the normal tests: blood work the next day, PET/CT scan, I arranged the MRI. Surgery was scheduled for the following Thursday. We went back to NJ for a few days and then back to Maryland. Surgery was moved up to Wednesday. On Wednesday morning, I went to Sinai at 9:00am for a nuclear medicine procedure where they inject a nuclear substance directly into the melanoma and then tract it to the sentinal lymph nodes for that area. There is NO procedure more painful than this. The technicians hate to do it because they know how much it hurts. Then off to PreOp. The stick an IV in the back of your hand, you get interviewed/checked by doctors, nurses, anesthesiologists, surgical nurses, the surgeon. Then you wait. Did I mention that I was scared? Well I was, even though I had been there, done that four times before. Finally, three hours late, (surgery schedules are fluid) the Nurse Anesthetist came and gave me me a little "cocktail" and I was out of it. So, here I am, sitting here writing this for you, and me, I suppose. Yesterday afternoon, Lisa, Dr Didolkar's Nurse Practitioner, called to say that the pathology report on the lymph nodes was negative (that's a good thing in doctor speak); and that the path report on the section of my ear that was removed showed that there were clear margins. That means that there was no sign of melanoma on the edges of the piece. That is also good news. On Monday, I go back to Baltimore to see Dr Didolkar and discuss what comes next. Radiation? Some other therapy? Who knows? Do I feel better; am I comfortable? NO!!!! I'm still pissed off; I'm still scared. My ear looks like hell – the top of it is not connected to the ear lobe. Did I mention that I'm scared? Do I have good doctors, nurses, technicians, a loving/supportive wife, children, family and friends? Yes!!!!!! I am still scared. How many more times will this happen? Dr Didolkar says I don't own the record; I feel sorry for the poor bastard that does, but I am selfish – why me – I am scared. The attached video is very good. Look at it, show it to your children, talk about it, make them wear sunscreen (at least 30 SPF), share it – and these comments if you want – on facebook or by email to your family and friends. Breast Cancer is a serious threat, but not the only one. Did I mention I'm scared? I am.

    Viewing 11 reply threads
    • Replies
        Carol Taylor
        Participant

          I know, Wilfred. We know, friend. You speak well for all of us. (Yes, even for Miss Positive Me).  I can't ease your fears, but I can hold you up in prayer, if you don't mind.

          Lord, in Your mercy, You know Wilfred's heart and fears, you know the storm that rages around and in him.  Help him focus on what he needs to do to bring the beast under control and not let fear reign. Let him feel Your presence and help him take a bite out of melanoma as melanoma seeks to bite him. Amen.

          Grace and peace to you friend,

          Carol

          Carol Taylor
          Participant

            I know, Wilfred. We know, friend. You speak well for all of us. (Yes, even for Miss Positive Me).  I can't ease your fears, but I can hold you up in prayer, if you don't mind.

            Lord, in Your mercy, You know Wilfred's heart and fears, you know the storm that rages around and in him.  Help him focus on what he needs to do to bring the beast under control and not let fear reign. Let him feel Your presence and help him take a bite out of melanoma as melanoma seeks to bite him. Amen.

            Grace and peace to you friend,

            Carol

            jag
            Participant

              Wilfred, 

              sorry to hear your story, that sounds pretty rough, you are already dying if you let fear take control of your life and keep you down though.  Fear and stress are often times the worst part of this disease.  Hope can really change that if you let it. Try and find something to take your mind off of all of this and take it one day at a time.  For all you know this melanoma could be your last.

              God Bless

              John

              jag
              Participant

                Wilfred, 

                sorry to hear your story, that sounds pretty rough, you are already dying if you let fear take control of your life and keep you down though.  Fear and stress are often times the worst part of this disease.  Hope can really change that if you let it. Try and find something to take your mind off of all of this and take it one day at a time.  For all you know this melanoma could be your last.

                God Bless

                John

                pattylynn
                Participant

                  I just read your e mail and I am in a similar spot, becuase I have a melanoma on my outer ear. Of course this is all very new to me. I joined the chat room becuase I wanted to find others who have had this on their ear and find out what their experience has been.

                  Five times! OMG!  I cannot imagine how scared and frustrated you must be!

                  I just got diagnosed, but by reading the path report (I am an RN) it looks like an aggresive type of melanoma. I am scheduled to have the 2 step surgery starting next week. They will do the lymph node maping and take out the part of the ear and then a week later put it all back together after they get a results from pathology.

                  Questions: Was your thing on your ear on the top outer rim? How did they reconstruct your ear? What do they do when they just want a biopsy of the lymph node? Do they just do it with a needle or do they open your neck up?

                  Please give me an update on how you are doing. 

                  I have great family support and live near a really good university medical center, but I am also scared  !!!!! No one ever in my family has had cancer and I have never known the "C" word to end up on my chart. And I am not a sun worshipper at all. 

                  pattylynn
                  Participant

                    I just read your e mail and I am in a similar spot, becuase I have a melanoma on my outer ear. Of course this is all very new to me. I joined the chat room becuase I wanted to find others who have had this on their ear and find out what their experience has been.

                    Five times! OMG!  I cannot imagine how scared and frustrated you must be!

                    I just got diagnosed, but by reading the path report (I am an RN) it looks like an aggresive type of melanoma. I am scheduled to have the 2 step surgery starting next week. They will do the lymph node maping and take out the part of the ear and then a week later put it all back together after they get a results from pathology.

                    Questions: Was your thing on your ear on the top outer rim? How did they reconstruct your ear? What do they do when they just want a biopsy of the lymph node? Do they just do it with a needle or do they open your neck up?

                    Please give me an update on how you are doing. 

                    I have great family support and live near a really good university medical center, but I am also scared  !!!!! No one ever in my family has had cancer and I have never known the "C" word to end up on my chart. And I am not a sun worshipper at all. 

                      NancyGM
                      Participant

                        Hi, I had my primary tumor on the rim of my left ear, spilling into the inside, 8 years ago yesterday, stage II with ulceration. A pie shades wedge was removed and my ear now has a fairly normal appearance- just smaller than the other one. The two ends were attached where the wedge was removed and where the ear attaches to the head was snipped so the ear wouldn't rotate in.

                        It is very normal to feel scared, but please know there are those of us on this forum who who have had no evidence of disease for years after treatment for a primary and even after treatment for metastasis. Very best of luck to you.

                        NancyGM
                        Participant

                          Hi, I had my primary tumor on the rim of my left ear, spilling into the inside, 8 years ago yesterday, stage II with ulceration. A pie shades wedge was removed and my ear now has a fairly normal appearance- just smaller than the other one. The two ends were attached where the wedge was removed and where the ear attaches to the head was snipped so the ear wouldn't rotate in.

                          It is very normal to feel scared, but please know there are those of us on this forum who who have had no evidence of disease for years after treatment for a primary and even after treatment for metastasis. Very best of luck to you.

                          pattylynn
                          Participant

                            Wow, I have been hoping to talk to someone who is going through what I am going to face and I was so glad to get your post!

                            Mine is nodular, Stage II with ulceration and bleeding. What you describe is what they plan on doing on my ear for reconstruction. They will keep the wound open for a week until they get the results from the lymph nodes and also in case they need to remove more of the ear. 

                            I'm glad I'm not a bald man who could not hide the ear with hair! 

                            Of course my main concern is that it has not spread into the lymphs. Did it with you? Have you had any recurrences?  Please tell me how your recovery was?  Any bits of advice or tips? Do you have any photos you could send directly to my e mail accrount? 

                            Thank you so so much for the support!  I will be writing you again, if that's okay. 

                            pattylynn
                            Participant

                              Wow, I have been hoping to talk to someone who is going through what I am going to face and I was so glad to get your post!

                              Mine is nodular, Stage II with ulceration and bleeding. What you describe is what they plan on doing on my ear for reconstruction. They will keep the wound open for a week until they get the results from the lymph nodes and also in case they need to remove more of the ear. 

                              I'm glad I'm not a bald man who could not hide the ear with hair! 

                              Of course my main concern is that it has not spread into the lymphs. Did it with you? Have you had any recurrences?  Please tell me how your recovery was?  Any bits of advice or tips? Do you have any photos you could send directly to my e mail accrount? 

                              Thank you so so much for the support!  I will be writing you again, if that's okay. 

                            Nicky
                            Participant

                              Hi Wilfred, thank you so much for sharing your story.  I have some understanding of where you are coming from.  I am also a long term survivor, 28 years of skin cancers with the past 11 years three episodes of melanoma and radiation therapy.  I have been crying all weekend too because after six years I have just been diagnosed with another primary melanoma.  You think that you have beaten it given the time period and then it just comes back to slap you in the face.  It doesn't get easier each time, it just psychologically plays with your head.  Like me, thank goodness you have had a great medical team behind you who monitors  every skin change.    I wish you all the best, you've managed to fight it this long, just keep doing what you do best and beat it again. I'll be with you all the way.

                              Nicky
                              Participant

                                Hi Wilfred, thank you so much for sharing your story.  I have some understanding of where you are coming from.  I am also a long term survivor, 28 years of skin cancers with the past 11 years three episodes of melanoma and radiation therapy.  I have been crying all weekend too because after six years I have just been diagnosed with another primary melanoma.  You think that you have beaten it given the time period and then it just comes back to slap you in the face.  It doesn't get easier each time, it just psychologically plays with your head.  Like me, thank goodness you have had a great medical team behind you who monitors  every skin change.    I wish you all the best, you've managed to fight it this long, just keep doing what you do best and beat it again. I'll be with you all the way.

                                ChrisTheWilsonZoo
                                Participant

                                  Thank you, Wilfred.  You put into words something most of us are afraid to.  I've never told my family how scared this disease makes me feel.  I'm 18 months post surgery, so I'm still at that point where I expect it to return, but hope it doesn't.  Every new lump or bump is a recurrence until proven otherwise, and scanxiety is still high, no matter how much I tell myself not to worry.  The fear has improved, and will continue to improve the longer I go without a recurrence.  But it is still there, and I don't think it ever truly goes away for any of us.  We just get better at compartmentalizing it – we put it away until the next scan/oncologist appointment.

                                  I've tried to discuss my concerns with my husband.  Let's just say his response was exactly what I expected, and I've never mentioned it again.  His way of dealing with things does not include talking about might-could-be's.  He said if I was that worried about it, maybe I should see someone.  End of discussion.

                                  I think for many of us, this board becomes our outlet for our fears, worries, and concerns.  It's our source of education, inspiration, and sounding board.  It's also where we go when we just need to "let it all hang out".  I know if I ever really need a shoulder to lean on, I can post on here, and I'll receive all the positive reinforcement and advice I could ever need. 

                                  BTW, LOVE the CAG on your shoulder :-)

                                  ChrisTheWilsonZoo
                                  Participant

                                    Thank you, Wilfred.  You put into words something most of us are afraid to.  I've never told my family how scared this disease makes me feel.  I'm 18 months post surgery, so I'm still at that point where I expect it to return, but hope it doesn't.  Every new lump or bump is a recurrence until proven otherwise, and scanxiety is still high, no matter how much I tell myself not to worry.  The fear has improved, and will continue to improve the longer I go without a recurrence.  But it is still there, and I don't think it ever truly goes away for any of us.  We just get better at compartmentalizing it – we put it away until the next scan/oncologist appointment.

                                    I've tried to discuss my concerns with my husband.  Let's just say his response was exactly what I expected, and I've never mentioned it again.  His way of dealing with things does not include talking about might-could-be's.  He said if I was that worried about it, maybe I should see someone.  End of discussion.

                                    I think for many of us, this board becomes our outlet for our fears, worries, and concerns.  It's our source of education, inspiration, and sounding board.  It's also where we go when we just need to "let it all hang out".  I know if I ever really need a shoulder to lean on, I can post on here, and I'll receive all the positive reinforcement and advice I could ever need. 

                                    BTW, LOVE the CAG on your shoulder :-)

                                    soniagodwin
                                    Guest

                                      [email protected]
                                      Hi Dear
                                      How are you today, I hope all is well. My name is  miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don't let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response
                                      ([email protected])

                                      soniagodwin
                                      Guest

                                        [email protected]
                                        Hi Dear
                                        How are you today, I hope all is well. My name is  miss sonia, I am very good looking perfect body figure Girl kind,sincere and trusted, God fearing.And,I saw your advert was delighted to contact you, I hope you will be the true loving, honest and caring Man that I have been looking for, And I have something special to tell you about me, So please contact me directly through my private email address at : ([email protected]) so that I can also send my picture directly to you. Remember that love has,no colour barrier, religious,nationality or distance barrier, but love matters most,my happiness,my joy all is in your hands,please don't let me down ok. I will never stop loving you, regards i kiss you, I will be waiting for your response
                                        ([email protected])

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