How can I help?

[Robynfine]

I have been in this battle since 2009 and I feel I am pretty well educated in Melanoma. I want to be here to help in anyway. If you have questions or concerns let me know. Whether it's sun safety, relationships, support, whatever. I can try and help you.

[Atemple24]

Hi! I think you may be able to help me. I was just diagnosed at the end of May with stage 1a. I had a WLE on June 6 got clear margins. The drs that I am seeing seem pleased and not concerned whatsoever. I do like these drs, dermatologist and surgeon and feel like I can trust them. So I will follow up with the dermatologist every 3 months. So while they've moved on I'm still here so worried and full of questions & anxiety. I've asked them question after question and they've been really good at answering them for me but I keep looking online and come up with more questions and more worry. I feel like I want to call them every day.

Questions that you could help me with are what is the course of treatment I should do from here on out. I was very displeased with the way my PCP made me feel so I am meeting with a new one on Monday. What are some questions I should ask her? Should I ask for blood work or scans on a routine (yearly or more often). I was not referred to an oncologist. The dermatologist said she doesn't usually refer at stage 1a but would if I wanted. She said that at this point the oncologist wouldn't do anything different. I think I am going to ask for a referral though. I think that might help with some of my questions / concerns.

I am 32 years old with three kids (6,4 & 9 months). Which makes this even more devastating. These past 6 weeks have been horrible. I try to act ok around my husband and kids but inside I'm so scared and worried. So after I put my kids to bed at night I just sit and look online and get overwhelmed with fear and panic. I want to be as informed as I can be but in a healthy way. Every ache, pain etc I have I convince myself that it has spread throughout my body. I'm in a constant state on panic. I know that it's not healthy and I really can't go on like this. But then again I should be aware of what I should be looking for to alert the dr.

As you can see I'm just a ball of questions. If you're willing to help me answer some I would be so so appreciative. Thank you so much!

[Robynfine in reply to Atemple24]

Hi, glad you checked in with me! This diagnosis is hard on us and I understand the stress you're under. First off, I know you said you liked the dermatologist and surgeon and that's a great start. Unfortunately, at the point you are at they only recommended skin checks and UV protection as well as making sure you are checking your skin. Question for you. Has your dermatologist seen a lot of melanoma and are they a board certified dermatologist? I honestly don't think an oncologist will do much though you could ask. Make sure your oncologist is a melanoma specialist not just a general oncologist. There is a huge difference.

You sound like me. Stay off the internet! Unless they are good sites. Like Melanoma Research Foundation, AIM at Melanoma, Mayo Clinic, American Cancer Society. There is a lot of crap out there too.

Remember, you don't have to be strong all the time. It's a very scary time. But my psychologist would always tell me "there is nothing there until there is something there". You can obsess about "what ifs" but you will be happier if you try to live your new normal. Your kids will feel it too.

Also, labs for melanoma are pretty useless. I wouldn't do blood work because it won't tell you much. You should, however, see a counselor or psychologist. I can't tell you how much seeing mine helped me process what I was going through. He just taught me techniques to calm me. He also just listened. I think doctors sometimes treat the physical but not the emotional and mental effects that cancer has on us.

I hope I helped you and feel free to ask any questions you want!

Robyn

[papillion in reply to Atemple24]

Hello. I am 35 and was just diagnosed this week. The pathologist labeled my specimen as stage 1a as well. Did they have you do the sentinel lymph node biopsy? I am getting mixed messages from my internet reading about the need for this. But my dermatologist is suggesting it, so I don't know.

I am having the same anxiety about every twitch or pain being metastasized cancer. Did you figure out ways to cope with it?

I hope your kids are doing well. My fiance and I had planned to start trying after we get married in October, but now this comes along. I was already up there in age so now I get to worry if it will ever happen.

[Atemple24]

Thank you so much for your reply! I am so sorry you too have to go through this along with so many others that I'm realizing.

My dermatologist is board certified and has seen a lot of melanomas. She is actually my second opinion after a dermatologist from the Mayo Clinic. I went to him in December with the concern about my mole and he said it was nothing. For a couple months I kept telling myself that he just looked at it, it's nothing.. because I do tend to be a little on the hypochondriac side.. but I just didn't feel right about it so went to this new dermatologist. Thank God I trusted my gut & I'm kicking myself that I wasn't pushy enough in December to just have him remove it. But I can't go back in time so I just have to deal with the here & now.

Again, thank you so much.. it's frightening how lonely you can feel. Like I said before I try to keep cool around my husband & kids but inside I'm a ball of nerves. I will definitely take your advice and seek out a therapist.

Have a great weekend!

❤️Andrea

[Tcaagbay]

Good morning,

My name is Tiffany and I am a 40 year old wife and mom. I just had a punch biopsy done on a mole that started turning black. I don't want to have a too negative outlook, but I also want to realistically prepare myself, emotionally, if the diagnosis is melanoma, so I keep thinking about all the possible scenarios. It feels like an eternity waiting to hear back on your "fate," and like Andrea said, I am feeling very isolated. What a head and heart trip! Any tips on managing the stress of The Waiting Game?

[Robynfine in reply to Tcaagbay]

Hi Tiffany,

You're right! Waiting is the WORST! Have you had melanoma in the past? When was your biopsy done? I suppose they told you it would be about two weeks. I think realistically, if they are worried they rush it along.

I guess just try to keep busy and stay as positive as you can. Remember, it is nothing until it is something. We can't control what it is but we can control how we deal with it. Have coffee with friends. Go shopping. Do fun things to keep your mind off waiting.

Have a great day! Robyn

[Tcaagbay in reply to Robynfine]

Waiting does suck! I haven't had melanoma in the past, but I have a high risk due genetics combined with past sun exposure. My mom has had skin cancer. My biopsy was last Friday. I keep trying to stay off the internet, but it's hard. This site has already been a tremendous support for me, so thank you!

[Robynfine in reply to Tcaagbay]

You bet! I hope, pray and have my fingers crossed that the biopsy comes back as nothing!

[Tcaagbay]

Got my report back, and it was atypical- whew! Now I am supposed to go get skin checks every six months. Thank you for your kind words, Robyn! Your responses helped me feel better when I was in waiting limbo.

[Robynfine in reply to Tcaagbay]

Yay!!! I'm so happy for you! Thanks for letting me know

[Katy_R]

I'm not sure exactly why I'm posting. I don't have a question really.

I am 34 years old, mom to three kids.

I was diagnosed with stage 1A in January and during the wait for my WLE and following it I was very anxious for several months, mostly concerned about recurrence and being sick with young children. I had an all clear at my 3 month checkup and finally started to relax. This morning I went in for my 6 month visit and my dermatologist found a new mole that she did not like the look of, it had a black spot in the center. She also found a new spot that while it didn't look particularly abnormal, had just appeared in the last few months right by my excision scar. She said she wanted to take it off just to be safe. So now I'm waiting for two biopsy results and I can feel myself starting to get anxious again.

I guess maybe my question is does the anxiety ever go away? How do you keep calm during the biopsy waits? I've had multiple atypical moles and excisions before the melanoma was found so I'm trying to just mentally prepare for maybe needing another one. I know that worrying won't help but I always find it hard to keep busy while I'm waiting.

[Robynfine in reply to Katy_R]

Hey Katy, every time I go to the dermatologist or oncologist I am always stressed out. For me, the anxiety doesn't go away. Like I said, I have been dealing with this since 2009. This disease just plain sucks! I wish I had some magic advice as to how not to be anxious, but I don't! I'm sorry that you are going through this because I completely get it. It isn't easy but we can do it!

[Redjenn]

What does a melanoma specialist do differently than a general oncologist?

[Robynfine in reply to Redjenn]

Melanoma is a different kind of cancer that requires an oncologist to be well versed in how this disease can change and mutate. It is treatable and not curable. It usually does not respond well to traditional cancer treatments so the melanoma specialist needs to be up to date on all the treatments that work. They understand how the disease works. Once the disease metastasizes it can travel to anywhere it wants in your body which is different than other cancers. Melanoma specialists are a small, tight knit group that share knowledge and research for the most part. I hope that helps!

[canada123]

Hi All.

My name is Neroli and I have been diagnosed with melanoma. We are still in the early stages. I know that I will have to go back for further incision as the margin is not big enough. I am pushing for my lymphnoids to be assessed and for other scans to be done. I am having a very difficult time with the diagnosis mentally. Every ache,pain or cough fills my head with fear. I am emotional mess when I look at my two young daughters. Any advice on how to overcome the mental aspects of this disease?

[Robynfine in reply to canada123]

Hi Neroli,

When I was first diagnosed I went into a depression and I went for help. I began seeing a psychologist just to talk and it help tremendously! What your feeling is so normal but keep putting one foot in front of the other. Your kids will see your strength and hopefully you will begin to feel it too. Make sure you use your support system. Good luck and take care.

[papillion]

Like a lot of people, I get worried about my cancer recurring. I was diagnosed 1a and had the wle with no slnb. I go to the dermatologist every three months now. With help from my husband, we do a monthly mole check and check for hardened lymph nodes. So I feel like I have those areas as controlled as I can. But what other potential warning signs or symptoms should we keep an eye out for? Are there any things that should send me running for the doctor asap?

[canada123 in reply to papillion]

I would love to know about other warning signs as well. For example today I woke up with a cough and my chest/breathing feels restricted. Part of me is sure that this is just a cold but because so much is still unknown, it makes me so very nervous.

[Robynfine in reply to canada123]

For me, I didn’t have any warning signs. That is what makes this disease so scary. All of my mets were found on my routine scans. I know it feels like we are being hypochondriacs because every little pain, cough, lump, headache, etc we think is cancer related. Keep living and live with Awareness.

[ashisradx]

Hi Robyn! I had a biopsy done last week on a mole and got a call yesterday that my mole was severely atypical, and that they were going to treat it like it was a melanoma. They scheduled me for surgery, and told me that I should be prepared for a big scar. I guess this surgery is called a wide local excision. The mole is right next to my belly button, so I am super concerned about how they are going to be performing this surgery and what my down time will be like. They made it sound like it would be a quick 30 min thing and then I would be done. But, should I be asking off time for work? I've seen many people say how painful it is and that they had to take days off from work because of it. I'm also worried about my other moles, and what questions I need to be asking my doctor. I'm terrified. I know that my biopsy didn't come back as melanoma, but I just can't help but feel concerned and I feel like my doctor didn't really give much care to the issue. My surgery is scheduled a month from now, and I feel like if it's as serious as it is, shouldn't it have been scheduled sooner?

[Robynfine in reply to ashisradx]

Hi, I kind of agree with you. If it was so serious, why wait so long. There is time for a second opinion.

After my WLE, I did have some time off from work. Where you’re talking about is going to be sensitive so I think I would ask about that. I think you should get more information on what they mean by atypical. Do you trust this derm ? Have you had a full body check? More questions than answers. I hope I helped

Robyn

[Bergerrs23 in reply to Robynfine]

A month is fairly standard for an atypical/dysplastic Nevus. No reason to stress- it will not grow/spread/turn into melanoma in that time period. I have Had 3 (most recent 2 weeks ago), 1 melanoma in situ, and 1 invasive/deeper melanoma. As for recovery, for my 4 “smaller” excisions (smaller than what I needed for the invasive melanoma) I either have it done on a Friday and go back to work Tuesday or have it Thursday and go back Monday. So 4 days total. That is plenty of time. I jave A job where I am Lucky and can get that time off. If you don’t, I would Say do it on a Friday and go back Monday and you will be great. Sore, but not unbearable