Newly diagnosed melonoma. Scared!

[Lbrown88]

Hi,

I am just looking for some extra support and information from people in a similar boat to myself. Was given the gut turning news on Wednesday that the mole that I had removed 3 weeks ago, that I had asked to be removed two years ago and was assured was fine, was actually a malignant nodular melanoma. Depth 1.3mm, low mitotic rate and non ulcerated. Booked in for node op and wide excision two weeks tomorrow. Does anyone know if this puts me as a stage 1 or 2? Also what are you experiences of nodes being infected from similar melanomas. My consultant seems hopeful but there is just that niggle that makes you always feel the worst, more so when you are a single mam of a 7 year old little boy. Really scared and extremely annoyed that this could have been easily avoided if this was taken seriously two years ago ☹️

Looking forward to hearing your experiences and advice.

Lyndsey

[Robynfine]

Hi Lindsey,

I’m so sorry that you are going through this. I believe this puts you at a stage 2. You won’t know all the details until you finish the wide excision and nodes tested.

The great thing is that treatments for melanoma are so much better than in the past and this means there is so much hope. This is not a death sentence. I know this from experience. I was diagnosed stage 4 in 2012. Multiple mets and brain mets. I have been No Evidence of Disease for 4 years and 8 months.

Melanoma is definitely a scary cancer, but can do this! Best of luck to you! Remember to be your own advocate and if something doesn’t feel right, make demands! You’re doing great! Take care, Robyn

[NehaB in reply to Robynfine]

Hi Roby, Good to hear that you survived melanoma stage 4 fight. My brother has diagnosed with stage 4 metastasis melanoma. It spreads in multiple organs, lymph node, liver, lungs and bones. We are in India and now doctors also raised their hands and as of now he is on palliative care. Can you share your experiences and the treatment options? I know that treatment will be different for different patient but I hope it will give us some idea to explore the treatment options.

[Robynfine in reply to NehaB]

Hello,

There are several treatments out there now. I did the Yervoy infusion. I had some pretty severe side effects but the treatment was successful. My side effects only allowed for two treatments before I had to discontinue treatment.

[SofiaJS]

Hello Lyndsey,

I’m sorry to hear about your diagnosis. I had a similar experience with a mole on my right arm. 4 different dermatologists assured me it was normal over the span of 3+ years. The 4th did a scraping because of its location and was surprised a few weeks later when it came back as melanoma with a depth of 1.6mm. 6 weeks later I had a wide excision and sentinel node removal. The excision had clear margins and the node biopsy was negative. I now have a beautiful 4.5 inch scar on my bicep as a reminder.

Whatever your outcome I agree that you have to trust your gut and be your own advocate. I felt very guilty for awhile for not having been more persistent with the past dermatologists, but I had a wonderful surgeon who advised me not to blame myself. So, from here on out I will be sure to work with a dermatologist with whom I feel comfortable and I will keep my precious skin protected when I’m outside with my 3yo and 1 yo.

Hang in there! Now is the waiting game. Focus on what you do have control over- your skin protection and enjoying each day. I wish you the best.

[ttjeanious]

Hi Lyndsey,

I know this is a really scary time. I had a similar experience. In 2009, at age 28 I had a mole I was sure didn't look right and my doctor told me it was fine. I waited about another 3 months before insisting on seeing a dermatologist, which probably saved my life. I ended up being a Stage IIIa since the melanoma had spread to a lymph node in my groin. I had the wide excision done as well as a full resection of the lymph basin in my groin. I had a second primary melanoma in 2013, which was another scare but the good thing is, once you have had one, the doctors (at least in my case) are very proactive and do a good job of noticing even the smallest and earliest of changes. That one was caught at Stage I and did not need anything other than the wide excision. I have been NED since 2013. I took Interferon (which I have lots of opinions about I won't share at this point), but there are a ton of new treatment options that have been extremely effective in getting and keeping even Stage IVs NED. Try not to let your mind take you to the worst places.

At this point, you will not know what stage you are until they do the sentinel node biopsy to see if it has spread. Sending you prayers that it has not, but if it has, try to take a deep breath and again remind yourself not to google, and not to spiral out (coming from experience, this is easy to do). Please reach out to me, or I'm sure anyone else on this thread if you need to talk. Every experience is unique, but we all have felt the fear and uncertainty you are feeling.

Sending you love and light!

Terisa

[Lbrown88]

Thank you for your replies. I am glad to find a group with people who can relate to the situation I am in. It is just terrible. I never ever thought for one second I would be having this dilemma at 30 years old and Melanoma would become the black cloud over my life. Its just a waiting game now, I have the node check and wide excision two weeks today and then however long it takes for the results of these before I really know where I stand. I am a nurse myself and have see the impact of chronic disease and different types cancers can have on life's but just have not encountered Melenoma in any great depth. Now after doing nothing but read around the subject I have probably scared myself to death with absorbing all the negativity there is available to read. Although I do understand the is some unreliability and dated statistics published.

It's the not knowing what the future holds that is the most scarey.

Thanks for all your support.

Lyndsey

[ttjeanious]

Hi Lyndsey,

Just checking in and wanted to see how you are doing. Thinking of you.

Terisa

[Lbrown88]

Hi everyone, sorry I haven't replied before now. Had my WLE and sentinal node biopsy done 5th September, got results that there was no sign of further spread. Absolutely over the moon. Having a few problems with my wle site and it sort of resembles an ugly shark bite with dog ear bumps on either end of the excision line, BUT I can cope with that. Hoping this goes down in time and surgeon states I may need further surgery to correct this in future but we are talking years down the line. Really scarey time but got the results I was hoping for and that's all that matters. Love, luck and hope to everyone out there in this battle. Xx

[VivaciousMo]

Hi Lyndsey, such great news that it has not spread! I'm very happy for you! Now you should focus on yourself and your immune system to make it as strong as it can be to prevent any recurrences. I recommend a few things to help with this (but you don't have to take my word for it!): Cut out sugars and most carbs, diet high in green veggies to create at atmosphere in your body that is not hospitable to cancer, de-stress, seek counseling or other emotional support as needed, and sleep a lot! Our bodies are amazing things that can keep us in good health if we give them the support they need. Sending you lots of love and hope! -Moriah