Fear and anxiety of recurrence

Posted By
kortneypatricia
12/4/2018 5:59pm
View other posts by
Activity
Replies: 9

Hello all,

I feel ridiculous typing this post, but I feel it might help me cope. Back story: I’m 26 years old, a wife and mother of 2 beautiful kiddos (5 & 3). In July of 2017 I found a strange spot on my labia minora. Looked like a small black freckle. After a few weeks of it not going away, I decided to have my GYN take a look. Initially they were going to leave it, but something about it didn’t sit right with me so I requested to have to removed. About a week later the results came back as melanoma in situ. The next day I went in for a WLE, and thankfully the results came back completely clear. I healed up fine and that was it; just follow up with dermatologist. I’ve followed up alternating between my derm and gyn every 6 months. So far everything still looks good. My derm has seen no other suspicious spots and neither has my gyn. I also check myself regularly to make sure there are no new spots, especially in that area. However, recently, especially in the last few weeks, my anxiety and fear have gone through the roof. I’ve had such a fear of recurrence that it’s hard for me to function. All I can think about is “what if it comes back” and my children grow up without a mom. I even went to the dermatologist a couple weeks ago to look at some moles on my back (that I’ve had forever), and she removed them just to give me peace of mind. Everything came back normal and that helped for a few days, but once that wore off then I just worried about other spots that I’ve had forever. I constantly worry that they’ve missed something or that something horrible is going to happen. I find it hard to concentrate and focus. I’m also about to graduate nursing school, so the stress of that doesn’t help. I’m just wondering how you all focus on the good and not the fear? I know that I am so blessed to have caught this early, but all I read online is how often it recurs, and that the stats for young people surviving melanoma are so grim!  Sorry for the long post, and thank you! 

Kortney Fish

Hi Kortney. 

I am not the patient. My 18 year old son is.  I have been experiencing this uninvited adventure in melanoma as a mom and it is difficult to say the least. I have days when I feel like I am strong and days when I am not...I have learned over the last 9 months that every day is a blessing and I really try to focus on that.  Melanoma has taken too much of me emotionally, and it will always have a hold over me, but I refuse to let it control me. I can’t...I have to fight for my son and make the best decisions I can for him. He is too young to understand it all. 

As for young people usually having a poor outcome, we were actually told just the opposite from our melanoma specialist.  My son is now 9 months since his Stage 3 diagnosis, a little over halfway through his adjuvant therapy, and he just had his first set of follow up scans, and I am beyond happy to say he is NED.  

You said you are graduating from nursing school...first of all congratulations....that’s a great accomplishment!!!! I am a nurse as well, been a neonatal nurse for 24 years. Being a nurse is not always a good thing, you know too much and you think the worst....it’s an occupational hazard I guess...but in the end my nursing background has actually been a huge benefit. 

My best advice is to take one day at a time...enjoy the good days and allow yourself the bad days. They are part of this journey unfortunately. The longer  you go without a reoccurrence the less the chance it will come back. Be diligent about your follow ups and do your own skin checks....and remember that there are treatments that are successful if although highly unlikely the melanoma decides to resurface....you are not alone and there is always hope.  Your kiddos will have their mom for a very long time to come. 

I hope this helps. I know how scary this is...but you are not alone. Happy Holidays to you and your family!!! 

Kelly :) 

A Melanoma mom ❤️

Thank you so much. ❤️ I can’t imagine it being one of my children, I’d much rather it be me. I’m so glad to hear that his scans show NED! That is amazing. Thank you for the kind words and reassurance. I hope you and your family have a great holiday! 

Kortney Fish

lkb - (12/4/2018 - 11:00pm)

Also, some of the stats online are based on data from earlier years when some of today's treatment options were not yet available. Wishing you strength.

Lisa

October 2017 primary scalp WLE; SLNB; partial neck dissection. July 2018 recurrence in neck. August 2018 second partial neck dissection. September 2018 started Nivo. December 2018 brain met + recurrence in neck.

 

Thank you Lisa!

Kortney Fish

Kortney, my husband is the one who has melanoma. Please go and read my story. All of your feelings are valid. Congratulations on your upcoming Nursing  graduation that is an awesome accomplishment. You have been a good advocate for yourself, and no doubt that will continue. You are doing all the right things. I will pray for you,  if you continue to feel such anxiety, perhaps you may benefit from some counseling, that isn’t a bad thing. The what if’s can be paralyzing. You have 2 beautiful children, and you need to enjoy them, and your life. Don’t let this eat you up. You have so much to be thankful for. It’s the holiday season. EnJOY! 

Michele 

I will go and read your story. Thank you for the encouragement and kind words. I know I am lucky and have so much to be thankful for, the anxiety of the unknown just becomes a bit much for me sometimes. I’ll be praying for you and your husband as well. ❤️ I hope you have a merry holiday! 

Kortney Fish

Hi Kortney - congrats on your upcoming graduation.  Nurses are the glue that holds the medical profession together!  We've all felt (and continue) to feel the anxiety, fear and dread that comes with the terrible disease.  It can be paralyzing but ultimately accomplishes nothing.  Time spent worrying about the "what if" of tomorrow only cheats you of the enjoyment of today.  I know this is easier said than done - I wish I would have talked to a counselor when my husband was first diagnosed and would encourage you to do so.  It might help ease your mind.  You're taking all the right steps by being aware of your condition and are diligent in your follow up.  Good luck with your nursing career - take care!

Ann

Janner - (12/5/2018 - 11:48am)

Make it a science.  Take pictures!  Take pictures of your spots, then take pictures of the rest of your body.  75% of melanoma grow on NEW lesions so your existing spots are probably just fine.  If you can do the photo comparisons, you can actively watch your own body and have some assurance that none of your existing lesions are changing and that you don't have anything new showing up.  I've found my 3 primaries and don't expect my doc to see something before I do.

Remember again, only around 10% of melanoma warriors EVER have a second primary.  And reading online is exactly the best way to increase your anxiety.  Online is the worst place to be for stage 0 warriors.  The online communities are not an accurate representation of the real world.  I had an in situ lesion in 2000.  Do you think I'd still be visiting a site like this 18 years later and reporting my success?  Hardly.  That's the vast majority of people in your situation - they have absolutely no reason to be online because they have successfully had their melanoma removed and moved on.  This site is for newly diagnosed and the "exceptions".  Not downplaying the seriousness of the disease, just the reality of who populate sites like this.  Remember again, not everyone understands their disease and their path report.  I've seen over the years people saying they had in situ and yes, they had an in situ portion along with an invasive portion too.  You have to take everything you read online with a grain of salt.  And again, online is NOT where you should be.  I say stay off the internet thru the rest of the holiday season and revel in the joy your cute family can give you!!!!

Thank you for the response and helpful tips. ❤️ And good luck to you on your own journey! Happy holidays!

Kortney Fish