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November 5, 2014 at 6:15 pm #22232
I joined this site in September after finding out I had melanoma. First time posting.
Quick back story:
I had a mole on my top left foot for years, noticed it was growing, went to a dermatologist for 5 years who always said it was fine and being labeled as cosmetic, never offered a biopsy, so I assumed I was being proactive since I made a standing appointment every year, And I was at a top teaching hospital for my care. Fast forward to summer 2014 and I noticed at the end of my pregnancy in the third trimester that the mole was bigger and starting to itch (never did that before), so I made an appointment to have it removed once the baby was delivered.
Not thinking it would come back as melanoma!!! No one in my family has skin cancer. I’m also olive skin tone with rarely moles or freckles. Just shows you skin cancer does not discriminate.
I got the results the end of August, had a wide excision on my foot, skin graft put on and a SNB in September, a week before my maternity leave was ending. No ulceration and clear margins BUT the SNB did show a microscopic trace of melanoma in my left groin, so as a prevention, my surgeon wanted to remove a few lymph nodes in the surrounding area. He was very confident that no more cancer cells would be found.
I had that surgery 3 1/2 weeks ago, 6 nodes removed, all clear (yay!), I’ll have my JP drain remove next week (double yay!). Any tips or exercises for dealing with the swelling? I know I’ll be fitted for a compression stocking once the drain is removed and my surgeon said most likely, I’ll wear that for 4-6 weeks. Not sure if it’s all the time?!
While I trust my surgeon, I made an appointment with a top melanoma specialist at the University of Pennsylvania to see how the follow-up care will be. I really liked that physician who agreed with all of the steps that I done prior to meeting her and she even knew my surgeon, so that made me feel better. It was such a whirlwind of being diagnosed that I didn’t even think to have the second opinion appointment before the SNB.
I decided to stay with Penn Med and have all of my follow-up care with the Abramson Cancer Center and follow a “wait and see” approach.
To think, I have always been very healthy and active young woman and in two short months, I was diagnosed with skin cancer, two surgeries and CT scans, MRIs and chest x-ray…all images came back clear (thank the lord).
Next up is PET scan the end of December before my follow-up visit with the oncologist. I never had a PET scan before but read about it and seems fairly easy and painless. I can look at it as my “quiet time” and “mommy break”. Have to find the humor in all of this!!!!!!
I also have the same fears over seeing my beautiful, healthy baby grow up and of course, having more babies. Has anyone on her been diagnosed with melanoma and want onto having more babies?! My oncologist wants me to wait two years before trying again, which was my husband and I original timeline. So we’re okay with getting two year post-diagnosis.
My oncologist did talk about Interferon but she wants to complete the genetic testing of the original tumor removed on my foot and have the mitotic count looked at again, (it was reported as 0-<1). And if it's still that low then "wait and see" with every 3 months appointments and alternate between PET scans and CT scans and blood work and visits with a dermatologist as well. Obviously, I will be going to a new dermatologist now. My husband and I read a little about Interferon and even how it was presented by my current oncologist and the first one I saw, it does not seem like the best fit especially since it only increases to 6-7% one more year of disease free, not overall survival rate.
I get so mad and upset over the fact that I was being proactive patient and seeing a dermatologist since May 2009 for yearly skin checks and he never ONCE offered to biopsy the mole. But I have to keep reminding myself that I am not a doctor and I was putting my trust in one, I have to let that go and know it was not my fault. And I can only focus on the present and staying healthy and on-top of my care.
One day at a time, right?
I just wanted to reach out, share my story and any tips you may have for dealing with this diagnosis. And also being a new parent!
Thank you for reading my story.
DanielleNovember 5, 2014 at 9:15 pm #65778Catherine PooleKeymaster
Being a new parent is really tough! Trial and error and ask your parents to help. It does take a village to raise a child!
As for your melanoma, you are in excellent hands at PENN, I am a former patient there (25 years ago) and I was treated very well and they were so accurate with how my prognosis would turn out.
So try to live a moment at a time, and enjoy being a parent, they grow up way too fast!November 6, 2014 at 2:37 am #65779Happy_girlParticipant
Thanks so much for sharing your story. I know this is a terrifying experience. It is so hard to keep emotions under control. The hardest times for me were feeding my baby in the middle of the night ( gotta love those crazy feeding times ). I would have so many thoughts of never seeing my daughter go to school.
I’m glad you’re being seen at a great melanima center. You are right that the pet isn’t bad at all- nerve racking- but not bazar. Try to just relax.
I am curious what genetic testing your getting done?
Let’s keep in touch. As much as I hate that this is happening to you- I’m thankful for someone that shares practically identical thoughts, fear, and dreams.November 13, 2014 at 7:47 pm #65780
Thank you, Catherine and Happy_girl for your replies and support. It helps A LOT. Yes, my family has been amazing through all of this and helping with the baby, we couldn’t have done it without them especially when recovering from the surgeries and going to appointments.
I know Penn Med is a great place to be for treatment and follow-up care. I work at the university, so I know the reputation is strong and the cancer team care is good.
As far as genetic testing, my oncologist wants to test the tumor (original mole that was removed from my foot) to determine the genetic findings of the melanoma. I don’t know that information yet. Hopefully, when I go for my follow-up in January the results will be back, if not sooner.
I hope you both have a wonderful Thanksgiving holiday, I know I’m thankful for my healthy baby boy and that the cancer has been removed from my body.
DanielleNovember 13, 2014 at 11:50 pm #65781Catherine PooleKeymaster
I would ask if they are testing it for BRAF mutation? I think that is probably what is happening which is done quite frequently nowadays. Yes, you are in good hands and I hope you will be able to relax and enjoy the holidays and your baby!November 14, 2014 at 4:32 pm #65782 Yes, that is the gene testing that will be done on my original mole/tumor.
Oh I plan on enjoying the holidays fullyNovember 14, 2014 at 6:51 pm #65783goldfidlerParticipant
I thought you might find this discussion thread helpful.
This forum has been a great support for me too. Each person heals and recovers differently. We wish you the best of luck in your efforts but know that you are not alone. There is a lot of knowledge in this group.
MattDecember 17, 2014 at 3:34 pm #65784
Thanks, Matt for the support and posting that forum link. It was helpful even though my drain has been out for over a month now and I feel like everything is healing nicely. I wear a compression stocking, both knee and thigh-high (alternate) while at work and it has help with the swelling in my left leg.
I have my first follow-up appointment with my oncologist in January and I go for my first PET scan on January 2nd, so I’m getting a little anxious about that which I assume is normal feeling, so I’m trying not to dwell on that and just focus on the holidays and hopefully a very healthy 2015!
DanielleFebruary 3, 2015 at 11:04 am #65785rick1981Participant
Hi, just wanted to check how your PET scan went?
My wife was diagnosed with Stage IV melanoma at age 33 so I can relate to your situation… my main advice is to enjoy the positive news from the previous scans and enjoy life but please remain watchful and seek a true melanoma specialist.March 9, 2015 at 4:10 pm #65786
My PET scan was all clear. Thank goodness. Thank you for following up. My next scan (CT) and appointment with my oncologist is in July. I’ll be checked and scanned with her every 6 months for the next two years. I have my appointment with my new dermatologist this Wednesday. All of my care is at Penn’s Abramson Cancer Center and my oncologist is a melanoma specialist. She referred me to my new dermatologist at Penn Med, they work together with skin cancer patients. So, I feel confident in my healthcare team. In between appointments, I’m just enjoying life with my family and seeing my baby boy discover his world. He’s 8 months, happy and healthy and that’s all I can ask for. Plus a healthy life myself
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