› Forums › Cutaneous Melanoma Community › Terrified and Don’t Know Where to Turn
- This topic has 14 replies, 7 voices, and was last updated 5 years, 2 months ago by
MMH.
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- January 30, 2019 at 10:10 pm
I was diagnosed with Stage Ia Melanoma in May of 2018. It was a .5mm thickness on my outer right lower thigh and they did a further wide excision which came back clean. Fast forward to January 2019, a few weeks ago, a small, pink bump appeared on the same leg on the upper thigh this time. Within two weeks, it looked like a nasty blood blister and I called Hopkins (which is where I'd been going every three months since May) and then were able to see my yesterday (a week after it went zero dark thirty on me). They suspect it is Nodular Melanoma (holy crap) but the curve ball was they palpated my lymph nodes and think it is present in the nodes near the orginial site (which I was told was no big deal and i'd be fine). I went for an ultra-sound guided needle biopsy of the lymph node today and now I wait. I'm trying really hard to keep it together. I'm 44 and I have four children, the youngest is 10. I'm scared. If(when) they confirm their suspicions, I'll already be a stage III and then I assume they will order a PET scan to see if it's gone to any organs. How the hell did this happen so freaking fast. I've been on the internet and it just scares me more. Is Hopkins the right place? How in the world do I tell my kids? I have a great husband and friends but no one who has ever dealt with the absolutely terrifying cancer. It's silent, it's quick, it's evil. I feel FINE. It's terrifying to think that it's been spreading inside me while I go about my life thinking everything is just dandy. I'm also sad. And I'm know I need to be positive and brave and face this with a lot of fight but right now, I'm just sad and scared.
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- January 30, 2019 at 11:59 pm
Waiting is the worst, but try not to get too far ahead! Take a deep breath and remind yourself that you don’t know it’s melanoma until the biopsy results come back. I have been where you are many times! I panic, too. If it has metastasized, keep in mind that treatments are much more effective than they used to be and more are in the pipeline. I’m sorry for what you’re going through. I know it’s horrid but you may be worried for nothing.-
- January 31, 2019 at 1:08 pm
Trying to take deep breaths. It's just hard. Knowing people here have gone/are going through this does help me. I feel less alone. Seeing a few responses to my post this morning lifted my spirirts. Thank you for taking the time to respond.
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- January 30, 2019 at 11:59 pm
It is okay to be scared and sad. BUT…you have to wait for the biopsy results to see what you need to do. Both in regard to what you tell your kids and what treatment you work toward. Yes….if lymph nodes are positive you will be Stage III. At that point, yes, they would probably do scans and such…which even if you are Stage III are likely to be ALL clear! But….you have to wait and see.
The good news is….if you are found to be Stage III you have really good treatment options. I was diagnosed as Stage IIIb in 2003 at the age of 39 with a 10 and 12 year old. AND….I'm still here!!! Treatments for melanoma have come a very long way since 2011!!! I hope you will not need to avail yourself of these options….but they are there should you need them.
Hang in there. Get your biopsy results and go from there. Celeste
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- January 31, 2019 at 1:04 pm
So you know exactly how I feel having kids that age! This waiting game is torture but having people reach out to me here and tell me they are still here and fighting the good fight and doing okay gives me hope. Thank you so much.
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- January 31, 2019 at 2:36 am
Melanoma is very unpredictable, which is why you were being seen every 3 months the first year since your diagnosis. Statistically, the greatest odds of recurrence happen within the first two years of diagnosis. This is why in the first two years you are seen at frequent intervals — to catch it early if you have a recurrence.
You probably saw Dr. Wang, correct? He's pretty thorough and did the right thing by ordering the fine-needle biopsy. The waiting does stink and I am sorry to hear you are dealing with this.
The internet is a scary place and much of the info out there on melanoma is out of date. It's probably in your best interest to not research too much. Instead, come to this forum if you have any questions. The melanoma team at Hopkins is one of the best in the country, so they are up to speed on all the latest treatment options. You are in good hands there.
Yes, a positive fine needle biopsy would put you at Stage III and a PT and/or CT will probably also follow. If any lymph node removal or sentinal node biopsy is required, Dr. Jacobs will probably do that and she is wonderful!!!! You also then would be seeing either Dr Sharfmann or Dr Lipson, who would fill you in on treatment options.
I am Stage IIIB with an unknown primary and have been under care at Hopkins since 2011. Yep, 8 years and am still here.
Praying you hear good news.
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- January 31, 2019 at 1:02 pm
Knowing you are seeing the same team I will be seeing and are still here helps me breathe. Truly. I was hoping so much the Dr. in Radiology yesterday would say, "gee, I can't tell which nodes to biopsy" but he had no trouble zooming in the problem area identified by the dermatologist. I'm also wondering how quickly things will move at Hopkins if this comes back as positive. Like, days? Or will I have to keep waiting for weeks for things to happen?
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- January 31, 2019 at 5:24 pm
If you have a positive test result, they will want to act quickly on this. If surgery is in your future, then you will be scheduled to see Dr. Jacobs who will most likely order some additional tests. Her specialties are breast cancer and melanoma, BTW. What I liked about my experience at Hopkins was that there was a definite plan laid out for me. It's like they were holding my hand throughout this entire scary time.
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- February 1, 2019 at 12:42 am
Hi,
I was exactly at the same place a year ago, waiting for that lymph node biopsy result. Turns out I was stage 3 (you may not be, though), but after all I've been through this year, waiting for that result was the worst. I still cannot think about that period of time without feeling bad, I was in such a bad place, scared and sad, like you are at this moment. I'm 39.
I am fine now and you will be too. You don't have to be positive, it's ok to cry, to be scared, but remember that this state of mind will not last forever and do get help if you can. You will be better soon, the doctors know what they are doing and you are not alone.
It is hard to stay off the internet, but stop googling, it was the best advice I was given: Google doesn't know your future, you won't find the answer there.
As for your kids, they will be ok too, I find kids are better than adults when it comes to cancer.
Marie
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- February 7, 2019 at 2:19 am
Here I sit, STILL waiting for the lymph node biopsy result. It's been more than a week! I called Hopkins today and asked the nurse to please have the doctor call me and NOTHING. I'd like to think that this delay means it was fine and no one is bothering to tell me because it doesn't feel urgent to them but I'm about to get esophageal cancer from the acid eroding my esophagus from the anxiety. Gah.
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- February 7, 2019 at 6:33 pm
I know the fear, I'm there right now except I do know I have melanoma again, and while the doc hasn't said it yet (waiting on reviews from panel of experts from not only this path report and slides, but last path report and slides from years ago). And was supposed to have PET CT scan this morning (cancelled due to insurance denial). But my pathology reports references "nodular deposits" and I know the Breslow depth (I'm scared to even say the depth). My recent was a lump (no real color to it – barely if any – almost skin colored) by the scar from original Stage 2A diagnosed Dec 2013 with surgery Jan 2014.
I know it has to be tough with younger children. My son is about to turn 25. I am only 50. And I feel fine. I don't pretend to know exactly how you are feeling since I am not you and am not in your shoes. But we all have experiences with Melanoma. So that we have absolutely in common. We do know the multitude of feelings that go with this diagnosis.
Yes, the internet has scared me. But also has given me hope. In any given day I go through sadness, fear, anger, alone, worried, hopeful, strength, feeling brave, fighter mentality, and then right back to feeling alone (while I know I'm not), worried, lost, scared again.
I am new to this forum and am finding my way through all of this myself. I'm here as I know everyone else is. Keep us posted! Prayers!
Beverly
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- February 7, 2019 at 9:05 pm
Thank you for sharing your story as well. I am so sorry you are waiting for news you don't think will be good. Stinks. I didn't hear back AGAIN today. So we are on day 9 with no call. And I've left messages for the doctors to please call me. I know they are busy but this is a real, live person who is living in a state of waiting with baited breath and I'd like to move forward, one way or another.
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- February 12, 2019 at 3:45 pm
Hang in there, and if you want to chat I am also going to Hopkins for three month checks. I had a .6mm removed in August 2018. It is all so terrifying.
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