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October 22, 2013 at 1:54 am #21636
I found this website yesterday and am so comforted by all of these posts. I finally feel like I’m not alone.
I was diagnosed last month with malignant melanoma. .75 breslow, clark 4. some mitotic something or other. Anyhow, Stage 1. I had an SNLB and WLE almost two weeks ago and my pathology results were great. I don’t feel great though. My leg and groin are so painful and swollen. I’m not sure how normal that is, but I’m still limping. Emotionally, I’m still fragile as well.
I am baffled by some of the things people have said to me. One friend actually said, “Well, you’re just lucky you got the good cancer.” My mouth is still agape.
I know people mean well, but I would say that 90% of the people around me seem clueless about melanoma, and also just think it’s all over and I should be over it by now.
I have started to shut down to a lot of people on an emotional level, because I loathe the dismissal of my feelings and the ignorance. I know it’s important for me to self-soothe and take my time to heal in all ways.
I believe this will get better as time passes, but all of my gazillion moles look bigger, darker and stranger in my mind. Also, how do I move on with a standing derm. appointment every three months for the next two years?
Like so many of you have said on these boards, I look at my children and cry at the thought of not seeing them grow up. What if this happens again?
Grateful for each of you and this forum. PamOctober 22, 2013 at 8:32 am #62800elsapParticipant
I am new here, too. Diagnosed last Thursday, joined a couple of days ago. Waiting to have WLE. I totally understand how you feel. I have been most hurt by the lightness with which my two closest friends took the news. One actually expressed sympathy, said she did not know much about the disease and was going to inform herself. Called me back after 10 minutes and pretty much said, “Oh, puh-lease…!” like I was whining over a tiny little bit of cancer.
I also do look at my moles as the new enemy, and then I feel guilty because my body is also my best (only!) tool and I have to cherish it.
And yes, I cannot get enough of my child right now. My beautiful, beautiful child. We will get through this, Pam – we MUSTOctober 22, 2013 at 11:00 am #62801tbeauParticipant
Welcome to the forum. Sorry to hear of your diagnosis. I agree that it is difficult to hear from others that your diagnosis is no big deal. I have told very few people of my diagnosis. This forum has been very helpful because we are all going through or have gone through the emotions surrounding a melanoma diagnosis. It is normal for you to be emotionally fragile. It will get better with time. Take care.October 22, 2013 at 11:37 am #62802cohanjaParticipant
this was an interesting piece on resiliency:
optimism and strong social support are keyOctober 22, 2013 at 1:16 pm #62803
Thank you Everyone, for your kind welcome. Elsap, best of luck with your WLE!!!October 22, 2013 at 2:34 pm #62804Catherine PooleKeymaster Yes, it is normal to be sore for a while after the SLNB. Lymph nodes are very sensitive to being prodded etc, and it takes a while to recover. We are happy you found us and this is a safe place to ask questions and get support. Wishing you a speedy recovery.October 22, 2013 at 8:24 pm #62805LPLPLPParticipant Hi Pam I know EXACTLY how you feel. It’s a lonely place. And you’re right people are clueless. I was diagnosed in March 2012. I have 2 small children ages 6 and 5-this is what is the hardest to cope with. In some ways I feel as if I failed them and I don’t want to be the cause of their sadness.
In 2000 I had a mole removed that had severe dyplasia. They sent it to 2 different paths because they could not decide if it was melanoma or not. When I went in for WLE they saw another mole and decided to take it. That mole path said that it had melanoma like features but ruled it severe dyplasia.
Then in March f 2012…..
1) in situ
2) clarks level 2 / .40mm / no mitotic rate/ no regression /no ulceration
3) clarks level 3 / .70mm / no mitotic rate / no regression / no ulceration
I’ve been clear until I found that lump, which was the pre cancer just last week, the results came in this am.
In June of this year my cousin (Eddie Baust) who was 49 passed away of melanoma. He had a mole that had been bleeding for a number of years and never went to the dr. He became lethargic over night, and wasn’t making sense. My parents took him into the emergency room after his dr said he had a virus and gave him antibiotics. They found that the melanoma had spread to his stomach, colon, liver and brain. He lived for 2 months.
In talking with an old friend (Diana Spence) over the summer, I found out her father in law passed away from a melanoma mole on his head.
Just recently my friend (Pete Doucette) his friend passed from ocular melanoma. She was in her early 30’s-left behind 3 kids. Her name was (Melody Setticasi)
Believe it or not, my girlfriend (Christine Brown Smith), her dog was put to sleep last week due to melanoma that went to his lungs.
Not to mention the other night before my Oct 15 appt. in which they cut out the lump, my husband I watched a movie called Down The Shore, the girl died of skin cancer.
So, with me trying to remain positive and take of myself it seems like I’m surrounded by this.
I just keep telling myself to breath…..all of this after March 2012.October 23, 2013 at 5:21 pm #62806hillcountrygirl1Participant
I am sort of reeling over someone being so insensitive as to say to you, “you got the good cancer”? As if any cancer is good, and in reality, we all know that Stage 1 is a good place to be IF you have to have melanoma, but melanoma is unlike most other cancers in that there are not a lot of options once it gets past Stage 1. There isn’t a lot of “watching and waiting” for breast cancer, for example! I also had those sorts of reactions, but I almost preferred them to my MIL bursting into tears! LOL!!! That was kind of weird (and I then explained what a good place Stage 1 was!).
I think the best reaction to ANY diagnosis of a serious nature (diabetes comes to mind…there are people who dismiss Type 2 diabetes as something fat people get and if they would just stop drinking sodas they would be fine!), is to let people know you are concerned, and that you are there for them if they want to talk. I get a little annoyed also when my friends told me “Oh, I had that”, when in reality they had an AK burned off. Or even a basal cell. I have had multiple basals and even a squamous and nothing compares to hearing that melanoma diagnosis.
My oncologist told me yesterday that melanoma would leap out of your body and onto your glasses if it could…that is how insidious it is IF it get into your bloodstream. It is a very scary place to be and nothing to shrug your shoulders at. Just getting over the WLE is not fun, and I didn’t have an SNLB, but I have read how difficult that is. YOU are your own best advocate. Be thankful for the Stage 1, but be vigilant so that anything else that crops up is gotten early.
It helps me to call it “stupid melanoma”, and to kick it out of my mind when I start to worry. And, I love how Catherine always says, “Go live life”! This forum is a great place to talk about your worries and fears and then after you vent to all of us, you can go live life!!! And forget about STUPID melanoma!
Now, you need to get better from the surgeries and be a little selfish and think of yourself for a bit. I give you permission!
BetsyOctober 23, 2013 at 9:53 pm #62807
You guys are all the best! Thank you! PamOctober 31, 2013 at 3:03 am #62808zoiksParticipant I just had my second WLE for melanoma and my first SNB just yesterday. My first WLE was for an in situ back in 2006. I can tell you that the paranoia never really leaves, but that’s a good thing. It keeps you looking and vigilant. Going to the derm every three months is a good habit (for lack of a better word) I would not have caught my second one so early if my husband hadn’t noticed it looked “odd” and it hadn’t been second nature for me to make the appointment to get it biopsied. My derm and I were both surprised when it came back as a melanoma – I’d had many clean biopsies between 2006 and now – but glad that we got it while it was still thin. I’m not sure that would have happened if this was my first and I’d been unsure or nervous about what to do.
I also have young kids and that makes the worry 100 times worse, but it helps keep you sharp. Go to your derm appointments, tell them you are going and what you are looking for. It reminds you why you are doing it and sets a good habit for them when they grow into pale, moley adults like we are.
Stop Googling so much (this is advice I need to take from myself). Most of the melanoma stories you find online are the exceptions to the rule, a self-selecting sample of the most dramatic cases. The happy stories of people living for 30 years after finding a melanoma don’t make it high up in the Google rankings.
As for people who don’t get it or say “oh, I had one but got it cut out,” It is infuriating. I haven’t found a way to get through to them. I actually went on a girls weekend after my first surgery and many of the women, who knew exactly what I’d been through and saw may scars, went to sunbathe, in Miami at noon, talking about “getting some color.” Facepalm.November 2, 2013 at 7:21 pm #62809
I hope all is okay with you and your second WLE.
I have already gotten better mentally and emotionally. (Thank goodness.) This experience no longer rules me. I am vigilant, but don’t want to create fear in myself when there’s nothing concrete to fear.
All best to you and yours, PamNovember 4, 2013 at 4:12 pm #62810Catherine PooleKeymaster
Yes, there is a fine line you walk between vigilance and hypervigilance! I know from experience it is far better to have faith in yourself and your body that you will catch this early and that there is more to life than melanoma!
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