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April 12, 2013 at 3:00 pm #21185
My husband has recently been diagnosed with a 2.14mm superficial spreading melanoma on his ear. There was no ulceration and low mitotic activity. Sentinel node biopsy was negative. He actually ended up having a PET scan pre- sentinel node biopsy which showed a hot spot in his bowel (surgeon didnt think it was necessary but dermatologist was keen to get it). CT with contrast was unremarkable so they think its a false positive and they’re repeating scans in a month. I think his stage is 2a based on the above info. We’re attending a melanoma centre and I feel his care is in the best possible hands but I’m terrified. We’re expecting our first baby in July so it’s been a complete emotional rollercoaster.
His way of coping is to ask no questions / do no research. Hence me working out the stage rather than knowing it from doctors appointments. I on the other hand spend hours driving myself crazy looking up survival stats. I know he isn’t a number but I’m just desperate to think we have a good chance. Coping with the diagnosis and risk of recurrence hanging over us is horrific. For the moment the plan is repeat CT which please God will be clear and then 3 monthly reviews. He isn’t for any adjuvant treatment.
I would love to hear from anyone who had a similar depth melanoma. I have searched the stage 1 and 2 forums but almost all the posts are stage 1’ers. Oh how I wish we were one of youApril 12, 2013 at 5:17 pm #60046Catherine PooleKeymaster
Would it help you to look at our stage III folks and see there are MANY survivors, long term, there? That would perhaps help along with trying to live in the moment and not try to look into the future or past (neither of which we can control.) Your husband is handling the best way he knows how and many don’t ask questions because they are scared. All of this is normal and ok. Just keep up with the check ups and scans and take lots of deep breaths.April 12, 2013 at 5:26 pm #60047 Thanks Catherine – you’re so right. I spend my whole time fixating on what if – which is no way to live. My husbands strategy of just living and taking one day at a time is a far better approach.April 13, 2013 at 9:30 am #60048waspkfdParticipant HI NC!!!
I was diagnosed this last winter stage 2b.. you can read about what Ive been through the last 3 months here
I do wish you well!! everything so far for me since the WLE and SNLB Ive been ok
someday days I get kinda wrapped up in the what ifs..
Buy hey Ive made it 44 years so far and I bet I make it another 44
You have got to have positive thinking I know its hard right now. Catherina is awesome an helped me through the dark days she is an ANGEL!!
Please vent here on the forum there are plenty of people that will love to help and pull ya through!!
Trust me your husband is not just doing nothing hes loaded with questions in his mind with and not sure were to place the first foot!!
My first thoughts were not about me it was what is going to happen to my family.. Be strong and be strong for him!!
also Your in the right place for questions, when I saw the oncologist she handed me a list of web sites and this was the top one!!! good luck to ya , and please feel free to write anytime !! DAVEApril 13, 2013 at 2:38 pm #60049
Thanks so much for your reply and words of encouragement. I had come across your story earlier – sounds like you’re doing great and have the right frame of mind. Great to hear from someone a year down the line.
My husband is amazing and I didn’t mean it to sound like he’s “doing nothing” – I know he must be terrified deep down – he’s just chosen to live life and not dwell on the stats etc. Sounds like your outlook on life too. Hes a complete inspiration. I’m just desperately trying to stay strong for him and hide my fears from him – the last thing he needs right now is my negativity. I suppose I’m used to him being my rock and now I’m trying to be strong alone. I think I’m also still in a state of shock. Literally before the lesion was even removed the dermatologist was taking about metastases. One of his first statements was that you were never out of the woods and that even if you got to 5 years with no metastasis – you could get one the next day. I know he just wanted us to be aware of the reality but its left me terrified. The day after the melanoma was removed – my husband got a complete facial palsy. Again the dermatologist immediately decided it was probably a metastasis compressing the facial nerve – thankfully a few days later a normal MRI outruled that and after a month of eye lid taping etc he has recovered. Then the PET scan – which I’m praying is a false alarm.
I know my story is like so many others – a real rollercoaster! I did a mindfulness course today – all about focusing on the now – hopefully I can put it into practice!!
Thanks again for your lovely message and positivity. I feel so much better since joining the board and seeing others strength and success stories.
NCApril 14, 2013 at 12:07 am #60050tbeauParticipant
Welcome to the forum. I am sorry you had to join. I was diagnosed with nodular melanoma in July of 2012. I am only a stage 1b but I hope I can offer you some support. My intitial diagnosis was a shock. It was only by pure accident that I was diagnosed. The depth of my tumor was 1.25. I know I am a different stage than your husband but I can tell you that the shock of the diagnosis was absolutely overwhelming. My husband has been very quiet about it but has told me many times that I need to remain positive. It has taken me a good 8 months to recognize that positive thinking is very important and that we do not have a lot of control over this crazy disease. Things will get better, as the shock wears off. I hope this helps you. I know I was so overwhelmed for several months that I did not speak to anyone about it. I still have not told many people. Maybe assuring your husband that if he wants to talk to you about it then you are there but at the same time respecting his current approach might be helpful. This is a scary journey to take but it gets better. I know because I do not think about it all day everyday any more….and I did for several months. Take care.
TheresaApril 15, 2013 at 12:11 am #60051
Thanks Theresa for your advice. It’s great to hear from someone else who is doing well and been on the same stressful journey. I really hope there will be a day soon where melanoma doesn’t dominate my thoughts – as you said its so overwhelming – I think it’s going to just take time. I will absolutely respect my hubbies wish to get on with things – he’s the one sleeping soundly at night while I obsess over things so I need to learn some of his coping skills I think! You’re right – being there to talk if he wants is the most important thing. Thanks again for your support – so glad I found this forum.April 25, 2013 at 1:43 pm #60052jenseanParticipant I know exactly how your husband feels. Last March 2012, I was diagnosed with stage 2a melanoma. My depth was 2.3 mm, no ulceration, sentinel lymph node negative, and CAT scans all negative. I needed to have a skin graft on my upper right arm. The psychological impact is much worse than the physical. I am completely healed from my first melanoma but since have been diagnosed another two times. I have what they call “dysplastic nevi syndrome” which means I have more than 100 moles on my body and any biopsy I have of any of them normally turns out “mildly atypical”. This puts me at very increased risk of having multiple primaries so it is not something that your husband should really worry about unless he has a history of dysplastic moles. My second one was diagnosed in October 2012, 1.8 mm stage 1B, and that one was located on the exact same position on my opposite arm. That one did not require a skin graft and sentinel node and CAT scanning were also all negative. My third one was just diagnosed a few weeks ago. It was discovered by my hair stylist on my scalp. My dermatologist normally checks my scalp but this was something that just popped up out of the blue (melanoma is unpredictable that way). It was a very thin melanoma, 0.6 mm stage 1A. I did not require sentinel lymph node biopsy or any other testing. Since the margins that need to be removed have decreased, I did not need a skin graft on my scalp and a plastic surgeon did the wide local excision. The mole was underneath a lot of dark brown hair and I would have never have noticed the mole if it were not for my hair stylist and my surgeon did an excellent job and noone would ever be able to tell I had anything removed from my scalp.
So…..I get what your husband and you are feeling. It is in the back of my mind every single moment of every single day but I will say this……early detection and followup is the key. Your husband is now considered NED (no evidence of disease). I know this is better said than done but he needs to try to live in that moment, not worry about tomorrow or what the future holds. None of us, even people without melanoma, know what tomorrow is going to bring. Yes, the three-month skin exams, physical exams, and routine CAT scans are very nerve-wracking. I cannot be talked to for at least a week before my appointments because I am so nervous but my husband told me that I cannot change what the scans are going to say or what the skin checks are going to reveal. That is something that I have no control over. If something is found, we will deal with it but to worry about something being found every single day will not help us. Matter of fact, the stress really is not good for us. I am a very nervous person to begin with so it is very hard for me to follow this advice. I do a lot of research on supplements that will boost my immune system and have started taking quite a few things….I don’t recommend this unless you speak to your doctor first but they seem to give me more energy and it feels like I am at least doing “something” because really there is nothing else we can do. I wish your husband the best of luck!!! He has a bunch of support with us fellow melanoma warriors.
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