Joycem

Hi
I had a stage 2C nodular melanoma that had been on my arm a long time. It was amelanotic so just a weird pink bump that my primary care doc said was a fibroma and not concerning.

When I finally got it removed it was very deep but no node involvement detected. I had castle testing done and it came back 2b- most likely to return/spread.

At that time I was only offered interferon which I declined due to lack of evidence of effectiveness/likelihood of side effects and my phase of life caring for both children and elders.

6 years out and no recurrence or spread. If immunotherapy adjuvant had been offered to me then I might have tried it though.

Best wishes with your decisions and for a long and Mel-free future.

Hi Ellen,
I had a thick nodular amelanotic lesion node negative and castle test came back in the highest risk group (2b) a couple years ago. Hasn’t made much difference in my follow up which is watch and wait and so far so good. (Chest x Ray every 6 mo, some blood tests, and follow up w onc for 2 years, then derm ongoing every 6mo.)

My insurance did eventually pay.
It is really a measure of risk for mets, another tool but can’t tell you anything certain. My take home is I don’t blow off appts. Keep a watch for any symptoms of met, try keep immune system in shape -eat healthy and exercise and deal with stress in a positive way etc.

Wishing you continued health and joy. -Joyce

Hi Chris, 

Sorry for what you are going through. Try not to read online too much. My diagnosis was 2 1/2 years ago. My nodular mel was 8 mm, mitotic rate was 10. (Not decimal errors) My bump was thought to be benign fibroma so I’d been ignoring it for a good long while. 

Surprisingly my lymph nodes were clear, And I required only monitoring after my WLE. (So far so good)

Still concerned about but have kind of adjusted to the possibility of recurrence or spread at some time. After all no one has a certain future. 

You aren’t a statistic, and reading rates of recurrence etc isn’t too helpful to us as patients we just have to walk the path in front of us and take next best step with the info we have. (Same as everyone really)

Wishing you the best possible results from your tests next week-

Joyce

 

Diagnosed 2c in July of 2016, just close follow up with derm and oncologist. (Chest xrays and bloodwork)  Oncologist suggested interferon which I declined. At 2.5  years post diagnosis I now see derm every 6 months. Wishing you well. -Joyce

Hi Mike,

My mom (nerve pain after shingles) finally got good relief from a combination of gabapentin, duloxetine, and occasional tramadol. The tramadol is a synthetic opioid but lower addiction potential than the oxycodone/hydrocodine which don’t really work welll for neuropathic pain. 

Hope you find some relief soon.

Yes. Thanks for sharing this. 

You are in the thoughts and prayers of the many many you have helped today. Blessings. 

Hi Finn,  Sorry for your troubles. Your diagnosis and surgery sounds similar to mine, (long time deep nodular lesion from shoulder/ back of upper arm, snb negative) but I did not experience any sudden increase in pain after surgery, (took 1 Percocet then a few tramadol the first couple days then just occasional ibuprofen or Tylenol for a few more. Back to work in 3 days (surgery Friday worked Monday)  I don’t recall large areas of bruising, although there was some I think.

So this sounds unusual to me. I would definitely reach out to your surgeon. Neuropathic pain is better to be treated quickly, but  not with opioids. 

Every 3 mo for 1st 2 years, just competed and now every 6 months henceforth.  

I’m 2c, (2yrs since dx) and am also followed without scans.

My onc said the radiation exposure from scans increases risk of other types af cancer, (esp breast) and a few months ago they told me that blood work really wasn’t correlating with spread (elevated for lots of non-cancer reasons and not always elevated by mets) and was no longer standard of care. I Don’t miss all the extra pokes. 

So yes, as explained to me, I basically wait and watch for recurrence or symptoms of mets. I’m not pushing for scans for above reasons, and because I have high insurance deductibles and would rather take a vacation than pay for scan. 

I can sure understand the reasoning of people who feel otherwise though. It’s a tough call I think. 

Hi Savannah,

Yes it can spread by lymphatic system or blood. Spread at nearby lymph nodes is most common but mel can hide out and appear at distant sites months or years after original diagnosis. That is why there is more frequent follow up first couple years.

With longer time from diagnosis risk decreases but is still higher than for people who never had melanoma. Most stage 1 and 2 pts do not progress. Young people such as yourself tend to have better outcomes because your immune system is stronger, elderly people have poorer survival statistics.

Yup, this is sucky to have uncertainty hanging over our heads but that’s how it is. Tricky bit is to accept this possibility but not become hyper focused on it, to enjoy our lives and not let ourselves be made unhappy or afraid about what might never happen. You can study a lot of statistics, but they won’t reflect new treatments effect on survival, and you are YOU  and NOT a statistic. Life is never certain. We just got a big reminder of that. 

Most cancer centers offer counseling if needed to help adjust to this new normal. Be thankful that you do not need to deal with treatments now, and that if you need them down the line there are great people here to comfort and advise and new treatments becoming available all the time. Pray for those on this board who are struggling with active treatments, side effects and worse. 

Blessings, 

joyce 

Great news!!!!

Following my negative SNB, I had dermatology skin checks every 3 months, chest X-ray every 6 months follow up w oncology and surgeons every 6 months for 2 years and now I only have to see dermatology every 6 months. So far so good for me at 2 years 1 month post. 

So our risk is higher, but aside from paying attention to your skin and keeping other healthy habits you can pretty much recover from your surgery and get enjoying your life. 

I asked my oncologist how to not make my self crazy worrying over every blemish, or itch or headache or cough. And he said not to worry over anything that’s been less than 2 weeks, but if something changes and persists in your health then check it out. Still, most things will not be mel, and if it is, there are better treatments coming out all the time and we will deal with it if we have to. 

Blessings, 

Joyce

Yes, totally natural. We can certainly relate. What helped my anxiety most when waiting for my surgery was doing things I enjoy and things that are healthy to get my immune system in best shape possible; running, healthy foods, being outdoors, learned to meditate, went to some concerts. 

Prayers of friends helped me too, and reminders that you are loved and always in God’s good care. (No offense or criticism intended for those of other/no faiths)

You are a strong mama and will be just fine. 

Hi Savannah,

I just want to send well wishes. (Also I love your sunflower.)

Also perhaps it would be encouraging that I had a very deep  (>8mm) lesion and my SNB was clear and only monitoring needed. 2 years since dx and no spread or recurrence and I’ve met lots of nice people, especially on this message board. (Of course I still worry, but good to know so many wise and kind people here if needed, and improvements in treatment coming all the time) 

With 3 wee ones I guess you don’t need anything to keep your mind occupied! I hope you can spare some time to be extra good to yourself during the waiting times. 

Blessings, 

Joyce

8mm+  Amelanotic nodular (bisected by a shave biopsy and actually grew back a good bit before wide excision which was alarming)

SNB clear staged 2c after excision

offered and declined interferon

castle dx 2b

2 years no recurrence but I do feel like a ticking time bomb sometimes 

Just try to enjoy every day and do all I can to live healthy.