- September 21, 2019 at 12:06 pm
Firstly, may I send healing prays to all fighting this horrible MM.
I have posted on here a couple of times, my anxiety is not good and I am on meds. But questions are floating round my head and google is not a good place to visit.
I only have a skin nurse here in the UK to ask questions to, I have never seen a dermatologist and not even on my 3 month check ups, so the questions I ask dont get answered or brushed over… I just keep being told I am low risk and dont worry (I am a worrier). Dx’d with Stage 1a
I would like to find out what makes a thin melanoma high risk?
I am so super scared, never been a confident person.
Thanking you in advance and sending lots of love to you all.
- September 21, 2019 at 1:12 pm
I think that you have already heard this before, but stage 1A melanoma is, by definition, low risk. If we knew what made a stage 1A melanoma high risk, it won’t be a stage 1A anymore. These higher risk melanomas would be grouped and upstaged to a higher stage. That’s the whole point of staging, to provide information about prognosis, including the risk of recurrence. For someone with a stage 1A, I believe the 10 year survival rate is about 95%, and that includes people who died of other causes, such as a heart attack. I think the melanoma specific survival, ie your risk of dying from melanoma in the next 10 years, is negligibly small, maybe 1-2% or less. Some thin melanomas do come back after 15, 20, or even 25 years, and that is somewhere in the 5% to 10% range (rough estimate), but we do not know which ones would. All things considered, these odds are very favorable. If that makes you feel any better, there are so many things that can go wrong over that many years, that it is near pointless to worry about the minuscule risk of stage 1A melanoma recurrence.
The best thing you can do right now is not only keep your skin checks, but be vigilant about any changes on your skin. Know your moles, and know if any of them starts changing. I have made the high resolution full body pictures about 4 years ago and they help a lot. I go back and check them and am reassured that the mole I am worried about has not grown or changed. I only had atypical moles so far and not melanoma, thanks Goodness, but if I do develop melanoma in the future I will definitely keep updating the pictures every few years to make sure I catch anything early on. And don’t forget to check the areas such as your scalp, soles of feet and also female parts and buttocks/ano-rectal area. Physicians often overlook these areas and it is up to us to check them and make sure there is nothing suspicious. Doing so may also give you a feeling of empowerment (as it did for me). Instead of passively relying on a dermatologist, I am being proactive and taking steps to protect my own health. No dermatologist knows my body better than I am, so it is the best thing I can do to protect myself. And it helps with anxiety too.
All the best to you and hugs!
- September 21, 2019 at 1:35 pm
Thank you so much for your reply, I really appreciate it.
I have base photos done by a medical professional so I can compare, I check the first of the month all my body. I only have two moles and a handful of large freckles, so I hope I can see any changes but I am not very confident yet. I am only checked professional for a year and then I am on my own. I am going to see a private derm once/twice a year when my safety blanket as gone.
The reason I ask what makes high risk, is you see stages 1 them go to 4, I just cannot get my head round this… petrifying! Being a mummy too has heightened my emotions.
Just hope each day I get confident and have less worry, but currently 24/7 thinking of MM and progressing.
Many thanks again
Mandy, in the UK, dont you have yearly skin checks included as a part of normal preventive care and paid for by insurance? In the US, any insurance covers it. Especially with the diagnosis of melanoma, every professional cancer organization recommends yearly skin checks by a healthcare professional, preferably dermatologist, for life. It is hard for me to believe that in the UK this essential preventive measure is not covered.
- September 21, 2019 at 5:49 pm
As Bubbles have said, there are some risky features of early melanomas that make it more likely to come back, but these are by definition not present in a stage 1A. If they were, you wouldnt be considered a stage 1A. Stage 1A is invasive melanoma, but no high risk features. I think that statistically speaking, you are more likely to develop a new unrelated melanoma than having this one come back. That is why it is important to do self checks as well, to be vigilant. Early stage melanomas often do not look suspicious, at least initially, but if you know that this small mole wasnt there 3 months ago, you can intervene early. It is not rocket science. If you see something that wasnt there before, or if an existing mole starts looking different, have it checked out.
In general though, the older we become, the more threats to our health there are. I think that it is probably more important to focus on healthy living in general rather than dwell on a tiny risk of melanoma coming back. I know anxiety, I know that it sucks, but I also know that it lies. It will do anything to keep you anxious. Do not listen to it. Enjoy your good life and being a mommy. If anxiety doesn’t let go, perhaps it is worth having some therapy? I did a few years back and it helped immensely. Eventually I was even able to get off zoloft and live my life. I hope you can do too. Hugs!
- September 21, 2019 at 6:22 pm
Our health service (NHS) is free to us. The guidelines under PALS for different stage MM is what is adhered to. So Stage 1a is 12 month follow up and discharged, Stage 1b is 5 year follow up and discharged.. as they follow the guidelines there is no lea way. I will have to go private once/twice a year. I will be certainly monitoring my skin every month and I have pictures to refer back to, it will come with time my confidence.. but the anxiety is pants!! I will have to see a doc to get different meds, these are not working.
I hear you on the health living, its just my brain is in panic mode and worry about everything now. I have had a CT Scan, dental check to ensure my mouth is ok, eyes tested. Its really hard to get any additional scans or tests done here, as they say low risk does not warrant these!!
I will take each day as it comes, and hopefully learn to live again!!
Thank you so much Ellie, take care of you xx
- September 21, 2019 at 3:36 pm
Sorry for your worries. Melanoma of any shape, form or status is a frightening scenario!!! Still, considering, any Stage 1 diagnosis has relatively low risk for progression and death from melanoma if found, removed and the body watched carefully for any recurrence or second primary lesion. Even so, we know that there are significant factors that impact risk within those who have thin melanoma lesions. These include: age, mitotic rate, ulceration, and thickness.
Age: Younger patients tend to fare less well, meaning less than 40 years of age. Here is some OLD data (we don’t really look at Clark’s level anymore but if you are interested) – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/with-melanoma-you-can-never-be-too-rich.html
Mitotic rate: Presence of mitoses increases risk.
Ulceration: Not a factor for you as a Stage 1a patient, as the presence of ulceration in the lesion automatically kicks the diagnosis to Stage 1b – as its presence is a risk factor.
By definition when addressing thickness of tumor – Stage I is: Equal or less than 1 mm. Stage Ia: Equal or less than 0.8mm WITHOUT ulceration. Stage 1b: Equal or less than 0.8 WITH ulceration or 0.8 – 1 mm with or without ulceration.
Here is a 2018 report on that subject: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/data-for-long-term-survival-in-thin.html
In this study, researchers looked at 6263 patients with cutaneous melanoma over 10 years. For the entire group, SURVIVAL (leaving out car wrecks, heart attacks, etc.) related to melanoma was 92% if the thin melanoma was 0.3 mm thick or less. When they really broke the survival rates down for each thickness measure, the only one that had a significant difference in comparison to the others was the break point between those with a 0.8 mm and 0.9 mm lesion. NOW…even there…the 10 and 20 year melanoma survival rates were 93 and 85% for those with 0.8 mm lesions and 81 and 71% for those with lesions measuring 0.9 – 1.0 mm!!!
So….even though thickness is a definite melanoma risk factor in peeps with thin melanomas – risk from thin melanomas is still extremely low!!!!!!!!!!!!! And that is GREAT!!!!!
Further – even for peeps who do progress – even to Stage IV like me – the future is NOT bleak!!!! I don’t think you will ever be in my shoes!! But, I and many, many other peeps on this forum are STILL HERE!!! After Stage III and IV melanoma. Not only still here, but living busy, wonderful lives. So…..my best advice ~ Be vigilant. Keep good tabs on your skin, protect it with sunscreen and regular derm checks. And….LIVE!!! Look outside yourself and focus on things you can do to make your world (personal and otherwise) better. That kind action not only puts worry in its place but uses it for good!!! (Not that easy I realize, but you can do it!!!) Take heart that while certainly a worry and downright pain in the ass, Stage 1a melanoma is unlikely to do you any greater harm. And that there are plenty of peeps like me, Stage IIIB melanoma since 2003, Stage IV since 2010 – who are not just alive and kicking – but currently free of disease.
Hope this helps. I wish you my very best. Celeste
P.S. I thought I remembered your start on this board and sure enough…painful though it is to be here when you have melanoma – I thought some of the responses here were incredibly touching, real, and lovely: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/coping-melanoma#comment-123997
- September 21, 2019 at 4:08 pm
I hope you have a great weekend! Give that sweet girl of yours a big hug and know that she and her mom have ever so much yet to share and enjoy – TOGETHER!!! c
- September 21, 2019 at 5:43 pm
Thank you so much, you have an amazing way with words and I am truly thankful for your response.
I have had some lovely message from this forum, its a journey that none us want to be on and all the information scares us when it comes to our mortality.
I am 46 years old, MM on my lower leg with a 0.57mm and mitotic of 1, when I asked the skin nurse about my mitotic rate she brushed it over, but it worries me!! I have read your story, it worries me I have had no nodes looked at. I had a CT scan on my abdomen as i am having some girly issues and nothing was picked up then.. so fingers crossed my nodes are ok.
It is scary that no other ways of being monitored… guess I will have to learn to live again.
Have a wonderful weekend and thank you again xx
MelanomaMikeParticipantHi Mandy, im Mike nice to meet ya, dont let Melanoma rent to much space in your head, be grateful your at the Stage your at, and another thing, you dont sound happy with your current doctor, go seek out another one! Its your prerogative! (Assuming your an American??) You have to be in good hands and trust your doc otherwise your gunna be the way you are, “Uncertain”! Us folks here at MRF (especially the likes of Bubbles or Ed W. and a few other knowledgeable peeps) can only help you so far, but to hear that your gunna be ok by your doctor that has actual ANSWERS unlike the one you have, and that he/she has a handle on this, that will allow you to really really feel at ease… like Bubbles said, in part, stay diligent!!, look over every Nook & Cranny, under your feet, under your boobs, between your toes, under your armpits, between your butt cheeks, even your eyes! a “hand held” mirror is great if your single or vain, or to shy….Anything out the norm, try and take a photo with your phone and make an appointment ASAP!! Youll be fine, plus you get a cool place to hang out with your Mel Peeps here at Camp MRF!
- September 22, 2019 at 2:38 am
Thank you for your Message Mike. I am in the Uk and with the NHS until next year. I am going private next year to be checked twice a year, just gotta safe the pennies. We all look for reassurance but google does not provide that. 1st of the month I check everything and will do the rest of my life. Thank you again xx
- September 22, 2019 at 8:49 am
- You must be logged in to reply to this topic.