Wilma is a skin cancer specialist nurse, here to answer your questions about different...
I was just wondering if anyone out there can help me with a couple of concerning factors on my histology report.
I was recently diagnosed with stage 1A had my WLE and results were clear.
Alot of factors on my histology were good, 0.6mm breslow, Clark level III, no ulceration, no mitotic factor etc.
The things that really alarm me are that it had excessive regression and no lymphocytes were present. After alot of reading I can see that these are really bad factors, if the tumor has regressed alot this does not give a true reading of the initial breslow thickness, therefore my melanoma could have been alot thicker than 0.66m putting me at higher risk of spread and matasis. Also no lymphocytes present means there were none of the little guys fighting my corner, why??
I just wondered if anyone else had any input or experience with these factors?
I so worried now that my staging could be way off because of the excessive regression
Thank you in advance and I'm so very sorry we are all in this awful place.
Hi Buzzy10, welcome to the melanoma group although of course I'm disappointed that you have needed to join us. I hear a lot of anxiety in your post when its a shame that you cant be breathing a sigh of relief that its 1A. That is so natural as that's how I felt at times. I cant help from personal experience as I had no primary found, its assumed that perhaps because my own immune system dealt with it years before (perhaps as a child) and then suddenly at age 56 melanoma popped up in many lymph nodes for me back in 2015.
One way of looking at things (but that doesn't answer your question) is your melanoma has been removed and you are currently clear, but ......you will be encouraged to check your skin and your lymph nodes and you will have follow up appointments that may spot a recurrence more quickly now that your melanoma's dealt with and you are in the system.
I had a further recurrence in my lymph nodes in April 2018 so I hate to admit I'm an expert in feeling anxious and glass half empty, not all the time but wobbles happen and have to be listened to. I 'm wondering if this is just a wobble for you now, you've probably had a big shock recently and after all critical life insurance does make a pay out on 1A, if your lucky enough to have it, so it doesn't mean it wont reoccur so that's a justifiable wobble.
I was wondering if you have a skin cancer specialist nurse who is your key worker and if you have her number. They have a remit for looking after us melanoma patients and that includes the anxiety side of things. When I was unsure about surgery to my lymph node and felt like I was getting conflicting info from different consultants I was glad I gave mine a ring. They let me talk out what I was anxious about and with their medical knowledge explain things not in general but for my case. They may also know of local support groups or Macmillan courses that may help with fear of recurrence. Next week is the melanoma patient conference, their videos will go on You Tube after the conference and they have a session on watch and wait that might interest you.
My thinking is the pathologist can only measure what was present at that time and not what might have been and the oncologists have national guidelines about what the next actions are for follow up or adjuvant treatment. So I'm thinking your results are what they are, and wont alter the planned follow up, but I might be missing something that your worried about as I have not had a primary.
I'm no measurable disease at the moment so keeping safe in the sun, exercising, eating healthily and helping my immune system are what I'm currently concentrating on. I hope my rambling help in some way until someone else can join in with any personal experience they feel will help you.
Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.
Sorry to meet you on here, but it’s great support.
My pathology report is nearly identical to yours. I still analyse my pathology report, I had regression and could not find the answer to this, so I went back to my skin nurse to ask the pathologist the question. My regression was 0.6mm and I asked if I should be 1.2mm, my skin nurse has advised that she could arrange for me to see the pathologist to ask questions. She has confirmed that my depth is 0.57mm and not double. My TIL was brisk, but I know much about this, but with regression your body was responding.
Do go back to you skin nurse, google can twist your melon.
There are so many mixed reports on the internet regarding it.
I spoke with my dermatologist today and he advised that there is no way of knowing for definite, he said that normal moles can actually regress before melanoma even appears. Also said that I wouldn't be treated any differently even if it was deeper at some point. Basically said I wouldn't be offered an SLNB as that wouldn't necessarily give a definitive answer. This I find odd as anything from a 1B is offered a SNLB.
So now I feel like I'm a ticking time bomb, basically just waiting around to see if it appears somewhere else! In a way I sort of wish I had never asked for my pathology report and just kept with the 1a diagnosis and left it at that.
What have you been in told in regard to recurring?
Are you in the UK?
Thank you for your reply.
Yes anxiety is a 24/7 thing for me at the moment. It's all still very raw as I found out about my melanoma 4 wks ago and in that time I have had my WLE.
It's seems melanoma is a very unpredictable cancer and there really are no answers to all our questions. The only one I want answering is am I going to live or die and obviously nobody can tell me that! Stupid I know!!
Your right in what you are saying my treatment still wouldn't be any different, I wish I had not seen that pathology report now.
I have chatted with my nurse and dermatologist but it doesn't matter what anybody says to me I still wake up the next day with the same thoughts and anxiety.
I wonder if every cancer patient feels the same regardless of what type of cancer they have had.
I also think that here in the UK it's dealt with differently to the US and Australia. There seems to be alot more expertise and more available treatments.
It sounds like you are a strong person even with your wobbles. I am glad you are getting through it though and still fighting fit.
Hopefully my head will sort itself out somewhere down the line, at the end of the day I just have to suck it up.
Thanks again xxx
i am in the UK. What I have found is that it is postcode lottery on what you are told and what treatment you receive. I am being checked for 1 year and then discharged, I know some that are checked for 5 years at Stage 1a.
I was was told the it would be 1-2% chance of reoccurrence, and like you I feel a ticking time bomb, I have read too much and scared myself silly.
have you have a vitamin D blood test yet, if not, book in for one and have your levels checked every 6 months
i was diagnosed in Jan and this is all still very raw to me.
Yes had my bloods done, was ok.
Like you I am being monitored for a year only as well which I think is rubbish.
Iv not had a great start to this journey as it is as my consultant told me originally that my mole was nothing to worry about and that I should leave it and get it monitored every 3 months. Imagine if I had listened to him! I know these things are not always straight forward and easily spotted but still its destroyed my confidence in my Dr.
The internet really is horrendous, it seems like a death sentence from what you read on there!
I think the recurrance thing bothers me more than a new primary. I think maybe I would have felt slightly better had I not had the extensive regression thing. Saying that though my dr did say stage 1a's can recur when there is no regression though it is quite rare for stage 1's to recur. I dont even know what I'm saying anymore, ah!!
I wake up in the middle of the night feeling my armpits, I honestly think I'm driving myself mad!
I have my appointment next week for my first skin/body check.
It's nice to talk to you Mandy please keep in touch, we can drive each other mad!
I am 44 married with two children, I really cant leave them!!
We can google so much and get very conflicting information. I am still askin questions on my pathology, I have not seen a dermatologist only a skin nurse, so I had to go Private to see a derm. I don’t have many moles, but I have had some pictures taken of my body so I can compare each month.
i had the same experience with a mole, went a year ago and was told to watch it, went bad 6 months later and insisted they refer me, which they did thank god.
The odds are in our favour, but like you I worry about recurrence, hopefully it will get easier for us. We have to be vigilant and sun safe now.
i am a 46 year old Mum and like you I can’t leave!!
defo keep in touch
Hi MLD73 and Buzzy10
I hope you don't mind me butting in but I noticed that you were worried about the treatment and aftercare you have both received and I thought I'd try to reassure you.
You are both Stage 1a which is the best case scenario, other than not having melanoma at all! If you click on these NICE guidelines you will see that only Stage 1b and above have a sentinel lymph node biopsy. So the fact that you haven't been offered an SLNB is correct. Something to bear in mind is that a SLNB only gives your dermatologist an answer as to whether your melanoma has spread at that moment in time. It doesn't prevent the spread of melanoma or melanoma recurring.
The guidelines also show that for Stage 1a patients follow-up care only happens for 12 months, so again what you,ve been told is correct. I noticed that you felt the length of time for follow-up care was a 'postcode lottery' Mandy and that you knew of stage 1a patients who have been told that they will be followed-up for 5 years. Are these patients in this group or are they people who you've met while having your biopsy or WLE? It would be interesting to know which area of the country they live in.
I noticed that Buzzy10 you said that treatment for melanoma in the USA and Australia was different to here and I wasn't sure when you said treatment was better whether you meant here or in the USA and Australia. If you meant the latter I'd be interested to know how the treatment in these countries differs to treatment here.
Hopefully this will reassure you that you are receiving the standard of care that you should but, if you have any other questions do come back.
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To be honest, I wish I never saw my path report as it has opened up a lot of anxiety. My nurse confirmed I was stage 1a after consulting the pathologist.
So postcode lottery, I am on a few forums and groups and have met a few people on them with their experiences this is where I have found out variations of medical follow up timelines, all over the country. I think some people get lucky and have an amazing dermatologist, for me I have only met the a skin nurse and that is it. I mentioned this to my skin nurse who advised me that follow care is decided at the MTD meeting and for how long. I will go private after my follow up care if not before.
Thank you for your support and reassurance. I think anxiety, googling sends our minds into over drive and we all hope that google can give us the answer we all seek.
I never saw my path report Mandy because at the time I didn't know that I could see it or that it might give more information than my consultant was giving me.
I worked out for myself that my Stage was 2a, although I could have asked, but again didn't know anything about staging at first. You are right that Google will never give you the answer that you're looking for and that is that your melanoma will never return. All any of us can do is be vigilant.
I am surprised that you have found other people who are Stage 1a that are getting follow-ups for longer than the recommended 12 months. I know my hospital sometimes struggles to give me my 3 monthly check-ups on time so goodness only knows how they would cope if they were following up Stage 1a patients for longer than the guidelines suggest.
I don't think it matters whether you see a skin cancer nurse specialist or a consultant for your follow-ups. Both should give you the same check-up and if the nurse finds something that she's not sure about she would refer it to a consultant.
I think that if you are struggling to cope with anxiety over your melanoma diagnosis then you should have a word with your SCNS to see if you can be referred for counselling. If she isn't able to arrange this then have a chat with your GP.
I think as I found out it was Melanoma during my biopsy and before i had my results did not help with Mr google.
I am on a waiting list for Macmillan and my GP has prescribed me tablets too.
My appts have been on time so far, but I will go private for a safety blanket until I am ready to go alone.
Take care of you
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