March 5, 2017 at 9:34 pm #12383AnonymousInactive
While of course nobody wants to be an active member of a forum like this I am happy that I have come across it.
Here is what I know for now:
I am classed a 1B
I believe my thickness is 0.54mm
I believe my mitosis is 2
I do not believe there is ulceration
margins were definitely clear
located above right ear on scalp
Now that this language is new to me I will likely ask for a copy of my pathology report during my next visit. If someone can please provide any insight to what I think is where I am please let me know. I am all about getting the right information.
I am scheduled for a second incision as my initial diagnoses was in situ; however, the final results were those I mentioned above. The oncologist said that he did not think a lymph node biopsy was not necessary, and while the initial excision likely removed the cancer- he wanted to do a second one another 5mm from the scar to ensure the margins were clear.
One item I am nervous about is the mitotic rate of 2. I have read different things- and I believe he said it would be more of a concern if it was over 40? Again- I wish I had recorded or written all of this down- which I will when I go back for my surgery in two weeks.
Secondly- I am a 1B with a 0.54mm depth (I believe). I thought this would have been a stage 1a but he said that it was a 1b. Can someone explain this difference?
Finally I have read some of the patient stories. What it does say about these stories is what stage did they start at? Some are telling me that simple stage 1 melanomas can jump right to stage 4? Are there not tests that can be done to resolve this fast spread?
March 6, 2017 at 9:41 am #12385
Yes, welcome to the forum. And yes, no one really wants to be here, but hoping it is a place of comfort, information sharing and contact for you. Sometimes we can feel isolated or overwhelmed with a diagnosis, so it is important to get the information you need and connect with others. feel free to ask away.
Good thing – you appear to have dogged a bullet and it has been caught early by your description. Your pathology and consult with your surgeon should confirm this. 1B would be your stage by what you are describing because of the depth, no spread to lymph nodes (they don’t normally do a sentinel node biopsy unless the depth is greater than .75 or higher mitotic rate – over 5 is more of a concern). The difference between 1a and 1b is that your mitotic rate is greater than 1, where a 1a is 1 or under. Your rumour thickness is under 1 mm so that puts you at a 1. I am glad the surgeon is going in again to ensure clear margins – head and neck can be a bit more tricky (just because of the location of it on the face, but now is not the time to worry about scaring as you just want to make sure it is out. Head and neck can be difficult to treat if it spreads). You shouldn’t require anything else beyond this last surgery. Depending on the hospital, you may also be referred to a medical oncologist (the docs that prescribe adjuvant treatments), but it is highly unlikely that you would be offered something like interferon at your early stage.5 year survival rate for stage 1 b is 92%, so very high and it is unlikely the disease will return. That being said, you will need to be followed by a dermatologist, at the very least, for the rest of your life with an annual screening. You can help this process by also checking the lymph nodes around your neck and chest/underarms – at least every 6 months or better yet, monthly. Just to see if there are any swollen nodes or hard lumps. Over 50 % of melanomas are found by the patients themselves, and I would ask the docs to show you how to properly check or you can google it – there are a number of videos. And of course, there is sun safety – you must be cautious in the sun and wear protective clothing and sunscreen on exposed areas. While the likelihood of developing a second melanoma is relatively low, it is still higher than the average population. Of course, if there is a family history of melanoma, you are at higher risk and there may be some interest in having genetic testing – check with your doctor if this is the case.
How did you find this melanoma? I am interested if you found it yourself or who identified it as suspicious? If you feel you would like to talk with another patient, please let us know.
Annette – Melanoma Network of Canada
March 6, 2017 at 9:56 am #12390AnonymousInactive
Hi Annette. Wow that was an amazing response- and any others out there will be appreciated.
I do feel isolated, I do feel overwhelmed and finding this website is a very good for me as I have a lot of anxiety being a father and husband. So your answers are very helpful not only in clarifying but also comforting.
The scaring I am not concerned about- I am quite secure in that regard but can see how someone younger may feel.
I found this melanoma because of myself, and myself only. I have gone to my doctor for annual physicals and asked him to inspect. He did- and said it was fine. I had some other smaller ones on my back removed- they came back as benign- and he thought the larger one on side of head didn’t need to be removed and that we would keep an eye on it. This was for years until finally I insisted I needed it removed after looking at it in a hotel in the mirror. He then, after my insistence and that this was not a cosmetic request, I was referred to a dermatologist. The referral took 9 months- which I am very disappointed in.
The dermatologist quickly visually diagnosed it as very probable- and sent in a biopsy that came back in situ. This was in November. In mid January I had the entire mole removed with the pathology report provided above.
I am really considering to lobby that mole removal for anything larger than a 1cm in width be covered by OHIP as well. For some reason- people think this is cosmetic. It is not.
Yes- I also think I would like to talk with another patient or success story. What I noticed from the stories on the website- which are amazing by the way- is that maybe needs to also be some of the 92% added that have not had it re-occur as well as if comfortable their pathology.
Looking forward to coming back and connecting with others- I am very happy to have found this website.
March 6, 2017 at 10:14 am #12393
Thank you for your suggestions – yes, we could use a few stories from early stage survivors as well. It is no less overwhelming for anyone diagnosed, regardless of stage, and you still go through all the thoughts of: where has this spread? Is it going to kill me? How do I know it hasn’t spread or if it is going to return? DO they know what they are doing – the diagnosis took so long? Common to most of us. I would be pleased to connect you with one of our peer support people if you want to drop me an email: email@example.com We also have many downloadable resources on this website for patients, including our ‘Melanoma – what you need to know booklet’ which may answer some questions for you.
I would certainly follow up with your GP as well to let them know of your diagnosis (I would assume they will get a copy of the pathology and diagnosis), and suggest that in the future, when in doubt, take it out. They can’t wait until a possible lesion/mole grows to 1 cm. That is too big and for many too late. Early detection is key to survival. Anything that might be a possible melanoma should be removed through punch biopsy or simple excision. Not shave and they should know that, but many are too busy or not familiar enough and don’t take the time. We may be looking at a petition sometime in the next year to raise the issue to each of the provinces as the numbers are very concerning. Something needs to be done for sure.
March 6, 2017 at 10:44 am #12396AnonymousInactive
Thanks Annette. The suggestion for was to add on, and not to be critical in any way. As a 1b with my diagnosis reading that it seems to reoccur in many (which I don’t know how it started) startled me and made me think should I expect to be stage IV sometime after 5 years or is this awful disease have a higher success/cure rate for people with my diagnosis?
I have not decided whether or not to return to my GP as this was too close of a call for them to make another error in judgement.
Right now biopsy’s are free for all sizes for OHIP. My issue is that even if a biopsy comes back negative- why not just take the entire mole out if it is over a specific size? 1cm was arbitrary, I know risk increases after that size so that is why I used it as example. I agree, I think it something should be lobbied as I have also read an explosive rate of new diagnosis (perhaps due to environmental change/ozone and additional UV).
I am going to look through the booklet and may take you up on the support offer. Ideally I am hoping I turn out without it reoccurring and can help future members as well…..lets see!
March 6, 2017 at 10:58 am #12398
We appreciate any feedback and love to have suggestions from our end users – anytime, with thanks. And just to clarify – there is a 92% chance that it will not return, statistically. So the greater chance is it will not spread or return. Most patients are caught early, fortunately, but there are always those who defy the odds and have some progression. That is why it is important to get it caught at this stage or earlier. So odds are pretty good in your favour that you will not have to deal with this again.
As far as mole size, it is only one of the many components that potentially make up a risk factor for melanoma. There are people who have 100s of moles and it just isn’t practical nor warranted to remove all of them. Some have big moles that are harmless. One of the signs that it should be removed is ‘changing’. If the mole is changing, it likely should be removed. Best thing for a GP to do is to send the person to a dermatologist or remove it if it is changing or meets one of the other ABCDE criteria. It is hard to get a good diagnosis with just visual inspection and the dermatologist should be using a dermatoscope to look at a suspicious lesion to determine if it should come out. But, from a patient’s perspective, I think if they feel strongly that it is a suspicious lesion, then just take it out. We agree.
March 6, 2017 at 11:11 am #12399AnonymousInactive
I can’t thank you enough for taking the time to respond to my questions regarding superficial melanoma stage 1b. I hope that it also helps others out there with a similar diagnosis.
I will keep you updated as I am scheduled for my re-excision in a few weeks after my initial skin has healed.
March 21, 2017 at 7:31 am #12579AnonymousInactive
Hello bluejay. I thought I would respond as well. This is my first time commenting on this forum (and signing up finally). I too had something removed that turned out to be stage 1. I don’t know if it was a or b actually. But it was not in situ, I do know that. In any case, I’m slowly creeping up to the one year mark but I do still suffer from some anxiety. It seems to come and go. I was the one who asked to have the mole on my leg removed, my doctor said it didn’t look suspicious but that he would refer me to a general surgeon rather than do it himself (for this I am thankful). The general surgeon also was not overly worried, and I honestly didn’t even listen to him rhyme off the possibilities because I literally did not believe the c word was possible. This was a pesky mole that I didn’t remember having, and it sometimes got irritated from my running calf sleeves. I honestly could have never even fathomed it was anything more than an annoyance. I feel like my world was turned upside down the night I got the phone call about the pathology. I know I am in good hands at the cancer centre I was referred to. I also had a second surgery to take quite a bit more tissue to be safe. I had clear margins from the first removal as well. When I first got my diagnosis, I hit up google. Bad idea. I continued to stumble upon blog after blog of people who started out with one lone mole in stage 1, just like me….but found themselves later in stage 4. My husband banned me from google, but sometimes I secretly relapse. I don’t really have much advice except to say I understand exactly how you are feeling. How do you carry on as though you’ll be on the good side of the statistic? I don’t know, but I’m still trying to work on that. I have 2 little girls and I’m only 38. How did this happen?
March 21, 2017 at 10:35 am #12580AnonymousInactive
Treehugger I can completely relate. I have already been to my doctor with other symptoms that turn out to be nothing. I also have 2 children and can’t imagine not being around in 5 or 10 years.
I don’t think that I am going to start letting this go until my second wide excision later this month which will be another 25+ stitches on my head.
I hope sharing our experiences, hopefully with a happy ending, will help others. Or at least know others are out there that can relate- including relapsing with google searches which I am guilty of too. Keep in touch, I will come back after my surgery as well.
March 21, 2017 at 11:11 am #12581AnonymousInactive
Good luck with your upcoming surgery, I assume you have a plastic surgeon doing it? I did and I think my incision was small potatoes for her, but I was happy to have someone with such expertise. I do think I felt a sense of relief after having ‘extra’ removed, and then the pathology on that coming back good. I had joked they could cut my damn leg off if that’s what they needed to do. Get this crap outta me! It’s still a mental battle though. You keep thinking that eventually you’ll start to feel ‘lucky’ but still I have that nagging feeling in the back of my mind. Will this be my only encounter? Did I really just dodge a bullet? I would suggest reaching out to EAP if you have it and have not done so yet. Talking to someone does and has helped me. When I felt ready to do so, I went public to my facebook friends which was a huge step. I want people to take care of themselves, protect their skin from the sun. If it could happen to me, it could happen to anyone, really. Please update when you can. It’s true we need more success stories because the grim reality that is melanoma, is what you seem to find at first google.
March 28, 2017 at 10:34 pm #12607AnonymousInactive
My latest excision is now over today. I also asked for a copy of the report which I have- and it also states a lot of additional items that I am not familiar with:
melanoma stage 1b
greatest dimension: 2cm (length)
ulceration: not identified
tumor thickness was 0.57
Anatomic level III [what does this mean?]
Mitotic Rate 2
Microsatelitosis: not identified
Another item was Tumor-infiltrating lymphocytes: present, brisk [what does this mean?]
Perineural invasion: not identified
and on and on……
Any comments based on this? Any other item that would be relevant that I might have?
March 29, 2017 at 11:44 am #12608AnonymousInactive
Bluejay: you have found a wonderfully supportive group. In our family, I am the worrier/gatherer of information-not the patient. We began our journey last July and Annette was my lifeline. There is so much online to read and digest. She helped me with everything from understanding the timeline for treatment to recommending a treatment centre closer to home.
Annette: You are amazing. You have no idea how much comfort you bring to all of us on this forum. My husband’s oncologist at Credit Valley is also aware of your wonderful work.
And now for an update: 6 month (from surgery/SNB) CT scan was clean and clear. Next up-3 month dermatologist check followed in another 3 months by the next
March 29, 2017 at 11:56 am #12609AnonymousInactive
Hello again Bluejay, I am also anatomic level III and I also have no idea what it means. I have joined a facebook group called Melanoma Support ‘Melahomies United’ which has given me a lot more information than I could have ever imagined. I hope you are doing well post-surgery. I also have my full path report for my records.
March 29, 2017 at 11:57 am #12610AnonymousInactive
Level 1 : Melanoma confined to the epidermis (melanoma in situ)
Level 2 : Invasion into the papillary dermis
Level 3 : Invasion to the junction of the papillary and reticular dermis
Level 4 : Invasion into the reticular dermis
Level 5 : Invasion into the subcutaneous fat.
April 1, 2017 at 12:27 am #12635AnonymousInactive
Thanks blackj and Treehugger.
From my online searching, the anatomic level 3 is an older way of classifying melanoma stages- also known as Clark’s level? From what I read, if this is in fact what it is referring to, is that they do not pass as much weight on this as they do depth.
blackj what was your diagnosis? Great news about the CT scan. It is great to have a common group for ongoing discussion.
April 1, 2017 at 10:14 am #12638AnonymousInactive
@bluejay: diagnosis was stage 1 melanoma. SNB showed no spread to lymph nodes which was great news. However, my understanding (please feel free to correct me, Annette) is that every case can have a different “most important number”. In our case, it is the mitotic rate (5) which is of most concern and indicates a need for close follow-up. I learn more with every appointment!
April 1, 2017 at 12:33 pm #12640AnonymousInactive
That is great that there was no spread to lymph nodes. You must be the same as be then, a melanoma 1b cancer. What was your depth? I believe these are 2 of the indicators that emphasis is placed on?
My oncologist did not do a SNB, as he stated that it would be done if they thought the mitotic rate was higher than a 2 (my depth was .57mm). He said it would be of more concern if it were up around 20, when then he would suggest CT scans and xrays I believe?
April 1, 2017 at 5:54 pm #12644AnonymousInactive
I believed (and I could be wrong) that under 1mm (and I was 0.7mm) depth, they do not do the SNB. So, the WLE was all I had and frequent monitoring/skin checks at the melanoma clinic.
April 1, 2017 at 11:31 pm #12645AnonymousInactive
Treehugger do you know what your mitotic rate was? Did you ask for a copy of your pathology report? This would likely determine whether you were a 1a or 1b.
My oncologist said based on the report he didn’t think a SNB would not add value, rather only a second WLE (which I have finished this week and all 25+ stitches are healing) as the first was based on the initial in situ pathology report. He believes these margins should come back clear in 4 weeks.
A lot has changed since my diagnosis as well, truthfully I think for the better in regards to lifestyle choices. Another comment I want to mention, perhaps hoping oncologists or doctors should read this report, is for medical professionals to realize how much mental anguish a cancer diagnosis can cause. I have to say, despite this, my oncologist not only goes through my reports thoroughly, I genuinely believe he cares about me. THIS IS PRICELESS for someone going through this. I feel very fortunate, this doctor may have saved my life and is a hero and am so grateful for their level of care, including their support nursing staff and resident physicians around them.
April 3, 2017 at 11:59 am #12648
Thanks for the lovely comments. SO good to hear that all our efforts are helping people. And yes, you are correct. The anatomical level that is on the pathology is what used to be used to stage melanoma – called the Clarks level – and referred to the layers of skin that the tumour had invaded. Since 2009 a newer staging system – Breslow -came into use that takes into other factors such as mitotic rate, depth of the tumour, ulceration etc to help predict the risk of spread and the treatment protocol. Pathologists still use the Clarks level on their reports and final staging is given and determined by the oncologist or surgeon. Further updates to the staging are underway as we speak.
Tumour infiltrating lymphocytes are basically white blood cells – they are activated when a foreign body or substance/virus is present – they are the killer t cells that go out to attack cancer too – so just indicating that the fighting forces are present – a good thing.
April 3, 2017 at 12:51 pm #12651AnonymousInactive
I have my full pathology report and under mitotic rate it says ‘none identified’. I guess that is a good thing?
April 3, 2017 at 1:07 pm #12654AnonymousInactive
That is a good thing treehugger. Was their ulceration?
If your depth was .7 like you said with no mitotic rate and no ulceration you’d be a stage 1a (good!). My depth is .57 but I had a mitotic rate of 2 which made me a stage 1b.
April 3, 2017 at 1:13 pm #12656AnonymousInactive
No ulceration either. So, this is good news I guess? You really hit the nail on the head about the doctors understanding the mental anguish. Mine have all been wonderful, but perhaps I just don’t deal well with these sorts of things. I have certainly had my moments. I talk with someone through EAP, I have talked to my GP quite a bit, and my derm at Sunnybrook is incredibly kind and caring. I guess, you’re just never really prepared for a cancer diagnosis. I don’t think there’s anything I fear more in life? I am a control freak, and I like my safe bubble, I have a wonderful life with a great husband and 2 little girls. I guess you could say I was blindsided. I’m ok, but I think I believed I’d be in a better place by now…I still have my days. Funny how after all this time I didn’t even know if I was ‘a’ or ‘b’. Thank you for your messages, I do appreciate them (blackj as well).
April 3, 2017 at 1:19 pm #12658AnonymousInactive
The mental anguish is brutal for me as well- I have a great wife and family as well. This is why I am glad to find these forums and find them important, including having people like Annette watch over them and provide her 2 cents.
The 25-30 stitch scar from the WLE on my head is really nothing, it heals and at my age I look past it easy. It’s the not 100% knowing if they got it all or not, and checking for lumps. I don’t want lumps or bumps or any sort of things pop up!
April 5, 2017 at 2:11 pm #12687AnonymousInactive
Annette and forum community,
How is your knowledge regarding the melanoma AJCC staging updates to start in 2018?
This new updated staging suggests to me (.57mm depth and 2 mitosis [see pathology above]) that I would be classified as stage 1a? Any opinions from yourself or other health care professionals?
I am hoping this also suggests an even better prognosis if caught earlier, rather than a way to just reduce costs on procedures.
April 18, 2017 at 1:38 pm #12785AnonymousInactive
For those melanoma 1b or those seeking information about stage 1 staging which is changing come January 2018. I came across another article and again it states mitosis is not taken in consideration for thin melanomas, using 0.8mm as a cut off for non-ulcerated melanoma- as well as rounding up to the nearest .1mm. Therefore, in cases like mine, it would leave me with a .6 depth (.57 rounded up), non-ulcerated, mitotic rate of 2 is not considered- making me a 1a.
This change in AJCC staging is to start January 2018.
May 8, 2019 at 6:23 am #24563Robert RenyMember
Melanoma is rare, If melanoma is recognized and treated early, it is can be cured, but the symptoms are often neglected making it fatal.
Megan DiDio had a mole on her face, her father advocated her to see a skin doctor, but according to the doctor mole ‘looked fine. However Megan was not convinced and requested her doctor to perform a biopsy.
Check out her biopsy results
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