How could a mole cause so much grief?

Posted By
Kootenay Kid
8/9/2017 10:21pm
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Replies: 3

I've only been diagnosed for a month so I've just moved myself beyond denial & booked in for Wide Local Excision + Sentinel Node Biospsy surgery.  My story is so similar to many posted here. If you find yourself denying a melanoma diagnosis, reading the personal accounts here will move you from denial into facing a sneaky, nasty, malicious, terrifying cancer.

I've had my neck mole for at least 40 years & it never caused me any grief ... until now. I think it was my dermatologist's intern who said 30% of melanomas begin as moles. My mole didn't hurt. True, it had been getting darker & enlarging very gradually during recent years & I had thought about getting it checked out but any skin spots I'd sheepishly asked GPs about over the decades had been dismissed as nothing to worry about. I noticed other spots & changes on my skin & assumed they were all the result of aging. This week I was checked over by a dermatologist's intern & the derm. They didn't find anything remarkable about any of the other splots or moles on my skin, apart from what the intern termed "the ugly duckling" on my neck = the mole that has morphed into invasive malignant melanoma. Getting a derm appointment in Canada is not easy -- you need a referral from a GP, which means your GP has to deem it necessary. So if you have a spot bigger than a pencil eraser that you wonder about, start asking your GP about it.

My eldest daughter told me her GP checks over her skin every year at the time of her annual breast exam. What a good practice!  With the rigors of every day living, many of us are focused on getting enough sleep, trying to eat as well as possible, getting some exercise, maintaining our homes & vehicles, looking after our families, etc.  & we don't pay much attention to moles. In Spring of 2017 I was at a walk-in clinic seeing an older female GP about a minor breast infection. She noticed my neck mole & said, "you should get that checked out". I didn't do it for another 3 months because I was consumed with cataract surgery during the Spring of 2017 (my vision had aggressively diminished, my eyes were itchy & sore). By late June, cataract surgery was over & had been successful even though the itchiness continues. If it hadn't been for my following up on the incidental remark by that female GP, my malicious mole would still be growing & my melanoma unknown.

My very matter-of-fact GP heard me about the neck mole recommendation & said, "it's probably nothing but I'll scrape it so we'll know for sure". Scraping turned out to be an incisional shave biopsy done with needles of local anesthetic (like at dentist) & a # 10 blade that extracted a 1 cm crater which took about 3 weeks to heal. Pathology came back in early July: pT2a, mitosis 1, vertical growth, spreading melanoma, depth at least 1.1mm (but yet unknown as sample didn't get to the bottom of it).

Consults with derm & General Surgeon followed. My surgery planned for next month is an eliptical 1 cm circle around the mole (total diameter 3 cm) which the surgeon tells me is "world wide standard" providing 95% clear margins. Can anyone confirm or add other info in this regard?

There are 3 nerves in my neck area that are in this area, which if severed, will cause permanent damage; one might cause the left corner of my mouth to droop (like a stroke victim), one might make me unable to shrug my shoulders & the older will make my ear numb. Surgeon says he thinks he can avoid this awful collateral damage but the risk remains. The Sentinel node is for staging so the derm will know whether any more treatment is needed. I'm aware the pathology report will provide the critical info.

Emotionally it's overwhelming to be spun into this medical loop, to have to put my life on hold & subject my body to surgery, to have to tell family & friends that I've been hit with this, to need help instead of being the resource & caregiver. Sometimes I feel angry, depressed, anxious in the same way that many others posting here express when facing the scourge of this disease. I remind myself there are many diseases & afflictions people have endured in ages past, that I've lived 6 decades overcoming or accommodating problems that came my way, that something will get me in the end, but for today I'll try to do the best I can with this situation. Other times when I'm happily doing normal activities, I feel calmer & OK. Some of the posts on this site I can't read because they detail how difficult the path ahead can get & I don't want to embrace it until I have to, if I have to.

I am annoyed at how brutal & crude today's cancer interventions of "slash, burn & poison" are, the amount of money cancer research has had over the decades & how limited management of cancer still seems to be. I do think western society is on the cusp of new treatment methods (genetic) that will make cancer less harsh for coming generations.  It's about time!  Meantime I acknowledge we're living longer & now 1 in every 2 Canadians will experience cancer sometime during their lives, & 1 in 4 will die due to cancer. There are so many types of cancer & research has made more progress with some varieties than others. Melanoma is one of the cancers now employing some improved treatment methods. Let the research continue!

From a public education standpoint, how do we get Canadians to pay more attention to their skin? All young families now use sunscreen on their kids. Is it enough? I see so many young women exposing so much skin I start thinking covering up is a better choice. A very different choice in clothing is made in other cultures. I see so many people with huge tatoos that are meant to be seen, not covered up & I wonder how this fashion works with skin cancer detection?  How do we make dermatologists more available to Canadians -- through smartphone apps? So many people posting on this site note their mole didn't match the posted pics for melanoma. I thought mine was less important than it turned out to be too!   

Does anyone have any comments regarding the best of melanoma care in Alberta Canada? I'm aware the Tom Baker Cancer Center in Calgary and the Cross Cancer Institute in Edmonton are 2 facilities offering melanoma treatment. I'm interested in any personal experiences or recommendations.

 

 

 

 

 

 

Firstly, well done for persevering and getting something done. I too share your sentiment about how could one mole cause so much grief ! It seems so hard to take in and even for me at times I can't totally fathom that out. Its really scary and confusing and makes no sense that something so small can become such a major focus and inconvenience.

I am sure others here will recommend you find yourself a melanoma specialist and hopefully will have good recommendations to share. There is nothing worse than feeling your surgeon is only one Google ahead ( or behind) what you can find out on the net with regards next step treatment. My understanding is anything over 1mm will need 1-2cm clear margins in all directions along with your slnb as planned. My surgery story is complicated but I was lucky enough to find a good plastic and reconstructive surgeon second time round who fixed up the mess a regular surgical oncologist with good intentions created initially, so even if it sounds like they need to remove a lot you should be patched up properly at the time as you live in a developed country.

 

many people do not get melanoma. For thousands of years mankind survived without sunscreen or knowledge and they were highly at risk being outside a lot and no modern understanding about wearing a hat as they hadn't even been invented. Something distinct occurs for those of us here, in some cases melanoma appears in places that have not been exposed to sun or ever sunburnt. Being vigilant as one might be for other cancers seems the key, and there are advancements in understanding and treatments happening constantly for us. This community is a wealth of knowledge, experience and warmth to support everyone who finds themselves here. Reach out and you will find help. Thinking of you and that pesky mole that turned your life upside down. 

Sorry you are dealing with this.  To some of your points (???questions???):

1.  Wide local excision (WLE) is the standard of care and recommended subsequent to diagnosis of all cutaneous melanoma lesions.

2.  Sentinel lymph node (SNL) removal and study is also standard of care and recommended with local melanoma lesions...mostly for diagnostic and staging purposes.

3.  Should you have a positive node....you will then have to decide whether or not to participate in a CLND (complete lymph node disection of the area)...with the newer, more effective treatments for melanoma, which are NOT the standard chemo you seem to be referring to....there is data that such a surgery is not needed.  However, it remains somewhat controversial depending the characteristics of the initial lesion and what is found out about the sentinel node itself.  Here is a post that covers all of that and more with multiple links:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/07/clnd-complete-lymph-node-dissection-in.html

4.  As far as "slash and burn" cancer treatment....Cancer and its various treatments all suck!  No way to get around it...at least right now.  However, esp for folks with melanoma, renal cancers and non-small cell lung cancer...docs are now able to approach their care in a relatively new and better way.  My response to this poster will give you a brief history and breakdown of current care options should you need them:  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/just-yervoy-vs-nivolumab

Hope this helps.  I wish you well.  Celeste

Hi Kootenay,

Greetings from ON. Just a couple of comments:

You shouldn't have any concerns about the treatment you receive in AB, the "standard of care" for mel now is observed right across the country. There is very little in the US, aside from trials for less common mutations, that is not now available here.

I agree that getting into derms is a problem initially and, in general, once you're there, they are way more interested in cosmetic procedures BUT once whatever derm you see knows that you are a mel patient, that will change and appointments should be prompt and regular.

Re. "slash, burn and poison" - there's a good chance that your next surgery will be your last providing they don't find mel after your SLN biopsy. Depending on that outcome, they may or may not remove that group of nodes. After that point, you will find that they are not inclined to perform any kind of surgery. 

Re. Canadians not taking the threat of mel seriously - I agree but one of the reasons why is that we still think of Canada as a "cold climate" country - which is crazy!! Our UV indexes are extremely high! Perhaps the whole of the Arctic Circle will have to melt first before ways are changed. Tanning beds are finally getting the "bad rep" they deserve tho. My sister had a "semi-fair" complexion but dark hair and brown eyes and always had a beautiful tan in the summer. I was so white when I was born my mom worried I was an albino, except my eyes were blue. But I grew up with dead white skin, white blond hair and freckles everywhere - had many bad, blistering burns. My sister has mel, I don't. She started using tanning salons in the winter to keep her tan going and her oncologist blames that directly!!

I wish you great news from your SLNB - no mel spread, no nerve damage and most importantly that you have the best possible outcome from whatever treatment may await!! Take care!

Barb