messedmelanocytes

Hi Jeff,

I will wait for others to chime in, but when I read of "tumors" I take that to mean a site on an internal organ such as lungs, liver etc where mm cells have travelled to and set up camp and grown into a tumor. This is different from reference to a malignant mole. 

Good quetion you have asked, I look foward to being corrected if I have it wrong.

I thnk there is somehting to this. My Dad was be ridden with flu like symptoms about 4 months before he died of MM.

It would be interesitng to know if any others have seen or experienced a simialr connection.      

I am in the same boat as yourself having had 2 insitus and then a series of WLEs and more biopsies that came back as dysplastic nevi some of which have required larger re exicision. I'm loosing count but think I am up to 8 cuttings for one reason or another since January.  I am an avid cyclist spending many hours on my bike each weekend and also work out with weights at the gym  for about 5 hours a week. My surgeon insists after each procedure that I do not sweat for two weeks, no gym, no cycling allowed. This I find quite a hardship. I try to get multiple procedures done at once so if I have to be idle it isn't for successive two week periods. It has been tough, lots of restarts for training and slow progress at getting up to top shape this season.    

I see the intrusion into my fitness routine as part and pacel of the fight against MM, it can't be avoided, it is what it is. It doesn't make any rational sense to risk reoccurance by avoiding the surgery so that you can enhance your health through uninterrupted excercise. So, I look at it from the perspective that for me, going through these minor surgeries and having to avoid exercise is all part of my being healthy routine.

If your primary motivator to exercise comes from managing anxiety you could investigate alternative practises for managing anxiety so that not exercising does not trigger anxiety for you.   

Very sorry to hear of your despair and the position that you find yourself in with your health. It is very normal to being asking the questions that you are, but I don't think there are any answers.

Rsearch into MM has brought us great opportinity for surivial over tha past two decades, it is not perfect, but it means that many people with stage IV will beat MM and end up free of disease and able to carry on wit their lives. This was not the case twenty years ago, when getting a stage IV diagnosis only had one terrible outcome. So, we can be thankful and optimistic because of the recent advances in successful treatment.

As for "why you", well why anyone? Cancer, in all it's forms, spares no one because of the age, gender, ethnic origin or socio economic class. It takes only one single cell to replicate after it's DNA is damaged to create a cancer. A scientist once told me that what is more remarkable is that not everyone gets cancer, that some people don't they live cancer free their entire lives and die of old age. This apparantly is a more perplexing phenomenum than cancer! That's how good the odds are that a person will get some form of cancer.

So, don't waste time or energy loooking for these answers, and definitely don't blame yourself or anything you did or didn't do. Take that energy and apply it maintaining an optimistic mind, a strong body and a determined approach to fighting to regain your health, many have and you can too! I sure hope that one of the latest therapies will work for you and you will give us a post about being Stage IV to NED thanks to immunotherapy.        

I'm going back for a re-exision of a dysplatic mole next week. The pathology report  didn't define the extent of the dysplasia. So, that's the couse of treatment that is being applied for me. I have previously had mm insitu at two sites.

The process of re-exision for moles that are not mm seems extreme to me, and its a big hassle  having to deal with the sitiches and bandages and bruising, means being unable to enjoy any sports or recreational activities for two weeks because of the sweating. I read somewhere that the chance of any remant cells becoming mm is 1 in 1,000. My surgeon says we proceed to eliminate those odds because we can, it is a doable thing in the war against mm.    

MathewIII i can totally appreciate your questions on this; I have the same train of thought as I wait for another WLE on a dysplastic nevi for clear margins. My pathology report doesn't say if it was moderate or severe which is odd enough. The way it has been explained to me is that no matter how remote the chance of a dysplastic nevi developing into mm, those chance, even if slim are completely removed by a short procedure, a few stitches and in a week or so you don't even know anything was done, so the benfits are huge in relation to the minimaly invasive procedure. As my doc siad, not doing it, is risky, so why take the chance, this can be cut out and taken down to a zero risk, if we can do that we should.

I only have two  types of markings on my skin, freckles and atypical nevi, none of my moles have even borders, the number of dysplastic nevi would be about 30 or so I'd say, so I guess I will have to get used to being sliced up on a regular basis. It doesn't make sense to play these odds….so slice and hack away they may.      

This is a great an important topic, thanks for bringing it up Katie. It is beneficial to all of us to share the ideas and advice we have been given over the years.

I personally am suspicious that it is even true that we can blame the sun for causing all our troubles with mm.  I would not be surprised if science advises sometime in the future that avoding the sun does not prevent mm as much as we have thought. But still, just in case I have practised safe sun all my life. Now that mm is a fact and not just a fear for me, I have cranked it up a few more notches.

Not all sun screens are created equal. Twenty years ago I was advised to make sure I read the labels on the sunscreen and look for titanium dioxide and parsol1789. I can't find any with the parsol in it anymore. It seems the favour now has swung to Zinc Oxide and Octinoxate. I use two sunscreen products exclusivley: Ombrelle 60 Face and Elta MD UV Sport SPF 50.

The important things about sunscreen making them handy and accessible so that you use it and often, so I have a small one in my purse, and in the glove box of my car. I have a huge bottle on my bathroom and ktichen counters, it goe all over my face and neck in winter every morning before my make up, in summer it goes all overf anywhere clothing won't be  covering. Also, I use make up and moisturizers that include SPF, even if it is only 15, which is what i usually find is all I can get inbedded in these products.

I have read and been warned that it can be misleading to rely on sunscreen. If it does not contain the proper ingredients then it is useless at best and can even be harmful by misleading people into thinking they are protected when the are not. This is especially sad for children who rely on their parents to be dilligent and informed.  It also has an expirey date that should be checked.,  

I am an avid cyclist so I have learned not to rely on sunscreen because it sweats off. That is the biggest problem with sunscreen, you don't know how well protected you are even if you are using the right product if you don't know how well covered you are when you are perspiring. Sunscreen I only rely upon to protect my face and for when I am out doors but inactive.

Sunscreen is our weakest ally, there is so much more we can do.

The best protection is coverage by clothing and shade. I store in the car long pants, an SPF light jacket, hat, socks and runners, just incase I am caught somewhere outside in the sun and wearing a t-shirt or sandles.

I take transit to work, I always have an spf wrap, a hat.  I never leave myself unprepared to cover up if I end up outside longer than I expected. I think this is thee most improtant lifestyle change I have made, its ideal to wear long pants and long sleeves etc. most of the time, but I will wear shorts, tank tops, sun dresses etc., on summer days, I just don't want to get caught even walking when taking transit with uncovered skin.      

I wear gloves at mostly all times, I wear light winter gloves in the spring and fall and wear the SPF nude colour gloves during summer when outside. I keep a spare pair in the car and one in my bag/purse.

For swimming outdoors, I wear a sleevelss wetsuit with an spf swimshirt underneath, wetsuits with arms are not very comfortable to swim in. For hot summer days and when boating, I wear spf swimshirt with long sleeves and a high neck and the leggings. I wear thin socks and water shoes. I have not found any spf socks. I avoid outdoor swimming pools.

For cycling, I go early morning or late afternoon, I wear full leggings. or bike shorts with leg sleeves, I wear a long sleeved very light loose windbreaker jacket with only a sports bra underneath, it has zip off sleaves which I take off on a warn day once i stop under the shade of a tree or cabana. On really hot summer days, I don't go biking. For a helmut, I use mountain biking helmuts, they have larger visors.

For footwear, I threw out all strappy sandles and flipflops, I keep my bare feet in the summer inside a shoe made of breathable fabric with as much coverage over the tops of my feet as i can find. I own a large selection of hats and have fun with them. I'm going to get a sun umbrella for ths summer to use when commuting.

My backyard has been reconfigured to maximize shaded areas for seating, I love my yard and sitting outside to read and listen to the birds. It all matters and every little bit helps I believe. I am an avid outsoors person. I won't change my life, but all these small steps to minimize exposure hopefully mitigates the risk. I have been sun safe all my life, but have amped it up over time and since they have invented the spf clothes added that in as well. I'm not sure if it will help, but I'm sure it won't hurt, I spend a lot of time outside, but my skin won't see the sun. 

Pregnancy can sure alter our skin and affect moles on the stomach and breasts but only a dermatogist can put your fears to rest. I csn understand you anxiety becuase I lost my Dad to MM and have your same fears. But I am also a Mom, and I know how important that role is. You son needs a Mom who is fully present and focused on him, dont let the worry about possible MM take that away from him. You can't control the future, you can't control what may or may not happen as far as MM goes, but you can control how much time and attention you will allow it to take away the time that is yours right now to enjoy. If you have had a dermatologist look at the moles you are concerned about and had them biopsied, if you are sun safe and diligent in monitoring your skin, you are doing what is best, worry steals joy from us and it steals tiem from us and it won't change a thing. My advice is to enjoy what is rather than dread an unknown, it might take a real effort to do that, to consciously deny worry the opporunity to take control, but it is worth trying really hard to overcome that.       

I can relate well to your position because I was diagnosed the same as you were in January but then the dyspastic nevi turned out to be a 2nd mm. I felt a fear that paralized my thinking for about two weeks, but it has passed now. I didn't go for any xrays, but the dermatologist has recommended biopsy of another 3 sites.

I came out of the initial extreme anxiety when I took to heart the fact that worry never cured anything, in fact it causes stress which doesn't inhibit cancer, so its really the wrong thing to be doing. I find  it is helpful to just focus on next steps, for you that's the xray, for me its the next round of biopsies, but try not to think past that because whatever happens next can't be addressed until the results are in, and then it will be under the advice of knowledgable experts who already know far more than i can read on line. Just be sure to be in the hands of an expert your trust and the best one for your situation that you can find.  

Everyone's out look and philosophy is going to differ, what makes sense to one of us won't make sense to all of us. For me, I feel that life and good health is not a right, it is a gift and the gift you get is the luck of the draw. Nobody can take the future for granted, disease especially cancer comes out of left field and blind sides us, the 53  years I've had have been great, I think about all that Im proud of and all that I've enjoyed. I don't know if I'm genetically predispoed to mm and that it will be what takes me out and I don't know when. Mine was caught early, it might mean I stand in a good position in this battle or I could get the worse possible news in 2 or 3 years that it has leaped ahead without warning. But the only thing I can do for that is to learn as much as I can about mm, follow the treatment options others have taken, gain from thier experience and get informed and in the meantime enjoy every day I get that is mine to enjoy, count my blessings, live, love, laugh and forgive becuase my time here might be shorter than I had anticiapted, so, I sure won't be wasting time worrying when I need to be enjoying myself and others.

One of the biggest blessings to count is that mm is no longer a death sentence, advances are happening before our very eyes that are making people NED, there has been magnificent progress in the past 20 years, imagine what another 10 or 20 will bring! I am incredibly thankful for this and all the time, money and effort that so many invest to march on towards a cure.

So thrilled to hear of your happy news! This is an inspiring story for all melanoma warriros. I am curious to know what was the stage of the fully excised primary that was removed in 2014?  

So sorry to hear of the fear you are feeling when you consider this sort of intense familial link to this disease.

It seems logical for a person to think that removing all their moles will prevent melanoma. It would be a great thing if this could work. But as I have understood it, cancer is a disease that attacks organs usually, and the skin is the body's biggest organ, malignant melanoma starts in the melanocytes of the skin. It often first shows up in the moles where there is a concentration of melanocytes, however, it can erupt anywhere on the skin. It is for this reason that removing all our moles, does not prevent the disease.

As a Mom, if I were you, I would raise my kids with an embedded habit of safe skin care which would include SPF clothing, sunscreen, avoiding the sun and monthly skin exames.   I would make is seem like a positive, normal part of life to always be conscious of their skin and sun exposure. You could also do mole mapping photos of them, your dermatogist will suggest the right age to start that, I have heard age 10 is right.   

The best defense against this disease is awareness and early detection. Armed with those tools, it is highly cureable.  

No, he had had lymph nodes removed about 4 months prior to that and they showed 50% infected. He was advised no further treatment needed. He thought he was home free after that. 

I looked up SOLUMBRA and I like what they have to offer. Thanks so much for the tip!