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Hi everyone, had more of the skin (surrounding the Melanoma) removed May 13th and they also did a SLNB. Last Thursday both the skin and lymph node came back negative. As my surgeon said I am CANCER FREE and in REMISSION.
Now here is the funky thing. This spot that I had was on my arm for almost 3 yrs before I went in so THANK GOD it just sat there doing nothing. As you see with the pathology report (see my first post above) the cells were pretty much sleeping still. And to have this for 3 yrs to see the path report, skin and lymph node negative is huge. The medical staff says we caught this very early but in my opinion “early” would have been going in 3yrs ago.
Congratulations, Gophertee. I don’t agree with your surgeon. You are now CANCER FREE and you are not in “remission”… you are “cured.” Everything points to YOU ARE CURED. It is not coming back. It is GONE. FINISHED. The End.
We can all learn something from your experience. Can you get a photograph of your melanoma before it was taken off? I would like to see what a melanoma, that “doesn’t look like a melanoma” and that sits there for 3 years doing nothing, looks like?
In any case, this confirms what I wrote in another post: we don’t have to worry if we ever get another melanoma again, because if we do, it is going to be VERY SMALL, because apparently in your case, and also in my case, melanomas grow very slowly.
My melanoma was on me for about 30 months (under my hair, on my scalp.) and when we finally took it off, it was .60 mm thick, no ulcers, and less than 1 cell division per square mm.
I am trying to figure it out: why did my melanoma grow so slowly? Is that usual?
Does anybody know how long it took a melanoma in stage 2 to get to that size depth?
Does anybody know if there are cases of “fast growing” melanomas (primary tumor)?
Actually, what you should do is go outside and say “THANK YOU, Sun…”
The sun is not your enemy, it is your friend. Without the sun and the energy it gives us, there would be no life at all on Earth. Plants need it to grow… Animals need it… water evaporates because of the sun… YOU need the sun, so be THANKFUL that we have the sun that gives us life.
But… too much of anything is not good for us… and too much sunlight on your skin is surely not good for your skin… but look at it like this: you ALREADY went through a malignant melanoma, and you survived intact.
This is like measles… if you survived through measles when you were little, you are never going to get measles again… and if you DO get measles again, it will be such a light case that you won’t even KNOW that you had measles again…
In the case of melanoma, the NEXT TIME you ever get a melanoma (IF you ever get another melanoma…) it will be SO SMALL by the time your doctor takes it off (Because now YOU and I are BOTH going to WATCH OUT for another melanoma… aren’t we?) that it will not even be a “T1 a”… it will be an “in situ”… WE will NEVER let a melanoma grow to be anything larger than that, will we? NOT YOU, OR ME.
That means, we will never let it get through the top of the top layer of skin, because we are now “melanoma smart…” Aren’t we? (YES!)
So… congratulations on being cured… but now, don’t freak out and punish yourself, and don’t punish the Sun… Be respectful of the sun, but it wasn’t the Sun’s fault that you got a melanoma… It was nobody’s fault… Don’t blame anybody, and don’t look for what to blame.
It is through. It is over. You are safe. So cool it.
Now go out and say “Thank You, Sun, I love you!” and enjoy the sun… with good measure.
I think you would be safer if you go to a dermatologist and get your moles looked at before you take them off, if you take them off.
If one of them really IS a melanoma, you would not want a “do it yourself cure”… you really would be better served to have it taken off correctly and sent to a pathologist, so you would have a much better idea of what to do next.Cort wrote:
I have acopy of the path report. The issue is the demotoligist did not think this was a melanome and did a shave tissue so the depth is not known yet.
The only hint is in the report-
Tumor infiltrating lymphocytes: Brisk
Clark’s level 3
Diagnois: superfical spreading malignant melanomo at least level 3 measuring at least 0.6mm in depth,not excised
As of yet the staging number is an unknown-I have a consult with our local surgeon tomorrow.
They plan on a lymp node testing at same time of removal.
Everybody seems to be from “the boonies” as you said, including the dermatologist and maybe also the pathologist.
The dermatologist should not have shaved it rather than complete excision… so, he did not think it was a melanoma… that is no excuse for shaving it instead of complete excision.
I can’t believe I am not a doctor, and I can figure this out myself but a doctor who is a specialist has not.
And this report “Tumor infiltrating lymphocytes: Brisk” is very curious…
What does “Brisk” mean?
I think “Tumor infiltrating lymphocytes” refers to the rate of mitosis, but that should be a number, for example “2” or “3” or “4” or “5” etc. per square millimeter.
Which one is “brisk”?
“Brisk”??? What does it MEAN? “a lot” “plenty fast” “mucho mucho”?
Why not “allegro con brio”… or “pianissimo”?
Is this a new nomenclature that he is using?
But in any case, it doesn’t look to me (I am not a doctor) like it is very advanced, so I will guess that it will not be very deep. What is left of it doesn’t even look like a melanoma to me… it seems like the remains of a basal cell carcinoma… but in any case, whatever it is, it looks like it is curable.
Of course, get it excised completely. You might also want a plastic surgeon to be there when it is time to sew you up, to avoid a bad scar… but it is on your shoulder… so no big deal…
Good luck to you. By the looks of the photo, my bet is that you got it on time because you are alert to watch out for melanomas… By the color (the worst I have seen are thick, and dark black), and size (7mm in diameter is not a very big melanoma) and in spite of my next-to-nothing experience, I think the depth was less than 1 mm and you will come out completely cured…
But it was truly “a close shave…” in more ways than one.unclescar wrote:
2 years ago I had what looked like a small red rash very mild right in the middle of my forehead. It was very nondiscript maybe a soap allergic reaction. Saw the derm who said it was nothing maybe a allergic reaction. Gave me some cream to get rid of it. Well it did not work. She then said lets take a sample of it and send it to a lab. Came back as some sort of keratosis. Put me on Efudex. Turned my whole forehead red and seemed to work. Soon the red went away,but the middle started to weep and blister. Derm told me it may just be an overactive oil gland. She informed me that I may need to have Mohs surgery. 10 months from the original lab work, My Wife set me up with a different Derm. The first time she saw the red spot she was concerned and took a sample to send to John Wayne Cancer Center.That monday she called us in and let us know that it was a melanoma. The punch biopsy made it a In situ, and she already booked me for the oncologist at John Wayne Cancer Center ( JWCC).
I am surprised that a dermatologist did not recognize it as a melanoma, to begin with… and then a second dermatologist also did not recognize it as a melanoma, otherwise she would not have taken a sample, she would have excised it completely.
Do you have pictures of what you had, before it was taken off? (or can you get pictures?) I would like to see what it looked like, and why so much confusion before a pathologist finally nailed it down as a melanoma. I think your case is interesting and maybe we and doctors too can learn something from your case.
Congratulations on being all clear. You wear your badge with pride.Catherine Poole wrote:
It would be giving it off label, not as prescribed and a dangerous practice in my opinion. There’s an excellent article on interferon by Paul Chapman melanoma expert from Sloan Kettering on Interferon I will post elsewhere.
Here is the full article:
(It kind of makes me think you should want to stay away from interferon…)
But I can understand that a melanoma patient would want to have some sort of treatment, to feel you are fighting… But which treatment?
If doctors can’t suggest a treatment, I would suggest a treatment to the doctor: I would want to receive the same kind of treatment that they give to leukemia patients… that is, they take a bone marrow that is clean, and they grow it outside of your body…
then… they give some sort of chemo therapy where no cell in the body is allowed to divide… at the end of some period of time (10 days?) every cancer cell has not been able to divide, and has reached the end of its life, so all cancer cells are gone… unfortunately, the immune system is also gone…
At this point the patient is extremely susceptible to die of any infection, anything can kill him… The patient must be kept in a “bubble” like immune syndrome patients…
Then they return the bone marrow that was removed before the chemo-therapy and this kick-starts the immune system again. If the patient survives 30 days, the immune system is back, and the patient is free of leukemia… (I know about this treatment because they gave it to my mother, who died during the treatment, and many years later to my sister, who survived the treatment and is still alive 13 years later…)
I wonder why haven’t they tried this on melanoma patients? It seems to me that there are parallels and similarities between leukemia and melanoma…?
But I am not a doctor, so I don’t know why they haven’t tried this on melanoma patients.Catherine Poole wrote:
I have to disagree on the “sugar theory.” I’ve not seen scientific evidence that sugar stimulates growth of cancer..
There is zero doubt in my mind about it. See the statistics for diabetes AND cancer, ie, diabetics (which causes many hours of high blood sugar) have a much greater incidence of cancer of all types than the general population… (also more heart disease, more strokes, more kidney problems, more senility, fast aging, etc.)
And high blood sugar makes healing of any kind much slower…
I suggest you should all become experts on diabetes, even if you are not diabetics… Diabetes (and high blood sugar) to me is THE FUNDAMENTAL ENEMY, it is at the bottom of everything… and the first and best book I recommend you should read is “Diabetes Solution” by Dr. Richard Bernstein.
“according to Ellis” (that means I say it, but I don’t have proof) we are all on the Road to Diabetes. So the sooner you accept this, and take steps to prevent or slow it down, the slower it will be for you to become diabetic, as defined by the American Diabetes Association.
I am not a diabetic, myself, but I call myself “a future diabetic” so I do what I can to slow down my arrival to my future state as a diabetic. And for your information, both of my parents were diabetics by age 60… my father used insulin, my mother did not…
But.. again…”according to Ellis” diabetes is NOT inherited… We LEARN to be diabetics. We learn to EAT like our parents liked to eat at the table… if they liked spaghetti, you like spaghetti… if they loved baked potatoes, you love baked potatoes… if they love delicious cakes and desserts, you learn to love cakes and desserts… If your mother told you to eat your breakfast cereals, they are good for you (which she learns from the box covers of breakfast cereals) then you eat your cereals because you want to do what Mother tells you… and you think it is good for you.
Imagine: your mother tells you that cereals are good for you, so you are convinced that “Sugar Smacks” are GOOD for you… do you eat Sugar Smacks for breakfast? Of course, you eat Sugar Smacks for breakfast… your MOTHER told you it is GOOD for you… and you love Sugar Smacks, they are delicious!…
But if you check your blood sugar, which you don’t… it is sky high…
So you have to break with how you learned to eat. You have to re-learn to eat, and that means you have to learn to eat as if you are a diabetic, even if you are not a diabetic.
Anyways.. the point of this post is to say: I DO agree with the “sugar theory”…
I am curious to ask you something. You wrote this:Icegurl470 wrote:
My primary mel was from a mole that was previously biopsied and came back normal, then partially grew back. Aprox 8 years later it was stage 1B mel
My questions are: Was your primary mole not excised when it was biopsied? If it was not, how did they take the biopsy to tell you that it was “normal”? Was it a mistake not to have excised the whole mole?
If they did excise it, how did it grow back, if it wasn’t there anymore?
Thanks to all who have commented above, and also to those who have read this post and not commented. It is good to know that I am communicating.
I am still “buzzing” to think of my narrow and complete escape. I am not a religious man, but an experience like this might make a person religious. I am not sure that there is a God that takes care of us, because why would he take care of me, and not take care of others too?
But in any case: Thank you, God, too.
In fact, I think of all those who made my cancer cure possible… and I think more and more, and the list goes on and on…
Thank you, Hippocrates… Thank you, Galen… Thank you, Zacharias Janssen (for invention of the microscope)… Thank you Louis Pasteur… Thank you, Madame Curie… thank you, whoever discovered anesthesia… Thank you, whoever invented the syringe…
Thank you, many doctors who failed looking for a cure… and thank you, many doctors who succeeded in finding something…
Who was the first doctor who noticed that an ugly mole might become cancerous? Did doctors 100 years ago know that they could cut out ugly looking moles and prevent a person from dying a few years later? Who first noticed the connection between a mole and death a few years later, and thought it is a good idea to cut off bad moles?
The list goes on and on and on… I wouldn’t be alive and healthy today, if not for all of them.
We truly live in a wonderous age. I am 67 years old. The first time I saw a television set, I was 12 years old. Today we can watch television on our pocket telephones… Only Flash Gordon could do that when I was a kid…
There was a computer at Tulane University (1963-1967) that cost $3,000,000 dollars. It required a room with air-conditioning so that the bulbs would not overheat. It had 8,000 memories… that is 8 K bytes. It took a team of people, each one earning a salary, to operate this monster.
Today, we have pocket computers connected to each other through the Internet… In effect, the “memory” of a home computer, including all that is on the internet, is essentially infinite. So we can connect our brain to thousands of other brains, and we can learn what others have learned.
Can you imagine what it must have been like, 30 years ago, to try to get information about malignant melanoma? Today, one month after my malignant melanoma, I am an “expert” on malignant melanoma. (An “expert” is somebody who can talk for 30 minutes in front of an audience about any topic, and the audience finds the talk interesting and does not get up to leave.)
I could easily talk for much more than an hour about malignant melanoma, and I am sure my audience would be glued to their seats.
The internet is still very young. Can you imagine what it must have been like in, say 1970, if you were a doctor, and you wanted to learn everything that you could on a topic that just popped up in your practice of medicine? No internet. Just books. Most of them were old and outdated. If you didn’t live near a medical library, you were probably out of luck. Today, even a doctor on an island in the Pacific can find all the information he needs to help his patients.
And today we can also teach, easily. This is where I’m going. I first want to tell you what I think I am an “expert” on that can perhaps help you. I am not seeking consulting fees. I am not seeking to sell you anything. If what I know can help you, please PICK MY BRAINS. I am an odd-ball, and I think many of the things I think I know can help those who are truly fighting cancer.
Please forgive me if I seem to be bragging. This is what I think I am an expert on. In no particular order of importance : hormones: growth hormone, EPO, and insulin… correct nutrition… blood glucose… oxygen, and oxygen therapies…
I was not an expert on malignant melanoma one month ago, but I am sure I can already give lessons to laymen on what this is about… lessons that can save their life, or the life of others.
I also think I know a lot about internet marketing. I have something I want to market: I want to market (ie, spread the information) what I think I know, so that it can help others to avoid malignant melanoma in particular, and cancer in general.
And if YOU have something that can help others, but you don’t know how to reach the people you want to help, I can help you to reach those people.
I have this immense impulse to teach my experience and all that I have learned to others. I’m sure everything I do or write or say has probably been done before, but it doesn’t matter. For me, this is new. I will do it the same, but a little bit differently. Each grain of sand adds a bit, and I have my grain of sand that I think will help.
This is one cancer that we should be able to help to cure or to avoid. It is skin cancer. It doesn’t need a Cat scan or an x-ray to be seen. We can each become experts on malignant melanoma, so that we can help to spot it on others.
Anyway… I am here. I am a member of this club. I want to pay my dues. I am not a doctor but what I know is different than what most doctors know. Maybe I am the bridge between a good cancer treatment and the doctors or patients who don’t know it is there.
This is how I intend to pay my dues.