Oh Dear, Pattypoo,
Hi Pattypoo~ I almost never go to the Mother-ship. Thanks for informing us about the negative Triple Negative Attitude. There are many "old sites, books, physicians and professionals who have us buried before we've even had an MRI!!! It makes me so furious, as doom, gloom, in the Triple Negative Room, continue to permiate the diagnostics, frighten the new diagnosed, and the ignorance on variations of every indiviual are like snowflakes! Every case is completely different, every body reacts to medications in various ways, and the "actual cause" for triple negative disease has yet to be discovered. For all we know, it's activated by screwing in a "lightbulb" (there's a how many triple negative joke in there, somewhere; lol).
Thank goodness for Gina (thank you, Gina!) and Constantine Kanklidis' Research Breast Watch and their collective, positive, and logical thinking! I was a newbie with this, and scared; no information with a hopeful outlook could be found anywhere, nor were there any sites, books, libraries, medical support groups or nurses who even KNEW WHAT IT WAS (unfortunately, those uneducated and uncaring boogy-docs, boogy-nurses and boogy-research books are still in circulation.
Every day, I read new, incredibly positive infomation about this disease, how new treatments are being developed, how the Triple Negative Disease Patients (especially when found early) live a long, happy life; and on Triple Negative Discussion Boards, there are endless stories about beating this illness for longer than 30 years!
It all depends on how one wishes to look at the disease, what they see as an alternative, and non-altnative option for treatments; Tamaxofin, Estrogen Hormones, and Hercepton, along with many new chemo treatments are useless to the Triple Negative Patient; and it's wise to "act quickly" and pay careful attention to ANY Breast changes; particularly if Breast Cancer is prevalent in one's family history; even that assumption is not accurate, for ALL cancer is sneaky, misunderstood, and as far as I know, a CURE has NOT been discovered. The treatments and detection mechanics have vastly improved (my mother died of Inflammatory Cancer in the early 1980's, when all Breast Cancer diagnosis and treatment was essentially considered "one disease, with one treatment).
Ideally, being healthful, watching our for obvious Toxic Environments, using common sense, a non-fat, low calorie diet, and (I just found out my Vitamin D Level was almost "0", and how important it is to our body, cell, and brain function). Calcium, D3, Exercise, a Balanced Diet, a "living Green", are good for everyone, men and women! A healthful lifestyle keeps us out of the hospital wheelchairs; it's beneficial to our blood, brain, mind, heart, liver, intestinal tract, pancreatic activity, gall bladder, bones, and and over-all healthful immune system. I don't think a smart and "feel good lifestyle" can hurt, especially if we're in good physical condition before treatment begins.
It will be wonderful when the actual "receptor" or "missing link" is found. The "NEGATIVE" term given to this disease in the first place was the first mistake...we're already feeling negative about having Breast Cancer, and then tack on TRIPLE NEGATIVE, Genetics, and the Unknown about an Unknown Cancer...and patients are frightened, afraid to seek treatment, and give up hope. Their families and spouses are frightened as well, and don't know where to turn. At least we have answers to many of the unknown questions we sought after years ago.
Thanks to Gina's brilliant, creative, and caring intellect, we have been given a cherished site, filled with information, friendship, kind hearts and it's intimate, meaning, not overcroweded as we lose touch with so many on the popular Support Sites. There are also many misinformed and misguided patients who think their way is the only way.
This remarkable creation of Gina's is priceless, invaluable, and has connections to every aprroved site available! Breast cancer.org is the mother-ship; but NO SURRENDER, BY SURVIVOR FOR SURVIVOR SUPPORT, offers sincerity, trust, and GINA, FLUFFY, CONSTANTINE, NURSE NICKY, AND MANY PHYSICIANS, NURSES, AND MEDICAL RESOURCES.
Visiting every available Support Site, (and always lost, confused, and felt slightly unwelcome or suspicious), the easy definitions, unconfined expressive attitudes and protective natural surround the atmosphere, similar to the comfort, honest pleasure, meditative & calming relaxation is always available; and as inspiring and refreshing as a mountain's Hot Springs healing bath of clarity, wellness, with the addition of newfound pride as we remember our origin, our battle-cry, and the wisdom shared by all: NO SURRENDER, EVER, NEVER, EVER; NO SURRENDER, NO ONE WANTS TO GIVE UP THE FIGHT AS WE CONTINUE TO SEARCH FOR THOSE IN NEED AND FOR THOSE SEEKING OUT THE ABILITY TO SAY "WE, I, ALL WILL BE FEARLESS IN THE FACE OF THIS DISGUSTING DISEASE, AND ALL WILL PREVAIL! Thanks to Gina, Constantine's Cutting Edge, and the latest headlines or cancer news, we are informed, given a change to say YES or NO; and wow, Gina, we are FREE~
Everyone plays a major role in creating and offering questions, information, the latest clinical trials, techniques and Combat Barbie is one of many who offer Beauty Techniques, how to be reborn, and like all the members here offer brilliant ideas on how to survive, and how we can find quality of life after Breast Cancer and "what now?". The collection of life-styles and support systems, fresh ideas, sharing helpful ways to support one and all, and we all adore the founding members, as well: Thank you's to Gina, Constantine Kaniklididis, and Nurse Nicky , began NO SURRENDER, along with Gina's Blog (I used it forever as the only realistic, knowledgeable TNBC Source of Information and Support; and continue to go there often for help); along with many intelligent, helpful members and friends who assisted Gina, spread the word, and (in my opinion), the creation of the best Support Help Line in the World), was born. Some have gone, stayed, chose to forget about their cancer; most people learn about the realities of their own personal journey, find reliable sources, other opinions, and welcoming hearts, creative minds, and how to find reliable doctors, hospitals, clinics, tests, and dependable and trusted treatments for their illness.
I obviously love this "little Island of Hope and Encouragembt", and along with it's intelligent support members, I hope and pray it continues to be the "perfect, loving, and simple site connected to reliable and trusted resources (medically and legally). It's my favorite Vacation Resort when my own fears are impossible to handle; thank goodness Gina found me. She led the way with her magical lantern.
I could finally see clearly, and logically understand the basics of not only TNBC, but all of the others, as well. My surgeon told me not to go to the internet, read bookds, or even go to a support group for help. He commanded me to listen ONLY to him.
He didn't tell me ANYTHING!!! So, when someone is drowning or caught in a fire; their demise is generally due to negative thinking, fear, panic, irrational thinking and foolish decisions aided by the old NEGATIVE hopeless attitudes.
In March9's defense, we all go through this spooky tunnel of fright, fear, and the "not" Funhouse; whose corridors seem endlessly lost; we all feel terror, even those who have faith and courage. We don't know what lies around the next corner, or how we will survive. Personally; I question whether or not Triple Negative Cancers should be categorized as a "true breast cancer", and often wonder if scientists aren't looking for a sqare in a round hole; or a sphere in a sqare hole. I read a great deal of information; and some of the same medical words continually appear referring to TNBC, and a long list of other peculiar illnesses; like kidney, pancreatic, brain disease, Herpes, Fungas Infections, Skin Disorders, Immune Disorders, and rare Breat and Testicular Cancers. It's taken many years to understand this foreigh language (and I barely know the Alien Medical Alphabet Soup)
with 40 years of Cancer Deaths (strange and rare forms, as well), Basal Skin Cancers, and you wouldn't believe my family medical history if you looked at it. They physicians rarely did; and treated me like a Nutcase or a Hypochondriac for years.
One needle biopsy; one MRI; some serious blood tests, and ONE intelligent and devoted doctor might have helped to avoid all of this pain, suffering and abandonment.
Perhaps March9' is afraid, and needs the loving support of angels like Gina, Kings of Hearts like Constantine, the Strength and Compassion of Nurse Nicky, and Special Caring Women like you, Pattypoo.
I'm not the best when it comes to helping; and my "negative subversive, and all-too-often cynical viewpoints bring with it a host of anger, dislike, and many who don't understand "playing the 'Devil's Advocate', can bring wisdom, thought-provoking discussion, and truth (rather than fantasy) to an important topic like Triple Negative Disease, and all of it's secret hiding places.
We all are hopeful for a treatment to give us long lives, painlessly, and therapies like Doxil, Abraxane, Paciltaxel, new Surgical Techniques like Sentinal Node Biopsy (hopefully, even that will soon be hopefully discarded and replace with less invasive procedures; the PET, Digital Mammograms, Ultrasounds, new Radiation Techniques, daily research discoveries, and a growing population of FEARLESS WOMEN, proud and willing to fight this Beast, destroy it's relative beginnings, and overcome cancers of all kinds, once and forever.
Thank you for your post. You made my heart go pitter-patter; and review the "good stuff" happening as each day new and successful treatments are being discovered!
Have a great day!