Cancer, which was some years ago a death sentence, has become manageable. With early detection, treatment options and on going increased funding for cancer research: FIND THE CURE!!!! scream various non-profit organizations and people dish money, many times not knowing where exactly their donations go. I personally want to now if I am funding some CEOs trips to Europe, so I do my research and mostly give the little I have directly where I know for sure there is a legitimate need.
The DARK SIDE:
Most funds, both in federal grants and private go to research of the MOST COMMON TYPES of cancer, but wait!!!
DID YOU KNOW THAT THERE ARE HUNDREDS OF TYPES OF CANCERS AND DIAGNOSING FROM THE BEGINNING THE CORRECT TYPE WILL DETERMINE YOUR FUTURE. Plainly said: if you have one.
The RARE CANCERS such as sarcoma research is underfunded as compared with the most common cancers.
Most of us could relate to the sentence: “she had breast cancer, ten years ago, but she is fine.”
She IS a survivor!!!
Generally, no one asks: WHAT TYPE OF BREAST CANCER?
The most common, milk duct cancer is well researched and indeed the rates of survival and quality life have increased significantly. But what if the person has another type, say INFLAMMATORY BREAST CANCER? What? Oh there are more than ONE TYPE of cancer CELLS? YES, HUNDREDS and subgroups and each type has a different ideal treatment protocol!
I chose breast cancer as an example because is the most talked about among women, as prostrate is among men.
Being a woman, I do not know much about prostate cancer but my assumption is that everywhere in the body where there is a possibility of cancer cells, determining correctly the TYPE of cancer, is of life or death importance!
This is why to detect it, to read the TESTS accurately (including the x-rays, pet scans, MRIs,) and blood work are so important. Most of us think “surgeon,” and are very selective about who cuts us.
This is important, and large margins if it is cancer are also important at the time of surgery. What are “margins?” It means more tissue must be removed when the tumor is removed to ensure there are no cancer cells left after surgery.
Let’s THINK WHO else is crucial in diagnosing correctly and treating the cancer, and everything in general.
I call them the three Gods or Godesses of Medicine:
1. The RADIOLOGIST – if he/she misses the problem, then it’s over before it starts.
2. The PATHOLOGIST — If you have a biopsy — the interventional team — if it is a needle biopsy, ask is it a core biopsy or a fine needle biopsy. The level of pain is much higher with a core biopsy. The cells obtained during a needle biopsy may be irrelevant and the pathologists determine the TYPE OF CELLS, therefore your future. If a pathology report says everything is fine, then off you go into the world and may die of irrelevant, general causes!
3. Your surgeon and your oncologist are also important. ALL your doctors and especially your family doctor.
To me, no offense, but in the case of cancer or a serious condition, the foundation is the radiologist and pathologist FIRST. The Gods listed under number 3 are what we SEE the most.
Cancer and my personal experience…
I have to bore you with a story that goes back to Romania of 1980 when my mother, a M.D. herself, had a radical mastectomy. After less then two years she experienced severe pain in her spine.
We went back to the Oncological Hospital and was assured it was “all in her head.”
The back and forth trips lasted a few months.
I remember going to see my mom in the hospital and speaking to the doctor who told me she was fine, it was psychological!
I was a very young woman, so as one could imagine my world collapsed when the next morning, I received a call from the hospital informing me she PARALIZED overnight and they were moving her to another hospital as we spoke! I barely made it to the hospital as she was transported to this “other” hospital!. Later I understood mortality rates count and this hospital didn’t want people to die on their watch.
This experience is the subject of an entire post on this blog and a chapter in my book, The Gypsy Saw two Lives. My mom lived in horrible pain for another two years…at the very end I called a priest to absolve her of her sins. She was an atheist, but I thought she was in a coma and unconscious. After the Priest spend 5 minutes “praying” for her soul, he took his fee and left. When I came back, my mother was out of her coma, she opened her eyes wide and said:”Why did YOU call a Priest? I told you, there is no God. If it were, my life would have been different!” Then she died.
A heavy burden for a young woman to bear and even today, although God made himself shown in many circumstances of my life, we have an up and down “relationship.”
Let’s forward to 2005 in Philadelphia, USA!!!
Good doctors, amazing technology. I was in the best of hands! NOT to worry!
My family doctor send me for an MRI of the spine, related to arthritis (oops… here goes the Privacy Act down the drain, but I am allowed to disclose things about myself… still!)
The radiologist went beyond the call of duty and looked at my shoulder blades as well. Low and behold, he reported a partial tumor UNDER my left scapula, which required immediate attention.
My doctor called, and one knows when is bad news the doctor calls, if it’s rotine, the nurse does and everyone is happy! Sometimes is called “human error,” and no one calls and there IS a problem. This is why it is so important to not assume and take the responsibility for your own life and call your doctor and ask about your TEST results.
So far, so good in my case. I went next to the best shoulder specialist at the best orthopedic hospital in the area. They took xrays of my shoulder, even if I brought with me an MRI report which showed the iffy finding.
The doctor, a jovial older man, shook my hand, smiled as he was followed by many residents in training, and had to show good bed side manners, and said:
“You have tendonitis! Nothing to worry about”
“Tendonitis? I said. “But the MRI shows a tumor and urges me to see an orthopedic doctor immediately.. ”
And this is where God gave me the courage to speak up and respectfully asked the doctor to consult with other radiologists, just for my peace of mind, as I was crazy! OKAY I could live with “crazy!”
Christmas Eve, two weeks later, as I drove home and must admit I answered the call, it was the specialist. He informed me that they consulted with others and indeed I MUST see an oncological orthopedic doctor.
A what????? I didn’t know they existed. Along the years, I learned that we are so specialized, we are a puzzle and if your problem “doesn’t fit a usually it is… pattern,” YOU really have to be crazy to fight.
That is if you want to live. Do you still have things to do here, on this journey? Then FIGHT!!!
A series of experiences, one worse than other followed and I ended up at Sloan Kettering in New York City.
In all honesty, I am ashamed to admit, a client suggested I go to Sloan, and the ONLY Sloan I knew was a local car dealer. I Googled the name and here it was: a Hospital! One of the best in the world.
The New York experience was good and celebrate, celebrate, the tumor was excised and it was benign!!!
Two weeks later, I went for my check up. Of course, a Saint saw me (these are the residents) because God was busy with surgeries.
The resident said:
“You know the good news, it was benign!”
And here is a VOICE whispering to me: ASK FOR THE PATHOLOGY REPORT. I did!
The Resident went out and came back into the room still reading the report!
He was pale and looked embarrased. I knew…
“It was cancer, wasn’t it?” I asked
“Well, they changed the diagnosis for us! It almost never happens!”
Now it was FINALLY, after FOUR MISDIAGNOSIS diagnosed correctly!
TRUTH: NO ONE changed the diagnosis! During surgery, the pathologist gives a PRELIMINARY report!!!!
It is called PRELIMINARY for a reason. Guess what that is? It’s NOT FINAL!!!
YOU MUST BE SURE YOU SEE AND HAVE A COPY OF THE FINAL PATHOLOGY REPORT!!!
Let’s fast forward again!!!
Since my mother died from breast cancer I faithfully go for my mammograms and since in 20010 I moved from Philadelphia, I had my mamorgam here this year.
In 2012, I told the specialists at Fox Chase in Philadelphia, that I felt some nodules in my right axillary. An ultrasound followed, which confirmed the existence of what I felt. Since the lymph nodes where near the breast, it suddenly became NOT a breast issue and I was sent to another specialist. She looked at me, as if I was pathologically attached to this idea of something being not right! Imagine why! Because my persistence ALWAYS proved correct!
She assured me it was all fine. The nodules were just there, all was normal!
But this year, suddenly the exam showed these normal lymph nodes looked larger and needed follow up.
I am lucky to have an oncologist who is so smart, he knows and accepts we don’t know it all.
I could only work with doctors who are continuously learning and accept the idea that if someone, somewhere didn’t doubt what we knew, there would be NO PROGRESS!!!
It is the PRACTICE OF MEDICINE!!!!
So at the present time I am again on the rolling hills and iffy opinions.
If someone says:“USUALLY IT IS>>>” It is a bad sign!!!
If your case doesn’t fit in the cookie cutter, your life is at risk!!! Please ask, is what you are telling me 100% the correct diagnosis?
I took the words: usually, almost sure, generally, out of my vocabulary and if I hear my specialist doctor giving me a “general” answer I say thank you and good bye.
I didn’t wish on myself rare unusual types of cells. If they are, then I MUST be sure, as my life depends on it!
I’d rather die of natural causes after 80 and not from “generally not known causes, much earlier!”
I still have tasks to accomplish here, on Earth.
In conclusion: know your personal case, no matter the problem. YOU have YOU ONLY to take care of. The Gods have thousands, things get misinterpreted, fall through the cracks. ASK and research yourself. If your doctor is “concerned” you researched it on the internet, this is a bad sign. That is NOT to say to trust all web sites which talk about cancer. But Mayo Clinic is trustworthy, all the big hospital’s such as University of PA, M.D. Anderson, Dana Faber, WEB MD. I discovered last night a new site which seemed promising: http://www.breastlink.com
It gave me information I didn’t find anywhere else.
Be aware your case is not automatically “placed” in the “usual,” class and make sure your FINAL diagnosis is correct, as your treatment depends on it and I hate to bring it up, but your life and quality of life ultimately, depend on YOU knowing in your heart you are unique and there is nothing general and usual about a diagnosis which determines a course of treatment.
God, as a Romanian proverb states, helps those who help themselves!