Day 1498: "Mantra"

Day 1498: "Mantra"

Twenty years of being a patient advocate. My mantra on here hasn't changed much the past almost 1500 days.

At Diagnosis:

- Try not to panic. 

Explanation:

Many oncologists/hematologists will be in a rush to get your right on to some treatment. Many of the treatments are over a decade old. It is safe, however, for the oncologists to go with whatever the FDA approved. Safe. But it clearly may not be your best option. You have time. Many cancers, especially the indolent/slow growing ones may have been in you for years.

- Get a second/third opinion

Explanation:

Radiologists read scans. Pathologists read tissue (i.e. biopsies) these are only people. All humans make mistakes. The latter is looking under a a microscope counting cells. This point is critical.  If you get pushback from your oncologist about a second opinion, that is a red flag. The best ones will welcome it. If you want, press hard into that person saying "do you trust or even know the pathologist who put together those notes you are reading? Trust him with your life?"

Side sub comment: You will meet a lot of battle axes out there, even in medical records, especially if you are not the patient. Get out the biggest virtual machete you can and don't take no for an answer. Most back down at this point even, yes, it is more work but this is a critical decision. 

- After the second opinion, get to a specialist

Explanation:

We live our lives trying to find that one trusted mechanic for our cars, yet we get sick and take ourselves to the first 'body shop' we can? Makes no sense. If your car was life or death and it was your radiator, you would take it to a radiator specialists. Same with your type of cancer. But we don't. Here is the difference between a generalist and a specialist.

Generalist:

- Really 'busy' they say chemo and move on

Specialist:

- These people know oncologists/hematologists fall back on chemo, surgeons want to cut it out, radiologists want to blast it with radiation. The point? They all may be right and the specialist knows this and also knows it may be a combination of all three.  Followed by 'maintenance therapy' which may or may not include angiogenesis inhibitors. 

- Look for specialists to order obscure specific tests once a plan is about to be finalized. Some of these tests tell if an option will work or not. Critical. Why go through 8 rounds of a chemo a generalists uses weekly if it won't work for you? 

- Now you have a plan and a TEAM with the Specialists

Explanation:

You would think your work is done but this is where I got my best compliment in 20 years, after an hour long meeting with a world known bone marrow specialist (I wrote about it on here) he turned to me and said:

"You are every oncologists worst nightmare." In a thick accent.

I thanked him. I pressed into him about if we did an autologous BMT/Stem Cell transplant, what about residual disease, treating the stem cells before transplant, what about radio potentiators, monoclonal antibodies. If we went allogeneic what about GVHD, recurrence...and on and on and on. You have to be your own advocate.

At Treatment:

-Generalist (Good luck, hopefully what you are going with will not eliminate other options down the road.)

-Specialist, monitors your symptoms and disease closely. 

Explanation:

You not only get scanned, but they can in their office, compare scans easily to all your other scans to show it is working. Showing YOU it is working.  They monitor closely all your blood work, they see if creatinine is spiking for instance. 

At Results:

In Hollywood and with so many actors or famous people this is where our media  declares 'cancer free.'  I wish it were that simple. Reality is we are losing people at 1500 a day. Dying. Dead. Cancer.  But hopefully you are CR or PR and the latter, ask for maintenance therapy or anything. Even ask about low dose aspirin or Vitamin D. Generalists will laugh or blow this off, but specialists will understand why you are asking. Campfire versus the Forest Fire. 

At Recurrence:

At this point, you had better be at a specialist, you are in trouble.  The best specialists will not panic, they know there are options,  they will go back through everything I just typed. They will get new members on  team, but it may be a bit different, they will tell you about new trials. With cutting edge treatments, such as immunotheraly, radioimmunotherapy, they know. Specialists many times have one foot in with the patients and one foot in the lab.

Sadly, I could type a lot more but I am going to stop here.

We need help. The best cancer researchers need our help, their budgets cut again, they need money. I am so proud of the lymphoma specialists, they are a good ten years ahead of other cancers, thankfully they are helping. Helping other cancers that do not have enough options, Glioblastoma, Pancreatic, Liver, and Colorectal.

- We need better diagnostics

 ...to catch cancer early, we have a stick women can pee on to tell if they are pregnant. We need something simple for cancer. So many cancers are hard to catch early.

- We need better treatments.   

We need to save more lives, a Titanic a day in America and we cut the budget for the NIH/NCI and add more to our Department of Defense because of terrorism? Terrorism isn't killing us even close to the numbers cancer is killing us. We need better offense and defense when it comes to cancer.

I firmly believe we can turn cancer into a chronic disease, with your help and concern. Too many "promising" headlines and not enough delivery or concern.

Options.

Be smart. Be educated.

====
Me: One favor, for the love of God, please stop using "Courageous Battle" or other moronic military metaphors in obituaries. That language was fine in the early 1900s.  Oh yeah, and 'journey.' It is mind numbing language that perpetuates the status quo and complacency.

They (loved ones) did not die a loser. Losing a battle? No we failed them. Giving a patient a pillow and saying goodbye isn't the best we can do in America, for Americans and ultimately the rest of the world.

This is for our kids and the kids around the world.