The Importance of Second Opinions!

There is no other way to say it... a cancer diagnosis is terrifying!  No matter the type of malignancy, if a diagnosis includes the word 'cancer', part of the initial reaction is raw, blatant, fear.

Thankfully, with the amazing advances in treatment possibilities, in many cases, the fear is tempered by a great deal of hope... a treatment plan that will offer at least a fighting chance. 

Many types of cancer can now be treated in ways that not only minimize the blasted mutant misery causing cells... but in ways that allow a person to continue to live a full and active life.  (We look forward to a future that holds actual cures!)

Often, a treatment plan involves a more intense initial treatment plan followed by a gentler maintenance medication regimen... and frequent follow up testing to make sure to catch and increased activity in the disease. 

When one gets to that point, they have usually been on the 'roller coaster' for some time.  That initial blatant fear... followed by trying to build a working relationship with medical professionals... coming up with a treatment plan... getting through the unavoidable difficulties that go along with, essentially, subjecting one's body to something deadly, (albeit something that is increasingly specifically targeted)... dealing with all of the side effects (which we are told about but cannot grasp the reality of what it will be like until we are smack in the middle of it). 

They have been through the wringer... and come out on the other side... cautiously optimistic but, most likely, not daring to believe too easily in the 'good' results.  There is nothing like a cancer diagnosis to bring one's mortality front and center! 

The long term follow up testing is so important!  Reality does not go away... the person is painfully aware that there may come a day when the results start going in that frightening directions... but each set of positive results help to bolster one's spirit... helps to make it easier for one to focus on LIFE... not worrying about what their loved ones are going to do if they have to, again, undergo intensive treatment... not worrying about trying to help organize their own final arrangements.

We need to be able to trust the medical professionals who are helping to track our health and health risks. 

We should be able to trust them... each of them... from the doctors and specialists themselves, to the lab techs, the pathologists... all the way to the nurses.  We should also be able to trust in the technology that is used.

But...

Every single one of those people is human.  Most of them are strongly dedicated to what they do... they have a personal reason that drives them to help people.  Most of them are doing the absolute best they can do for the people they care for.

Not a single one of them is perfect. Anyone can have a bad day at any time.  Some people are burnt out.  Some are so arrogant that they refuse to be open to anything other than their own view.  Some simply lack a level of compassion that is absolutely necessary in the medical field. 

One of Tim's nurses told me... "Every class has someone who graduates at the BOTTOM of the class... "  At the time, that was one heck of a reality check for me... but it was one that, as Tim's partner and advocate, I needed to hear.

Recently, someone very dear to us got the dreaded news... the latest results were pretty ugly.  He was told to prepare for surgery and chemo... as the cancer had returned in force.   He's a pretty tough cookie... and was wrapping his head around all of it... getting ready to do whatever was needed.

He had gotten these results from the place he had been going for treatment for quite some time.  He had no reason to doubt them.  Why would one take the risk?  Why would one NOT believe it when they are given such news... after being in the fight, on the ride, for so long already?  Once one is dragged onto the roller coaster, no matter how well things go for however long... one learns that they have to be at least partly ready for that other shoe to drop... for the ride to skip the rails.

Thankfully, another cherished person convinced him to get a second opinion.  That meant traveling to Houston... and that kind of thing can be very hard to fit into an already stressed budget... so he also helped pay for the trip. 

The results from MD Anderson, in Houston, were shocking.  We often think of a second opinion as an avenue to fine tune a diagnosis or treatment. 

His local specialists had told him that the cancer had returned... strong enough that he had to prepare for surgery and chemotherapy... and there was also some lymph node involvement. 

The specialists at MD Anderson told him that he had NO SIGN OF ACTIVE CANCER.  The slides looked great... there was no indication on the slides that there was ANY reason to do anything other than continue to do what he was doing. 

That is a truly terrifying discrepancy.  Had he not been able to make the trip to get the second opinion, he would have faced going through some seriously life impacting treatment.  He would have done it... he would have had his strength and the love and support of his family and friends... and he would have gotten through it... if he needed to.  He was getting ready to go through all of that.........

.... because someone made a mistake.  A mistake that was not caught by anyone else along the line.

We have to trust these people.  Without trust, it is so much harder to have hope.... and without hope... how would anyone get through the hell of these treatments?! 

But... please.... do not trust blindly!!!  Ask questions!  Never go through this sort of thing alone... as another set of eyes and ears will bring up another set of questions... and, perhaps, different answers. 

Never be afraid to trust BUT VERIFY!  If your doctors get offended by someone wanting to do whatever it takes to verify the information that will have such a huge impact on one's life.... get different doctors. 

In this case, it wasn't the doctor that made the mistake.... it was the pathologist...

Getting a second opinion is a way of double checking the work of everyone involved... and no health care professional worth their weight will have any problem with that. 

We are grateful that this person so dear to us did NOT wind up having to have the surgery and chemo at this time.  We know that it may happen in the future... but not now... not yet.

We are terrified to now have to wonder, though.... how many other people have suffered because of someone who may have had a bad day... may have had a bad moment.... may have been distracted by the 'rest of their life'... may be in a job they could care less about... may have graduated at the bottom of their class.  There is no way to tell why the mistakes were made.... but we cannot UNknow that a terrible mistake was made... and wonder how many others ....

Please.... trust but verify.  Get second opinions.  The reality of the need is sad... and scary as hell... but it is reality.  It is your life... mine... the lives of our loved ones...

The battle against cancer is so hard.  Empower yourself with information.  Give yourself permission to question... everything... and keep questioning until you get the answers you need.  They are often enough not the answers we want... but sometimes... sometimes... the right interpretation can make all the difference in the world.