Stage IV Small Cell Lung Cancer Treatment Botched

TMACA Member Posts: 3

On Mar 25 chest and abdomen CTs, checking something else, found a  lesion in the left lung, in the mediastinal lymph node, and numerous small ones in the liver and some bones.  The Dr was all, don't get stressed, it could be just a virus, and I told him nope, looks like stage IV lung cancer to me, and given that I had a clean chest CT just 5 months back, I'd bet on Small Cell.  Guess who was right.  6 days and blood tests, several kinds of MRIs, a couple or 3 types of CTs, including a whole body, and a PET scan later, we had single tumors in the left lung, mediastinal lymph node, and femur, and multiple but darned small ones in the liver, brain, coccyx, and spine.

In fact, even the singles in the lymph node and femur were pretty small.  The only decent sized one, 2.3cm, was in the upper lobe of the left lung.  And as I said, I'd had a clean chest CT 5 months prior.  I'm not a doctor but I do have some medical training and certifications and even lots more medical knowledfge than official training.  To me, that all added up to stage IV lung cancer, probably small cell because of the unusually quick trip from nothing to seriously metastisized.  And that's when things went seriously off track.

As is the case with any cancer, there can be no treatment until the exact type is determined, which requires a biopsy or biopsies.  Unfortunately (as far as this specific event is concerned) I am a disabled Army combat vet, and my only health "insurance" is access to the VA medical system.  Which, popular opinion sometimes to the contrary notwithstanding, almost always provides excellent care.  If you can actually get the care.

One big factor in survival is comorbidities.  Some frequently found among people discovered to have stage IV SCLC, particularly those who end up having the worst survivals, are heart problems (congestive heart failure), COPD or other pulmonary disease, diabetes, and some problem(s) with liver and/or kidney function, and comorbidities have a negative effect on survival.  I personally suspect that it's because if your body isn't working as well as possible overall, you can't take chemotherapy at the best levels; dosage levels have to be lowered and periods of and between infusions sometimes stretched out.  If you're healthy other than having the cancer itself, they can go after that cancer full bore, giving you a better chance.  Another factor seems to be what effects the cancer itself is directly having on you when they start treatment

So here's a guy with an extensively metastisized cancer, one which all results so far indicate is extremely likely to be stage IV SCLC, which is known to be extremely aggressive.  But he's still healthy.  His only medical problem is high blood pressure, which is being managed well with medication.  Good heart. lung, liver, kidney, and all other functions.  His ONLY problem, besides the actual existence of the tumors, is that he had two simultaneous tiny and slight pains, one in the upper right abdomen just below the ribs and one in his right back, so high it was almost on top of the shoulder instead of in the back, when taking a deep breath.  Pains which lasted maybe a half second, only at the point of deepest inhalation.  Fairly sharp, but not at all strong.  Not the kind of thing that would get most people to even go to a doctor.   Luckily, I knew enough to know that whatever it was just wasn't normal, so I went to the ER.

So what's the next step?  Given the known facts then, an immediate biopsy.  It looks like a seriously aggressive cancer, one that needs immediate treatment, especially since it still hasn't had any negative effects; get on it before it can get more serious.  So what actually happened?  Well, it's the VA.  "We're booked up until the 20th."  It wasn't until the 25th that the oncologist had biopsy results (yes, stage IV SCLC).  and by then I was starting to have actual problems.  The original tiny, very low level, and  only with a deep breath pain had become bad, covering a large area of the upper right abdomen,of the  ribs, and of the back, and chronic, only varying at times in intensity.  I had begun having shortness of breath.  Then the VA wanted to start my chemo a week later, after the cancer had already been left alone and allowed to grow for a whole month since the initial discovery of lesions.

From both what I already knew and info from people at the Huntsman Cancer Institute, a patient with my known facts should have been biopsied within 3 days, and chemo started the next day.  So how did this happen?

As I said, it's the VA.  Most every VA hospital is hooked up with a large teaching hospital, and uses their specialist doctors, and the care is usually excellent.  But the VA hospitals themselves are run by bureaucrats, and that's who controls access to actual treatment.  They only did biopsies on Tuesdays and Thursdays, the first unbooked slot was the 20th, so despite medical reality that's when I could get a biopsy.

It isn't like they didn't have any options.  Again based on what I've been told by experts, the first would have been to check who was scheduled for what.  Not all biopsies deal with life threatening conditions, and not all are time critical.  If someone was scheduled for something that could be delayed without any harm, they could have been rescheduled.  If that was impractical, the VA can send patients elsewhere when they cannot do something themselves.,  If they'd sent me to Huntsman Cancer for biopsy on March 28, results would have been in by April 4 at the latest and my treatment would have begun before I even started showing any signs from the cancer itself.  And a known to be extremely aggressive cancer would have enjoyed weeks less of unrestricted growth.  There is no doubt that the delay has cut my odds, which weren't very good to start with anyway, by delaying treatrment until the cancer itself had started affecting me.  In fact, for all I know, they've killed me.

But they had their little schedule, and God forbid that it ever be changed or modified.  To a bureaucrat, "efficient" administration trumps mission accomplishment every time, even when the mission is trying to save someone's life.  Yet it CAN be changed.  My oncologist is a Huntsman Cancer employee, not a VA employee, and when they told him I'd have to wait another week for treatment, he refused to accept it. What the VA tried to claim was impossible happened, and  my chemo began the next day.  Weeks after it should have, but at least a week sooner than the bureaucrats wanted.  And the VA can't do the radiation for the brain tumors, so it's being done at Huntsman.  They could just as easily have gotten my biopsy done right away the same way, but couldn't be bothered.  To the decision makers, I was just another vet who needed something done which they could eventually do, not a patient whose condition required that it be done immediately, so I just went on the list.