CSN Login
Members Online: 5

You are here

Sometimes

Srashedb
Posts: 482
Joined: Dec 2013

sometimes I wonder how so many doctors, trained for years, can be so damned incompetent and irresponsible when dealing with this disease.

if we had stayed with my husband's first docs, he would probably be dead.

despite pain in the hip that was not relieved and got worst, despite an increase in creatinine, some hyper calcalcate, and anemia, the primary kept telling him to take Advil and "we'll keep on eye" on the bloodwork.

it was only when we pushed for an MRI, did a mass in the kidney and the spine; "oh, sorry... will refer you to an oncologist".

he was then referred to the Director of marin Oncology where, just before a long 4th of July weekend, said "you are stage 4, not much to be done but will refer you to a urologist, radiologist and neurosurgeon. One year at most, lucky to make it to Christmas" none of the referred docs had oncology experience.

then after his laminectomy, done at a different hospital by a qualified neurosurgeon, the narcotics caused intestinal blockage. Since it was an emergency, went to the local ER where tests were run and ultimately was put on the hospice ward because finding nothing else, "it must be the cancer". After 4 days, I had him transferred to the SF hospital where he was treated for 2 weeks and the issue resolved.

renal cancer is one that requires experienced doctors that know and have treated other patients; yet these ego-driven idiots cannot simply say they have little experience and then refer to those who do.

sorry for the rant but reading about docs, especially surgeons, say "we got it all; you're cured" brings me back to last summer.

in the end, we have a top-notch team but it should not have to be traumatized patients who gather information. A head of oncology should knowSarah

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Sarah... sorry you and your hubby had a hard time..  learned the hard way, so to speak.  This is why a forum like this is so important.. We all try to make sure the Newbies get to the right doctor.  It is hard... darn hard.. you hear those dreaded words, you are scared.. yes, we all been there.  If you look at my other posting today, I referenced this topic a bit.

There are like 300 different diseases all called Cancer.  No one Oncologist knows about all 300 types.  Kidney Cancer is like 8% of all Cancers..  So, about 8% of Oncologists (if we are lucky) know about Kidney Cancer.  It is important to get to one of those Oncologists that know about Kidney Cancer.  And sometimes this means traveling further than we would like.  Yes, I have been there too.. fired two Oncologists and then realized that the 2 hour drive is the best way to go... some people travel a lot further...

Glad you are on the right track.. what I wrote above is really for any newbie around here, you already figured it out.  And lucky for your hubby, he has you..!

Be Well All..!!

Ron

Srashedb
Posts: 482
Joined: Dec 2013

I did read your comments and they triggered mine; perhaps it is because we are approaching one year since those docs gave my husband an expiration date but reading posts about surgeons who tell patients..."got it all, no further tests needed".

the arrogance and hubris of these experts is still stunning! So easy to refer to real experts in the proper field makes a life/death difference to many patients.

we are indeed grateful to be with a team that knows this disease.

i sent Mayo the MRI that the Marin jerk viewed in giving the prognosis; got a call immediately asking for the rest of the results. That comment turned this thing around.

my husband is not naive; a stage 4 diagnosis is potentially fatal and he knows it but for now, he's doing great! His oncologist is treating him with curative intent and holding hope that if it pops up again, better treatments may exist.

This forum has been so helpful, so informative and I am beyond grateful to be here.

Sarah

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Sarah.. we all welcome each other.. we are all in it together... kind of nice, given the circumstances..  I know it is a distance, but did you see the info on the Kidney Cancer meeting at Stanford..?  Perhaps you both can make it... would love to meet you in person..!

Ron

Subscribe to Comments for "Sometimes"