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lp1964's picture
Posts: 1240
Joined: Jun 2013

I live in a very affluent city in Southern California. This city is so rich, attractive and expensive that supposedly it attracts the best professionals from the best schools paying great salaries. I am a dentist myself and I know first hand if you are not providing first class service here you will have hard time making it.

In February when my symptoms started I saw my primary physician that performed a 3 second rectal exam despite of me telling him that my brother had prostate cancer suggesting "be thorough!" He told me to eat more fibers. I went back in April and by that time I had blood in my stool and now I know a walnut size tumor less than an inch up my butt. He said he didn't feel anything.

In May I had my colonoscopy and diagnosis of Stage 3 cancer.

Even if that's cool when I started treatment other neglects and gross negligence happened.

My oncologist prescribed me Xeloda 3 -500mg tablets every day. No instrustions whether I should take them at once or one at the time. I read in to it myself and found out that it makes cancer cells more vulnarable to radiation so I should take it before. But it also said take 2 in the morning and 1 at night. I called back the clinic, my doc is on vacation and nobody knew the answer so they told me to keep it the same.

Now, I had some fever so I made an appointment with an other oncologist who told me that for my body size I should take 3000mg instead of 1500md/per day and only on the days of radiation. Even he looked it up on Google to confirm right there.

What the hell!

Xeloda is one of the oldest chemo drugs most of you have taken it. This is a very toxic drug with major side effects. It's not like aspirin if you take one more or one less it's gonna matter. They gave me half the needed those and misleading instrustions. I did 8 days of treatment almost in vain.

These doctors have been doing this for decades for a $250,000 salary with a very common drog. They just don't give a damn about your life.

If as a dentist I give the simplest antibiotic for a tooth abscess I give detailed instrustions as we all learned it in 3rd year of medical school.

Sorry to vent so much, but I'm very pissed and disappointed with these medical professionals.

Thank you for reading,



Posts: 1170
Joined: Sep 2012

Hi Laz. I have to agree, what you described does sound rather sloppy. It's unfortunate that despite all we are going through, some of us have to work even harder to ensure our doctors are on top of their game. It would be nice to just relax with the knowledge that our onc's are being thorough and are doing all they can on our behalf. Many of us have learned the hard way that this is not the case.

All the best to you.


Matta's picture
Posts: 39
Joined: Jun 2011

I´m also pissed at all the doctors I saw in 4 years, I think they have been about 15 doctors, they all saw me like a fish on and they just said the same as some other doctor said, depression, and then deep depression, and then VERY deep depression but when I screamed at them that there was something else and refused to leave the ER then they had to do something ... ehh well, we might give you a colon scan, ehh ohh you have a very large tumor in there ... ehhh ohh we did all the best we could do for you all the time, you can trust us!!! 

One doctor helped me a lot and that was my dentist, she talked to me like a human beeing in all these years and she is still in contact with me even if she moved away. 

Today I´m scared of doctors!!! 

After I had the right diagnose then I met all the good doctors!


RickMurtagh's picture
Posts: 586
Joined: Feb 2010

Matta, every time you post causes me to think fondly on my three years living in iceland.

get a doctor recommendation from your dentist!



AnnLouise's picture
Posts: 276
Joined: Mar 2013

I am not a doctor so these are just my experiences and opinions.It would be a good time for a 2nd opinion to find a doctor who you can trust with your life. I am taking xeloda and I received directions from both the doctor and the pharmacy. Also I take 4 in the morning and 3 at night. 

Always feel free to vent, maybe something one of us says will make you feel better.....~ Ann



fatbob2010's picture
Posts: 467
Joined: May 2012

Hi Laz,

Sorry that you have had this experience.  it seems to me that there is a larger share of the responsibility for effective care placed on the patient.   Thus, requireing the patient to become a subject matter expert of sorts.   We develop into or own best advocates. 

One of the thing's about this group, to me, is the depth of the pool of anectdotal information and the variety of those who contribute regularly.  

There is also, a sense of belonging that comes from the shareing of experiences such as yours with others who are walking the same or similiar paths.  

Laz, I can only imagine the stress when there is a gap in trust with one's care team.  I have an excellent care team that I am well satisfied with!  Still and all, it is hard for me not to be aware of the possible consequences of the care team's choices and my personal choices.  In all cases the final choice in treatment being mine.   

I feel that I have experienced a significant loss of personal control, as the medical necessities and side effects intrude into my life.  

The loss of people to this dred disease, both in treatment, and, in this virtual world, increases the bitterness at the prognostic course of the disease. 

I'm regularly on edge.  If I'm not careful I can become consumed with the unknown.  What will the next fall of the shoe bring.   I find myself constantly hyperaware of every ache, pain, or change in any body function.

When all this is cobbled together, I'm more susceptible to high stress, anxiety and, some have argued, PTSD.  This increases the need for self care to try and avoid these unwanted gremlins.  Realigning the resource of time to combat these gremlins focuses me, once again, on how combatting this disease has comsumed my life.



P.S.  Yes I hate this disease and what it is doing to many of us.  Venting can be helpful for all of us.  Thanks for reading this.  Art

lp1964's picture
Posts: 1240
Joined: Jun 2013

We went to consult a surgeon for my resection. During the consultation this doctor checked his cell phone several times. It got to the point that I stopped talking until he looked up. He didn't even say sorry. What the hell? I'msupposed to trust this dude with my life, he is probably going to charge my insurance and me tens of thousands of dollars and he cannot wait 10 minutes to check his text? Very disappointing.


John23's picture
Posts: 2140
Joined: Jan 2007

“OMG  U  Shd  C  Ths  2mor”


I believe there’s legislation about to be presented, that will make it illegal to operate while texting.


(You may want a second opinion)




“Life’s shorter than my bank statement.”


Be well,




Posts: 1170
Joined: Sep 2012

We once had an oncologist explain ct scan results while eating an apple!

Posts: 1607
Joined: Aug 2012

What a world. Whatever happened to professionalism...texting, eating. I understand doctors are busy but patients should get undivided attention.

Posts: 1607
Joined: Aug 2012

That is frustrating.  My husband fired his primary care doctor because he felt she should have told him to be screened earlier than 50 since he had radiation.   She's my doc too and I like her - I haven't seen her since his diagnosis and I'm just not sure what to do. 

My father has had lymphoma twice - years ago.   In the last several months he has lost tons of weight and has chronic diarrhea.  Possibly from chemo years ago?  Not sure, but a few weeks ago they figured out that he is losing protein through his liver.  He's gone for test after test after test and no one is really doing or saying anything.  The other night I start googling and see that losing protein through the liver is sometimes caused by lymphoma, so I tell them maybe you should just go see your onc and see what he says.  I also suggested after reading that he stop taking tylenol.  That night the gastro doc called and my mom mentioned those 2 things and he said the lymphoma returning is a possibility and seeing the onc is a good idea.  Also said no more than 2 tylenol a day. I'm wondering why he wouldn't have mentioned those things on his own without us becoming the doctor and researcher..

I also just finished the book, Heaven is For Real - don't want to get into the religious end of it, but what made me so angry is this little boy could have died - because of the negligence of a team of doctors that didn't pick up on what should have been a fairly easy fix.  

My husband likes and trusts his docs - and I do too, but I constantly email the onc with things I read about on here and other places and just feel that we can't expect her to be thinking about him and his case unless she is sitting in front of him.   I think you really do have to be on top of things and not rely too heavily on the docs - unfortunately...

johnnybegood's picture
Posts: 1122
Joined: Oct 2008

sorry you are having to deal with this.my first time when i was dx stage 3 i just kind of went along with what the docs said and ended up having a chemo onc that almost killed me with the oxy.so now that i am stage 4 i just let my surgen make all the calls.i have to drive 200 miles round trip as i live in a rural area but to me it is worth my life to do that.i go to a cancer center that is university based.it really makes a difference when you have a great team of docs.this early in the game you might want to think about shopping around to get better care,,,,Godbless....johnnybegood

marbleotis's picture
Posts: 714
Joined: Mar 2012

Remember that if you are not happy.....shop till you find the onc that works for you.  You need to have a good relationship with this person as you will be discussing lots of things about your life.

Gone are the old fashioned days where we cannot question a Dr.  You need to shop around.  I am sure there are great Oncs in your area.  Do not waste your precious time and energy on someone who sounds like they do not care.

Keep us posted.

Posts: 199
Joined: Nov 2012

How unprofessional of the Dr!  Sometimes I worry that they may be preoccupied with other things or just lazy.  This is my LIFE.  The need to concentrate on each patient

renw's picture
Posts: 282
Joined: Jan 2013

Lets see, latest stats say that 1 in 2 men and 1 in 3 women will get cancer in their lifetime. times that by the population, divide by the average life expectancy, times by the average OS. Then divide by the number of oncologists.

Basically They have way too much business so really it does not matter what level of service they provide.  There will always be someone else to take your place.

I thought I had a good oncologist, but since moving to Germany for treatments, I can't even to get him to check my scans for a second opinion. bahh

maglets's picture
Posts: 2596
Joined: Jun 2006

sorry sorry guys....I am not criticizing....I just personally find these threads sooo distressing.  I am old...I love my doc I love my onc I love my surgeon....I come from the old era when we had respect for our doctors and still do. 

just sayin.....okay will stop reading the thread...



LivinginNH's picture
Posts: 1458
Joined: Apr 2010

Hi Mags, I'm really very glad that you have a good set of doctors that you trust. Unfortunately, Rick and I weren't so lucky.  After Rick had been treated by more doctors than I can remember, I have to be honest in saying that I for one will NEVER trust my care to only a single doctor's diagnosis.  I had one doctor brought up on charges due to malpractice, another one wanted to call in a shrink when Rick was hallucinating - until I determined on my own, and correctly, that Rick was not only being overdosed, but that he was allergic to one of the meds which caused the hallucinations in the first place!  If he had stayed at that hospital one more night, I'm pretty darn certain that he never would have come home. And these were only two examples of many problems that we experienced. Now I question everything and always get second or third opinions on anything major.  One thing I have discovered is that doctors will pay much more attention to you if you've read up on what you think you might have wrong, and also learn "doctor speak".  They often remind me of mechanics.  ;)

Stay well Mags, and enjoy that cute little cottage this summer.  :)


RickMurtagh's picture
Posts: 586
Joined: Feb 2010

I love all my doctors (except one intern that cost me a kidney).  you can't do much about the past. find a better doctor!

maglets's picture
Posts: 2596
Joined: Jun 2006

exactly.....thank you rick....of course I do not love all doctors....but both Cyn and Rick are right ....find a different doctor.

Doctors are humans...there will be very individual differences that influence the way we react with them. But our docs are the still the very best resource that I know of....

I also believe we owe Steved some love and respect on the this topic.  I believe Steved is in a very hard place right now and our trashing his profession strikes me as the wrong note for this time....

thank you Cyn for remembering the wee cabin.....we tried once in May but it was way too coldFrown haha hopefully first of July and things will have warmed some.....


lp1964's picture
Posts: 1240
Joined: Jun 2013

I'm not trashing the entire medical profession. I am a doctor myself. But simply giving the patient half of the necessary dose of a potentialyl life saving chemo drug that he prescibes every day and not giving specific instructions with it that are very relevent, because the chemo works along side the radiation is NEGLECT!

And the other dude checking his texts while I'm talking about my Stage 3 cancer and considering him doing my surgery is UNACCEPTABLE! What if he does that during my surgery and drops and leaves his phone in my belly. JUST KIDDING! Can you imagine all that ringing and buzzing in my stomach. Like I don't have enough action down there.

And of course I won't stop until I find doctors that I'm comfortable with, but I would expect more from our Trillion dollar health care system.

I hope you understand my frustration.


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