Disappointed with Care Team

Drs. are trained to diagnose, treat and then check off.  I had horrible, horrible pain and both Surgeon and Onc. Dr tried to give me more Vicodin after checking to see that THEIR work/treatment was OK.  Eventually saw a physical therapist and she helped me way more than any of my Doctors.  She would discuss things with me, but made it clear that she wasn't able to " Diagnose". Only the Dr. can "Diagnose" ! Sometimes they can't! They couldn't tell me what was causing my horrible pain.  Onc. Dr. only wants to talk about the chemo and what he's doing to my body. To the onc. Dr., you are a "diseased breast attached to a woman."   I did go see a counselor and it was good. I still remember talking about all I had to do and she said "You have to be your own advocate.  That must be a lot of pressure?".  Isn't it sad we have to be or own advocates? 

Coming here to the discussion boards is the best place (for me) for any kind help for:  mental distress, spiritual distress, social distress, family distress and any other kind of stress.  The ladies here get it and always have an idea to help.  

Hi,

I really enjoy your blog.  Yeah, I haven't gotten much in the way of "how are you coping?" from my treatment team either.  The cancer center gave me a folder full of resources including support groups, special exercise programs, wig and prosthesis shops and the like.  They also have a clinical social worker on staff and included his card.   So I figure I'm on my own to pursue that type of support.  

As to how I'm coping, I'm figuring it out as I go.  I write, meditate, and look for inspirational reading.  I'm trying to stay connected with caring people.  I'm a bit leery of support groups but may pursue that when I have more time.  Right now I'm still working part time.  The distraction helps.

I was treated locally (Palm Springs/Palm Desert area) and also UCLA, and in both settings, a psychologist or oncology social worker were very prominent from the very beginning, right through rads.  So it's kind of surprising to hear that no one has filled that need for you.

In what part of CA do you live?  I know UCLA has wonderful support groups run by their psychologists that are open to non-UCLA patients on an availability basis.  Here's a link to some of their info:  http://www.simmsmanncenter.ucla.edu/groups/groups.asp

It's not only helpful to have someone to talk to at various stages in our tx, it's also important that you find someone with a real understanding of bc and bc tx.  As a UCLA psychologist said to me, this is not the time to be explaining to someone what bc terminology means.  You need someone who knows more than you do about the disease, your tx, and the healing process, which probably means making an appointment with someone at one of the larger institutions -- UCLA, USC, Cedars, Stanford, UCSF, etc., depending on where you live.  I do hope you can find someone to give you the support you need and are seeking!   (((Hugs)))   Deanna

My docs are not exactly huge care bears either. One of my oncs, a resident, was really good though. She didn't DO anything really, but she took me seriously, listened and encouraged me to exercise and "live my life," as she put it. It helped.



In the beginning, when I was totally freaked, I got a xanax script from a shrink friend, and when I told my cancer docs, they assured me that it was fine, that I shouldmtake whatever I needed to manage, and my surgeon did also tell me that it was normal to freak, but that if I was still freaked after 3 weeks or so, to tell him so he could get me a psychologist specializing in BC.



So they have not been amazing or anything in this regard, but they have been OK.



The thing that ultimately helped me the most was my wonderful PT. About a month or two out from the BMX, I insisted on a referral to one although the doc saw no reason. I went to her for lymph draining massage once a week throughout my treatment and for a while after too. She was nice, a font of knowledge about docs, treatments, complications etc and what she did felt good, a complete oasis in a sea of unpleasant treatment, needles and pain.



The other thing that helped was exercise, especially walks with the dogs. When I am not sure what to do, I go for a ong walk. I always feel better afterwards. It helps that the weather is mostly good here and that I can walk among the antiquities. I realize it is not so easy everywhere.

When you go to specialists, they well, specialize, I guess..  I know where I had chemo, they asked if I wanted to talk to someone, the social worker came over, gave me her card, said if I wanted to talk, call any time, even after treatment ended, that they were there for us.  That was nice of her.  It seemed like the nurses during chemo were the ones who talked the most with patients - but then again, we were a captive audience, and they were limited in their work by the number of chairs, so they had time.

Your surgeon is there for 1 reason - surgery.  The MO is there to make sure your chemo is going smoothly, then to follow up at regular intervals.  Your RO makes sure you do well with radiation. If any doctor should've been the coordinator, it probably should've been your PCP.  That's the general who dictates the rest, who treats the whole person, as much as any doctor does these days. 

When HMO's pay by capitation or a teeny amount per visit, when PPO's pay a fraction of what's billed, when Medicare caps reimbursements, it's no wonder that doctors don't have time for anything like that - they need to see enough patients to be able to pay for their malpractice insurance, office rent and staff. 

If you know you want to be referred to a support group, why not ask the office staff to give you a list?  I've found that no matter what the situation, if you ask for things, people are very nice, and tend to go out of the way to help you get them.  Be proactive!!!