Not Referred to BCCA Main Centres But To RCH, NEW WEST

Alice100

Not Referred to BCCA Main Centres But To RCH, NEW WEST

Alice100

Hi there:

 I'm wondering if anyone is currently going through treatment but not at a BCCA centre?  When I was first diagnosed, my GP told me that the BCCA would become a really big part of my life.  So did my Plastic Surgeon....but my Breast Surgeon referred me to a Chemo Oncologist that works out of Royal Columbian Hospital in New West (B.C.) and now I find that - this great "team' of people I was going to be dealing with is not going to happen.  My Dr. is a shy man - who is quiet and frankly, when I finally did get to see him (I knew the appointment two weeks in advance), he didn't have any of my information.  No reports, no details.  They had two weeks to send over my details, but in the end, I had to give him photocopies of the reports I brought.  While we were sitting there with him, he gave them a quick read and then told me what treatment I was having (FEC X6).  

Psychologically - this sucks.  On one hand - I know there are people out there going through the same thing as me but with this team of professionals helping determine the best treatment etc - along with support people such as nutritionists, counselors etc.  I'm reminded of this over and over by various professionals and friends and families who have been involved with them before.  But in the end, somehow I end up with a team of one Dr. who doesn't say much, hoping he even remembers who I am.  And hoping that he has my latest labs and path information and I don't have to supply him with it again.  

When I was diagnosed back in March my children were devastated, my life was turned upside down - a point when counseling would have really helped, but because I was having surgery first, and chemo to come later...no one would refer me to the BCCA even then.  You have to have adjuvant therapy and have an oncologist before you can take part in any of the resources.  The first two months are terrifying (okay it's all terrifying)...and there's nothing available for you.  It's almost like you are not really considered "cancerous" if you will.  I'm Stage 111a - I was back then as well.  Just not quite officially sick enough I guess. (I'm feeling negative this morning).

I was thinking for asking for another referral to a BCCA centre but that will just delay more of my treatment.  I start Chemo tomorrow and I know from my GP that all Dr.s have to follow a certain drug protocol so I'm not questioning that I'm not receiving the right treatment, I just feel really left out - It feels like I'm slipping through a crack or more like I'm being stuffed down one.

Alice  

  

hrf

Sometimes you have to be your own advocate and demand what you want. Don't be shy about it. This is a long journey through the months of chemo, rads and years of follow up so it's important that you feel happy and satisfied with your care.

collie-flower

Alice, my breast surgeon was also in New Westminster but I was referred to the BCCA in Surrey.   I know that all the hospitals have their own chemo clinics and oncologists but I'm not sure how or why who makes the decision as to who goes where exactly.  I do know people who had their chemo at the hospitals, and they had nothing but positive things to say about the whole experience.  If you're going to be doing radiation then you will definitely be going to the BCCA.  Hrf is right, we do need to be our own advocates and we shouldn't be shy in asking for what we want.  Wishing you well and good luck tomorrow.