WTF.frustrated..CDN..how do you trust docs...I need faith

dancingdiva

Hi,

My story. I'm 42. 2 small kids. I had a mammo and US done in Nov 2013. there were 2 abnormal fibroadenomas in each breast. I was refered to a surgeon who looked me over for 30 seconds and said everything looked fine and to follow up in 6 months. I had breast pain in my left breast. I've always had chest breast shoulder pain on the left for years so I didn't associate even if there is an association at this point. The pain got worse in April so I went for an early US. No changes from the Nov one but I was concerned so they suggested a biopsy. 2 wks later went to surgeon, my nipple started to hurt. He looked me over for another 30 seconds, brushed me off that the nipple thing was probably a skin thing and pain is not associated to BC. Ordered the biopsies.

2 wks later, I should say I'm in Canada, MOntreal, the hospital still didn't call so I called and told them how the nipple is really hurting, puffy and starting to invert. Got the biopsy the next day only on my left side and lymph node since it was hurting even there. I totally forgot about the right side from the US report. 1 wk later low and behold, I have IDC. Surgeon tells me I was right, but it's not Inflammatory BC or Paget. They will have to take out nipple and it's spread to lymph node. Surgery scheduled in 2wks.

So after a few days of freaking out, I remember the US report, go get copy and I'm like wtf, the description on my right breast is the same as my left breast so why wasn't a biopsy done on my right breast too?? because I wasn't bitching about the pain like the left one? call surgeon....i have biopsy in 2 days.

I'm at the Jewish General hospital, the best hospital in the city, my surgeon is supposed to be good but I can't help but feel I have fallen through the cracks here. Why didn't I get the biopsy from Nov...because I'm young and there was no tumor looking thing on US??? Why am I the one to notice the right brest result??

I'm so upset because everybody who has been through this has told me that I need to have faith in my medical team but I feel that I just don't.

The surgery is now just a Lumpectomy and the nodes and after that they see results and I get PET scan to see where it spread. Do they know the grade, stage, whether you are ER PR, etc just from the biopsy or do they figure it out after surgery? Are PET scans only after surgery? why don't they want to see if where it spread before surgery??

I trust no one. This sucks.

vbishop

I am so sorry, first for the diagnosis, and second for the idiot surgeon that misdiagnosed you for so long. I hope you find another surgeon before going under the knife.  Lord knows the one you've been seeing dropped the ball.  Actually, he never picked it up.  Jerk!

I will say that once you get a GOOD team in place, the difference is amazing.  I feel a little guilty here cuz I am definitely one of the lucky ones with an amazing team of professionals lookin' out for me every step of the way.

Now to answer some of your questions, where I can:

Tumor grade can be determined with the biopsy, along with ER/PR/HER +/-.

Actual staging is typically done via the pathology report post surgery or lumpectomy.

Many doctors order a PET or CT scan before surgery

Sentinel lymph node biopsy is typically done during surgery; however, some doctors will do them separately (mine did so I could make a decision re: reconstruction).

You are your own best advocate.  I learned years ago that women need to be aggressive about their own health care.  Again, because of my great team, I haven't had to chase down doctors, test results, return phone calls, doc to doc communication, etc.

There are others far more knowledgeable than I that should weigh in shortly.  Bottom line, we are here for you and you can trust that we will treat you with respect, answer your questions to the best of our ability or refer you to someone who can, cheer for you when you get good news, and mourn with you when you get not so great news. 

 

dancingdiva

Thanks for some info vbishop. I have no idea how I'm going to get through this. Looking at what you did, how come you decided on a mastectomy? I'm supposed to have a lumpectomy but i guess it all depends on what they find in the right breast.

AZ85048

dancingdiva - Hi and welcome to the club no one ever wanted to join.  I think vbishop covered almost everything, but I'd like to add that it's important to get yourself a file folder of some kind so that all of your test results (especially pathology reports) are in one place.  Also, taking someone with you to those first few appointments is really a good idea as we all seem to slip right into sensory overload and don't quite grasp everything that will be / was discussed.  

We've all been there and will be there for you as you traverse the ups and downs of treatment.  It's like a big emotional roller coaster and your ride is just beginning.  You've already learned about being your own best advocate - because if you don't, it's possible that no one else will.  We've all made different choices for a myriad of different reasons and once you know more about your diagnosis, you'll make the choice that's best for you.  It does get easier when you have a plan in place and there aren't quite as many unknowns to face.  Sending you a hug and a prayer...

vbishop

Dancing diva -

My breast surgeon didn't give me a choice of lumpectomy vs mastectomy because I had multiple tumors; guess I should update my profile to reflect that as I just listed the largest one.  My BS told me we would be doing a BMX - I was shocked, but it was something I was going to ask to do anyway.  It turns out my type cancer has a tendency to spread to the other breast.  Post surgery path reports support the decision to do BMX as pre-cancerous cells were found in the right breast.  I don't regret the BMX at all. 

With lumpectomy, there is almost always radiation and that isn't something I wanted to go through.  As you get a good team together, you and your team will come up with what works best for you.  It is such a personal decision.  I have always had small breasts and I never any strong feelings for them one way or another.  But my new girls...now I know why some women get so upset about losing them. 

 

fd1

Hi Dancingdiva,

 

Oh, if only we had as many doctors as we do orange cones!  I was also treated at JGH.  I was 31 when I was diagnosed in January 2012.  I had found the lump myself in August 2011 but because of my age and risk factors, I waited until December for an ultrasound at the hospital.  After waiting a month and half for a surgery date and another couple of weeks for the results, I released that the only way you get through this shoddy Quebec public system is by being polite and pushy.  My husband or I called doctors, their assistants, showed up as if it was a walk-in clinic, monitored ALL my test result, etc.  I did a lot of research online and basically checked everything that my doctor did.  Studies have shown that the pushiest patients have the best survival rates so have no shame.

 

 If you need any specific advice I'd be happy to try to help - you can PM me any time.

dancingdiva

Thanks for all the responses! the past 2 days i've practically been at the hospital all day and then registering for all these support groups at hospital. I saw cancer patients...young old. it really hit me last night. I was paralyzed by fear. I don't know how much it spread and that's the worse. the more i hear about treatments the more i freak out cuz taking a blood test freaks me out. I went for the 2nd biopsy yesterday and i thought i wouldn't freak cuz i knew it wouldn't hurt. no no.....i had to get freaky! not as much as teh 1st time but still. I'm just so scared but I know worrying will not change the outcome. this morning i decided that i need to get through each day as it comes. i hope i stick to it. it's pretty much impossible to change your personality. glad there are other people i can connect with, you don't feel so alone.