I'm Really Confused after my visit to the Onc Doc kind of long

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Bluize
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Date Joined Mar 2005
Total Posts : 635
   Posted 4/13/2005 1:21 PM (GMT -7)   
After having an excisional biopsy to further diagnose the abnormal finding of lobular hyperplasia, my doc told me that I should go see an Onc. doc to see if I'm high risk enough to be on Tamoxifen to prevent getting cancer down the road.  I met with her and my husband and right away we knew something was wrong.  She had papers scattered all over her desk and she was trying to put together the history, needle biopsy, lumpectomy, the pathology.. etc.  She couldn't make head or tails out of the pathology or the procedures I had all the while I was telling her the history.  She even went as far as getting the surgeon on the phone to confirm dates.  She told me I'm at stage 0 and it's pre-cancerous.  My surgeon and the pathologist report did not indicate that.  She said it doesn't matter and either way I should be on Tamoxifen.  The surgeon told me there is a risk assessment tool they use to assess your risk.  She didn't do any risk assessment except to confuse my pathology.
 
So, later that day I went to see the plastic surgeon who worked with the Surg. onc to remove some scar tissue and adjust the other breast from a previous reduction and told him about what happened and how upset I was.  First he asked me why I went to her. I told him because the surg onc wanted me to go for a risk assessment.  He said that my pathology showed nothing and she was basically a quack.  He said he wouldn't send his dog to see her.  My gut was right.  He also called some other expletives that I can't mention.  He also told me that a patient of his with cancer went to her and she wasn't being treated right.  Scary stuff, but there are not so great docs out there.  I asked my ps if I should go to another doc for an assessment and he said no.
 
So, why do I have this gnawing at me that even though he said I shouldn't go to another onc doc, I feel I should.  He showed me the pathology reports and the final diagnosis and it really was good.  Nothing but lobular hyperplasia although the hospital path in one report called it lobular carcinoma in situ which I found out isn't cancer but a marker for potentially being higher risk than the average woman.
 
I'm 38, pre-menopausal, would like to have kids in the next 2 years or so.  I feel like I should do something, but I don't want to take Tamoxifen or anything else.   This doctor was even poo pooing my wanting to have kids at this age telling me I'm really high risk.  I know that I am more of a risk than if I was 25 but my gyno is not worried about it.  Thanks for letting me vent if nothing else.  It's comforting to know you are all out there.
 
Thank G*D for my husband...he can spot them a mile away.  It's very important to take someone with you to these appointments.
Susan


debbiR
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Date Joined Feb 2005
Total Posts : 730
   Posted 4/13/2005 2:11 PM (GMT -7)   

Susan: First, I am glad that you went to your surgeon after visiting the onco. Unfortunately, there are so many idiots that have speciality degrees. There is a local onco that was in court last week for sexually assaulting and harrassing his female patients when they were to sick or weak to fight him off. grrrrrrrrrrr I believe to ease your own mind, I would make an appointment with another onco and get his/her opinion. Make sure that you have all of your reports and films with you when you go. Sometimes we just have to follow our gut feelings. If you need to, get a couple of different opinions. Then your mind will be at ease. You are absolutely right on how important it is to take someone with you to these appointments.

I do have a question. If this onco is so bad that your surgeon told you what he thought, then why hasn't someone reported him/her to the AMA?

Deb


 


gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 4/13/2005 2:20 PM (GMT -7)   
Wow Susan you have had a rough experience. It is rare that a doctor says anything bad about another doctor. This in itself tells me this is not anyone you need to ever see again. I would check around and see if you can get any names of other oncs from women who have had breast cancer. Did you have a Reach for Recovery rep call on you? I would start with her if so. Ask about some support groups around and even if you don't want to actively go to them you might find some women who would share their onc's name. BUT I would definitely find an oncologist that you feel you can talk to and trust. Lobular is a different kind of breast cancer. As I understand it, it mirrors in the other breast and quite often a bilateral mastectomy is advised. Your pathology showed something or you wouldn't have been diagnosed with lobular. YOU ARE ENTITLED TO HAVE A COPY OF YOUR PATHOLOGY REPORT. If nothing else, get that copy and share it with us. I am not knowledgeable about the pathology business but there are lots of women here who have experience and know their pathology who can help you. Please don't just stop with this, if your gut tells you, listen to it. Hugs MK


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 4/13/2005 2:22 PM (GMT -7)   
Susan-
I would also recommend another opinion with an oncologist. Your surgeon is not qualified to make decsions regarding Tamoxifen or medication issues, he is a surgeon and not oncologist. I am also a little concerned about your surgeon's willingness to bad mouth another doctor... that is a set up for litigation. It might have been more appropriate simply for him to refer you to another onc, one of his cronies.

At any rate, I would find another onc who is not affiliated with the other 2, take your films, reports, everything....and take your DH or a tape recorder.
You may also went to ask the expert on the Johns Hopkins site, I posted a link in my thread about "a really cool site"....they answer you right away.
 
Good luck!

Lori


Post Edited (Tavish) : 4/13/2005 3:25:11 PM (GMT-6)


Bluize
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Date Joined Mar 2005
Total Posts : 635
   Posted 4/13/2005 2:23 PM (GMT -7)   
Deb, I don't know why nobody has reported her other than I found out that her colleague who works in that group is really a great doc and I should have seen her instead of the other one. She even had blood taken a week and half ago and said that she would call me. My surgeon didn't even call me and the only thing I can think of is that they didn't find any high tumor marker readings and that's that. I see my regular doc next Saturday whom I trust completely. He has been my doc for 20 years and has never steered me wrong. I am going to discuss this with him at length and get all my reports. I'm tired of doing this already. I have a team of docs now for someone who doesn't have cancer. Jeez! After I meet with him I will do what he suggests. I use the what would you do if it was your wife routine. Some of these docs are just awful and they are left to practice medicine on unsuspecting people. She also kept me waiting 40 minutes in the waiting room and her staff didn't tell me she wasn't back from rounds at the hospital yet. If I saw her on the street I would spit at her!
Susan


debbiR
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Date Joined Feb 2005
Total Posts : 730
   Posted 4/13/2005 2:29 PM (GMT -7)   

Susan:  I would strongly suggest that you take the advice of the gals that have posted and seek the opinion of another oncologist. As someone said, the surgeon nor, in my opinion, a md is not qualified to tell you the pros and cons of any med that deals with cancer. MK is right when she said that if the path report showed something that caused the diagnosis that you received. I would also want to know the results of the bloodwork that was done. Please follow through with the specialist in this area. I know how frustrated and angry you are right now and how extremely exhausted you are from seeing one specialist after another and having to play the waiting game. We all know it is not fun but it is better to be safe than be sorry later on.

Hugs...Deb


 


Bluize
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Date Joined Mar 2005
Total Posts : 635
   Posted 4/13/2005 2:30 PM (GMT -7)   

I know the PS for many years and he is the most professional doctors you could imagine. He really knows his stuff too.  He is very candid and that's one of the things I like about him.  But you are right about the surgeon not knowing all what an Onc would.  The surgical oncologist works with the plastic surgeon that's where I got the referral.

I do have the name of another doc that I can make an appt with. I feel like I've been beaten around with this already and I want to put it to bed.  It's like I almost don't want to go to another doc and go through this again.  I saw that website and was scared to post.

This is hard.

 


Susan


debbiR
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Date Joined Feb 2005
Total Posts : 730
   Posted 4/13/2005 2:46 PM (GMT -7)   

Susan:  Big ((((((((HUGS)))))))).  I know that you feel "beaten up and just want to put this to bed". Honest, we have all felt that way at one time or the other. But, you have to keep going. You have to find out the answers. When you get tired or feel overwhelmed, just come here and post. These gals are the best. We will all be here supporting you.

Hugs...Deb


 


Bluize
Veteran Member


Date Joined Mar 2005
Total Posts : 635
   Posted 4/13/2005 2:51 PM (GMT -7)   
Thanks Deb, I really appreciate your help.  I just called my surg onc's office and left his secy a message about the blood work and the Oncologist he referred me to.  I will probably get a call tomorrow night because he is in surgery all day tomorrow.  I need to tell him about my experience and get the results of the blood work.  I need to close the loop on this.  Now, if the recommendation is to take this drug, I have some decisions to make about having kids..if at all.  This really sucks!  On top of this, I have crohns which is just a joy!  A whole other team of docs there...

Susan


debbiR
Veteran Member


Date Joined Feb 2005
Total Posts : 730
   Posted 4/13/2005 4:59 PM (GMT -7)   

Susan: I am glad that I have been able to help you. Believe me, the gals on this board have helped me so much it's nice to be able to help someone. :) I have a gf that has crohns that also had bc. Her onco and her drs for the crohns work hand in hand as a team. I am glad that you called the surgeon's office to get the results of your blood tests. Be sure and get a paper copy of it for your files. As MK said, if you have any questions about your path report or any other report, come here and post the info. There are members that are very familiar with these and can help you understand what everything means. I still have problems understanding my blood test printouts and I have been getting them for over 4 yrs. lol Thank heavens my dd is a paramedic and understands all of this.

Hugs...Deb


 

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