Help me trust doctors again...

pixelsupply

Sorry for this lengthy submission but I can't let this go and am hoping a fresh perspective could help.

I am  48 years old and was diagnosed with Stage llb ER/PR+ cancer in May of last year. My oncologist was great and, in fact, with neoadjuvant chemo I was one of the lucky people who had almost a complete response.

Because of the great success with chemo I was told I would need only a lumpectomy or partial mastectomy. I went and saw my PS and he said that an oncoplasty could save my breast -- from a DD to lovely b cups...great! I saw pictures and you couldn't even see a scar.  Wonderful! I won't have to wake up every day and think about this hell I have been going through.The cancer would be gone and my life could get started again.

Then I meet with the BS.

She says things like,  "I have been burned by neoadjuvant therapy" and "MRIs don't really show you the whole picture"  Umm I'm sorry is it 1950 or 2011? Basically telling me that the good news I had just heard and 20 weeks of chemo were a waste of time.

She continues to tell me all sorts of horror stories about what could go wrong. Nothing pertaining to my case specifically, just all the things that could go wrong.

I had to email her with questions because she had gotten me so upset that pertinent information specific to my surgery were never given.  The email cleared up a few things and she said it looked like due to calcifications that a 5cm mass would be taken out.  5 cm! I have a 7mm tumor. So I ask, "Are calcifications cancerous - No -  are they precancerous? - No. So why are you taking that material out". "Its what we do" she answered. So much for treatment being tailored to the patient. 

I know, I should have gone to another surgeon but I thought if I offended her I would be treated worse. So, I was afraid to move on.

Then surgery. Bottom line...I went in with a 7mm tumor, possible calcifications at 5cm and she took 16cm out of my breast! THAT's 8 INCHES. In fact she went in twice. The second chunk she took out was 6cm or about 3 inches more...my original tumor was only 7 cm -- she took twice the amount of my original tumor.

She did not talk to me before the surgery. She did not discuss the findings of the needle localization with me prior to surgery which would have shown the calcifications. If she had, I could have told her going back in for safe margins was alot less frightening and upsetting to me than losing my breast, having implants or going through that horrible DIEP flap. That a doctor would need to be told that is a bit ridiculous but as this &*%&  BS said to me at the pre- op "Well patients get so upset about going in again for safe margins". As opposed to loosing my breast and more surgeries and scars? Really? How about asking your patient and finding out what she wants? It is her life and body after all.

She didn't talk to me after the surgery, didn't even check in.

And at the post op, she mumbles through the pathology report, with a few words - lymph nodes clear, safe margins clear...I ask about cancer in the calcifications, and she mumbles some more about how the pathologist usually says and she flips a few pages, and eventually never answers my question.

I couldn't tell what had happened to my breast because it is filled with fluid and was swollen. I thought she had only took the 5cm, since I wasn't told otherwise. That's right the doctor didn't have the decency to tell me she took 3 times the amount we had discussed.

I had to find out by reading my own pathology report--that I had to request, of course. The worst part was that the material she took out wasn't cancerous. IT WAS BENIGN! 

In other words she could have gone in, taken biopsies of the calcifications or just left them. And the safe margins would have been met according to the pathology report. I would have kept my breast.  

I have been told that this is a judgment call by the doctor. So let's review...you have a patient that has had almost a complete response with chemo, no lymph node involvement and has had proven excellent response with hormone therapy, and you decide to be as aggressive as hell? When, in fact, you could have simply biopsied the calcification or left it and waited for the pathology report. And if necessary could have gone in a second time?

Now when you get a hair cut aren't you always thinking don't cut too much, we can always cut more? Hair grows back, breast tissue doesn't!

To make this even worse, by the time I saw my new BS, no one told me that the tissue inside my breast would continue to die. I now have barely an a cup, that is hard and nasty with horrible wrinkling . I have been left mutilated. When I didn't need to be. The other BS said she wouldn't have gone back in...

I know alot of people have lost more. But the thing is I didn't need to lose my breast! I wake up every day crying. I can't work, I can't think about anything but what this %&^^ did to me. I feel like I have been brutalized.

I've tried meditation, prayer, I just can't let it go...any perspective here. I was so close to  seeing the light at the end of the tunnel. Instead my future is scars, pain and more ugly surgeries not to mention trying to run my own creative business through all of this which has suffered greatly due to the emotional upheaval. I keep thinking "if only she had talked to me, let it be my decision..."

Learn from my mistake,  if any of you are even the least bit uncomfortable with your doctor, FIND ANOTHER ONE!

NatsFan

Pixel - I'm sorry you had to go through this.  You're absolutely right - it should have been your decision, and that control was taken from you.  Someday you will trust a doctor again, but never as fully or innocently.  As Ronald Reagan used to say, "Trust, but verify."  

My mother died of b/c 30 years ago because she trusted the doctor who told her the lump in her breast wasn't cancer - he said he could tell that just by feeling it.  No biopsy, no referral to a specialist, nothing.  This despite the fact that her sister was a b/c survivor.  She went to him every 3 months for a year about that lump, and he always dismissed her fears - he was the doctor and he knew it wasn't cancer.  And people believed their doctors in those days.  After a year she was symptomatic, and was dx as Stage IV from the get go.  She died shortly after that.  I learned a lesson from her mistake that I carried all through my own b/c journey.  I got second and even third opinions for EVERYTHING, read everything I could.  Most importantly I made sure that my doctors understood that although we were a team, I was the leader of the team, not them.  I would certainly listen to their input, but in the end they needed to understand that I made the final decisions about my care, not them.If a doctor couldn't handle that, or couldn't or wouldn't answer my questions and address my concerns, they did not remain on my medical team.

Thank you so much for having the courage to share your experience.  If even one woman is moved to get a second opinion because her gut is telling her that a particular doctor isn't right for her, then your courage in writing this will have helped another woman.

If you're up to it, you may want to check with the hospital (if your surgeon is on staff) or your local medical board about filing a complaint.  You may be able to save another woman from going through what you went through - what happened to you is indefensible and that surgeon needs to be stopped from doing this ever again.

If you do decide to do reconstruction, a DIEP isn't as "horrible" as you imagine.  I know it's a lot more than you were prepared to do, but many women, myself included, are pleased with our results.  Not like the original equipment of course, but much better than I could have imagined. 

Hugs to you.  

bak94

I am so sorry you went through all that, it is just not right. Yes, she should have spoken with you and listened to what you wanted and not decided for herself. I feel for you, and that you may have more surgery ahead of you.

I also want to say I am so glad you had such a good response to chemo! WHoo hooo!

pixelsupply

NatsFan:

Thank you so much for responding. I wish I had your courage. I am so sorry about your mom. I guess we can take some solace in the fact we were diagnosed at a time when medical science is a bit more advanced. I don't know how you ever talked to doctor again after that. 

But you are so right...I love what you said. It's how every woman should approach her care. I am going to print it out and have it ready whenever I talk to a doctor! Its also nice to hear someone agree that what she did was wrong. No one understands unless they have been through it...

Thank you also for the great idea of filing a complaint. As you said I don't want this to happen to another woman. She is simply a horrible doctor! And I think that might allow me to move on. You are a wonderful person! I wish you all the very best!

pixelsupply

bkj66

Thanks for responding bkj66! It is easier to handle when wonderful caring people like you tell me I am not crazy and that what I am feeling is legitimate. 

NatsFan

Pixel - you sound better already. You are not alone and your felings are absolutely legitimate. That's why I love this website - we're never alone because we have thousands of sisters here who "get it".  

Hugs!