Dear doctor, I wish ...

As I said above, my first onco was horrible.  I failed to mention that his receptionist was/is the best.  She made sure I got all my forms for Social Security Disability and a huge tax break available to disabled people.  She sympathized with my situation.

Once I was sobbing about a drug I could not afford and she was doing the "there there, I have called the social worker"  my onco walked around me 3 times to continue dealing with other patients.  Did I mention I was sobbing?

This is the doctor who got me to stable so I do have to thank him for that.  However, he failed to give me any information because he was God.  I had no right to be questioning him.

I changed hospitals, got into a clinical study, and my doctor is English, a real Dr. Bean (think sliding hospital furniture and sub-coordinated doctor).  The nurse I was given, spent 2 and a half hours explaining every scan, every question, every side effect.  She never once looked at her watch, made me feel there were other patients waiting.... she was the nicest thing to happen to me since the words, "You have breast cancer".

So sometimes the receptionist may be your very best friend in a time of need.

SHELLEY:  That is horrible.  What an idiot that doctor is.  Is it possible for you to see a plastic surgeon?  I am truly sorry you have to go through this on top of breast cancer.

On a positive note, dear doctor, thank you so much for calling me to tell me by genetic testing came back BRCA1 and 2 negative instead of waiting until my next appointment.

when I told my PS after BLM and implants that they were way too lopsided and I started crying,you should not have answered,"It's better than a flat scar'!!!!!!!! You freaking cold ass*****!

Dear Radiation Oncologist: I wish you told me how bad radiation could hurt. I wish I new that I would need meds to take the pain away inside.

Dear doctors,

Please don't argue with me about what I do or don't feel.  Yes, I feel heat in my breast during radiation treatments (I can tell when the machine turns on and off by the physical sensation).  Yes, it was some of the worst pain I have ever felt when you plunged that wire into my breast before surgery - and then had to remove it and re-insert it because you missed the spot the first time.  My screaming was reflective of my experience.  And yes, at the initial mammogram that caught my DCIS, I felt pain at compression at the exact spot that turned out to be the DCIS.  It doesn't matter that you haven't heard of other people having that experience.  _I_ had that experience.

Please believe me when I tell you that I am super-sensitive to medications.  I hate spending the next 10 hours in recovery trying to surface because yet another anesthesiologist has given me the standard dose of anesthesia, even after I spent 20 minutes with him before surgery explaining about my reactions and showing him my prior anesthesia records.  And PLEASE make sure the recovery room nurses know about my medication sensitivity, too.  The last nurse almost killed me with a pain medication overdose.  (She had to spend the next 90 minutes reminding me to breath.)  Only AFTER over-dosing me with pain meds did she look at my records and see the big "SENSITIVE TO MEDICATION - REDUCE DOSAGE" sign I had written on the front.

Please follow-up on the tests you order.  No one told me (or even noticed) that the follow-up pathology on the tissue removed during lumpectomy turned out to be ER/PR negative until 2 months later - and half way through radiation.  I may have made a different choice (and returned to the OR for a mastectomy instead) had I known this earlier.  Granted, it was an unexpected result.  All the more reason that you should have followed up on it.

And most importantly, don't lie to me.  It makes you look like you don't know what you are talking about and/or like you are untrustworthy.  Don't claim that I won't have any skin problems and won't be tired from radiation for at least 4 weeks as long as I exercise regularly.  My skin was pink and sunburned looking after 2 treatments - and I need a minimum 2 hour nap every day I have radiation.  And I'm exercising at least 30 minutes every day.  Don't claim my recurrence risk after lumpectomy and radiation will be the same as after a mastectomy.  There is not one study that supports this.  (Survival rate, yes.  But not recurrence rate.)  Don't cheerfully announce that my skin "looks great" on day 16 of radiation treatment when it is bright red, tender, swollen and itchy.  If this is "looks great," I don't even want to think about what "looks uncomfortable" is going to be like.

Whew!  That was great.  Thanks so much for the thread

(And to be fair, my surgeon and medical oncologist have both been great and the surgeon's office manager is a miracle worker.)

Linda

One study that showed no statistical difference in recurrence rate following  either lumpectomy + radiation or mastectomy. Only mastectomy + radiation was significantly lower.

Int J Radiat Oncol Biol Phys. 2009 Mar 1;73(3):734-44. 

Ten-year recurrence rates in young women with breast cancer by locoregional treatment approach.Beadle BM, Woodward WA, Tucker SL, Outlaw ED, Allen PK, Oh JL, Strom EA, Perkins GH, Tereffe W, Yu TK, Meric-Bernstam F, Litton JK, Buchholz TA. 

Hello everyone,

My name Sol, and I am writing on behalf of my sister, because she is not good with English. I went to India (New Delhi) from USA to support her financially, and she came from East Africa, I could not bring her to USA because of visa issues and the processing time. It has been 7 months now in India Apollo Hospital and things are going wrong and I am very frustrated I feel I am in a dark.

Her Med/surg. Onc decided to give her Taxol (100 mg) and Herceptin (110mg) every week before surgery, they said to shrink the tumor because it was big. After taking 4 cycle of Taxol and 7 cycle of Herceptin, her white blood cells drops very low even after given the injection to boost the white blood cells. The Surgeon decided to do surgery and she had the surgery (mastectomy on her right side). The pathology report shows ER/PR+ and HER2+++ so the doctor decided to continue with Herceptin and Taxol every week.

Bad news. One week before she completed her cycles she has two lumps on her right armpit where she had the surgery, and we decided to do bone scan, Pet scan and cat scan; bone scan and cat scan showed bone mets + the lumps she had on her armpit, but pet scan only showed the lumps on her armpit. I was devastated, and did not know how to tell my little sister, finally I told her the truth and I cannot tell you how devastated she is. Now the strange thing is onc. Surgeon took out the lumps and the pathology report shows different when it comes to ER. Previously it was ER/PR+ HER2+++, but now she is ER-(negative) PR+ HER2+++. Could the pathologist make mistake on the previous one or may be on the recent one? This is bad; she already took a lot of chemo. What are her options now? Does this mean Herceptin failed to work on my sister. We talked about hormone therapy but with ER- it will only respond 30% they said. Some one I need you help if you can as soon as possible. I would never wish the darkness I am feeling right now to anybody.

Please do it for my sister.

Sol

Dear Onco: You're a perfect fit for me. Thank you for your honesty, your humor and your willingness to discuss all of this with me. It always seems too hurried, but that may be because I think you're someone I could enjoy a very long cup of coffee with sometime. I certainly cannot fault your in depth analysis, opinions and clarity of options. Even when you think I'm being totally obtuse, you allow me to clarify and that really matters-even if I just clarify myself into confirming that I'm an idiot.  

I also wish for you a monthly updated "newsletter" feed from this thread. Not because I think you have much to learn from it, though we both know there is always room, but because your on-call docs could have their eyes opened in a big way. Wouldn't hurt them. Trust me. Besides, I think you would enjoy and appreciate the words in these pages.

In fact, I think you would push to make letters like these required reading for the entire staff.  I even think you might make their lessons a regular discussion on standard of care.

I wish the rest of your practice could even touch your standard.