My ONC won't call me back!

Sparrow

My ONC won't call me back!

Sparrow

I'm just about at my wits end about this-  do you think I'm being unreasonable?

I met with my ONC for the 1st time 10/16.  My Oncotype DX test results were supposed to be in. My surgeon was supposed to have sent my samples in weeks ago but he didn't after my bilateral lumpectomies on 9/1.

Fine, not the ONC's screw-up.  I'll wait.  

When I had an ultrasound before surgery the radiologist saw (and pointed out to me on the screen) a papilloma under my left nipple.   He explained that a single papilloma is usually 'nothing to worry about'-  and what it is, how they're fairly common in women my age.  He also said the same thing about 2 other suspicious findings that turned out to be cancer after core needle biopsies.  The papilloma was not mentioned in the ultrasound report.

I met with my BS and asked him about the papilloma.  He got a worried look on his face and left to print out the US report.  He said, 'Well, it's not in the report.'  I took that to mean it wasn't important...  it bothers me, though.  I have a family history of BC (mother, grandmother, both great grandmothers on my mother's side).  I would really like this thing biopsied or at least given another look.

I brought this up with my ONC.  She wrote an order for another ultrasound.  I went to the US appointment last Wed. and the doctor on duty refused to do it.  (???)  My insurance approved it, BTW.

I have been calling my ONC since this happened.  I'm not trying to be a pest-  I just want to know why the US was refused.  I have called 3 times.  2 times a nurse has called me back and promised to get to the bottom of this and call me back the next day.  No one has ever called me back. 

It's been a week now.  I called my ONC's office this morning to make a new appointment.   Maybe she'll only talk to patients in her office. They said they would call me back to make the appointment.  UGH, the way things have been going I doubt they'll even call.  >:( 

I called Genomic Health today and they said they faxed my Oncotype score to the ONC yesterday.  

I think I deserve at least a return phone call from someone with answers.  I called my surgeon once with a question and he called me right back, so what is the big deal?

I'm so far out from the date of my surgery and I still don't know if I need chemo and/or rads.  I hope it's not too late.

Should I get a second opinion?  That would mean going outside my NCI designated cancer center, the only one in my area.  

I just don't know what to do. 

unklezwifeonty

Time to fire the oncologist and get another one.

concernedsis

Be the squeeky wheel. Go the the office.

Sparrow

My husband and my therapist have offered to call on my behalf and I may take them up on that... all I want at this point is an appointment so my ONC can explain things more and give me some reassurance... and my Oncotype score.  >:(  They haven't called yet.  There's less than an hour to go till 5pm my time.

I don't want to cause trouble for anyone and I don't plan to.   My father was a doctor, I know how it is.....

I don't want to go to another doctor who is at a less than NCI-designated cancer center.  As of now, I have really good insurance.  I can't get a 2nd opinion at the same place.  They are 'all under the same umbrella'  they told me,  whatever TH that means.

Have I been put on some kind of sh*t list?  I couldn't help it, when the ONC discussed chemo with me I started to panic and cried a little because of my family history of leukemia and the risk of getting leukemia from BC chemo. My Oncotype score wasn't even back yet for heaven's sake, why even worry about it.  (???)  I was never mean or difficult at any time.

Am I the only one who lost it at the 1st ONC's appointment???

portiasproudmom

Sparrow, keep calling!  I have a story for you.  I saw my onc for my six month follow-up visit a few weeks ago.  Her nurse called me a few days later to tell me that my liver enzymes were a bit high, and to come back in for another blood draw.  I did that, but didn't hear back from her office regarding my results.  I called for info and they told me the results hadn't come back from the lab.  I called again two days later--same response.  I had a feeling something wasn't quite right, but waited several more days.  I called again today, and the triage nurse called me back and apologized.  Apparently, there wasn't enough of a sample to do the test on.  I had to go back in for another blood draw today.  They wouldn't have ever called me!  I'm so glad I kept pressing.  My brother says that you have to be "the pimple on their asses" in order to get results.  Be that pimple!!!!!

Hugs,

Karen

Sparrow

Thanks, you guys!!!  Karen, I'll try again tomorrow!     Maybe I'll try the husband & therapist route too...  how many friends/family does it take to screw in an ONC's lightbulb??   XOXO!!!  

unklezwifeonty

Your life is precious and you are the paying customer so you should not have to deal with this baloni. But maybe they are waiting for oncotype dx results? If so, the nurse should say that and reset your expectations rather than keep you waiting. It isn't always easy dealing with doctors offices and sometimes you have to be very clear and very specific in what you want. If that does not work, change oncos. I'm sure there are dozen others in your area whoare equally reputed and accredited with NCCN etc.

Sparrow

"Your life is precious and you are the paying customer so you should not have to deal with this baloni." Yes!    "But maybe they are waiting for oncotype dx results?"They got them yesterday......  AAAAAGH!!!!!! " It isn't always easy dealing with doctors offices and sometimes you have to be very clear and very specific in what you want. If that does not work, change oncos. I'm sure there are dozen others in your area whoare equally reputed and accredited with NCCN etc. "I'll give them one more chance tomorrow, these are the only NCI approved people in the state.  :(Thanks, Onty!   

LittleRed

Sparrow:

I don't think they're doing right by you. 

My rad oncologist called me after my first day at 9 o'clock at night to ask how I was doing.  The techs apparently told her I was really nervous when I went in for my fit and marking.  I never said boo to them, but they figured it out.  She told me I was a model patient, everything went great - she wanted to reassure me and make sure I was OK physically and emotionally.

My breast surgeon called me at 7 o'clock on a Friday night to tell me what the final node biopsy results were so I didn't have to wait the weekend.  What...?

I thought they both went above and beyond, but they didn't - they knew what I was going through.  You should at least expect a call back during office hours! 

Go be a Super Pest and bring someone with you (A back-up Super Pest is always good and s/he can take notes for you.)  Even doctors within the same practice can be very different, so don't be shy about changing if you need to.  My first med onc interview was a complete bust - I said to myself NO WAY - this person is scary.  I went to another onc in the practice and she is amazing and kind - and since we're going to continue to work together over at least the next 5 years, I needed to have someone I have confidence in.  I know you are probably discouraged and frustrated, but hang in there.  Best of luck. 

Be good to you -

unklezwifeonty

Check out vitals.com for doctor recommendations. Here is one:

http://www.vitals.com/doctor/profile/1093776056

Momcat1962

Not unreasonable at ALL! I would be FURIOUS! Either geta  new ONC or keep calling, and then get one. File a complaint with Licencing Board! zThat is ridiculous, not to mention neglectful and inconciderate.

unklezwifeonty

I can't believe that there is only 1 NCI-designated (whatever that means) place in the entire Atlanta GA area.

Please find another doc using the vitals.com website.

Sparrow

Thanks, you guys!  I am literally tearing up from your support.  

I met someone on this board who had the same ONC and she loved her.  I'm not sure what the problem is...  maybe this ONC just doesn't like me.  Gee, what is this-  junior high school?  :O

My husband is going to call tomorrow and I'm going to call my BS again for another referral *sigh* although I really hate to bother him.  I'll have my therapist/Super Pest call too, LR.  

I have lots of friends, everybody seems to like me, WTF??? 

Sparrow

Onty, there's only 1 cancer center in GA that gets the National Cancer Institute's stamp of approval.

 http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

I can find other ONCs, I just was hoping to get a really good one at a really good teaching hospital.  I hope I can see someone else at Winship  : /

redskies

I changed my onc, and am so very happy I did!  It has very literally changed my world.

I think you need to find a Dr who makes you feel good, and part of that is going to have to include prompt responses from the Dr and/or staff.  I know onc's have busy and tight schedules, my new one certainly does, but your questions and concerns are real.

The distress you are feeling is a part of all of this for everyone, as far as I can see... and given your family history, I know this is especially hard.

 From what I've read through my own research, your onc should expect, look for, understand, and address your feelings of distress and do whatever possible to minimize the stress you are going through.

 Put more faith in your feelings than the NCI designation.  The fact is, this particular onc is not taking good care of you.

 And if it would help to see your test scores and path reports for now... go in to the office asap and ask to speak directly with the person who can make copies of your reports while you wait.

Good Luck, Sparrow,

Lynne

deborye

Sparrow, I feel for you.  I was lucky, I got all my results within a few days and path report within a week.  This must be driving you nuts.  I'm hoping this gets resolved soon.

I wish you the best,

Debbie

cellardoor

That's absolutely unacceptable, imho! You're handling this with much more grace than I would have. If they don't return your calls by tomorrow, I'd visit the office and definitely ask for copies of all the reports. Your oncologist should be making you feel comfortable and easing the treatment process as much as possible.

GL!

katsy 

Sparrow

Awwww, thanks, you guys!  I got a tip just now about a great ONC at a different hospital and I'm going to follow up on it, NCI designation be damned.

I thought it was just me... but a little bird told me it happens a lot at my cancer center.  Who knew?  

Sparrow

Well, miracles can happen!    I asked my husband to call for me today and they not only called him right back, they went in depth with him about all of my concerns. Later on my oncologist actually called me too!  :O

She told me my Oncotype DX score is 16 and I'm SO completely, ecstatically happy that I do not have to have chemo!!!!  

My onc asked the head of the breast imaging dept. to look over my US images from July. He said there's no reason to be concerned about the papilloma...  I am willing to trust him.  He helped develop the whole BI-RADS system.  I think he probably knows what he's talking about.. 

Whoo-hoo!!!  I'm going to dance around the house for awhile!!!    -Tamara 

concernedsis

Great news Sparrow!!!

deborye

Awesome news Sparrow♥♥

London-Virginia

How fantastic!!!  many congrats        xxxxxxx

Sparrow

Thanks so much, you guys!!!  

Chemo was my personal boogeyman. I don't feel doomed anymore.    I'm not afraid of rads or Tamox.  Bring it on!

I feel like if I look out the window and squint hard enough I can almost see normal from here.  Last week it would have taken a telescope.  

Love to you all!!!   

LittleRed

Fly high, Sparrow...Fly high!!

Be good to you -