Am I missing something? Onc never called me re: pathology

netty46

NEED YOUR INPUT.  I WAS NEVER EVER CALLED BY MY ONCOLOGIST AFTER MY PATH REPORT CAME OUT.. ITS NOW 6 MONTHS SINCE MY ONCOLOGIST HAS SEEN ME.

AFTER MY SURGERY I WOULD HAVE EXPECTED HER TO REVIEW PATHOLOGY AND CALL ME.  I HAD A PARTIAL RESPONSE . THERE WAS SOME RESIDUAL LEFT BUT I JUST FOUND THIS OUT. I AM ASKING MYSELF WHY SHE HAS YET TO CALL OR SEE ME.

ON JAN 3RD I WENT IN SO PS COULD CHECK ME.  I ASKED IF MY ONC WAS THERE AND IF SHE HAD TO SEE ME OR CHECK ME.. THEY RANG HER IN THE BACK (YES A COUPLE OF FEET AWAY)  SHE SAID NO NEED JUST GO ON AND START RADS.  OK.  SO I STARTED RADS. WENT BACK NOW 2 WEEKS AGO FOR OTHER SURGEON TO CHECK ME AND I AGAIN ASKED IS MY ONCOLOGIST SEEING ME.  IM DONE WITH RADS ITS BEEN MONTHS IM HERE AND I LIVE 2 HRS AWAY.  THEY CALLED HER AND SHE SAID NO SORRY SHE HAD NO TIME.  I HAD TO MAKE APPT.  MEANWHILE IM RIGHT THERE AND SHE HAD NOT SEEN ME SINCE NOVEMBER 20TH.  MY LAST CHEMO DATE.

SO THE OTHER DAY I TOLD MY HUSBAND I WAS CONCERNED IF MY PATH SAID PARTIAL RESPONSE SHOULDNT MY ONC CALL TO DISCUSS ? YET SHE TURNS ME AWAY 2 TIMES AND DOES CARE TO CHEK ME.

NOW THAT I CALLED THE SURGEON TO ASK QUESTIONS,I CALLED THE PATHOLOGIST HIMSELF TO ASK HIM QUESTION ETC. SHE RECENTLY HAD HER NURSE CALL ME AND TELL ME THAT SHE CAN SPEAK TO ME THIS THURSDAY BUT I MUST DRIVE 2 HRS SO SHE CAN SPEAK TO ME FOR 20 MIN.  .  ALL OTHER DOCS OF MY TEAM CALL ME AT HOME. IN FACT THE PATHOLOGIST AND SURGEON TOLD ME IF THERE WAS ANY QUESTIONS, CONCERNS WHATSOEVER JUST CALL THEM AND THEY WILL CALL ME RIGHT AWAY. THE SURGEON IS A BUSY VERY SKILLED PERSON YET SHE TAKES THE TIME TO CALL AND SPEAK TO YOU ON PHONE PATIENTLY AND SAYS CALL ME BACK IF THERE ANY OTHER CONSERNS.

MAY I ADD MONTHS AGO WHEN I GOT THE RESULTS TO MY CATS SCAN AND IT SHOWED THE WORD NODULE ON LUNG I ALMOST FREAKED OUT. SO I ASKED QUESTIONS SHE WAS UPSET AND SAID STOP  ITS AN OLD PNUEMONIA YOU HAD IT AND ITS BEEN THERE.  ITS NORMAL FOR ME TO HAVE BEEN SHOCKED.  THEN SHE SAID SHE HAD TO GO THAT I TOOK TOO MUCH OF HER TIME UP WHEN SHE HAD REALLY SICK PEOPLE IN OTHER ROOMS.

I ALSO ASKED HER NURSE IF SHE WILL EXAMINE ME AND SEND ME FOR LABS.  SHE SAID NO!!  ITS BEEN 6 MTHS.  I DID HAVE A UPPER CAT SCAN IN MARCH AND RADS IS THAT THE REASON LADIES?  SHOULDN'T SHE BE CHECKING ME???

IS IT ME OR IS THERE A PROBLEM WITH THIS PICTURE????????

rozem

NETTY there is a problem with this picture.  Especially during active treatment you should be seeing your onc regularly -especially since there was your path report that needed to be reviewed/discussed.    I still see mine every 3 mos and im out of active treatment.  If it is a 2hr drive then she should respect that and call you to review your path report.  I dont care how busy they are they can do this at a minimum.  As for the cats scan, any cancer patient would freak out at the word nodule, she should have pre-empted that conversation to save you from needless worry.  Sounds like the rest of your team you are happy with, I would ask them to refer you to a new med onc.  This one seems awful (sorry to be so frank)

Denise-G

FIND ANOTHER ONC IMMEDIATELY...

This is malpractice at its worst.

edwards750

I agree with you Denise that she should find another ONC but it isnt malpractice - its indifference and that should never happen no matter what. I guarantee you my dr would not tell me she doesnt have time for me...it would be game over for her. You are supposed to be seeing your ONC on a regular basis - every 3 months, then 6 months, etc. My ONC read my Path report and decided my treatment plan based on the findings of my Oncotype report. I like her and trust her. Lets get real too they arent cheap. Mine charges 500 a visit...thankfully I have insurance but still. There are a lot of good Oncologists out there and you can surely find one. There is absolutely no reason to put up with this. Keep us posted. Diane

netty46

Maybe they have signed me off  to die.  Thats what I think. I had 3 good days of crying last week. 

So Far:

I had neoadjuvant therapy 6 rounds of C/T

Surgery with  negative nodes

25 rounds rads with bolus pad.

Another thing that mislead me is when I signed into patient portal all thier notes said Complete reponse/NED.

But actually there was residual.  Am I doomed thats why she does not want to see me.?? Cant help but wonder that.

As some of you might know this is recurrence in same breast after 12 yrs.

netty46

BTW I have had with her Im goging to office depot today to get a small recorder. Appt is tomorrow.

rozem

netty -my onc told me that with neoadjuvant chemo clean nodes are more important than residual in the breast, so the fact that you had clean nodes is a great prognostic indicator.  (((((hugs)))))) and i hope all goes well tomorrow

netty46

Rozem yeah they kinda always knew the nodes would be clear. They saw them in the scans. Well of to see her today. Hugs to you too:)

netty46

Denise malpractice is for the idiot chief of radiology that told me my mammo was clear.

Luah

Netty: Hope you get some answers today. It was my BS who went over the pathology with me, not my onc; this may be because I had surgery first, but generally I think the path rolls out from the surgery.

In any case, you onc sounds very insensitive and neglectful. Following treatment, I was seen every 3 months for first year, then every 6, and now once per year by onc. I have also been seeing my BS.

I absolutely do NOT think you should jump to the conclusion that your onc has written your health off! From what you've conveyed, your stats look good. The 2 questions I would have is "how much residual was there?" and "what role, if any, would additional adjuvent chemo played?"  Keep us posted. 

christina1961

Netty,

You are not doomed!  I was diagnosed triple negative from the core biopsy and had neoadjuvant TAC.  After my mastectomy they found 5-10% ER receptors in the remaining tumor.  That's why my signature reads "ER+".  I did not have any nodes "light up" during the MRI, CT, or ultrasound before surgery but I had 2 positive nodes following surgery (macro not micro deposits - the largest was 8 mm.)  My tumor got a lot softer and the oncologist thought I had a complete response so I was shocked and upset when it was 2 cm at the time of surgery (it had originally been 2 cm on the MRI and 2.5 on the mammogram.)  So it may not have even shrunk any, just became less dense.  I had additional chemo after surgery in a clinical trial.  I am still NED 2 years, 3 months out from diagnosis.  My oncologist is now seeing me every four months.  I do not get scans, but he does take blood for tumor markers. I just wanted to share my experience to give you some hope, but I also encourage you to find a more caring oncologist. I'm sorry you were treated like that. 

netty46

Hi ladies, I saw the doc. She said she felt it best that we speak face to face cause I'm the kinda person that really needs to hear things directly. She said I had 80percent response which is great. She said that chance of recurrence to chest again 5 percent elsewhere less than that. These numbers kinda did not sound right. She is a specialist in breast cancer and better yet her specialty is triple negative. I asked to repeat that and she said she has delt with alot of my cases and she will not just throw words out there. Ok then she said my tumor had something good that was discussed at Texas cancer conf. In December

. Sorry I cannot remember name it has like GR in it. She said it too quick. She said dendreon pharmaceuticals is actually using what my tumor has too make a vaccine. I was kinda shocked. She said lots of women have this in thier tumor and it's a good thing. I asked why she waited so many months too see me. She said if she thought it was dire she would never let not even two mths go by.

netty46

I will add that I do go to a cancer research hospital. I'm kinda lost cause on this site I have heard bad numbers. One lady said almost 50 percent chance of it coming back or spreading. I told my doctor that and she urges me and all her patients not too read these things. I also thought maybe she was trying to calm me down with these numbers but I sent for my clinical notes and it's all there every word she said in writing with her signature. Don't knowb5 percent sounds good but I'm still surprised.

Luah

Netty: It's too bad she didn't do this sit-down with you earlier, but she sounds on top of things to me. I'd take her words to heart and move on... you have a lot of living to do!