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Old 04-09-2007, 08:37 AM   #1
Emelie
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Unhappy Path report contradiction

I hope everyone had a nice Easter. Cold, but nice. I am hoping someone can help me with this. I got my surgical Pathology Report on Friday following the MRM from the previous Thursday, from the surgeon who said everything "looked great". She said I had an excellent response to Taxotere and Herceptin. I was of course, very happy to hear this. I got a copy of it and read it in the car on the way home. I was shocked at the last sentence. Here is somewhat abreciated version of the report:
The Breast area: Contained scattered foci of residual intraductal carcinoma with degenerative changes in neoplastic cells and no evidence of repopulation.

Lymph Nodes: 4 showed scarring with histiocytic infiltrates indicative of total regression of metastatic carcinoma
2 showed scarring with histiocytic infiltrate and residual degenerated neoplastic cells
2 no evidence

Axillary Fat: Single lymphatic 0.55 x 0.2 MM filled with repopulated viable neoplastic cells, intermediate grade nuclei, mitotic figure present.

The last sentence has sent me into a fit. I am wondering why my surgeon did not discuss this with me, and what this acutally means. Scared doen't even come close to how I feel now. Did this area just not responde to treatment? How much more is there that did not respond? I am scheulded for radiation beginning in 2 weeks, but now I am not sure if that is enough?

I am hoping someone with more experience with this can help me figure this one out.
Emelie
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Old 04-09-2007, 04:42 PM   #2
chrisy
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Don't you hate confusing reports!

When I get stuff like that, I go right back to the doctor and ask them for explanations of everything - and what should be done about it. Sometimes things read worse on reports than they actually are, get some experts to read and interpret this for you. If you're not comfortable with the answers, get a second opinion.

Take care
Chris
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 04-09-2007, 05:48 PM   #3
Mary Anne in TX
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Don't they know that we hang on every single word in those reports! I must have read and re-read mine 100 times! It took me almost 10 months to get really brave and ask all the questions I wanted to ask. I've been really lucky to have an onc who says; "I want to go over the last phrase on your report with you", etc. God blessed me with a wonderful friend who found my doctor for me and then followed up to see that I called and that they gave me an appointment! Sometimes friends are the bestest blessing of all! Call and ask or whatever you have to do! I'm better in person, but get what you need to know to give your mind a bit of a break!
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Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 04-10-2007, 06:57 AM   #4
Emelie
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Thanks so much for responding. At least now I know I am not the only one who reads something that doesn't sound "excellent" and thinks it is not right. Sometimes I think I read something into these reports, but this one does not sound good any way I read it. Unfortunately Mary Ann, I am still gaining my courage to ask all the questions I have, just like you did. I got a hold of my records one day during a treatment and saw the doctors comments. The first sentence was " Emelie had a lot of questions today". Well ya! She never volunteers anything to me. She never went over my first path report, or the one that showed I was Her2 positive.

Sorry for the ranting. I just don't trust these doctors to do what is right for me. I also feel that on top of this disease, I now have to learn medicine too. I am also learning to forge through the fear that I have every day.
Enjoy Spring ladies, we all deserve it.
PS-- How do you post a signature. I went to Edit Signature, but it has not appeared on my posts? Maybe it will be on the bottom of this one.
Thanks Emelie
Hey, it worked.
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Old 04-10-2007, 08:53 AM   #5
Jean
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Thumbs up

Dear Emelie,

Don't you think the Cancer was easy when compared dealing with some of these
doctors? I only wish they understood how important each and every detail
is to their patient. To them it may be minor, to the patient it is everything.

Well, at least now you are aware that your dr. is not a detail type. You will
have to pin him/her down with your questions. Please let us know the
response and I hope you begin to feel better.

Think of the positive side that you are having a good response with treatment
and the rest of your information will follow asap.

Wishing you the best.
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 04-10-2007, 01:21 PM   #6
Stephanie B.
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I know what you mean. I got a copy of some PET results from the nurse one day when I was in for Herceptin. I had an appt the following Monday with my doctor because we knew from the results I would have to start chemo again. I knew enough to know that the results were not good, but I didn't understand some of the words. I googled "Chemo terms" and was able to find out what most of them meant. You might try this while waiting to talk to your doctor. I now do this on a lot of my results and am glad to find that some of the terms that sound scary aren't scary at all just a long word to say something simple.


Good Luck
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Old 04-10-2007, 02:30 PM   #7
Chelee
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Emelie, I had a breast MRI report that I wasn't real happy about. I goggled the things I was upset about that did not sound good. (Since my surgeon nor onc would talk to me about it!) Then thank goodness for this board and Becky...she was kind enough to explain the one part of my MRI that had me all stressed out of my mind. I felt so much better after she broke it down and told me what it all means since my DOCTORS WON'T.
In fact...hang in there and maybe Becky will show up...she is such a smart cookie. This stuff comes so easy to her, and best of all she can explain anything in such easy terms that you can totally understand every word. She is one in a million.

On another subject you brought up and I can relate too. I got my oncologist progress notes a while ago. Just like you I found where my onc mentions several times that "Chelee was here with all kinds of questions". Yea...DUHHHHH...maybe if she ever answered any of them I might NOT have any! (Do you think!) I've even complained down there that I get really tired of having to spend all day at the cancer center and come home and spend *hours* & days online researching every word on my reports/scans because they just won't do it. Instead they will tell me about the weather, their car that just broke down...anything BUT what I just asked them. ARGH. So don't apologize for what you call a rant...I can totally understand. That's what we are here for. You are not alone in this mess.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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