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Old 03-20-2007, 12:11 AM   #1
Chelee
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Latest Path Report, good thing its gone.

Many of you know of my on-going pain I had in my left remaining breast that I decided to have a prophylactic mastectomy of. I saw my surgeon today and I asked for my path report. The path report says" Left breast mastectomy: Florid epithelial ductal hyperplasia, chronic lobulitis, and duct ectasia. No atypia or malignancy identified.

If I understand my surgeon right, he says there are like 3 stages before it becomes cancer. (Don't quote me...I was in PAIN from my mastectomy...it was so hard to even get there let alone listen.) But he said that "Florid epithelial ductal hyperplasia" is NOT cancer yet. But in time it would turn into cancer. He implied like 8 to 10 years. He said it is still benign at this point and in time it would turn into DCIS and then IDC. (Hope I got this right?) The way I understand it is my breast was full of this nasty stuff. I asked IF that was causing the PAIN I've complained about now for 6 months? He said no. (I am NOT sure I am buying that yet...but we will see?) Something HAD to be causing it?

My concern is since he did NOT touch my sential nodes during this simple mastectomy because it was just a pprophylactic...not due to cancer. I STILL have this horrible pain in my axilla..expect now its about 2 times worse then before the surgery. I asked him about it and he said he doesn't know what's causing it and said maybe it is my port that runs in my upper arm into my chest? (when I first asked him along time ago if it could be my port..he said "absolutely not".) Yet now he says it can be.

I don't know what it is...but NOW after this latest path report of cells that can and would turn into cancer...I want to get to the bottom of it quickly...once and for all. I asked him HOW he could be sure its NOT cancer in my axilla? He said it does NOT work that way. He said I would have to have cancer in that breast *first* and then have it spread to the axilla. (Do any of you know if that is completely true?)

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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Old 03-20-2007, 12:42 AM   #2
mcgle
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Hi Chelee

Don’t want to worry you, but I think it is possible to have cancer in the nodes, though nothing infiltrating is found in the breast. The reason I say this is because I know of someone who had ‘just’ DCIS, and was found to have micromets in the nodes (she is HER2+). However, her DCIS was extensive and high grade, a totally different scenario to yours. I hope you get to the bottom of what is causing this pain.<O:p</O:p

Mcgle<O:p</O:p
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Old 03-20-2007, 03:39 AM   #3
Becky
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Chelee

What your surgeon is telling you is true except for the fact that not all hyperplasia turns to DCIS and then cancer. It is well documented that not all DCIS turns to cancer. The dilemna is "what DCIS does turn to cancer" therefore, all of DCIS is removed to take away this chance.

As for those with DCIS that got micromets in the node, it is because there had to be a tiny spot that was missed as invasive cancer. Tiny, tiny spots can be missed. But you did NOT even have DCIS yet (and maybe never would). You may have inflammed and sore nodes from the port. How many Herceptin treatments do you have left? Do you need the port? Can you get the port replaced elsewhere? Just asking

I think your pathology is wonderful news. Smile away at this.

Love,
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Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-20-2007, 07:08 AM   #4
Lani
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Chelee

your pathology report is not even close to listing microscopic tissues described as possibly pre-malignant (at least according to the literature I have read)

invasive ductal or lobular are the premalignant entities and it is often cited that the precursors of these MAY BE atypical ductal or lobular hyperplasia.

As your hyperplasia does not involve any atypical cells it would not even be considered pre-pre-malignant.

If you lift weights or exercise, you get hyperplasia of your muscles. It is a benign enlargement. In a woman, the breast tissues change with the menstrual cycle and at some time or other all women have hyperplasia of their breasts. I have no idea what degree florid is, but if you were premenopausal at the time of your prophylactic mastectomy, you might want to try to figure out what stage of the menstrual cycle you were in at the time of your operation.

Seems to me your report should be a reason to rejoice rather than worry!
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Old 03-20-2007, 07:40 AM   #5
Lani
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latest stats indicate why sentinel nodes rarely biopsied w prophylactic mastectomy

ABSTRACT: Is Routine Sentinel Lymph Node Biopsy Indicated in Women Undergoing Contralateral Prophylactic Mastectomy? Magee-Womens Hospital Experience [Annals of Surgical Oncology
]
Introduction: The routine use of sentinel node biopsy (SLNB) at the time of prophylactic mastectomy remains controversial. This retrospective study was undertaken to determine if SLNB is justified in patients undergoing CPM.

Methods: Between 1999 and 2004, 155 patients underwent contralateral prophylactic mastectomy (CPM) at the Magee-Womens Hospital of University of Pittsburgh Medical Center. Eighty patients (51.6%) had SLNB performed at the time of CPM. The therapeutic mastectomy and the CPM specimens were evaluated for histopathology. Goldflam's classification was used to determine the risk of malignancy in the CPM specimens.

Results: Pathology in the therapeutic mastectomy specimens included 105 (68%) invasive carcinomas and 50 (32%) insitu carcinomas. Multicentricity and/or multifocality were reported in 49.7%, and 70% were estrogen receptor positive. Two invasive breast cancers and three cases of DCIS were diagnosed in 155 CPM specimens (n = 5, 3.2%). The median number of SLN identified was 2 (range 1-6) from the CPM axilla. Two patients had positive SLNB for metastatic carcinoma (n = 2/80, 2.5%) with no primary tumor identified in the prophylactic mastectomy specimen. In both patients the therapeutic mastectomy was for recurrent invasive carcinoma in patients with a prior history of axillary node dissection. Occult carcinoma was found in five prophylactic mastectomy specimens: two invasive and three DCIS. Only 1 out of the 75 patients not undergoing SLNB at the time of their initial surgery would have required axillary staging for a previously undiagnosed invasive cancer in the CPM specimen on final pathology. Of all 155 patients undergoing CPM, only 4 (2.5%) had identified final pathologic findings where axillary staging with SLNB was beneficial. There was no evidence of arm lymphedema in any patient who had undergone CPM and SLNB at a median follow-up of 24 months.

Conclusion: Although SLNB is a minimally invasive method of axillary staging, this retrospective study does not support its routine use in patients undergoing CPM.
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Old 03-20-2007, 08:25 AM   #6
saleboat
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Chelee-- your path report sounds wonderful. I hope it gives you the peace of mind you have been seeking.

Jen
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dx 4/05 @ 34 y.o.
Stage IIIC, ER+ (90%)/PR+ (95%)/HER2+ (IHC 3+)
lumpectomy-- 2.5 cm 15+/37 nodes
(IVF in between surgery and chemo)
tx dd A/C, followed by dd Taxol & Herceptin
30 rads (or was it 35?)
Finished Herceptin on 7/24/06
Tamox
livingcured.blogspot.com

"Keep your face to the sunshine and you cannot see the shadow." -- Helen Keller
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Old 03-20-2007, 08:57 AM   #7
Margerie
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Congrats on your somewhat unremarkable boob! I hope your axilla calms down so you can enjoy life. It probably is sore from all that inflammation in your breast.

I know you have had such stress. Try to rest and recover (at least for a day!)

Have you found your new onc yet? Hope you can make a fresh start with him/her.
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Are we there yet?


Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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Old 03-20-2007, 09:35 AM   #8
Joy
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Chelee, I'm choosing to think you are all good! And I also hope this is a fresh new start with a fresh new team of docs!
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 03-20-2007, 11:29 AM   #9
Sandy H
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Your report sounds good to me. Why don't you wait until you are healed from your surgery and see how you feel. You may have to do some stretching exercises in physical therapy to loosen up that area. There are lots of nerves around the arm area, having a port I am sure may change how some of those nerves act. Having skin mets and lymphedema in the chest area from time to time gives me many different sensations and some time pain in the fat pad as they call it between the arm and chest. I believe it is called cord syndrome or a tightening of the fat pad. I have been through lymphedema treatment a few times and have had that cord worked on by a lymphedema specialist. One does not have to have lymphedema to have arm pain. If this does not resolve after you are healed from surgery I would at least get a consult for some physical therapy. I just had a friend after 8 years of a bc diagnose, with no recurrence, complain about arm pain and chest discomfort. She had a lumpectomy 8 years ago with radiation. She had been to physical therapy and still had pain. I suggested she see my lymphedema specialist which she did and now she is doing fine or I should say is much happier, she has daily stretching she does and feels so much better. I am not a doctor or even a nurse but this maybe something you will want to think about. Wishing you well. hugs, Sandy
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Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 03-20-2007, 04:33 PM   #10
Hopeful
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Chelee,

I am glad that your surgery went well and that you can now focus on recovering and feeling better. All good wishes coming your way.

Hopeful
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Old 03-20-2007, 09:12 PM   #11
Chelee
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Becky, Thanks for all the great information. Your always so great at explaining things. It sounds like I got most of the information correct other then the fact that NOT all hyperplasia turns into DCIS. Maybe my surgeon said it *can* turn into DCIS and then IDC over time. (Verses that it *does* over time.) I just know I feel a sense of relief that this is over & done with.

My surgeon assured me there was no signs of DCIS...only the hyperplasia...so that was very good news. The only thing left to cause this pain in the axilla *has* to be the port? I've had the port in for 13 months now and I know it sure looks bad on my arm where the cathether tubing runs under the skin. Its all red and has scar tissure built up on it. I do believe I am at the END of my herceptin. But to be honest I've kept my mouth shut since my onc pays NO attention to me or whats going on. If they gave me a few extra herceptin by accident, I sure wasn't going to say a word about it. I missed three wks of herceptin when I landed in the hospital...so this month probably is the LAST of herceptin. I know my nurse just asked me this last time? (I think they are ON to me.) LOL I'm busted. So if they figure it out for sure...I WILL have my port pulled to see if the port is the problem? Process of elimination. My axilla feels like I *scraped* the *inside* of it really hard on a brick wall. It really hurts. I'll give it a couple weeks to settle down and then see about getting it pulled.

One last thing...I am SMILING after getting this last path report...and even more so after hearing from you...and Lani's great information she took the time to post. Its much apperciated.

Chelee
__________________
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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Old 03-20-2007, 11:49 PM   #12
Chelee
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Lani, Your post was very enlightening. Yes I am perimenopausal. Four days after my surgery I was spotting. My body was trying to start my cycle for the *first* time in a year. So that no doubt would explain the high degree of florid my surgeon mentioned. (He said it was really HIGH.) But thanks to you...I now know why. Thanks so much for your time and trouble to post those for me. I am just thrilled now for a change. I've had enough stress this year...its about time I get some good news.
------------------------------------------------------------------------------------

Thanks to each and everyone one of you for your replies. I get so much more here then I could even think about getting down at my cancer center. You guys are all awesome.

Chelee
__________________
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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