HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 12-09-2014, 03:41 PM   #1
bejuce
Senior Member
 
bejuce's Avatar
 
Join Date: May 2009
Posts: 510
Recurrence rate after 5 years for ER+/PR-/HER-2+?

Hi HER-2ers,

Last Friday I learned of a fellow BC survivor who just found out her cancer recurred in her bones and liver at full speed. She was diagnosed shortly after me while and is 5 years out. Her tumor was ER+/PR+/HER-2-. I know estrogen fueled tumors can recur between years 5-10 at a higher likelihood than us HEr-2+ folks. But how about when your tumor is mostly HER-2, PR- and only 30% ER+? Does the recurrence pattern follow that of ER+/HER-2- tumors or is more aligned with the HER-2+/ER- ones? That is, how anxious should I be now that I am 5 years out? My friend's news has left me sad for her and her family and worried about me. Can anyone comment on the latest and greatest HER-2 recurrence rate knowledge?

Thanks!!!

Bejuce
__________________
ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


bejuce is offline   Reply With Quote
Old 12-09-2014, 08:42 PM   #2
Lucy
Senior Member
 
Join Date: Oct 2014
Posts: 285
Re: Recurrence rate after 5 years for ER+/PR-/HER-2+?

I can't speak to the 5 year recurrence rates but I did want to say something. First, I totally get being concerned about the situation but the fact is, you can't (or at least shouldn't) compare your situation with your friend's because everyone's experience with cancer is unique. For me, I'm aware of the things that could happen but I don't dwell on them because I figure if they do happen, I'll need my strength to deal with them then and I don't want to waste the energy now waiting for them to happen. I figure I can cross that bridge if I ever come to it and I try to stay optimistic that I won't ever come to that bridge. That's all I can do because I have no control over whether or not it comes back or spreads. But I do understand your concerns and I know it's easier said than done but try not to stress about it and maybe talk to your doctor about your concerns - s/he could more directly speak to your specific situation. (sending you cyber hugs because I feel like you could use a hug)

P.S. love your picture.
Lucy is offline   Reply With Quote
Old 12-10-2014, 02:17 AM   #3
JennyB
Senior Member
 
JennyB's Avatar
 
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 382
Re: Recurrence rate after 5 years for ER+/PR-/HER-2+?

Bejuice I too have often wondered this too as my tumour was 50% ER but that was weak and patchy. I use this information to talk myself down when I do start thinking of it persuading me that it is more favourable helps a lot!!
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
JennyB is offline   Reply With Quote
Old 12-10-2014, 09:08 PM   #4
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,151
Re: Recurrence rate after 5 years for ER+/PR-/HER-2+?

I am over 10 years out and I was Her2+ (strongly), Er 50% and PR neg. I am still here and so will you
__________________
Kind regards

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 15 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"
Becky is offline   Reply With Quote
Old 12-10-2014, 10:10 PM   #5
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,804
Re: Recurrence rate after 5 years for ER+/PR-/HER-2+?

Can't believe it's been 11 years and 4 months since the first diagnosis of my breast cancer.

Statistics is just statistics. It paints an overall picture, but can't guarantee each individual case will be the same.

My recurrence was found in the fourth year after my initial diagnosis in 2003. Herceptin wasn't available back then so I did six rounds of FEC plus standard radiation treatment. I'd read about the high recurrence rate of and Herceptin for Her2, and asked (the surgeon) for a mastectomy and (the oncologist) Herceptin. The lady surgeon persuaded me otherwise and I underwent a lumpectomy plus radiation plus chemo (Herceptin wasn't approved for early stage yet and the medical oncologist told me FEC was just as good.)

The following three years I continued to have very painful mammograms. But because the report had been 'clear', I thought I belonged to the group of women who'd always have painful mammograms. Until I'd become so weak/tired/ill and had to take off from work. Went to a weekend clinic just in case my employer needed a doctor's note, and that's when I (and the weekend clinic physician) realized my physical problems might have been related to the breast cancer. Because at 2.5 cm (about an inch in diameter) it had become 'palpable'.

The previous mammograms did not missed the tumor. It was the doctors who read pictures had missed it. They had misinterpreted it as 'scar tissue'! I doubt this day and age anyone would make the same kind of mistakes as Her2 is now a well-known subset. But you never know.

Guess what I was trying to say is, don't worry about the statistics. Don't let down your guard because of the statistics. Be your own best advocate. Know our body well. And when in doubt, go to the doctor. When in doubt of the doctor, go get a second, even third opinion. Hopefully the technology now is so good (digital and all) that no 'hard to interpret' excuses will ever be given for any mis/delayed diagnosis.

By the way, the lab work usually will shed some light as well. I can't count on mine because I also have five slow-growing brain tumors (unrelated to bc) in the center my brain. The official classification of this rare type of brain tumor has been changed from Grade I to Grade II, so my 'rap sheet' has now listed it as 'brain cancer'. Guess I've had brain cancer since I was born ... (yet still here - what a miracle!
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 12-10-2014 at 10:32 PM..
Jackie07 is offline   Reply With Quote
Old 12-10-2014, 10:58 PM   #6
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,804
Re: Recurrence rate after 5 years for ER+/PR-/HER-2+?

Statistics is just statistics. It paints an overall picture, but can't guarantee each individual case will be the same.

My recurrence was found in the fourth year after my initial diagnosis in 2003. Herceptin wasn't available back then so I did six rounds of FEC plus standard radiation. I'd read the high recurrence rate and high proliferation rate of Her2 upon the diagnosis in 2003, and asked for a mastectomy. The lady surgeon persuaded me otherwise and I underwent a lumpectomy plus radiation plus chemo (Herceptin wasn't approved for early stage yet)

The following three years I continued to have very painful mammograms. But because the report had been 'clear', I thought I belonged to the group of women who'd always have painful mammograms. Until I'd become so weak/tired/ill and had to take off from work. Went to a weekend clinic just in case my employer needed a doctor's note, and that's when I (and the weekend clinic physician) realized my physical problems might have been related to the breast cancer. Because at 2.5 cm (about an inch in diameter) it had become palpable.

The previous mammograms did not missed the tumor. It was the doctors who read pictures had missed it. They had misinterpreted it as 'scar tissue'! I doubt in this day and age anyone would make the same kind of mistakes as Her2 is now a well-known subset. But you never know.

Guess what I was trying to say is, don't worry about the statistics. Don't let down your guard because of the statistics. Be your own best advocate. Know our body well. And when in doubt, go to the doctor. When in doubt of the doctor, go get a second, even third opinion. Hopefully the technology now is so good (digital and all) that no 'hard to interpret' will ever be used again as an excuse for any mis/delayed dianosis.

Your lab work usually will say a lot of about your physical condition. I can not depend on mine because I've always had the brain tumor present (now 5 in the center space that's been stretched out by the original one). But as long as I am maintaining a good weight without skin problems (not counting the type caused by accidents like being scratched by the feral cats - taking antibiotics right now or pain and having good appetite, I know I'm alright.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 12-10-2014 at 11:02 PM..
Jackie07 is offline   Reply With Quote
Old 12-13-2014, 06:16 PM   #7
Jean
Senior Member
 
Join Date: Oct 2005
Location: New Jersey
Posts: 3,151
Re: Recurrence rate after 5 years for ER+/PR-/HER-2+?

I was 90% estrogen positive...pr- will be celebrating 10 years this Spring (right behind Becky). Arminidex has changed the landscape of this disease for us. My onc.
was very encouraging and at 5yrs. wanted me to stay on another 5 yrs.

Best Wishes to All.
Jean
__________________
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
Jean is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 04:25 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2020, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter