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Old 11-19-2017, 03:40 PM   #1
Nurse4u2day
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Join Date: Feb 2014
Location: California
Posts: 439
Friend recently diagnosed with recurrence

Hello everyone . It's been awhile but I still check up on everyone . The reason I'm here today is not for myself as I'm doing well, still NED . I'm inquiring regarding a friend. She was just diagnosed with breast cancer for the second time. It's in two nodes same side as last. Don't know much other then that yet. My question is last time at her diagnosis she was Er/pr + her2- ,1 node positive. Her only treatment was mastectomy with node removal. So this time around will she need chemo if this is a recurrence vs a new breast cancer? I imagine no matter what she will need radiation. Her pet scan is pending. I'm just so angry as I thought for sure she should have had radiation the last time but nope. I get she didn't need chemo as her oncotype said it would not benefit her but no radiation?... Also she was on tamoxifen.
Thank you
__________________
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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Old 11-21-2017, 09:38 PM   #2
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: Friend recently diagnosed with recurrence

I am so sorry about your friend. I was told I didn't need radiation because I had the mastectomies AND my nodes were clear. If any had been positive, I would've had the radiation. So yes ... I agree with you, I am surprised she didn't have radiation the first time around.

Once the tumor in my "healthy" breast was found and it was HER2+++ ... so much for no chemo, either! The onc told me he had been anticipating a low oncotype score on the first tumor, and given clear nodes etc he was just going to put me on Arimidex.

That all changed when the surprise HER2+++ tumor showed up.

Maybe because it was only 1 positive node in her case? In any case, it sucks that its back. I would think she'd definitely have radiation this time and chemo too. UGH Praying her pet scan comes back normal!!!

I am glad to hear you're doing well!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 11-22-2017, 06:44 AM   #3
tricia keegan
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Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: Friend recently diagnosed with recurrence

I'm sorry about your friend, when I was dx twelve years ago it was felt chemo was a must with even one positive node. That could have changed over the years of course but I'd still want chemo if the cancer had traveled to a node. It's possible if your friend had had more treatment the first time she wouldn't be facing this now. Wishing her well and advise her to always get a second opinion.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 11-22-2017, 09:03 AM   #4
Nurse4u2day
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Join Date: Feb 2014
Location: California
Posts: 439
Re: Friend recently diagnosed with recurrence

Thank you Carol and Tricia. My friend is having her scan today so then we will know what she is up against soon. I so wish she would get a new oncologist. I personally have no faith in the oncologist. I spoke with my oncologist on Monday about this situation ( she saw my friend and told her she should have chemo and radiation back 2 years ago ) and she said it's not the norm to even do an oncotype in someone who has a positive node especially with it being a macro node at that time. That and when it comes to oncotypes she feels they can be a bit misleading especially when done with a node positive patient . Anyway my friends choice to seek out an oncologist that told her what she wanted to hear is done and had she gone the route I did we will never know if she would be facing this battle again. So now we wait. I have not spoken to my friend since Saturday as she has not returned any calls or text . She is known to shut down at times ( 27 year friendship ) and she knew I had my check up on Monday but maybe doesn't want to hear about it as she is going through her stuff. So I just sit patiently and wait for her to come around. Because I must remember this is now about her and not me. I do however keep in touch with her hubby and he tells me when a new test is coming up. Mainly because he knows I've been there. His wife is also aware that we talk.
Again thank you ladies . Fyi Nov 19th has been 4 years since my diagnosis and all looks well. Next pet/Ct scan March 2018
__________________
]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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