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Old 05-01-2014, 04:12 PM   #1
cjjhero
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Options about surgery after chemotherapy

My sister has 3 rounds of chemotherapy of TCH left. She will have an MRI & bone scan before her surgery. The doctor's nurse talked to her today about her options for her breast surgery. My sister is HER2+/estrogen-progesterone negative. Stage 2B breast cancer. No lymph node involvement or spread of cancer.

She spoke to her breast surgeon over 2 months ago and the regimen she suggested (first MRI/CT scan came back clean) was a lumpectomy/radiation. My sister was adamant about having a double mastectomy and reconstruction. Because the tumor is in one breast only.
The nurse said that the survival rate was about the same as a mastectomy as with a lumpectomy/radiation.

My sister does not want radiation because of our mother dying from the affects of radiation. Our mother had cervical cancer and had radiation therapy. The radiation therapy killed her kidneys. She didn't die of cancer she died from kidney failure.

Should my sister stand her ground with the double and chemotherapy/herceptin therapy only? Thanks.
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Old 05-01-2014, 05:10 PM   #2
Coux92
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Re: Options about surgery after chemotherapy

Hi cjjhero, your sister is half way though the tough part! Congrats to her. The surgery decision can be difficult, mine was such a small spot (1 cm) and just under the skin,lumpectomy/radiation seemed logical. I was told the same regarding survival rates. Regarding radiation damage, I think the risks are low with today's precise targeting. I don't know when your mom had treatment. I did well with radiation. Good luck and smooth going whatever the choice.
Elizabeth
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3/11/13- normal mammo and US
4/30/13 Found pea sized lump while showering
5/10/13 core bx
5/15/13 dx IDC 1CM,
5/20/13 BRAC 1&2 neg
5/28/13 lumpectomy and SNB, ER/PR/Her-2+, Nodes neg,positive margins
6/13/13 revision of margins . Now clear
6/26/13 first TCH
Chemo Ninja~kutaki Zika Zukuchiri
10/18/13-Bx of calcification-neg whew
11/7/13 Started Radiation.
01/2014- Started Tamoxifen
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Old 05-01-2014, 06:05 PM   #3
crb
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Re: Options about surgery after chemotherapy

Did your sister have the genetic test done? That might help in her decision.

My surgeon was fine with my decision to have a double mastectomy (have 2 malignancies, but in only one breast) because I would not be covered with taking Tamoxifen and still have a chance getting the hormone type of breast cancer on the other side. I was concerned b/c of my age, grandmother had BC twice (20 yrs apart), and of the increased radiation/screening/probable biopsies of the other side if I left it (they have already biopsied a normal spot).

Ultimately, my surgeon and I discussed this multiple times, as I did with my hubby, mother, etc. Good luck to your sister!
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1/17/14 Day after 44th b-day, Got dx of 2 malignancies Rt breast; ER/PgR- HER2+
1/21/14 Biopsy of spot on left; normal
1/28/14 PET scan - CLEAR!
1/29/14 BRCA normal!
1/31/14 Sentinel node biopsy
2/5/14 Nodes are CLEAR! Stage I/IIa, N0, M0
2/13/14 Start Chemo, 6 rounds for 18 weeks prior to surgery
2/28/14 Port placed
3/6/14 Chemo Round 2
3/27/14 Chemo Round 3 (halfway done!)
4/11/14 u/s shows 2cm tumor about 2x5mm now!
4/17/14 Chemo Round 4
5/8/14 Chemo Round 5 and Daughter's Birthday :)
5/27/14 Last Chemo Party - Round 6
6/17 14 Herceptin only until next Feb.
6/20/14 BMX/Immediate reconstruction DONE
6/30/14 Path report back...NED!
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Old 05-01-2014, 06:25 PM   #4
BonnieR
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Re: Options about surgery after chemotherapy

I recommend a second, and even third, opinion. It helps offer clarity to talk things over with a new professional And then one can feel they made a decision based on feedback from various sources
Keep the faith
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
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Old 05-01-2014, 09:15 PM   #5
cjjhero
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Re: Options about surgery after chemotherapy

My family has no history of breast cancer. There are no female relatives ever diagnosed with cancer except my mother who had cervical cancer. Her cancer was caused by HPV. My father cheated on my mother and she ended up with STD.

There is no family history of cancer on either paternal or maternal. We are unsure what triggered her cancer. One suspect is she came in contact with a carcinogen at her former job. Thanks for the answers.
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Old 05-01-2014, 09:52 PM   #6
Catherine
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Re: Options about surgery after chemotherapy

I like the idea of a 2nd opinion. I had chemo, surgery and then radiation and then Herceptin. Because of the number of tumors and how close they were to the chest wall, the doctors made it clear to me that radiation was very necessary. Good luck with your decision.
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 05-01-2014, 10:24 PM   #7
Adriana Mangus
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Re: Options about surgery after chemotherapy

Hi cjjhero,

Just wanted to thank you for helping your sister during this difficult time.

All the responses you received from my sisters are pretty clear and straightforward, your sister will have the final decision as to which way to go
next.

Also, I'm the youngest in the family with no history of breast cancer from Mother, cancer of the prostate from my father's side, only, no women with any type of cancer have ever been diagnosed. SO just like in your sister's case no idea where it came from.

Please keep us posted. We care about you and your sister.

Take care,

Adriana
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 05-02-2014, 11:27 PM   #8
cjjhero
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Re: Options about surgery after chemotherapy

Thank you for your kind words. Will keep you in prayer for your condition. Blessings to you.
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Old 05-02-2014, 11:54 PM   #9
PinkGirl
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Re: Options about surgery after chemotherapy

why is your sister stage 2B if her nodes are clear?
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
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Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
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Old 05-03-2014, 01:33 AM   #10
suzan w
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Re: Options about surgery after chemotherapy

Hi there! You did not say what type of bc your sister was diagnosed with...I made the decision to have a bilateral mastectomy based in part on the fact that I had invasive lobular carcinoma in my left breast. It was a small tumor. Invasive lobular has a high risk of recurrence in the other breast. I had the oncotype test done which also put me at a high risk for recurrence. No family history of cancer. I have never had a moment of regret for my decision. In fact, as you can see by my signature, when I eventually had the BRCA 1+2 test done I did test positive for BRCA2. Good luck to your sister with her decision.
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age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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Old 05-03-2014, 03:54 AM   #11
mjm
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Re: Options about surgery after chemotherapy

My understanding is that medically the 2 options have similar enough outcomes that it really comes down to what the woman feels most comfortable with (unless a mastectomy is medically required). It may help her to discuss all her questions and concerns with her doctors (and maybe get additional opinions) so she can be really clear about the risks and benefits and details of each option.

But ultimately, the decision should be hers as its her body.

Best wishes to you and your sister.
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Old 05-03-2014, 04:17 AM   #12
JessicaV
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Re: Options about surgery after chemotherapy

Emotional safety is central to living well. If your sister would feel safest with a double mastectomy and if not doing so will leave her living with much more fear and limitations, given the family history, it may be the best choice for her to make. I have had to have one mastectomy in January for a large cancer, and am told that it is easier to get breasts to match if they are both reconstructed than if one is the original and one is reconstructed. I may well choose to have the other breast removed if I opt for reconstruction. Getting tested for genetic factors could also be worth doing to help decide whether to have one breast or both removed.
The Susan Komen page
http://ww5.komen.org/BreastCancer/De...umpectomy.html
has a section about deciding between Mastectomy and Lumpectomy. They say that one advantage of a Mastectomy is no radiotherapy is needed unless the lymph nodes are affected. The studies they look at (from 2005) show that there is a higher rate of local recurrence with a lumpectomy than with a mastectomy, but that because these patients are monitored, the 20% who had a local recurrence were then treated and the overall survival rates of both procedures were pretty much the same.
For myself, I feel safer having had a mastectomy and not having a higher risk of local recurrence that goes with a lumpectomy, and not having to have radiotherapy.
(These recurrence figures may well be changing though with herceptin and its family of drugs which help no doubt. I have not been able to find figures on local recurrence rates based on trials or research from the last couple of years. Does anyone know of any? )
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Old 05-03-2014, 06:35 AM   #13
Lisalou
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Re: Options about surgery after chemotherapy

Mastectomy=radiation +lumpectomy. Your sister needs to do what she is most comfortable for the long term. I was also radiation adverse and opted for bilateral mastectomy, in part for the symmetry and yes the rates of contra lateral breast ca are low but greater than general population. The risk for breast ca in the other breast goes up by about .5-1% per. Year so over 30 years that is an increase of up to 30%. I was fortunate enough to be early stage that with mastectomy I could avoid radiation. As you mention there are other long term side effects with it. Other opinions should be helpful and I would include one or two plastic surgeons in those additional opinions as well.
Good luck with your sister's decision.
Lisa
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Routine mammogram 12/20/2013
Call back with repeat films on12/31/2013 Ultrasound with core needle biopsy same day
Dx 1/2/2014 IDC ER/PR+
1/10/14 HER2 +
2/14/14 BRCA results negative
2/17/2014 skin & nipple sparing BMX with reconstruction Tissue expanders placed
IDC Stage 2A left breast. 9mm tumor no other CA 1/4 nodes positive
ER + PR + Her2 +(by FISH)
Right breast no cancer, sclerosing adenosis
3/13/14 Round 1 AC minimal side effects
3/27/14 Round 2 AC
4/10/14 Round 3 a little more nausea
4/24/14 round 4 hurray! Done with phase 1!
5/8/14 THP ( taxol weekly x12, Herceptin & perjeta every 3 weeks x 4)
7/24/14 done with chemo
Continue of Herceptin every 3 wks x 1 yr
5/14 start Tamoxifen x 5 years
8/18/14 removal of TEs silicone implants placed
9/14/14 Cellulitis Right Breast, suspect infected implant. Managed with Oral antibiotics, avoided surgery to remove implant. Whew!
12/17/14 nip & tuck revision of Left breast

We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face. The danger lies in refusing to face the fear, not in daring to come to grips with it. We must do that which we think we cannot do. -Eleanor Roosevelt
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Old 05-03-2014, 07:43 AM   #14
Carol Ann
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Re: Options about surgery after chemotherapy

Hi cjhero, I decided on a double mastectomy because of the fear factor, etc ... see my signature below, and then it sure was a good thing I did. The MRI that said my left breast was "healthy" was wrong. That's where my HER2+++ tumor was found.

I'm not saying your sister's tests are wrong. I AM saying she should go with her gut feeling of what is best for HER, no matter what the statistics say. That's what I did, and it ended up being the best decision for me.

That's all anybody can do ... and like other women here have said, second and third opinions are always a good thing. She has to be sure in her own mind that she's made a good decision.

Your sister is so lucky to have you!

Carol Ann
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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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