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Old 06-29-2013, 09:39 AM   #1
bmorr7
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My Wife Rachel Was Just Diagnosed Wtih HER-2+ Breast Cancer (Please Help ...)

Hi,

We're new to this group but I thought it might help to post my wife's situation on this forum and our oncologist told us that patients learn the most on supportive forums like this.

My wife, Rachel, is 42 years old and was sadly diagnosed with breast cancer earlier this month. About a month ago, she felt a lump in her right breast and went to see her PCP who referred her to a breast center for a mammogram/sonogram. The mammogram was normal but the sonogram picked up a small suspicious area which was biopsied. The biopsy came back as invasive ductual carcinoma, grade 1 with a modified Blood-Richardson score of 5 of 9 (tubular formation 2, nuclear grade 2, mitosis 1). There was also extensive DCIS, intermediate to high grade with focal necrosis, solid and cribriform type. Lymphovascular invasion was negative.
ER was positive 2-3+ (80% staining) with clone SP1 while PR was slightly positive (10% staining) at 1+ with clone 636. Her2neu was indeterminate with test score of 2 on the initial test (DAKO Hercep test) but FISH was done and was very HER-2/neu positive with a R/G of 11.3 (Red signals 373 and Green signals 33). The report said that the FISH test showed evidence of ERBB2 (HER-2/neu) amplification. The Her2 karyotype was nuc-ish (D17Z1x1-2, ERBB2x2-27)(20).

Rachel was referred to a breast surgeon who checked an MRI which was negative on the left but on the right showed a 7 cm area that was suspicious extending from the chest wall out to the nipple. The area that had been biopsied was a 1 cm part of this 7 cm area. The surgeon said that the other 6 cm might be DCIS. The surgeon recommended a mastectomy and she ended up recommending a bilateral mastectomy to be on the safe side because of the high risk of a new tumor on the left side.

The breast MRI showed an odd looking lesion in the sternum so a PET scan and bone scan were checked whiich were both fortunately negative for mets. The concensus was that the lesion in the sternum was probably a benign cartilage lesion that had probably been there for many years.

On June 19, Rachel had a bilateral mastectomy with right-sided sentinel node mapping. Five sentinel nodes were checked and they were all negative for cancer. On the surgical specimen, the modified Bloom-Richardson score was 6 out of 9 (tubule formation 3, nuclear grade 2, mitosis 1). The invasive tumor turned out to be 0.8 cm in size with 6.2 cm of DCIS which was extensive. DCIS was seen at two surgical margins (at the lateral shave margin and at the deep shave margin). DCIS was also seen in a large lactiferous duct.

A tiny speck of Paget's disease of breast was also noted near the nipple but the surgeon said that the Paget's was removed completely because the nipple was removed (from the right side) and there were clear margins around the Paget's specimen. The nipple was not removed from the left although a mastectomy was performed on the left side. The left breast was normal on the pathology specimens. Expanders were placed by a plastic surgeon after the mastectomies and implants are supposed to be placed in a few months.

Other items from the pathology at surgery was Ki-67 10% and PHH3 1%; 2/10 HPF. On the original biopsy, it was Ki-67 5% and PHH3 <2%.

Our surgeon reviewed the surgical reports with us and she recommended that she go back in next week and try to get clear margins at the lateral and deep sections. She said that she may need to remove a thin layer of muscle to do that. She said that radiation might be an option but she highly recommended a second operation as she said that the complications from radiation would be riskier.

We met with our oncologist who agreed that a second surgery to get clear margins is the best option. He said that after that he wants to start chemotherapy with Taxotere (Docetaxel), Carboplatin, and Herceptin (Trastuzumab). He called this chemo regimen TCH. He plans six cycles of chemotherapy with each cycle (of the three drugs above) happening every three weeks. He says that Herceptin will be given for one year. He said that he plans to give my wife something called Neulasta the day after each chemo cycle to help support her immune system.

He said that my wife has stage 1 disease but that chemo/Herceptin is needed because she has a strongly HER-2 positive cancer and that the DCIS was so extensive at 7 cm. He also checked a BRCA gene test which should be back next week.

Of course, Rachel and I are overwhelmed right now and are looking for help and advice.

1. Is TCH the best chemotherapy regimen for her? Do we really need chemo?

2. Should we have the second surgery to get clear margins? Would it be better to try radiation to get clear margins?

3. Should the left nipple also be removed during the next surgery because of the Paget's on the right. Does the skin around the nipple need to be removed from the right side?

4. The surgeon plans to put in a neck portacath during the next surgery to be used for chemo. Is this the best type of catheter to have?

I'm sure that I left out some details so please let me know if I can share anything else about my wife's story.
Thank you so much for any help/advice that you can give Rachel.

Thanks,

Benjamin
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Old 06-29-2013, 02:05 PM   #2
chekmark
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Re: My Wife Rachel Was Just Diagnosed Wtih HER-2+ Breast Cancer (Please Help ...)

Wow Benjamin u have done your research already and how awesome r u. TCH is the standard of care of Her2 and has turned our stats around thanks to herceptin so take some deep breathes. I really cannot give u any advise as far as her surgery, that is something I think u should discuss further with her doctors and among yourselves. I have been thru this and I didn't understand all of the pathology u listed but I want to say this is a great place to start for concerns, questions, answers venting whatever. Doctors like to get a clean margin to prevent recurrence. My doctor wanted a larger margin for me and when I went back in I was cancer free so think it all thru. I didn't have a port so no advice there either and the shot is standard after chemo also. Most likely her white blood count will drop after chemo and this will help. Does she need chemo, my personal answer is yes due to her2 but again that is a personal decision. I wish u both well, keep us posted and god bless you for being such a huge support system for her.
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 06-30-2013, 08:28 PM   #3
giapeterson
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Re: My Wife Rachel Was Just Diagnosed Wtih HER-2+ Breast Cancer (Please Help ...)

Hi [B]morr7 - your situation is very, very similar to mine - [I] was dx in April 2013 w/ stage 2b - [I] had a single mastectomy - [I] am er/pr/ and her2 + - had a 4.5cm tumor w/1 node involved [I] am 41 - 3 children ages 3, 5 and 7 - my husband and researched this for 2 months before we proceeded w/treatment - w/ a triple + dx, it seems tch is best - we got clear margins but my surgeon was a little concerned abt 1 section but said
She thinks rad will take care of it
- [I] got my port installed wed this past week - everyone as well as everything [I]'ve read says the port is the best way to go. my treatment plan is also 6 tch treatments 3 weeks apart, then 33 rad treatments - herceptin for a year and tamoxifen for 5-10 years - after exhaustive research on both my husbands and my part and after talking with several bc survivorsf with same or very similar dx - this appears to be the best possible treatment - [I] am combining w/holistic treatment as well and will be seeing a holistic MD - juicing/vegan diet/proper supplementation/exercise/sunshine/massages/an A LOT OF PRAYER - God [B]less
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Old 07-09-2013, 02:55 AM   #4
Jackie07
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Re: My Wife Rachel Was Just Diagnosed Wtih HER-2+ Breast Cancer (Please Help ...)

Hi Benjamin,

Get a clear margin if the surgeon feels there is a need!

Radiation does not stop Her2 breast cancer from coming back! I had the radiation after lumpectomy in 2003 and the surgeon thought she'd had a clear margin - but she didn't and the radiation did not stop the cancer from coming back. Worse - the doctors kept thinking the shadow on the films was scar tissues and delayed finding the recurrence!

I had to get the attention from the original surgeon to figure out the mistake she'd made!

It's really wonderful that you are doing research and providing good support to your wife. I have a wonderful husband as well - but he doesn't know anything about computer/Internet!

My recurrence in 2007 was about the same size. My heart was not good enough to complete the one year Herceptin (only got 4 weekly ones after the 18-week TCH) But so far I've been in the clear.

The treatment history in my signature is a little bit confusing because I've also had a brain tumor history. Not related to the breast cancer, but is definitely related to the genes I've inherited. Mother was diagnosed/treated for Non-Hodgkins Lymphoma in her mid 70's. (She'll be turning 91 in 3 months.) Then 2nd Brother was diagnosed with colon cancer after my recurrence in 2007. That led me to discover a cluster called HNPCC - Hereditary Non-polyposis Colon Cancer. Thanks to this Board, I had insisted on getting my BRCA genes tested. So 3 1/2 years ago I had a prophylactic surgery to remove my ovaries and uterus.

Be sure to look into your wife's family medical history and get the BRCA gene tests. My oncologist did not think there's any chance for me to be tested 'positive' for the BRCA genes. And the result showed just a speck of it - called a 'variance'. After 2nd Brother's colon cancer diagnosis and the information about HNPCC, I took action and have been feeling great!
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
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Last edited by Jackie07; 07-09-2013 at 02:58 AM..
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Old 07-19-2013, 07:49 AM   #5
linn65
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Re: My Wife Rachel Was Just Diagnosed Wtih HER-2+ Breast Cancer (Please Help ...)

With two very large tumors but very good path reports. I wonder if he thought of Chemo first to shrink the tumors and then she could save her breasts and possibly do a lumpectomy???

Don't panic, and I know that is hard to do because I have. However, you have time to make the best decision for both of you. Call and get a second opinion with another Breast Surgeon that would be advisable too.

Also, I do not have cancer in both breasts just the left. I have talked to 2 Breast Surgeons, 1 Plastic surgeon at different times because I have worried about the benign tumors on the right. They said there is only a 1% chance that I will get cancer on the other side, but if I wanted to remove my right breast for symetry then insurance would pay for it.

Your plates full.....Breath because it takes a while to digest all these things!!

Good luck, and I am sure everything will go just how it should with a well informed decision.
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myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 07-19-2013, 07:51 AM   #6
linn65
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Re: My Wife Rachel Was Just Diagnosed Wtih HER-2+ Breast Cancer (Please Help ...)

One more thing I never had to have a neulasta shot because they drew my blood 24 hours before my chemo, and my numbers were always good. I would ask that too before you get started with the chemo why do you have to get that shot every time???
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myleftlump.wordpress.com - started blogging my
IDC breast cancer
7/2012 diagnosed with multiple solid lesions
7/20/12 biopsy done. ER+ 30 PR -, HER+++,k167 80% Grade 2
9/2012 biopsy on lymph node - showed malignant

9/2012 Pre-adjunctive TCH chemo.

12/6/12 MRI after Pre-adj.
Results: Modest Decrease in size of left breast malignancy As well as the associated satellite lesions and auxiliary Adenopathy compared to prior study. Doctors hoped for better but good response it didn't grow.

12/18/2012 left masectomy with axillary nodes
Size 3.2 CM, Nottingham score 9/9
Grade 3, no evidence of in situ carcinoma
Areas of angiolymphatic are identified
Carcinoma is 0.5 cm from inked deep
Margin of excision
Attached axillary lymph nodes: metastatic
Carcinoma in 6 of 8 nodes.
Size of largest node 1.5 cm
Extracapsular
ER + 73%, PR+2%, HER2+

2/27/13 6 weeks of IMRT radiation finished

2/2013 Started on Tamoxifan 5 years.

8/2013 will take last Herceptin, 17 treatments total every 3 weeks.

BRCA1 & BRAC2 - Negative

August 28, 2013 DIEP flap on the left breast.
February 2014 Nip & Tuck
March 14, 2014 nipple reconstruction and removed port.
August 14, 2014 lump in lymph nodes under arm and above clavicle. Stage IV
August 28, 2014 herceptin And projeta starting and port put back in.

3/18/15 stopped arimidex.
3/18/15 progression....Tdm1
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Old 12-17-2013, 10:12 PM   #7
Adriana Mangus
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Re: My Wife Rachel Was Just Diagnosed Wtih HER-2+ Breast Cancer (Please Help ...)

Hi Benjamin,

Welcome to our organization!

You did not say where you live, but from what I read you are right on track with Rachel's doctors.

I agree with the other member of this group regarding the second surgery to remove all cancer cells and positively get clear margins.

It's my hope that everything works out well for Rachel. I admire you for taking such a good care of your wife's appointments and medical research. God Bless you both.

Happy Holidays!

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 05-22-2014, 11:56 AM   #8
Freaked Out
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Re: My Wife Rachel Was Just Diagnosed Wtih HER-2+ Breast Cancer (Please Help ...)

I found this site doing research for my wife a few weeks ago. I just came back to it today and started reading thru it. My wife has HER 2+ BC and was told to do exactly the same as yall. How is it going and advice would help. She get the port and starts treatment next week.
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Old 05-26-2014, 04:22 AM   #9
Aussie Girl
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Re: My Wife Rachel Was Just Diagnosed Wtih HER-2+ Breast Cancer (Please Help ...)

Hi,

Just want to reassure you that your wife's cancer is still at an early stage and that the treatment plan you've been given is very good and similar to what many of us have had with good results. Every time a study comes out, the prognosis for early HER2 breast cancer seems to get better. I'd think >>98% for stage 1 cancer for your wife. Unfortunately the chemo is necessary to get these good results for this type of breast cancer.

It would be great if the surgeon can get a clear margin with a second op and not have to have radiation. Some ladies have breast tissue that extends a bit further than average, particularly laterally. If the second op doesn't get definite clearance, then radiation may still be needed, but it is worth trying. Definitely no need to have the left nipple removed. Risk of further problems there are very low. Similarly, the skin around the nipple should be fine. Unless the tumor lay right under the skin and was infiltrating it at the time of diagnosis, then the risk of recurrence is extremely low. (I'm a pathologist and it is very very rare to see skin recurrence in an early stage breast cancer after adequate local control and chemo).

I love my portacath (Power port) that sits just under the outer end of my collar bone. I don't know about ones in the neck - check where it is going in. Make sure she get a low profile one if she is thin, so the skin doesn't have to stretch too tight over it. The site may be quite tender for a few weeks, but after that - it makes chemo so much easier.

Use the site search function to find info on the various side effects of chemo. Make sure you have a little stock of the medications and remedies suggested. And try to keep moving - walking a little each day makes a difference.

Neulasta is very important as it minimizes the risk of low white cell counts resulting in infection. The lowest counts occur between about day 7 and day 11, but Neulasta has to be given day 2 before you know you have a low count.

I ended up in hospital with fever and no white cells in my first round because I didn't have access to Neulasta ($2000 a dose) for my first round. It was government funded after "it had been proved I needed it". Stupid really, as the hospitalization cost the government and my health fund tens of thousands of dollars.

You'll get through all this together and it sounds like you have a good team.

Chemo is hard - but it isn't a continuously devastatingly awful process like you imagine it from movies. There's a rhythm to it so you take extra care on the low days and welcome each day of improvement until the next cycle. Each cycle is a milestone towards the goal of beating the disease. Then heavy chemo is over and each day brings improvement.

Best wishes to you both.

Aussie Girl
__________________
31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 01-26-2015, 09:59 PM   #10
Aewhiteh
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Re: My Wife Rachel Was Just Diagnosed Wtih HER-2+ Breast Cancer (Please Help ...)

It is so good that you are being so supportive! It will really be the best thing you can do for your wife. The support of my husband was priceless! Getting through chemo is no fun but is doable. Make sure you talk with your doctor about any symptoms so they can stay on top of it during treatment. They are right about the cycles during the chemo times. Once you know what is going to happen it is easier, not knowing is the hardest. It is also important to eat right and exercise. I couldn't exercise much at times but did what I could. It helped keep my spirits up.
__________________
4/29/14 biopsy says Her2+++ (Don't want to believe it! I'm only 50!) ER/PR Neg Her 2+++ Stage 1A
5/12/14 Lumpectomy with first good news - clear margins and no nodes
5/15/14 Start Balloon Catheter Radiation for 5 days
5/22/14 Last day of radiation and my baby graduates from high school- celebrations all around!!
Month and a bit break to do family reunion and vacation.
7/8/14 Port put in
7/9/14 Ecco done
7/10/14 Chemo supposed to start but changed to better onc instead
7/21/14 Start first of six rounds of TCH
10/29/14 Last chemo - from now on its just Herceptin!
12/10/14 Pet clear, brain Ct clear, mamo clear, ecco good - Happy dance!!
1/20/15 told onc about headaches (I think its caused by Herceptin) onc ordering a MRI - will wait to see how it goes.
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