My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)

[bmorr7]

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

[carlatte7]

Benjamin, first of all, you've come to the right place and I'm sorry for your wife's dx. You can read my stats below. Your plan sounds very similar, except i never had Neulasta. HER2 is a sneaky, nasty beast. I would want to throw everything at it I could. Good luck.

[Becky]

TCH is now the standard of care for Her2+ patients. It is the right thing to do for any Her2+ person (my opinion) as Her2 is aggressive and sneaky AND your wife is young and has a full life ahead of her.

I didn't have a port but I really wish I did so I cannot comment on that but someone here will.

As for surgery, I think you should try to get out all the cancer. Before chemo is done, I think you should consult with a radiation oncologist and see what their opinion is of chest wall radiation. I would get two opinions. Do this before chemo is over because radiation (if deemed necessary) starts 3-4 weeks after chemo is over. AND if deemed necessary, you have to be mapped out so they know where to radiate.

As far as removing the nipple on the other side, I am just not sure how to answer that question as it is a personal decision.

We are here for you for your wife's and your journey. As you can see from my signature, I am almost 9 years out and did not have the better standard of care that you are being offered (and I am still here). The beginning is a whirlwind of mind blowing information on a disease the two of you never thought you would need to know about. Ask alot of questions to your medical team and us. If you are not sure about something, ask or get a second opinion for peace of mind.

[Cat]

I can comment on the port for you. I have a port on my chest wall near my bra strap. It does stick but it is under the skin and covered with clothing. It has been a lifesaver for me since I only have one arm to infuse or have blood draws. It is easy for the onc nurses to access and doesn't hurt anymore than an arm stick. I have heard some people have a sensitivity in their port but they may just normally be averse to needles. I'm not sure. I've never heard of a neck port though. That seems odd to me so unless it's something new I'd check that part out.

What an awesome support system your wife has.
Cathy

[hestko76]

Rachel is so lucky to have you on her side, and seeking info and opinions. You can see by my stats that I was stage one as well. It was often hard to explain to others why I was given chemo at Stage 1. HER2 is such an aggressive beast, and we are so lucky that now Herceptin is approved for Stage 1...... that was not always the case. I would explain to others that Herceptin is my wonder drug, but it works best when combined with chemo, and thus TCH. I had a port located in the left side of my chest , and it was placed there 3 days before TCH began. I was worried that it would show, but it was not that noticeable. You'll get lots of support here. Read, ask questions, and gather info.

[hestko76]

Oh, I forgot to tell you that I had Neulasta after each chemo. It will rebuild the white blood cells quickly. It has quite a sting when administered, but it does rebuild cells in record time. It is quite expensive, but insurance paid for me.

[carolanno]

Benjamin,

Check out the Slamon, et.al. study that Lani posted today. Results were that TH worked as well as TCH w/less toxcicity.
Ask the surgeon if he'll put the port on the inside of her upper arm. It's a great placement, especially for the summer.
i believe getting clear margins is critical. you can test for that, don't really know the results of radiation.
I didn't read your whole post...but getting second and third opinions often helps.

Take care,
Carol

[carolanno]

Benjamin,

My report of study's results was not completely accurate. i trust you'll read it yourself and draw your own conclusions...

Carol

[bmorr7]

Hi Carol,

Do you mean the TH vs. TCH study?

Ben

[bmorr7]

Hi everyone,

Thanks for all the help! My question for tonight is whether Herceptin is enough for Rachel or whether she also needs chemotherapy (our oncologist is recommending the Taxotere (Docetaxel), Carboplatin, and Herceptin (Trastuzumab) regimen. Would Herceptin by itself be enough?

Thank you so much.

Ben

[JillaryJill]

Ben,
I had TCH and other than taking off work Thursday for the infusion...I worked full time through all 6 cycles. Also worked full time during radiation (had radiation at 7:00am in the morning). I had a Neulasta the day after chemo. My husband gave me the shot. I pinched some of the fatty part of my tummy and he gave me the shot to that area. Totally painless...it works with the bone marrow so it did cause joint and muscle soreness for a few days, but the meds they gave me to counter act this worked great. I never had to miss a chemo cycle...due to low white cell count...so I swear by Neulasta.
I had a port a cath installed, worked like a dream. I had it removed 2 years after I was diagnosed. That is the timing protocol that my onc suggested. I have to admit, I could not wait to get it out, I hated having that bump under my skin. I have a 1 inch scar near my clavicle bone..I am putting scar cream on it and the scar has faded.
In terms of surgery...yes surgical removal is the first defense, radiation is a secondary defense to prevent a regional recurance, chest wall, skin etc. Chemo protects the rest of the body for any small cells that can not be detected by imaging.
This is Her2...throw everything at it you can up front. It's an agressive breast cancer, but the treatments/ medicines available are terrific.
You and your wife are overwhelmed as you should be...the diagnosis is such a shock and the year after is a whirlwind of Dr's appointments and treatments. But it is all doable. We sold our townhouse, moved during the month of my 2nd chemo, had our small lake cottage torn down and built our dream home on our lake. So the year I was diagnosed and treated consisted of Dr. appointments, working full time ( although I am in sales, so I can work remotely sometimes, and I did not aggressively pursue new business, I just maintained what I had) working with an architect and builder, picking out all of the items for the new house and moving. This sounds weird but most of the time, I tried to pretend I did not have cancer....and kept really busy living my life. Our kids thought we were crazy for doing all of this...but I think it helped us get through the experience.
Good luck to you both.

[tricia keegan]

I can comment on the port and like others I had a Bard chest port which I didn't want but became my best friend and I honestly would recommend it. I think the chemo regime sounds good too but I had a lumpectomy so can't comment on the other questions.

[Andrea Barnett Budin]

Hi Benjamin,

Rachel is so lucky to have you be so well informed, and searching for answers. As for support groups, you have found the best!

So sorry you and Rachel have to deal with this, but you will go one step at a time, gather information and opinions (at least 2, I had 4 -- each brilliant but w/a slightly different perspective, which served to add to our ability to make decisions vs confuse us).

Not clear why onc didn't go wide around the margins with first surgery. I thought that was standard.

Not sure why onc chose double mastectomy. My 4th stage invasive lobular carcinoma (9 cm) -- in 1995 -- recurred 3 yrs later throughout my liver.

I would say you need more input from addl oncs before moving forward, in my opinion. You can read my stats in my signature.

In '95 they didn't check for HER2, in was still in clinical trials. I didn't have the advantage of getting on Herceptin from the getgo -- which is wonderful! In '98 (Aug) my husband and I had kept up on bc news and asked for the HER2 test. I was 80% positive. ER/PR borderline. Now ER/PR-... The FDA fast-tracked Herceptin out of clinical trials on September 29, 1998 -- which was most fortunate for me (then available on for metastatic bc).

In '98 I was Taxotere for 8 wks, had scans to make sure it was doing its' job, then added Herceptin. Did Taxotere for 9 mnths. 6 weeks on, 2 wks off -- in '98. Couldn't handle anymore. Took Herceptin for -- 10 yrs. Been off for 5 yrs. I agree that TH has less toxicity. Taxotere is a freight train of a drug, which I chose (having 3 opinions at the time recommending 3 different chemos -- I chose Taxotere because it was the most powerful weapon they had in their arsenal. 4th stage lobular and HER2+ is highly aggressive, and I felt rather than take easier roads, I needed to fight fire with fire. Never had the Carboplatnum (?sp).

I had a port ('95-'97), then had it removed. With recurrence, I immediately put in a port, knowing how tough my veins are and that I could only use my right arm. It was a blessing. Easy access. I kept that port for 12 yrs. Had it removed in 2010. It was in the bra line on my right side, because mastectomy was on left. I would consider putting in a power port -- you could check with StephN I think re that. Believe that's what she had. Was sorry it wasn't around when I got my portecatheter. Advantages with the power port I seem to recall. Check that out... Neck? I feel resistant to that...

I know someone who was in the initial clinical trials. In the '90s. She couldn't handle the chemo and only had Herceptin
-- and she is still here!!! For 4th stage I was told studies were indicating Taxotere and Herceptin. Your situation is different. But the lady who I was just speaking of was also Stage 4 and has done well.

Attitude is 90%. I began a spiritual journey. I went to an integrative oncologist in Manhattan who specializes in supplements. I have been on them since "98 - every single day, twice a day. A project. A commitment. I believe it is a large part of why I am still here. It helps keep me alive. Helped me get through rigorous chemo regimen (developed shingles from compromised immune system and couldn't get chemo till I was over it). That was terrifying, cause I clearly needed chemo to live! I got rid of it in 10 days. Vs. mnths and even yrs. Supplements helped that plus I caught it right off. Seeing so many oncs -- a burden traipsing all over the place, but so well worth it in so many ways.

I meditate every day. I use mantras. I believe in the mindbody connection and the power of our thoughts to help us heal.

I have a few threads around you might want to check out here.

Don't mean to hit you with too much, but do so want to help and inspire you.

If you have more questions, and you will, please ask. We are all here to help. We are a family.

My heart goes out to you and Rachel. It's a lot, but my attitude from right off was, I want to live, I want to be here, and I will do whatever it takes to get to wellness. I was in a process and there would be a light at the end of the tunnel. Stay strong, hug your wife, tell her she is beautiful just the way she is...

My husband went to every chemo tx, every test, every doc w/me. His support and love lifted me up and helped me be brave and determined.

I have a good feeling about you two. You seem to have what it takes.

I know it's head spinning, surreal, etc. Suddenly you have a whole new vocabulary and know more than you ever wanted to about bc. But you are still functioning well and doing your job as a loving husband. Good for you. Good for Rachel! You seem to be doing everything humanly possible to get Rachel through this with informed decisions based on instincts and the willingness to trek around looking for answers -- finding some questions along the way that make you think of things you haven't yet considered. Best of luck in your journey. It will bring you and Rachel closer than ever. That's how it worked for Paul and me.

Stay close and ask away, Benjamin.

[carolanno]

benjamin,

yes, to your question about TH vs. TCH study.

[Paty]

Dear Benjamin & Rachel,

You have come to a great site. We all here have been BC patients Her2+ and have experienced at different levels how this illness behaves and how we deal with it. We all understand how you feel and how terrible this time looks, but listen, we all have gone the same path and there are lots of successful stories here that will orient and support your questions and doubts when you experience the "...and now what?" moment. For what you tell us in your story, seems like doctors are taking the standard procedure to deal with the illness. I had Herceptin for a year after having 6 infusion of FAC, one every 3 weeks, i had a quadrantectomy and radiation as I kept my breast, Neupogen after each chemo to upbring my immune system. It has been 7 years since that, and I am here living a normal and happy life. Have faith, faith in your doctors, faith in your body, faith in yourself that things are going to turn out fine. keep a positive mind and please let us know ow things develop. We are here to listen and support you.

['lizbeth]

Hello Benjamin,

1.) What a circle, a TH vs TCH study is what I based my treatment on in 2008. I could not tolerate the full dose of Taxotere and it was reduced to the same level as in TCH.

Wait until you received the test results from the BRCA genetics before deciding on treatment. I've read that the platinum salts are more effective with BRCA cancers, and so TCH might be a better option.

2. Surgery would be my choice to get clear margins. I am not a huge fan of radiation.

3. The margins were clear around the Pagets on the right and there was no evidence of disease in the left, so the surgeon's decisions seem quite sound about the management of nipple / areola complex.

4. Like most I had a chest port, only smaller - a Bard port which is the child's size. I still have a sensitive area years later that is bothered by the seat belt, and had the Port out in 2010.

Are there any clinical trials that use more Targeted therapies, and less chemo that your wife could enroll in?

You can search on Her2 at clinicaltrials.gov

That is a boat load of information you listed, but many of your wife's pathologies are favorable. The DCIS can be pagetoid spread, stemming from Paget's of the 'nipple' that was established in another area before it migrated back to the nipple. That has a history of not appearing on mammograms, but showing up on MRIs.

Don't agonize too much over the details. Even with her diagnosis she is most likely to complete treatment and will not experience a recurrence. Research, ask questions and be confident the choices you make will be the right ones.

If you check with 10 different ladies on this board, you will find 10 different ways to get to NED, no evidence of disease.

We are sorry your wife has had the diagnosis, but she is very lucky to have you as an advocate. Because of your support she will have an even greater chance of regaining her health and staying cancer free.

Keep up the good work!

[sarah]

Hello,
Sorry to hear about your wife, this is an excellent site.
I would put the port in, easier in the end, saves the veins in your arms.
I agree about seeing a radiologist.
Not sure how your wife was diagnosed as stage one with such a wide tumor and then told to have a double mastectomy and that she has Paget's in one breast but...
question this also:
"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. "
While I've had some serious side effects from radiation, I am also alive 10 years after a serious recurrence and 14 from first time.
HER2 is an aggressiveand tricky disease, do more, not less.
I forget if you mentioned whether she was ER+ or not.
Researching is good.
Health and happiness
sarah

[Pray]

Welcome to the site. I can see you already know there is a lot of knowledge, support and advise here! Your wife is a lucky woman to have you! I had TCH, w/port. The neulasta shots were important for me because even with the those shots my white cells dropped and when that happens you have to wait until they come up to get your next treatment. Gods blessings to you and your wife. Your both in my prayers. Peace

[phil]

Welcome to this site. Lots of great experience, advice to share . You will still have to sift through some opinions . i favor aggressive tx for aggressive cancers , including those w/ high overexopression of her2 , like your wifes'. my wife was a 6 on FISH scale. She did not want to know her stage , said " I am Not A Statistic ". Thats' how she chose to fight. So I did the research, I knew the " odds ", and we made a good team. She still hesitates to surf the bc boards. she does , but she is a very emotional person, and lost her first husband, and beloved mom to cancers too young. She , and all of us are PTSD Survivors. Fight or Flight , or a little of both . thats ok.
My wife is one of the " super -responders "to T DM-1 ( kadcyla). She was very late stage iv when she got it in a trial in late 2010. she has been NED ( no evidence of disease ) since Nov., 2011. The QOL ( quality of life ) is the best so far , by far , for her. It is not a cure -all for late stage iv, but is impressive, and its stats will only go up now that anyone who progresses on a taxane , can get it.
I strongly recommend that pts with her2 get tx at a research hospital, w/ bc specialists. or at least a 2nd opinion. tx it aggressively , my wife Lorraines' cancer was kept contained to the liver area for 4 yrs , until t dm-1 could kill it. MGH in Boston flat out saved her life . to get her to t dm-1.
call Genentech in San Fran., , or google www.accesssolutions.com , i think. see about an adjuvant trial. it would be what i would do, if available. a trial will randomize some pts to tdm-1, some to another comparative tx., like TAC or TCH , perhaps. so those who dont get t dm-1 will get an aggressive tx ( ask your onc about comparison drug combo, some pharma co.'s avoid choosing the strongest competitor combo to make theirs look better ) ,. If they progress on TCH , or other taxane combo, they can switch to t dm-1. altho the initail excitement about tdm-1 has faded a bit, even now t dm-1 is the best tx for metatstatic her2 . seems like 30% of late stageiv her2 pts get the super -response Lorraine got, 30% more get a very strong response ( 6 months - 2 yrs ), about 40% do not get a response. as i said thiose stats will go up , and it will prove to be superuor to herceptin alone, and probably current approved combos , as they are not targeted chemos, but system - wide. w/ all the nasty s/e to boot. and better txs are coming soon.
Lorraine has had a power port since 2006, saving her arms and hands from needles, definitely in favor of that too. Good Luck, God Bless !

[bmorr7]

Hi everyone,

Thank you so much for all the helpful advice that you've given Rachel. We're heading back to the hospital on Friday so that our surgeon can try to get clearn margins at the deep and side margins. She's confident that she'll be able to do that.

We met again with our oncologist and he recommendeds the TCH regimen (Docetaxel, Carboplatin, Herceptin) for her HER-2 positive, ER positive, node negative treatment. I just spoke with another oncologist who strongly recommended Paclitaxel/Herceptin. She said that the PH regimen is much less toxic. She also mentioned that some patient go on the TH regimen and leave out the Carboplatin.

Do others have experience with TCH, PH, or the TH regimens. We obviously want a very effective regimen but also one with a lower rate of side effects (short-term and long-term).

Thanks,

Ben