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32 year old wife ER+/PR-/HER-2+++ (share experiences pls!)

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SunDiego
SunDiego Member Posts: 40
edited February 2017 in HER2+ (Positive) Breast Cancer

We recently discovered (mid June 2010) a lump in my 32 year old wife's right breast, and immediately followed up with ultrasound > core needle biopsy > MRI > mammogram. Long story short this all led to initial pathology of multifocal DCIS with suspicious areas of invasion, as well as multi-focal areas of calcification. Fast forward to July 13th, when my wife had her lumpectomy done (3 weeks after discovery) by the most highly regarded surgeon in the area at the most highly regarded multi-disciplinary center (no names here). The pathology just came back yesterday (7/19/10) and the results were NOT what we were hoping for. She goes in for med. onc and post-op with doctor tomorrow... and have lined up second opinions as well in a few weeks with another med onc and surgeon - just in case.

I'll list all the key words and phrases here in the hopes that others with similar experiences can please chime in with words of support or suggestions or experiences.

  • PATHOLOGY 
  • * Sentinel Node 0/13
  • * ER+ 10% in invasive carcinoma & ER+ 80% in DCIS

* PR- (report said "mostly negative, only 5% positive in invasive, 10% in DCIS)
HER/2+++ (3+ on ASCO/Dako in both invasive and DCIS)
* mBR Grade 3 (score: 8) "multifocal invasive ductal carcinoma arising from extensive high grade DCIS with comedo necrosis and calcifications"
* Invasive Tumor Size: 0.7cm
* Lymphatic Vascular Invasion: Suspicious
* DCIS polarization: Poorly Developed (Comedo Necrosis visible)
* Stage 1a is what we've heard thus far

Margins (3 areas were removed)
1. Lumpectomy: True margin focally positive for DCIS
2. Right Lateral Margin Around Cancer: High Grade DCIS, margins clear
3. right true posterior margin excision: margin focally positive for DCIS
Additionally this was in pathology report
Resection Margin for Invasive Tumor: Clear 0.15cm

Additionally we are not planning on having more children (current age of kids is 7mo & 3yr), also she has Endometriosis, is BRCA1/2 negative, and mitro-valve prolapse. Otherwise in good health 5'6", 110lbs, and has no problem doing a bilateral mastectomy with reconstruction, but is scared to death of chemo, herpectin and the related side effects.

We are concerned about the following and would love ANY input anyone has:

- the seemingly discouraging combination of ER+/PR-/HER2+++. Makes it seem like no matter what she needs to have herceptin and chemo of some type with bilateral mastectomy

- what seems to be significantly increased chance of recurrence with HER2+++

- the terrible side effects of Herceptin, Chemo, etc for a 32 year old.

- the high grade 3 invasive part, the HER2+++ and the focally positive margins all share the crud out of us

She's pretty much committed to doing a bi-lateral mastectomy with reconstruction, but in light of the above would she jump right to this, or another lumpectomy to get the clear margins first?????????

Help please!

 PS to top it all off a recent MRI found a 4cm x 3cm mass on the liver, NOT an FNH, but most likely a hepatic adenoma, yet the radiologist cannot say for sure that it isn't cancer since it is not demonstrating the normal characteristics of an HA on the nuclear imaging.

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Comments

  • barbaraa
    barbaraa Member Posts: 3,548
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    I wish I could help you but I know that soon some of the HER2+ ladies will be along with their advice and encouragement. From being on the BCO boards for a couple months, I know that herceptin is a great chemo tool to use in HER2+ BC. Many ladies report few if any side effects. Take heart that chemo is doable and not as bad as the chemo of even say 4-5 years ago. Checks out the TCH threads on the chemo area. The threads are all about taxotere, carboplatin and herceptin which has been proven to be very effective. My prayers are with you and your family.

  • o2bhealthy
    o2bhealthy Member Posts: 1,089
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    I have a similar dx, was 38 with 10yr and 14 yr old.   It is quite overwhelming at first trying to understand the pathology and make informed decisions, isn't it?

    With HER2+++ it is HIGHLY recommended that Herceptin be part of your treatment options. I have seen very few instances where Herceptin is given alone as it is typically an adjuvant therapy, given in combination with a Chemo regimen, especially in early Stages of BC.  As far as a BilMX, unless they are unable to get clear margins, it is not 'required' to have a MX.  That is a decision that is very personal and individual for each person. 

    I had Bil mx with TE, recon to implants, Chemo TCH (Taxotere, Cytoxan, Herceptin x4) started Tamoxifen in Dec 09 and will have my final Herceptin TOMORROW (Happy Dance)!  Each person is different in how the respond to the different chemo cocktails but I can tell you from my experience that it is doable.  Just remember to drink lots of water and electrolytes, let your onc know if you are having any SE's (there is no reason to suffer with all the medications out there to help combat SE's).  If people offer to help watch the little ones, take them up on it.   For me the fatigue was just over whelming at times. 

    Once you know what your cocktail options are, you can usually find a thread for other people who had the same/similar cocktail.  Also join a chemo thread with others starting chemo at the same time, I found my group to be such a wealth of support, encouragement and you do not feel so alone. 

    Herceptin has been a breeze for me, my echo and heart function has stayed pretty steady and as long as we don't try to drip to quickly, I have no SE's (I get headaches if we try to drip to fast).  My nails are a lot weaker and tear very easily but I have to say I am THRILLED to have the opportunity to use Herceptin in my arsenal.  

    I think the hardest part of my journey was being thrown into chemical menopause.  I knew it was a possibility but when it hit is was just not prepared for the emotional and physical roller coaster that came with it (again there are medications to help you through that too, don't be afraid to ask).  My onc put me on Effexor and it really helped level me out until I was out of active treatment and I was able to slowly wean off the medication after a while.

    I am so sorry you had to join this group, but I happy you found this place, it was my rock through out my treatments.  You and your family are in my prayers!    

  • ssimmons66
    ssimmons66 Member Posts: 11
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    Let me first start off by telling you how sorry I am that you and your wife havubg to go thru this!

    I was 43 when I was first DX June 1 2009 with HER+++ breast cancer. My last herceptain TX will be Thursday!!! I will tell you what my ONC told me....this will consumer your life for about a year. The WORST thing for me was loosing my hair...I know that sound superficial....but for a women it is heartbreaking!!! So please remember that be very sensative to her about it I was blessed with a wonderful husband who told me how beautiful everyday.

    Another thing I never took any anti depressants because I thought I could handle everything and still be wonderwomen with my husband and kids BUT that is the one thing I would recommend to anyone going thru this!!!! I look back now and realize exactly how depressed I was and i wish i would taken something instead of being so down all the time.

    Chemo is not as bad as I thought it was going to be (except the hair) but make sure since she will be on herceptain that she does TCH tx because of the heart damage of the other chemo.

    I pray that everything goes well for her and you! I think it is wonderful that you are being so involved finding out everything about it! The year goes by a lot faster than you think it will!!!!

    God Bless

    Sherri

  • Lilah
    Lilah Member Posts: 2,631
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    I also was HER2++ and what Michelle writes is what I understand to be true: Herceptin is a MUST when you are HER2+ (it greatly reduces chance of reoccurrence) and CHEMO is a must with Herceptin (though WHAT chemo cocktail you choose is somewhat variable... I had AC dose dense x 4 and Taxol dose dense x 4).  Herceptin is a godsend and has few side effects for most women; chemo was hard but the worst for me was hair loss (and hair grows back).  Chemopause does suck but when you are under the age of 40, I'm told, most women will resume menstruating at some point (I'm 50 and my chemopause is expected to become permanent menopause).

    A meeting with an oncologist will help you to understand your choices/options... like which chemo to choose... but the standard treatment for HER2+ is chemo (8 weeks if dose dense) and Herceptin every three weeks for one year (which is started half way through chemo).  Studies show it is more effective when given with chemo.  Studies also show that Grade 3 cancer responds BEST to chemo. 

    I had DCIS which, after first lumpectomy (I had two), turned out to be invasive.  I also had one node involved but was told before the SNB that I would definitely need chemo and Herceptin because of the HER2.  Your wife is very fortunate to have detected her cancer BEFORE it spread to her lymph nodes... that is very early.  I had a second lumpectomy to get clear margins and one of them was close still (three were clear), so there was talk of a third lumpectomy when my ONC said it was time to start chemo.  So I did chemo after second lumpectomy and took my time deciding whether to do another lumpectomy or have a unilateral MX... given the time to think it over I chose the MX.  As it happens, there was no more cancer left when they examined the tissue but I'm glad to be free of worry for that side of my body (and also glad to still have one natural breast).  This is the hardest choice because it IS a choice (chemo/Herceptin was not a choice).  Whether I had lumpectomy and radiation or MX and no radiation, my prognosis was the same.  Sometimes even with MX you need radiation, so you should ask a radiation oncologist his/her opinion on this in your wife's case.  So my treatment -- surgery plus chemo plus Herceptin -- has put me in a less than 10% chance of recurrence category... which is better than the average woman who has never had cancer (whose chances are 12.5% on average). 

    Also -- FYI -- if you have chemo before completing surgery you must wait one month after completing chemo to have surgery (and Herceptin is NOT chemo). 

    I know it's all SO scary -- I have been there and had the nightmares, the fear and anxiety, etc.  But having gone through all if it this past year I am hopeful and not afraid; I go forward with cautious optimism... which feels a lot better than where you are now.

    Find and consult with a good oncologist; meeting mine was like getting thrown a lifesaving ring (you know those rings from ships).  Surgeons, who tend to be the first people we meet/consult with when diagnosed, are not the best for navigation; oncologists ARE.

  • HES112
    HES112 Member Posts: 3
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    SunDiego...Sorry about all that you and your wife and family are going through...I had somewhat of a similar diagnosis...I was diagnosed May 2008.  I had a tumor that was .08 mm. It was also ER positive and HER2 positive.  I had a lumpectomy and nodes were clean.  I went on Taxol and Herceptin every week for 12 weeks and then continued with the Herceptin every three weeks for the year.  At the time that I went on this regimen it was a trial through Sloan Kettering and Dana Farber.  My understanding is that now it is a standard of treatment for women who have tumors under 1 centimeter. It is very doable, as I was able to work part time and take care of my family.  My biggest fear was nausea and I have to say I never had that.  Sending you all lots of hugs...Hope

  • SunDiego
    SunDiego Member Posts: 40
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    Thank you everyone. My wife had no idea that I posted this, and I just showed it to her along with these initial responses. I must say this board and you ladies are incredible. I could sense an immediate sense of comfort when she read all of your brave stories. Tomorrow's Onc appointment will be very important, as will the post-op with the surgeon. We look forward to reading more from anyone else who has a similar experience. Thank you again.

  • Twinmom77
    Twinmom77 Member Posts: 56
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     I am so, so sorry you guys have to be going through this.  I can really sense your fear and it brings back a lot of the same feelings I had a year ago.  This is the worst part right now - the uncertainty, not knowing what you'll have to go through to get through it, sometimes feeling like you won't get through it  - and you guys most certainly will get through it, but I know normalcy seems a long way off right now.

    I was diagnosed last June, just after turning 32.  My twin boys were 3 at the time.  My stats are nearly the same except I was PR+.  When I heard Grade 3, I just about flipped my lid.  I thought that was it, I was done for with a cancer that I thought was so aggressive (I know now that yes, it's agressive but it's treatable).  I was hoping for maybe just some radiation, but they told me with it being HER2+ and aggressive, and because of being so young, they would need to get aggressive with it.  I would need chemo.  I was terrified of chemo.  When I got home I ran to my mom and sobbed "I'm not gonna have any hair!"  Still makes me teary eyed to think about it, so I know just how your wife is feeling right now about chemo, about all of this.

    But I did it - the chemo, the radiation, the year of Herceptin and soon to follow with Tamoxifen.  Chemo is not something I would ever volunteer for, but it's not the horrible thing that it was in the past.  You're mostly very tired, achey sometimes, and if you take your anti-nausea meds you won't even throw up.  Yes, your hair comes out and it is probably the most traumatic part.  But you just somehow get through it and before you know it, it's growing back.  The Herceptin is not bad at all.  I can promise you both that.  I have my last treatment tomorrow and had ZERO side effects up until the end of May when I started getting more fatigued, and losing my appetite - nothing serious at all. Herceptin is nothing...well, maybe just a pain in the rear to go to every three weeks.

    Once you get a treatment plan in place, this is all a little easier to deal with.  Yes, thinking about this taking at least a year to get through is daunting, but it really is all downhill after chemo.  You'll start to worry less and less about it being agressive, about it coming back.  Things will return to normal and it's a different normal but it's still normal, which feels really good.  I made it through the year, my kids are fine and I'm fine.  I start graduate school in the fall and I'm happier than I've ever been in my entire life.  You guys will get to this point too!

    One thing I do want to mention is to make sure you take care of yourself too while you're taking care of her.  We aren't the only ones under a lot of stress, caregivers are too.   I tried to make sure my husband realized this when the journey started and he didn't listen, didn't do things to de-stress for himself.  He'd end up taking it out on me and the kids and eventually bailed on me during chemo.  So do whatever it takes - counseling, out with the guys, whatever is your "thing" - do it every once in awhile and don't feel guilty about it.  You can't be a good caretaker unless you take care of yourself too.  Ok, lecture over!  Seriously, if I can answer any other questions or just listen to your wife or you please let me know.  So many people helped me through this and I'd like to do the same for other women. Hope this helps you guys a little.  I'll be praying and thinking of you both!

  • unab
    unab Member Posts: 1
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    So happy to see you reaching out to such a wonderful and broad support group.  I wish this was available to me when I was going thru breast cancer 8 years ago.  It is so important to keep focused on you, your family and the healing process.  Try not to get caught up on the "What if" scenarios, which can happen.  Keep strong, have faith and believe everything in life happens for a reason.  

    You will be stronger, closer and more understanding about life.  It sucks right now, but it will get better. Keep talking, asking questions and most importantly, be strong, have faith and love everyday you can get up embrace each other and your family!  Prayers and hugs to you, your wife and family.

  • jsw19
    jsw19 Member Posts: 212
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    SunDiego, I am so sorry that you and your wife are going through this.  Your post struck me because I am also a 32 year old wife and I am only a month or two ahead of your wife in all this.  Obviously you have a lot of questions to ask at your appointments but I can share a bit about my experience.  I also had a lumpectomy, though my tumor was larger than your wife's (1.6cm) and I had lymph node involvement.  My surgeon did not get clear margins on the first surgery and 2 weeks later did a "re-excision".  The margins were still not completely clear but my surgeon consulted with the oncologist and they recommended just moving forward into chemo since that will likely kill off whatever remains.  My surgeon would like to do one more re-excision after the chemo is over to take a look and make sure no cancer cells remain.  At this point no one has told me that bilateral mastectomy is at all necessary, though I do know it is something I could choose if I wish.  Because I have chosen to stick with the lumpectomy I will need to have radiation therapy once the chemo has finished.

    As far as chance of recurrence with HER2+, the doctors I have seen all call herceptin a wonder drug.  One oncologist I saw actually said that he is happy to see a woman test as HER2+ because it means he has something additional to offer (herceptin) and that with the advent of herceptin women who are HER2+ have just as good or even better outcomes than women who are HER2-.

    As for the side effects of chemo and herceptin, yes they can be rough but they don't have to be devastating.  I started herceptin last week and had nothing more than mild flu-like symptoms that evening but I was fine when I woke up the next day.  I will be starting chemo in about 3 weeks.  It seems like the typical chemo regimen for HER2+ women is taxotere, carboplatin, and herceptin, though technically herceptin is not actually a chemo drug.  There is an awesome thread under the Chemotherapy form called "taxotere, carboplatin, and herceptin" that I have been reading through to get first-hand accounts of what women have experienced going through this regimen.

    It absolutely is scary and it is ok for you and your wife to be scared right now.  But you should also know that you can and will get through this.  Breast cancer treatment has advanced so much over the years and continues to advance.  And I agree with Twinmom77 that you need to take care of yourself as well.  My husband and I have a wonderful network of friends and family that he can call and talk to when he is feeling anxious.

    I hoe that all of our stories help and I hope that you and your wife get some helpful answers from the doctors. 

  • FCB
    FCB Member Posts: 1
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    I was 34 when diagnosed (Stage 3a, Grade 3, HER2+++).  It is so hard at first, to become an expert overnight on a disease like this.  I'm 35 now and finishing up treatment.  Had bilateral mastectomies and just had reconstruction (ADORABLE results).  I have a dozen Herceptins left (weekly infusions) and have had zero side effects. 

     Here is a girl's website that I have found comforting over the past year: http://lauramellis.livejournal.com/profile

    (if that link doesn't work, Google "Laura Ellis breast cancer"

     She was HER2+ too, and had reconstruction, AND has photos.  I liked knowing what to expect from surgery and reading her journal entries made me feel less scared.

     Sounds like your wife has an awesome supportive husband.  I do too--and this, beyond all the most wonderful medical care we can get, means THE MOST.  KEEP IT UP, YOU CAN DO THIS.

  • PatMom
    PatMom Member Posts: 322
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    The first thing to remember is that your wife is absolutely in charge of her treatment and that the doctors can't do anything without her full consent and cooperation. 

    Every treatment option has both advantages and disadvantages.  Her doctors should inform her about both the positives and the negatives of each proposed treatment.  If the only side effect of chemo being acknowleged is hair loss, find another oncologist.

    What I am seeing from the pathology report is high grade DCIS with a small invasive component that is node negative.  At stage 1A, chemo and herceptin are not normally given because at that point, the risks associated with the chemo far outweigh the potential benefits.   

    Some onclologists push younger women to do chemo just because they have so many years for the cancer to possibly come back.  By the same token, they have many additonal years to live with the long term damage that chemo can do. 

    With her pre-existing cardiac issues (minor though they may be) the cardiac damage that can be done by herceptin and by some chemo agents may significantly outweigh any other benefits she may get from it as adjuvant treatment at this point.  It is certainly worth exploring with both her oncologist and cardiologist so she gets the complete picture before possibly being pushed into a treatment with potentially life altering side effects as a "just in case" insurance.  That risk benefit ratio would look very different if she had more advanced disease, or if hormonal treatment wasn't an option for her. 

    I hope that she makes the choices that let her be here to participate fully in all of your children's growing up and long beyond with good health and peace of mind.

  • TriciaK
    TriciaK Member Posts: 124
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    Strange, but her2+ used to be a bad thing in a path report (herceptin)  has totally changed the pronosis for her+.  I'm five years out and doing great.:)

    This is the new cancer to have which is having a lot of money and research put into right now.

    There are many people surviving well on www.her2support.org  far longer than I :)

    My best wishes to you both!

    Tricia x

  • SunDiego
    SunDiego Member Posts: 40
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    Apparently we're still awaiting the results from the FISH test... seems like it is taking forever. Just learning how important the FISH test is to confirm the HER2 results actually being positive. Since it is 2010, with herceptin, we're hoping of course they confirm that HER2 is positive, otherwise it would be nearly triple-negative. Thank you everyone for the support.

    Assuming FISH confirms, my wife will start TCH in a week or so. The liver thing is a whole different story (one doc wanted to take 40% of it out right away, the other feels watching it through chemo is better). Both are world renowned transplant doctors - but we're going the conservative direction on this one. 

    She is still in the mode where she feels her body is completely filled with cancer and that only a matter of time before something comes back. The hair falling out is on top of her mind, and determining whether or not to communicate what is happening with our 3 year old is also of concern.

    Thankfully we found an incredible medical oncologist who wants to do extensive additional testing to get a full and proper staging. I feel this will set my wife further at ease, and allow her to move forward towards better health. 

  • lovetosail
    lovetosail Member Posts: 36
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    Hi - I had neoadjuvant TCH x6 + Tykerb (as part of a clinical trial), then surgery, now Herceptin through 2010 and tamoxifen for 5 years.  It's all been really doable - I' ve been lucky with very few side effects for any of my treatments.

    I notice they took 13 nodes - but it was a sentinel node biopsy?  Wow, that's a lot to take for SNB - while the risk of lymphadema is less with SNB, with so many nodes taken I would imagine her risk to be elevated compared to people who have had 2-3 nodes taken.  Read up on lymphedema risks/prevention - lots of good info on this site.

    Best of luck in your journey

  • laughlines
    laughlines Member Posts: 115
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    How wonderful of you to post for your wife. I hope you have some more answers by now. I was 33 when I was diagnosed with HER2+++ Grade 3 IDC last year just after my daughter's first birthday. My tumor was bigger (3 cm) but I also had negative nodes.

    Here's my two cents:

    I was told to do chemo by three different oncologists. I did it, and I agree with what others have said: it is doable. I did Adriamycin/Cytoxan for 4 weeks, and I needed help caring for my daughter during that time (mostly on the "hard days" a few days after the infusion.) When I was doing Taxol and Herceptin, I felt tired, but otherwise pretty darn good and was able to live pretty normally and enjoy some travel with my family too. I was able to take care of our very busy toddler while I was on the TH.  I have just finished a year of Herceptin, and I had no noticeable side effects from it. It was a breeze.

    I agree with what some other women have said above: the sudden menopause that chemo forces your body into was the most difficult part for me too. When my hormone levels returned to normal a few months after chemo I suddenly felt like my old self again. I do wish I had explored more support (like Effexor) for those symptoms at the time. 

    The mastectomy question is a hard one. When I was diagnosed last year, I was panicked like your wife. I felt like the cancer was or would be everywhere in my body. I opted for a bilateral mastectomy right from the start. I would make the decision again today, but I wish that I had taken more time to explore different reconstruction options before I had the mastectomies. If your wife does decide to have mastectomy now, I would recommend researching reconstruction options and meeting with more that one plastic surgeon before further surgery if possible. I'm sure this isn't at the top of her priority list right now, but I think she'll be glad later.

    I think your daughter will handle all of this better than you expect. I'm a school psychologist, and I can tell you that the children whose parents explain things openly to them seem to do quite well while their parents are going through treatment. Here's a good resource for talking to children about cancer: http://www.cancer.org/Treatment/ChildrenandCancer/HelpingChildrenWhenaFamilyMemberHasCancer/DealingWithDiagnosis/dealing-with-diagnosis-how-to-tell-children

    Another woman on these boards used the analogy of a "weed" when explaining the tumor to her young child. I like that analogy.

    Another resource that helped me immensely was my local chapter of the Young Survival Coalition: http://www.youngsurvival.org/ You might check and see if they have a group of young survivors meeting in your area.

    I also kept a blog during my treatment. Feel free to send me a personal message some time if your wife would like the address.

    For me, those first few weeks between diagnosis and the start of treatment were excruciating. I can honestly say that that was the hardest time. I am so glad you are supporting your wife through it.

  • geewhiz
    geewhiz Member Posts: 671
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    Your wife doesn't have to lose her hair!! I did TCHx6 and kept mine using Penguin Cold Caps. There's a thread on here about them. Good Luck!!

    I jsut finished chemo and rads and my exchange surgery. I never missed a day of work or the school bus for my 3 children. She can do this!! 

  • youngmomof3
    youngmomof3 Member Posts: 35
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    I think your wife is very fortunate to have you already showing your support and making an effort to try and help her as best you can. I was diagnosed in Dec '09 at the age of 36, did TCHx6, had BMX with reconstruction 2 weeks ago and am slowly recovering. My husband has been my rock helping to take care of me(physically & emotionally) our 3 kids(8,6, & 21 months old), the house and anything else that is needed to keep life as "normal" as possible. One thing I know is that cancer does not just impact the person who has it. I know this whole journey has been very hard on both myself and my husband but I also know that we have approached this as a team and even though there are things that he can't understand because I am the one physically going through treatment I also know that he is dealing with things that I don't fully understand. I will say that having good communication and alot of patience is the key. Also having a great support system, utilizing sites like this one, and also not having your entire world revolve around cancer have helped us alot. In the beginning everything revolves around cancer but once she is getting her chemo and you both know what to expect life will take on a new "normal".

    As for you kids, we did talk to my older boys and explained that I had "bad cells" in my body and that I needed really strong medicine to get the bad cells out. It has not always been easy to answer their questions and address some of their fears but talking with them openly I think has helped them to trust us and believe that we are doing everything we can to beat this.

    My husband and I also started a blog for our friends and family to stay updated and it was very helpful for two reasons: we didn't have to repeat information all of the time, and it helped us to share our feelings an experiences in an honest and often therapeutic way and it gave the people we love an opportunity to write us messages which have given us such strength and inspiration. It is also a great way to keep track of the physical, emotional and spiritual journey that you may go through. Some days I go back and read what I wrote several months ago and see how far I have come from the days that seemed the darkest to those that were full of good news.

    This is not an easy journey, certainly not one any of us would chose to do, but we get through it and you guys will too. I wish your wife, you & your family the best and if either of you ever want to talk please feel free to send me a private message.

  • CoolBreeze
    CoolBreeze Member Posts: 250
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    I'm ER+, PR-, HER2+++ as well. My main invasive tumor was 3.4 cm.  I had no cancer in my left breast so chose to do a unilateral mastectomy.  I'm glad to have kept some feeling across my chest.  Reconstruction options are more limited if you do that though, so she'll have to weigh keeping her feeling against asthetics.

    I want to reassure you and your wife that you can get through this. I know it's scary right now but during chemo I worked, I chaperoned field trips with my son.   It wasn't *easy* but I could do it.  I didn't miss anything.

    I'm still doing herceptin until December.  Herceptin is nothing, except for a runny nose.  I'm the tissue queen!  :)  

    You can read my story in my blog, linked below.

    I can tell you though, as the caregiver, you are going to have to step up your game, and the fact that you are posting this tells me you know that already.  I was pretty tired towards the end of chemo and so we ate a lot of take-out or my husband cooked.  My energy was limited so housework and cooking were the things I didn't do.  My son was 12 so he could care for himself - with younger kids, all her energy will be on them so it would be nice if you could arrange for somebody to take over the household chores.

    She CAN do them but she'll be tired, she probably won't want to.

    My husband went with me to chemo the first time, but then I went alone after that.  I was fine, and no need for him to take off work.   

    The worst part of this whole thing for me has been the drug tamoxifen, which is an estrogen inhibitor and given after chemo is done.  Since your wife is only weakly ER+ positive, she may not have to take it. Not everybody has bad SEs from it though.

    It all so sounds so much worse than it actually is and you are at that worst spot right now, but you and your wife will get through this fine, just like all the rest of us have.  :)  

  • digid
    digid Member Posts: 6
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    Hi SunDiego-

    First off, good for you for taking steps to help support your wife through this terrible time.  I was diagnosed last October with Er/PR-. HER2+ stage 2a IDC with node involvement.  I chose to have a bilateral mastectomy (one side was prophylactic) and have not regretted my choice for a moment.  If your wife feels in her gut that this is the right plan, then she should follow her instincts.  I had 6 rounds of chemo, 3 of FEC and 3 of Taxotere with Heceptin, and am still on a full year of Herceptin until next February. 

    I won't lie.  Chemo was really hard at times.  I lost my hair, my lashes and my brows and cried buckets every time.  Chemical menopause sucks big time. I have a four year-old daughter and I grieved the lost time and added stress on her young life.  I live in Canada, where reconstruction is rarely done at the time of mastectomy, so I will start tissue expander reconstruction this Fall. Living without breasts in the meantime has sometimes been difficult.   But I have survived! 

    I now have a stylish army brush cut on the grow, lashes and patchy brows. I spent last weekend dancing at a four-day music festival with my husband and my friends.  I work out every day again, and can (almost) keep up with my lively daughter.

    Back in October I thought my life would never be the same.  And it isn't.  Some things still suck, and some things are better than they ever were.  I love my family, friends and myself with an intensity that I never knew before BC came knocking.  I know just how strong my heart and body are.

    Both you and your wife WILL make it through surgery and chemotherapy.  You read alot about how bad it is to be young with breast cancer.  But being young also means that you can rebound more quickly and work to recover from the surgical and chemical damage caused by your battle.  Take care and be gentle with yourselves :)

  • SunDiego
    SunDiego Member Posts: 40
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    A few updates... my wife found a great medical oncologist she is very comfortable with that came highly recommended. Along with a second (or was that a third opinion?) from City of Hope (sister-in-law works for COH in fundraising department), we're confident that the recommendations are all lining up and my wife is on the right track. That track is...

    - full restaging: PET/CT, bone scan, 2D echo, blood panels, brain MRI, re-reading of lumpectomy slides
    - install Port Cath (into arm, not chest)
    - meet with "cranial prosthesis" makers before hair falls out
    - TCHx6 starting August 9 (will join the "Chemo August 2010" thread), followed by additional Herceptin every 3rd week to finish out the full year
    - Bi-monthly PET scan to monitor liver (liver blood panel came back yesterday 'normal', so hopefully that means it is more likely to be the "adenoma", but the regular monitoring in a few months after chemo starts will further confirm this (pray it shrinks or doesn't grow at least)
    - after the year look at next steps, to possibly include Tamoxifen (w or w/o Lupron) and who knows? (12 months scientists... work hard and fast!)

    thank you everyone for all the support, it has helped immensely. Wife enjoys reading the responses, so keep it coming! Thank you!

  • jsw19
    jsw19 Member Posts: 212
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    SunDiego, I'm so glad to hear that plans are in place for your wife's treatment, hopefully she is feeling better about things and ready to fight!  I know for me it was a relief to finally get the plan in place and feel like I was moving forward.  I am also starting TCH in August, actually I have started the Herceptin alone already and will be adding the TC in August.  I have also joined the Chemo August 2010 group and again I would also recommend the "taxotere, carboplatin, and herceptin" group (also in the Chemotherapy forum) to get a better idea of what to expect in terms of side effects.

    One piece of advice I wish I had gotten in advance - before going to PET or MUGA (heart) scans, be sure the onc's office does a pregnancy test.  I am also 32 and when I showed up for my PET scan they refused to do it because I had not had a pregnancy test done.  They inject you with a radioactive tracer for PET and MUGA scans and the radioactivity would be harmful to a fetus.  So I had to go back to my onc's office, get blood drawn, and reschedule the PET.  I then made my onc's office do one before my MUGA and I was glad I did because the MUGA folks asked about it when I arrived.  Of course I am not pregnant, given that I am about to start chemo it would be pretty much the worst time ever to get pregnant but the people doing the scans have to confirm you are not pregnant before they will do them.

  • SunDiego
    SunDiego Member Posts: 40
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    PET/CT scan lit up on the liver mass, also tumor markers CA 15-3 and CA 27-29 were highly elevated. No other suspected areas in body from PET/CT or bone scan. Med. Onc. and radiologists interpret this a breast cancer mets. Tumor board of liver experts previously felt it did NOT look anything like a breast cancer, and if anything a primary liver tumor. 

    Stage I to Stage IV overnight. We're devastated... still plan is to start THC on Monday, then do liver biopsy a week from Monday. Liver biopsy will dictate next step. If breast mets, then continue on THC and possibly change (anyone else have experience on different regimens?), or stop after 2-3 cycles and resect liver if it is a primary. 

    32 years old. No family history. No lymph node involvement. No other mets. Direct from breast to single liver mass. WTF?!?!?

    I guess we are hoping for a primary rather than mets.

  • youngmomof3
    youngmomof3 Member Posts: 35
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    SunDiego, I am so very sad for you & your wife and can imagine that you feel like you just got kicked in the gut. That is the crappy thing about this cancer, just when you think you have all of the info and a plan somthing unpredictable can sneak up and throw things all off. Emotionally we go from being sad to pissed off and everywhere in between. I just finished my 6 rounds of TCH in May and had Bi-lat MX in July and even with clear margins and negaitve node involvement onc still wants me to do more chemo b/c TCH didn't kill all of my cancer. WTF. Also found out at end of chemo that what looked like stage 1 at original biopsy was actually stage 3 before chemo began based on mri finding several smaller masses which added up to a large amount of cancer. and after chemo i went to a stage 2. it is all very frustrating!

    I am going to pray for you & your wife and I hope that the test results are good. please keep us posted. stay strong and positive which i know isn't always easy but keep trying.

  • mmm5
    mmm5 Member Posts: 797
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    Sun Diego

    I am very sorry you are going through all of this, while it seems hopeless to be dxed stage 4 from the get go, being HER2 gives you the most options out there. There are many Her2 ladies on these boards that have gone NED being on Herceptin indefinitely. If you go to the HER2 support website you will see that even the originator of this site was stage 4 HER2 and she had brain mets. She has been NED on HERCEPTIN I believe for around 10 years (don't quote me on exact years but it has been a long time) Also many on these boards as well. I think JenninMichigan is another on these boards who is really great and has achieved NED with Herceptin keep looking and you will find them to give you hope.

    Good Luck and Your family is in my prayers starting today.

  • chicagomom
    chicagomom Member Posts: 6
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    Devasting - my thoughts and prayers are with you and your family right now - sending positive hugs your way - hold on guys -

  • SunDiego
    SunDiego Member Posts: 40
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    Is anyone familiar with the CTC (circulating tumor cell) test? The results for that came back yesterday and were 0. Just seems odd to have negative nodes, a liver met and CTC be 0. Anyone with knowledge here?

     Liver biopsy will be done Monday, so by mid-next week we'll be pretty confident what we are dealing with. In meantime first TCH treatment was this past Monday...

  • mmm5
    mmm5 Member Posts: 797
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    Very odd SunDiego, am familiar with test. will be curious to find out about results of liver biopsy.

    As someone else has mentioned it is odd for there to be just one single liver met, they usually present as lesions.

    I pray that you will find some solid answers after reviewing the pathology of liver.

    I also pray that your wife will respond as well as many others have to the Herceptin. There are women on these boards who have achieved NED and remained thee with Herceptin long term. 

  • SunDiego
    SunDiego Member Posts: 40
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    Biopsy went "well" yesterday as doctors felt they got enough tissue samples. Awaiting results within next few days. Interestingly since prior to the initial breast dx my wife has been complaining of a little bit of pain by her ribs. That is what took us into the doctor initially in June. As it turns out the biopsy was done directly beneath this area she has felt some discomfort - so one wonders if the liver issue has been there the entire time causing this discomfort and all other doctors brushed it aside. Either way, don't downplay your pain - always make an issue with your doctor.

    Nervously awaiting pathology, but know that TCH has been started already so hopefully we're on the right track regardless. Thank you all for your comments and support - we check this daily so it is really helpful.

    Side note: what are the "qualifications" to get a treatment under 'compassionate use'? Just trying to see what we could do to get her onto TDM1 - even though she just started TCH a week ago.

  • lago
    lago Member Posts: 11,653
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    I don't have much to add since I haven't started treament but my diagnosis is similar to your wife's (slightly PR positive). I'm 49 and peri-menopausal. I'm also 5'6" but 130 lbs. At her age I was 124lbs. I must have a bigger butt Wink

    In 2 weeks I'm doing a BMX, level I nodes on the bad breast and sentinel node biopsy on the questionable one.

    I too had my concerns with Herpicen (I have a slight mitro valve prolapse but never really tested… there is just a slight click. My former gyno just noticed it ths April). It does appear that the heart issue doesn't happen that often. It's worth the risk. Also they do watch the patients carefully when they are on this. 

    There are drugs for most of the side effects. It also seems like most people really do manage all this. Sure some have a harder time. I don't want to down play their issues but everyone is different. We all have to be aware of the side effects and have them managed.

    Remember that in general people will post the issues they are having. Fewer folks will posts when there are no problems unless promted to do so. She can't assume she is going to have the worst time of it.  Chemo and Herceptin will save her life. It's worth the 6+ months for many years of life.

  • lorieg
    lorieg Member Posts: 79
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    I read through your story.  I am sorry you are dealing with this right now.  I was also diagnosed stage IV from the start at the age of 32 but with only a lymph node in the opposite axilla making me stage IV.  I had the CTC test done at MDA and my result was also zero, BUT that was mid way through chemo so I don't know what it was at the start.  I think it is a pretty controversial test.  I am hoping for you that the PET scan was wrong and the liver lesion is actually benign.  Good luck!  Prayers!

     Lori