Her2 positive....is a long life ahead?

Jumpship

Hi!  Newly diagnosed here.  In July.  Still awaiting a surgery date, which the doc says no conversation with the hematologist until at least 4 weeks after that.  SO.....panicked a bit.  The tumor has grown 28% since July.  Now a 2cm x 2cm x 2cm, more or less.  What is freaking me out is the HER2 3 status, measured with ISH and another way, I can't remember, so it is confirmed.  

Is there a prognosis of better than 5 years survival rate?  I was reading a report about Herceptin and only being effective in 25% of the cases.  True?  Looking to get the ovaries out as my CA125  numbers were abnormal and rising 5 years ago-just a test, no signs of cancer.

Getting nervous that I may not see my baby graduate.

geewhiz

Hang in there minivan. The early days are the darkest.

I was Her2 Stage 3...5 years ago : )

Moderators

minivan, Welcome to the BCO community. We are so sorry about your diagnosis and we are very glad that you reached out to the wonderful women and men who are members here. This is a compassionate and wise community of others who can lend support, personal experiences and information as needed along this breast cancer journey. We hope to continue to hear from you as you wait for other like geewhiz to respond. We are sending you warm thoughts. The Mods

Sassa

Minivan,

Absolutely, there is a prognosis of more then five years.  You don't say what your stage and grade are (I am going to guess grade 3 based on the HER2+ status).

I was diagnosed with IDC, stage 1, grade 3,  ER/PR-, HER2+, in November of 2005.  My tumor was extremely aggresive and had a KI-67 of 70 (70% of the cells were dividing at any point in time).  At the time of diagnosis, my oncologist told me I was lucky to be HER2+ because of herceptin.  

I thought she was crazy.

But here is the thing, because our cancer is fast growing, chemotherapy is extremely effective for us.  This is because chemo only works on cells that are in the act of dividing, and that is what ours are doing.

On top of that, herceptin is a game changer for those of us that are HER2+ and it is very effective.  Yes, there are a small percentage of HER2+ women that the drug does not seem to work for, but the odds are you will not be one of them.

I had a mastectomy, 4 AC, and one year of herceptin. Yes, the chemo (AC) was rough but the one year of herceptin was relatively easy.

I am healthy at this point and feel great.  This will probably be your future also.

I assume you mean oncologist and not a hematologist as you said in your first paragraph.  Here is the thing, unless you have a gatekeeper/referral system with your insurance, there is no reason you can not speak to an oncologist earlier then 4 weeks after your surgery.

I was diagnosed after a biopsy on a Friday, went crazy over the weekend, and called my surgeon on Monday and said I needed to talk to someone.  His office set up an appointment with a oncologist for that  Monday afternoon.  She talked with me (that is when I heard I was "lucky"), and set an appointment to see me two weeks after my surgery to check on my incisions.

At the two week post surgery visit, she said I was healing faster than expected and set my first chemo date for two weeks after that.

Jumpship

Thank you.  I did actually mean Hematologist.....I have a lovely blood thing that needs a consult with the Hematologist portion of Oncology....because there is a strong chance that my blood thing will not permit me to be on Herceptin.  Thus the panic.  I've pushed so hard to get a surgery date....54 days and still counting without a surgery date, that I feel like I have been a pain so I was trying to lay low on the Hematology thing but maybe today is the day to call and push it.  I'm not feeling a piece of mind at all.  Yes, grade 3 but they won't stage until after surgery.  

Glad to hear that you are here and doing well.  Encouraging.

Godsaveus

unfortunately no.my mother is diagnosed 2 years ago after all treatments now it is in her brain and lungs.and she is counting her last days..i am crying while saying so. HERCEPTIN IS A DAMN WASTE.

bluedasher

I thought that most oncologists were Hematologist and Oncologist, like most in Gyn are Ob/Gyn. My onc had dual training and is certified in both. 

2 cm puts you on the border of stage 1 and stage 2. You won't really know stage until surgery. My imaging showed a lump that was 3.5 cm, but part of the lump was a non-cancerous cyst, part DCIS and part was IDC so my diagnosis after surgery was 0.9 cm - stage 1 and on the boundary of whether chemo should be done or not.  In surgery, they will also check whether it is in your lymph nodes which will affect the stage. So your stage right now is tentative.

My treatment went as yours was headed; see the surgeon first, get surgery, see the oncologist and discuss surgery. If I was doing it again today, I would ask to see the oncologist before surgery. Pre-adjuvant (before surgery) chemo is becoming more common and seems like a good way to go. 

One downside of pre-adjuvant is that you don't have a firm number for what your initial stage was and you are making the chemo decision based on the info from the scan(s) (e.g. mammogram, ultrasound, MRI) and biopsy. But since HER2 cancer is aggressive, that doesn't seem like much of a downside - you can be pretty confident that what you have needs chemo. Pre-adjuvant has the advantage that when you get surgery they will be able to tell how your cancer responded to the chemo so you get a good indication of whether it was effective and whether any further treatment is needed.

2 months is long to have to wait for surgery. My onc first suggested surgery for the week after he saw me, but I had a business trip to Asia scheduled for that week so he scheduled surgery for the day after I returned. Not that it needs to be that quick, but the waiting gets to you.

I'm 6 years out from diagnosis come Labor Day.

SpecialK

If doing neoadjuvent chemo you always have the option of doing a sentinel lymph node biopsy prior to starting chemo so as to accurately assess nodal status.  This allows more accurate staging other than potential size variations of the mass if this is unclear with different imaging modalities.  Neoadjuvent chemo for Her2+ breast cancer allows the addition of Perjeta, which is currently only FDA approved for use prior to surgery for early stage patients, but some oncologists have managed to get it approved for adjuvant use as well.  There are many of us on the Triple Positive and TCH threads that are doing well after treatment for Her2+ disease, but of course there are never guarantees.

godsaveus - I am sorry about your mom, it is very hard to lose a parent to cancer, and I imagine frustrating to feel that her treatment did not work.

mtndawn

Minivan,

I was stage 3, her2+, negative for er and pr.  I had a pathologic complete response to chemo.  At the time of surgery, they couldn't find any cancer. At diagnosis, I had several lymph nodes involved and two large tumors, for a total size of 5 cm.  Fast growing suckers, too.  From non-palpable in December to those huge lumps in April. Did chemo first because it was a mess. I am four years out of diagnosis, and my onc says at five years my risk of recurrence will be as if I never had cancer.  (because of the hormone negative status, I believe).  I don't know anything about herceptin stats, but I do know that many people respond very well to it.  Best of luck to you and your family.  My youngest was three when I was diagnosed, and I had no intention of leaving my children without a mother, so I understand where you are coming from.  Fight the good fight.  There is hope.

Dawn 

ssimmons66

minivan...I was diagnosis 5 years ago. Did chemo and herceptin which, is NOT a waste. I'm alive and doing well thanks to God for giving us herceptin to battle this disease. 

Hang in there, in a few years, I promise you will see this experience in a whole new light. I was just like you thinking I was going to leave my family and friends behind but came to realize that we are ALL leaving this earth some how and some day. Love everyone and everything like it is your last day. What really matters, where you going to afterwards. My concerns got focused on ever lasting life with our Lord and Savior. 

Praying for you my friend! 

knmtwins

Minivan - unless the blood condition you have has ruled out Herceptin and Perjetta, I'm not sure why you aren't in a chemo chair right now.  At 2cm, you qualify for Perjeta, and they say Perjeta + Herceptin before surgery is the way to go.  I had a new MRI done after chemo cycle 3 and my tumor is shrinking.  Once I'm done with 6 cycles, I will continue with Herceptin for a year.  I will have the tumor removed also after these 6 cycles.  They also are coming up with new 'vaccine' treatments, for post treatments.  Special K is on one.  Tons of research is going into Her2 and I think the survival rates we are currently seeing will change dramatically when we, the 2014 ladies, are the 5 year survival numbers.  

Also, get a second opinion.  If you have some blood issue that might make Herceptin a challenge, try to go to a research institution for it.  Some will do it on the phone.  I've heard a wonderful report about Cancer Care Centers, and how they figure out how to fly you and a support person (husband, mom friend, etc) out without it coming out of your pocket.  

LindaKR

stage 3 at diagnosis, 4 1/2 years ago, 5/18 lymph nfes involved, still need evidence of disease!

Basia

the truth is there are no guarantees in life. 4 years ago I had BMX, chemo and herceptin for a year. My cancer came back this spring in the scar tissue. Do what you can to prevent recurrence, but in the end it is all a crap shoot. There are so many drugs out there for HER2 so hang in there and live each day to the fullest.

Mommato3

There is no guarantee with any type of BC but Herceptin has really changed the stats on Her2+.  It used to have a poor prognosis.  Now the stats are looking pretty good.  Just look at all the research that has been done recently.  We now have multiple drugs to fight this.  

Jan72014

Hi Minivan, I think the stat you found about only 25% of people responding to herceptin means that of all people diagnosed with Breast Cancer, only about 25% are truly HER2 positive. Some people/tumors are negative for HER2, and they get a reading of 0 or 1+ by the cheap standard test for HER2 status. Some are borderline, and they get a reading of 2+. And some are positive, and they get a reading of 3+. Only  tumor cells that have receptors for Human Epidermal Growth Factor  (HER2 positive) respond to drugs like herceptin, because the drugs work by attaching to the receptors for this Human Epidermal Growth Factor on the tumor cells, blocking out the growth factor from getting onto the receptors and flagging these cells for your immune system to eat. 

So if you/your tumors are HER2 3+,  like me you are one of the 25% that will respond to herceptin and its sister-drugs like Perjeta etc. 

And the results they get in from trials are showing better and better survival rates. The 5 year survival rates do not mean you are not expected to live past 5 years. It is just that  much of the research is quite new and also because they often allow the participants to switch to the best treatment regime if they want to. And also HER2 tumors tend to grow sooner rather than later, so if you make it to the 5 yr point with no recurrence your chances of survival get higher and higher. 

Another point is that I have now met several HER2 positive women who over a period of years have had a local recurrence and then metastatic cancer, but now with chemo and herceptin treatment, their metastatic cancers have vanished completely. Some end up on Herceptin every three weeks for a while or even for good, but they get at least another 20 years  of happy, healthy quality life after their initial primary cancer, and are still going strong and basically well now. One friend had a mastectomy 20yrs ago, then a recurrence that was operated on 6yrs ago, then tamaxofen for 6yrs, then 6months later had a dozen golf-ball sized metastases in her liver and lungs. She had never had herceptin until after these metastases appeared. After about 7months of weekly herceptin and paclitaxel, she was recently put onto just herceptin every three weeks. Her last scan showed all the tumors in her liver had gone, and there was one last bit about half a centimeter long left in her lungs, which was expected to go also. She thought she was on the way out, and suddenly realised she had just experienced a miracle. And these miracles seem to happen amazingly frequently.

And a final thing to remember is that they are streaking ahead with new medications and deeper understanding of this disease, so if you and I do get our cancers returning or spreading at some later date, there is a good chance the prognosis will be really good and the problem dealt with easily and well. 

My initial diagnosis was 6cm DCIS plus 2.2cm IDC, Grade 3, node negative, no metastatic cancer found, left mastectomy, 6x THC, now on herceptin only till Feb, and doing really well.

It is a very scary journey, but you have got a particular kind of breast cancer that they have excellent treatment available for, and your chances are much better than you think Part of our journey is learning how to recognise that we are not dying, but just have to learn to contain our fears and live well despite them. Most of what we fear never happens. Best wishes.

pangtidor

I have read all the posts for this topic. Thank you so much guys!!!!! You are all my inspiration!!! Just 3 more chemo rounds of Taxotere Carboplatin and Herceptin before my BMX and will continue another year of Herceptin. We get to do whatever we get to do....:-)

SpecialK

jan - you should be cautious about using words like "one of the 25% who will respond" with regard to the effectiveness of drugs like Herceptin and Perjeta.  Perhaps a better choice is "may respond" as a percentage of Her2+ patients, approximately 20%, do not derive the same benefit from Herceptin, and a percentage of metastatic patients, approximately 70%, for whom Herceptin becomes ineffective after a period of time.  Unfortunately, prior to beginning treatment none of us knows who will, or will not, respond well to these therapies.  I am not discounting the vastly improved prognosis for Her2+ patients because of the advent of Herceptin and Perjeta, and I am grateful that my Her2+ cancer was diagnosed when Herceptin was available for me - but neither of these drugs is a panacea for 100% of the Her2+ population.

JeninMichigan

hello.  Stage IV from the start with mets to liver, bones and chest nodes.  Did 6 cycles of Taxotere, Carboplatin and Herceptin.  NED since June 2008 and have remained NED.  To me, Herceptin had been my miracle.  Long term survival is possible!  

Jen

ruthbru

One of my great friend was diagnosed with HER2 positive breast cancer 6 months before me.....she is 8 years out now with no recurrence. Herception was her miracle drug too.

Pharmmom

hi  I was her2 positive back in 2002  my girls were 11 and 6  my twins have graduated college  one did her masters and the other finishing up  its been 12 years and I am doing well  my answer to you is yes there can be a long life ahead  xo

TaniaE

Met a friend for coffee today who was HER2 positive and stage 3 with extensive lymph node involvement (23 nodes) who also had Herceptin. She is 7 years out now and doing very well. Keep your chin up.

fightergirl711

bumping - there are some great stories here

Kimm992

This is all amazing...thanks for sharing!

I am almost 1 year out and doing awesome...only 5 Herceptin's left!

Denise-G

I will be FIVE YEARS out within two weeks!  YIPPEE!!  Never thought I would make it.

I was only able to have 3 months instead of 12 of Herceptin.  I had permanent heart valve damage and had to quit.  I was terrified as I had a huge tumor and lots of nodes.  

I am still here and doing well!! 

lkc

11.5 yrs from a really stinkin BC dx Stage IIIc het2 pos, 12 nodes pos, no clear surg margins.... Blah blah blah.

Healthy , happy, grateful and enjoying a good belly laugh often

Jumpship

ikc-That's awesome! Can I ask if you had Herceptin plus Perjeta?

tessu

Had my one-year control a couple weeks ago, and still have two Herceptins ahead (and AIs "forever")but so far ALL CLEAR!

lkc

hi jump ship. Only herceptin was available to me back then. However I did clinical work on the Perjeta trials and the results were very very good.

Good luck dear

Jumpship

Thanks lkc. That gives me more hope. In the long list of malpractice-able actions I was not given Perjeta and occasionally get all worked up about "what if" so knowing that you are 11 years out without Perjeta, like me, makes me very happy. For you! But also a glimpse of hope for me too. Thank you.

EmilywithHope27

reading this today and smiling at your great response and report. i could have written much of what you wrote - her2 pos, er/pr neg, stage 3 ... with my youngest also being 3 at diagnosis date (last january!). hugs and warm wishes,

Tinkerbells

bumping because so inspiring