Post-BMX - Stage 1a IDC HER2+ - Facing Herceptin/Chemotherapy

OK, now I think I see - if I look at cancermat.net therapy calculator the risk of mortality (since it doesn't appear to do recurrence) for a small tumor even if it is HER2+ is very low so the benefit of chemo/herceptin would seem minimal. 

Hi Blair,

The reason most oncs don't do scans on early Stage 1 cancers, is because they virtually never pick anything up (<3% of the time do they show anything).  This is because even if the cancer has spread at the time of diagnosis, it typically hasn't grown enough to be detected by scans.

Now for the unpleasant reality part....Oncs who are saying we will monitor your wife closely if she doesn't have chemo, are placating you.  The unfortunate reality is that if it recurs, it is usually a distant recurrence (thus usually non-curable).  If my memory is correct, distant recurrence is the case for about 2/3 of Her2+ breast cancers that recurr.  Even if the recurrence is local, most of the time, again, if my memory is correct, about 3/4 the time, there will be a distant recurrence following a local recurrence.  That is why monitoring is not typically helpful - recurrences are detected too late for curative treatment.

Regarding the onc who added up tumor sizes to justify treatment - part of the reason for doing this may have been to justify treatment to the insurance company, which may otherwise refuse to pay for treatment.

I am not saying that your wife should or shouldn't have chemo + herceptin (unless she had LVI, then I definitely think she should have it).  But I want to make sure you fully understand that if it comes back (either locally or distant), it is highly unlikely to be cured.  Therefore monitoring is not a useful alternative to treatment.

Blair

Good luck at UPenn.  Unfortunately, cancer is a craps shoot.  None of us know when and if cancer will come back.  The best thing you can do is listen to the opinions of your doctors, and together with them, weigh the risks vs. benefits in any treatment.  Mets can happen to anyone, regardless of BMX, lumpectomy, chemo, herceptin, radiation, tamoxifen, arimdex, femara, etc...There is a woman on this board who had chemo and herceptin, and a recurrence after Herceptin.  You will always find worst case scenarios in any discussion of a deadly disease on the internet, but it is also true that many women move on from breast cancer and live normal, healthy lives.  You are doing everything right...you have gone for two opinions and are going for a third.  You had her pathology checked and double checked, and will probably be triple checked at UPenn.  Your doctors will offer you the best advice, and your wife will make her decision and hopefully it will bring her peace.  I know for myself that just because I didn't do chemo and herceptin, I know that it was the best possible decision I could make for myself at the time with the data and opinions of my doctors and 2 national cancer institutions and their tumor boards.  If my cancer returns, I will not say I didn't do everything I could, nor would I blame myself.   

Have you tried the her2support website?  The discussion boards there are great, and they are certainly worth checking out.

LadyGrey, I hope that everything goes well with your treatment   Sending you lots of hugs!

Orange's insurance slant is worth considering on the adding up the foci point.  I know from having sued an insurance company or two that they will sometimes resist when they can.

And Herceptin is about $7000/per infusion, so 18 X 7 = $126K. A big enogh number where it might get a review.  

One of the reasons I'm doing it now actually -- it is approved now.  That could change. 

Cowgirl - trouble is, in the absence of scans I still worry.

Blair - LVI is lymphovascular invasion :

http://www.news-medical.net/news/20101103/LVI-in-breast-tissue-predicts-recurrence-of-breast-cancer-in-regional-lymph-nodes.aspx

I hope not everyone with mets dies - My husband had a bowel cancer met in the lung which was removed by surgery - no recurrence nearly 5 years later and he is certainly not on his death bed. It just seemed to be the unspoken thing in our conversation with the onc.

Women with cancers <5mm are not routinely offered chemo/herceptin as that is not the current guideline. The lady I spoke about with the 2mm HER2 cancer did not get herceptin as it was not the protocol in her country of residence. It would be the same here I presume. In my case, the government pay for it to the tune of $75,000 - it is not paid for by my private insurance. She was in Canada, so the same would apply there and there would be rules as to who gets it. They had a big fight in New Zealand to get it for early bc patients but that would also have been > 5mm ones. They finally won which was good news.

Safe trip home and give your wife a big hug from us!!!

Sue

Blair

That is correct...75%-90% (using your statistics) won't recur.  The oncologist told me one of the biggest problems with the recurrence percentage of 23% that we hear (based on the MD Anderson study that everyone likes to cite during this discussion) with HER2+ cancers was that t1a and t1b's were lumped together in this study.  When broken down even further and with more studies, t1a's don't have as high of a risk as the t1b's. 

Blair -

By cure - I mean ridding the body of cancer (very long term).  This is not to be confused with "NED" no evidence of disease - which happens for periods (generally measured in months or maybe a year or 2) for non-cured metastic breast cancer that is being actively treated.  The cure rate of metastatic breast cancer was generally about 2% (pre-Herceptin days).  With Herceptin, the cure rate for metastatic Her2+ breast cancer is roughly estimated at 10%.  After breast cancer metastisizes to distant sites, it is considered non-curable (until recently, 98% of the time)- that is women must spend most of the rest of their lives on-treatment (hormonal and or chemo and or targeted therapy).  "The rest of their lives" is usually very shortened compared to someone without breast cancer.  For a high grade triple negative cancer, lifespan with mets may be a few years.  For low grade hormone positive "the rest of their lives" may be greater than 5 years, sometimes even greater than 10 or 15 years.  But 98% of the time (except Her2+ then about 90% of the time), eventually treatment stops working and the patient dies.

As a physician friend told me - you only have one chance to get this right.

I don't mean to be such a downer, but this is why physcians often push treatment so hard - even though often there is no benefit (the patient would not have recurred even without treatment - as is probably the case for your wife.)  It just that the downside of not-stopping a treatable cancer is so great - and generally (especially for aggressive cancers) there are no do-overs.

I like Orange1's quote: "you only have one chance to get this right". We all have to make our choice and it seems to me that if the only way to access Herceptin currently is in conjunction with chemo, then so be it-I'll endure the chemo for the possibility that Herceptin makes the difference in my case. I just read about another member (EJandKJsmom) with a Her2+ tumor less than .5 cm diagnosed in 5/2010 as stage 1. She wanted treatment but could not get it and is now stage IV:( Maybe it doesn't happen often (i.e. becoming stage IV from a tumor less than .5 cm) but I don't think I could ever take the chance of being on the losing side of the statistics if I had any option for treatment. That's just me.

I am very sorry to hear that EJandKJsmom had a recurrence, despite enduring chemo and radiation.  I will keep her and her young children in my prayers  

Blair, I did not have chemo and herceptin because it was not recommended for me by any of the oncologists I visited except one, Dr. Wong, who said she would offer it to me despite the unknown benefit because I was 30.  My particular cancer was 98%ER, 90%PR, with a proliferation rate of <5% (very slow growing, despite HER2+).  I had no LVI and no lymph node involvement.  I am very comfortable with my decision and at peace with it completely.  I know I did all that I could with regard to getting the opinions of three medical oncologists locally, CINJ, and Dana Farber.  All of my doctors were confident and unanimous that they felt chemo/herceptin would not benefit my particular cancer.  Chemotherapy does not come without its side effects and toxicity, so in weighing the risks vs. unknown benefits for me, as a t1a patient, it wasn't justified.  I had 33 rounds of radiation, and am on Tamoxifen.  Every tumor is different, however, and should be carefully reviewed as you and your wife are doing.  I LOVE my team of doctors, and am very confident in their experience and ability.  It takes a lot of trust to choose doctors that you are comfortable treating with, and I admittedly had some help in choosing my oncologists (surgical, radiation, and medical oncos) because I am fortunate enough to have a few friends in the field who sent me to the best they knew.  I think your wife's decision will become more clear after she hears the next opinion at UPenn. 

Of course I worry about recurrence every day.  Every cancer patient does.  Time does help to ease some of the nervousness, however.  None of us will know for sure we are cured until we die of something else.  This is why doctors don't tell us we are 100% cured after treatment.  There is always going to be a percentage of people who recur and end up with mets.  My brother's mother in law had a mastectomy, chemo, radiation, tamoxifen and arimidex, only to find out 11 years out that she now has stage 4 triple negative  She is now treating with Dr. Wong at CINJ.    

I do absolutely believe in Herceptin and all that it has done to change HER2+ cancers.  I wish at the time it was offered sans chemo for people like me.  I am not a medical expert, and certainly can't tell you that your wife should or shouldn't do chemo/herceptin.  I just wanted to share my experience.  Not all cancers are exactly the same, even when they sound exactly the same, and hopefully you are gleaning some sound advice from all of us here who have been through this.  The t1a HER2+ ladies are few and far between.  Prior to hearing about EJandKJsmom today, the only other one I have ever seen on here is my friend Jenn, JSandstrom.  She and I are doing extremely well sans chemo/herceptin, so there is hope if your wife decides to go our route   Hope is always a nice thing to have when making these decisions.

Ladies, you are all an inspiration to me.  Keep fighting the good fight and God bless you all