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All TopicsForum: HER2+ (Positive) Breast Cancer → Topic: How much does Herceptin improve HER2/neu + prognosis?

Topic: How much does Herceptin improve HER2/neu + prognosis?

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Feb 17, 2009 10:48AM

Rubyluby wrote:

Hello ladies,

Although I'm stage 1 and had a small (1cm) tumor) and am node negative, my surgeon was quite doom-ey about my being grade 3 when he gave me my post-lumpectomy pathology report on Friday. He said the Her2/neu + went together with the grade 3 which had an unfavourable impact on my prognosis, but that treatment should bring the percentages up. Bummer! Up until that point I thought my outlook was pretty good but I'm now depressed as hell.

I've been reading everything I can find about HER2/neu and it seems the words "aggressive"and "poor prognosis" crop up a lot. Is that just what the situation was PRIOR to Herceptin and the popular perception has still to catch up? How much does Herceptin change the picture?

I can't see my oncologist-to-be till the end of next week because she's on holiday and this is all chewing me up. Does anyone have some facts or figures? I know about the big HERA trial, but it seems stage 1 HER2/neu is still a bit of a mystery.

It's great having this space to connect to other women in the same boat!

Lucy 

Dx 1/13/2009, IDC, <1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2+
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Feb 17, 2009 11:35AM mom_of_2 wrote:

If it helps...my oncologist told me my chance of recurrence is 7-10%. Without Herceptin it would be 35%. There is so much conflicting info and I can read myself into circles. I have decided to go with what my medical oncologist has said and even though I had aggressive cancer prognosis is good and better because of Herceptin.

Hope it helps...Kris 

mom_of_2 Dx 6/2/2008, IDC, 2cm, Stage IIB, Grade 2, 1/23 nodes, ER+/PR+, HER2+
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Feb 17, 2009 12:04PM Rubyluby wrote:

Ah, bless you Kris for your post! And 7 - 10 % I think could live with - certainly dramatically better than 35%!!

A big hug to you from across the pond (London) . I see you are 7 months down the road and I do hope you are healing and recovering well.

Best wishes,

Lucy 

Dx 1/13/2009, IDC, <1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2+
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Feb 17, 2009 07:35PM chemo_girl_warrior wrote:

Hi there - my treatment plan was modified after results from the post-mastectomy pathology report to include chemo, including Herceptin. According to my oncologist, TCH therapy (four full cycles, with H for one year) will cut my approx. 23% rate of recurrence by 75%. We're going to bring that down even further with 5 years of Tamoxifan. My understanding is that H is also the best option for women with E- and/or P- since Tamoxifan isn't as effective by itself in that situation. I had my first round last Thursday and it was a little rough, but manageable. Of course, there are many more to come, but like you I want to get those odds DOWN! Good luck and take care...Kristen  

Dx 12/11/2008, DCIS, <1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR-, HER2+
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Feb 18, 2009 06:11AM noellech wrote:

Lucy, My oncologist told me that Her2+ now have better prognosis than Her2- due to herceptin. The only down side is that you have to do the treatment. Chemo cuts recurrence risk by 33% or slightly more, and then herceptin cuts it in half again. If you had 30% recurrence risk before (yours is probably lower due to small tumor) then chemo brings that down to 20% and then herceptin brings that down by half to 10%. If hormonal therapy can be used that gains you another 25-35% reduction on top. Good luck.

Dx 6/21/2008, IDC, <1cm, Stage IA, Grade 1, 0/6 nodes, ER+/PR+, HER2+
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Feb 18, 2009 06:29AM LJ13 wrote:

Herceptin reduces the risk of recurrence by 50%. Your chance of recurrence is entirely dependent on your staging and pathology ... but whatever the number is, cut it in half with Herceptin. It's that simple.

Most of what you read on the Internet about Her2 recurrence is old data and does not factor in the most recent long-term studies.

Worry is a misuse of the imagination.
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Feb 18, 2009 06:32AM lexislove wrote:

Both my oncs said that Her2 disease has the better prognosis now. My onc was actually hoping for me to be Her2 + !

I was like.....huh?! But now I see why. I finished ALL my Herceptin treatments Nov 2008. I had no side effects. I'm continuing on Tamoxifen and Lupron. Ovaries out in 2 years and switching to an AI.

Dx:2007, 2B, Triple+, June 2008:Lupron,Zometa,Tamox.Jan 2010:Poor metabolizer of Tamox switch to Femara.Feb 2010: cyp2d6 test reliable? Back to Tamox. Ooph soon.
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Feb 18, 2009 09:33AM Rubyluby wrote:

Hearty hugs and thanks to all of you for such encouraging, helpful, positive information. I feel so much better.

And best wishes to all of you on your road to recovery. 

Lucy 

Dx 1/13/2009, IDC, <1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2+
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Feb 18, 2009 09:39AM lisettemac wrote:

According to Adjuvant Online (the database my onc used to run through his recommended treatments), Herceptin cuts your remaining risk (after all other treatments) in half.  My Onc said that while it gives you a higher initial rate of recurrence, it is actually a positive characteristic because they now have Herceptin to fight it!  And, though you didn't ask, it isn't a tough treatment.  Compared to chemo, it's easy.  More of a chore than anything.  Feel well.

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Feb 18, 2009 12:34PM - edited Feb 18, 2009 12:35PM by my2boys

I was told by 2 different oncologists that my chance of recurrence was close to 40% without chemotherapy and herceptin, but that was cut in half (less than 20%) with chemo and one year of herceptin treatments.  If herceptin is approved for more than one year, this could lower the chances even further. 

Laughing

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Feb 18, 2009 12:48PM - edited Feb 18, 2009 12:49PM by Sassa

my2boys,

Studies have already been done that show more than one year of herceptin for early stage disease is no more effective than one year of herceptin.  The one year also lessons the chance of heart problems.

The new idea that has been studied in Finland show that 3 months of herceptin is as effective as one year.  More studies need to be done on the shorter treatment time before it becomes the standard of care.

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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Feb 18, 2009 02:28PM orange1 wrote:

Hi Sassa,

Do you have any specific information regarding which study(ies) showed that more than one year of herceptin is no more effective than one year?  The only large study in the adjuvant setting that I am aware of that compared one year vs more than one year is the HERA study.  I have not seen results of the 2 year arm of the HERA study yet.  Any additional information you can provide is appreciated.

Thanks,

Jackie 

Dx 8/2007, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Feb 18, 2009 05:05PM - edited Feb 18, 2009 05:06PM by LJ13

I don't recall my onc saying that they have data showing that Herceptin given longer than a year is not effective. I do recall him saying they don't have data showing that it *is* effective if given for longer than a year in early stage disease. Certainly in metastatic bc, they generally keep pumping it in as long as it keeps working.

Worry is a misuse of the imagination.
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Feb 19, 2009 06:15AM - edited Feb 19, 2009 07:36AM by Sassa

I didn't say that herceptin given for more than one year is not effective.  The longer dosing of herceptin, however, has the same effectiveness as one year (in early stage disease).

What does change is the rate of cardio-toxicity as herceptin  is given longer than one year.  The longer herceptin is given, the higher the possibility of cardiac side effects.

As I have mentioned before, the new thinking is that a shorter time of treatment (3 months vs one year) may be as effective as one year of treatment.  More studies need to be done to support the one study that shows this outcome or may eventually be  supported by historical data accumulated in countries with socialized medicine that only permits the shorter courses of treatment.

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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Feb 19, 2009 07:29AM orange1 wrote:

Sassa,

Can you tell me which study (study name or study number) showed that the longer dosing of herceptin has the same effectiveness as one year.

Thanks, Jackie

Dx 8/2007, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Feb 19, 2009 07:38AM Sassa wrote:

Sorry, Jackie.  I can't give you a study number.  The data is not available to the public.

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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Feb 20, 2009 02:51AM - edited Feb 20, 2009 03:01AM by my2boys

Hi Sassa...It appears that we have both been given different information.  My doctor told me that a decision will be made within the year if Herceptin should be given for longer (2 years instead of 1 year) to early stage breast cancer patients.  I was told that I should know something more in about 6 months.  I have spoken to a few others on this site who were told similar things by their oncologists too.   At this point, I will do what my doctor thinks is best. 

Good luck to you.

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Feb 20, 2009 06:39AM lavperry wrote:

Since it's been four years since my diagnosis and treatment for stage llb, HER2+++ BC, I haven't kept up with the latest research on the length of Herceptin treatment. In my case, I was not able to do an entire 12 months, due to decreased heart function. We stopped after 8 months. I spoke with Dr. Dennis Slamon at UCLA, and he told me that the 12 month regimen was an arbitrary number that they initially chose when setting up the treatment guidelines. He felt that 8 months was entirely adequate, and pointed out that there had been a Finnish study that seemed to indicate 9 weeks - 3 months, might suffice. 

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Feb 20, 2009 06:55AM lexislove wrote:

I asked my onc about the whole 1 year VS 2 years. He said that even if 2 years of Herceptin showed to be more superior, ( which he doesn't think will) it will be a very minimal difference.

Dx:2007, 2B, Triple+, June 2008:Lupron,Zometa,Tamox.Jan 2010:Poor metabolizer of Tamox switch to Femara.Feb 2010: cyp2d6 test reliable? Back to Tamox. Ooph soon.
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Feb 28, 2009 12:01PM mmm5 wrote:

can we bump this again and does anyone have a formula, I have been told so many different things on stats.

First when I got the oncotype they stated 15% risk of recurranc in 10 years with an AI and CMF. Both my top Onc's state that this is old data and no one uses CMF anymore and it doesnt work on HER2 anyway. Then they said 12% risk if I use an AI and TCH.  I am also in BISPHOS study and they said that would reduce risk further.

Now last week I met with the top ONC at U.of Arizona and he runs a part of the national study for BISPHOS and has worked at MD Anderson etc etc.

He now says in retrospective studies with Herceptin node negative women, it looks like my risk of recurrence is more like 5% and that HER2 is now best  prognosis. I didn't get a chance to ask him how he comes up with that number because I was too  busy going through all of my other hypochodriacal questions, but just wondered what my other HER2 sisters have heard on stats.

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Feb 28, 2009 12:10PM swimangel72 wrote:

HI - my oncologist ordered the Oncotype DX on me prior to finding out that I was Her2++++. My score was a 23 - which put me at a 14% risk of recurrence. He then told me that Herceptin plus chemo would reduce my risk to 7%.......not sure if this answers your question, but over and over again I've read that Herceptin plus chem reduces your personal risk 50%.

3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53 Dx 2/5/2008, IDC, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2+
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Feb 28, 2009 06:25PM - edited Feb 28, 2009 06:26PM by orange1

This Post was deleted by orange1.
Dx 8/2007, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Mar 2, 2009 08:33AM - edited Mar 2, 2009 08:35AM by Liz08

Swimangel-

your risk after chemo and Herceptin should be around only 4.9%. Chemo is supposed to reduce your risk of recurrence by 30% and Herceptin by another 50%...so 14% minus 30%(4.2)=9.8%  and 9.8% minus 50%(Hercepint) = 4.9%.  So you have a risk of less than 5%, which sounds great!!!  Or am I wrong with my percentages?  I always like to look at the brighter side when possible.  Thought I would share my computations.Wink

Liz

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes
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Mar 2, 2009 12:02PM mmm5 wrote:

Liz where did you get your stats, don't get me wrong I love them, but I thought the 50% included Herceptin with Chemo together. I hope I am wrong.

Its confusing, I am on Arimidex, final Herceptin, and in the Bisphos trial, if I added all these reduced risks I would have no risk which I know is not true but can't figure how to add it all together. Maybe it isn't something for me to dwell on, its really its either going to recur or not.

Wish I could make it that simple!! Laughing

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Mar 2, 2009 01:15PM swimangel72 wrote:

Thanks Liz - I appreciate your calculations! I'm not much of a numbers person myself.........all I know is I was at such a ridicluously LOW risk for getting BC from the get-go, that I feel like I need all the help I can get to get off this bad-luck roller-coaster. Frown
3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53 Dx 2/5/2008, IDC, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2+
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Mar 2, 2009 02:47PM mom_of_2 wrote:

My oncologist told me chances of recurrence in my case is 7-10% with Herceptin and 35% without Herceptin. Just like everything in this process...there is a lot of conflicting info.

mom_of_2 Dx 6/2/2008, IDC, 2cm, Stage IIB, Grade 2, 1/23 nodes, ER+/PR+, HER2+
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Mar 2, 2009 03:19PM - edited Mar 2, 2009 03:24PM by Liz08

MMM5-

You may want to google to see what info you get. But my understanding about chemo it's supposed to help on the average of 30% (you need to get the risk of recurrence from your doctor who usually gets it from adjuvantline sp?). I personally think that for some chemo, may help more and for some less, depends on how well you respond.  After that Heceptin is supposed to cut your risk of recurrence by about half.  Atleast that's MY understanding.  If anyone was told something different please feel free to chime in.  

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes
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Mar 2, 2009 03:41PM - edited Mar 2, 2009 03:43PM by Liz08

Swimangel-

I know what you mean about getting breast cancer from the get go.  I come from a family of longevity. I have an aunt that's 104 and others who are well into their 90's etc. There's no family history of breast cancer (I'm the youngest of 6 girls) and look what happened to me at the age of 38 while my youngest child was only 8 months old. I have done everything right, stayed in shape, ate right, exercised etc.  Usually I'm OK but at times I get angry on why bad things happen to good people and why life sometimes isn't fair. After that I try to remind myself to do a reality check and tell myself that I shouldn't waste my energy on negative thoughts and to move on and focus on my family.  All we can do is stay vigilant and live our life to the fullest.  

Wishing you the very best,

Liz 

Dx: 1/16/08, Stage T1mic, DCIS, < 1mm microinvasion, ER-/PR-, Her2+, 0/1 nodes
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Mar 3, 2009 08:34AM 07rescue wrote:

I spoke with someone from the manufacturer of Herceptin last week and he said that the company was working on finding out whether Herceptin for two years is significantly more effective than one year of treatment, and they are trying to develop a subcutaneous injection to replace the hour long infusion as the means of delivery. It would be much more convenient that way, for sure.

For me it would really have to be very significantly more effective to justify the high cost of two years. I would rather that extra one year went to someone who could not afford Herceptin, instead of using two years myself. If it really did lessen the chance of recurrence a good deal then it might be worth it, because recurrence places a huge extra burden on the health care system in terms of costs. And if one is disabled as a result of recurrence, then there can be the added burden of disability costs, and the loss of a taxpayer to boot...

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Mar 3, 2009 01:44PM 08Survivor wrote:

My oncologist told me that the statistics on Her2 positive breast cancer look scarier than they should because a lot of women end up not following up with the same doctor, etc.  and hence the statistics don't always show the real picture.  I went to the Mayo Clinic and that was a question I posed and I was told that after treatment, they usually never see the women again! 

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Mar 3, 2009 04:52PM mmm5 wrote:

O8

I am confused you asked about survival, or are they commenting because of Herceptin they don't usually see women with recurrance?

Dx 4/4/2008, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+

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