For early stage patients who are... - Page 2

schoolteacher · 02-17-2009, 09:48 AM

Jean,

The article and the replies were very interesting.

Amelia

lizm100 · 02-18-2009, 11:37 AM

Susan-

I wouldn't jump the gun about not having adequate treatment based on this broad range study. I don't know the actual size of your invasive component but I have been told by several doctors that with her2+++ tumors, every millimeter (not centimeter) counts when determining appropriate treatment.

It's good to see that there are finally more studies being done on early stage her2+++ tumors but this study along with most of the others studies I have seen are flawed by lumping 1mm along with 10mm her2+++ tumors. You can't accurately compare the recurrence risks of someone with a 1mm tumor her2+++ tumor(node negative) to someone with a 3 or 4mm her 2+++ tumor(node negative) to someone who has a 10mm her2+++ tumor. And once again no new studies for someone like me who is less than 1mm which is stage T1mic. This I find very frustrating personally.

What I have been told by various doctors, hormonally positive, node negative, her2- tumors appropriate treatment is determined by centimeters (along with node status) but when it comes to hormonally -, node negative, and her2+++ the importance is measured in millimeters not centimeters.

I was also told that chemo/herceptin is standard protocol for those who are stage T1b(5mm or more) or higher regardless of node status if your are her2+++. So the information on stage T1b is nothing new other than reinforcing that systematic treatment should be standard with her2+++ tumors. At least that seems to be the protocol based on the doctors I consulted with in the northeast. I believe that NCCN guidlines support this as well.

Jean, thank you for posting these studies but I wish when they do studies they would have a more detailed break down. This is extremely important with her2+++ tumors.

alicem · 02-18-2009, 01:36 PM

Can someone help me understand the difference between standard protocol and FDA approval? Without knowing any better, it seems to me that oncologists go by what the FDA approves in order to set up the standard protocol of care.

In doing research I see that the FDA approved the use of Herceptin for Early Stage Breast Cancer (EBC), Her2+++, Node Pos. in November 2006. The FDA approved the use of Herceptin for EBC, Her2+++, Node Neg. in January of 2008. So the standard protocol of care that Liz is referring to did not actual come about until January 2008?

It looks like Susan became a member in March 2006, and the standard protocol of care at that given point in time, not now, was to give chemo and Herceptin ONLY to women with advanced stage breast cancer. If that information is correct, her oncologist, in March 2006 gave her the appropriate advice for the existing protocol at that time. However, the protocol has now changed. Do we know if Susan were newly diagnosed today if her oncologist would give her the same advice now that he gave her in March 2006? Perhaps not since the protocol seems to have changed between now and then.

My only point is that we are not doctors, we do not know the size of her tumor. What does it hurt for her to go in and get a second opinion from a second oncologist, and then get a third opinion from a third oncologist. When I was first diagnosed with DCIS, I went to 2 different oncologists just to seek their advice as to whether I should proceed with a lumpectomy or with a mastectomy as my next choice. They both told me they saw no reason why I should opt for a mastectomy. I chose the lumpectomy, only to need a mastectomy anyway. Thank God I had the mastectomy because that is the only time that any invasive cancer was found, it never showed up on any biopsy, or mammogram or MRI. Would I have done anything different, no. I felt I had peace of mind because I had asked for more than one opinion. The nature of my cancer dictated my care. I shudder to think if my surgeon would have gotten all clean margins on my lumpectomy - the cancer would not have been found.

Jean · 02-18-2009, 06:36 PM

lizm100,
First of all : the reason I posted the two posters from the Breast Cancer Symposium is because we often have new members who sign in and are early stage and have been advised by their dr. to have chemo/herceptin treatment. As my thread was intended to inform the newly dx. of the latest posted information from the BCS.
It has been very upsetting to me that many newer members are conflicted with having treatment.

Of course there are the horror stories and side effects of chemo that COULD happen....and I just wanted to share the stats - I am more concerned that it is realized that by adding chemo/herceptin they are adding great numbers to the odds of NOT having a recurrence...we know that from these posters that recurrence free survival and distant recurrence free survival has significantly been reduced when adding herceptin. (of course this is now a no brainer).

We can cut this up many different ways with each person's outlook, but the posters are shouting at us,
that herceptin along with the chemo has changed the
game. If one wants to dwell on the chemo side effects, do so, for myself I am observing the posters and the facts, and this is the point of the study.

Does chemo/herceptin change the odds.
Yes, Yes, Yes, Will chemo one day not be necessary,
I hope so...we are just not there yet.

Now, back in 2005 when I was dx, early stage, node
neg. small tiny tumor...3MM...of course what I heard was no chemo/or herceptin...that was the protocal
at the time. Were women getting herceptin off label,
they sure were....long before FDA approval.

When I visited Dr. Slamon here are his words.....(three yrs prior to FDA approval)....
"Her2 likes to travel and I believe all women should have herceptin.." period...now I had other dr. telling me I did not need herceptin for my tiny tumor. Rubbish....
PLEASE do remember it is not about size when we discuss HER2 positive cancer. My tiny tumor was very aggressive and my KI-67 levels were high. As a matter of fact, Dr. Slamon said, "the dr's. in New York missed the boat, I was correct to be worried, they should have known from the KI-67 levels alone that my tumor would have a high recurrence rate." But, the dr's. at that time would not vary from protocal, it took them a few more years to catch up and change their protocal, why ? Insurance, and the fear of getting sued. Dr. Slamon strongly assured me it had NOTHING to do with size...long before the other dr. caught up. I had the Oncotype DX test, (again my KI-67 levels) demonstrated enough and I really never needed this test, but by having the test my insurance would cover my herceptin treatment for early stage bc. By the way the Dr's in NY were shocked with the Oncotype test results, that for a tiny tumor it was so high...but as I said Dr. Slamon was not.

One has to ask...how long will it take for dr's. to STOP judging treatment based on size of a tumor and begin to concentrate their efforts on the character of the tumor?
We are now just entering the doorway in this regard to treatment and have a long journey ahead of us. I had asked Dr. Slamon how many cancer cells are in a small 3MM tumor, his answer was "MILLIONS" so, are you getting his point. Size is not the issue to determine treatment.

I just visited with my NY onc. where we discussed these very posters, and he said, because I insisted and continued to search back then I had more than likely saved my own life. I have to agree.

Now, let me share some more info.When I first found this site back in 05 I quickly learned there were sisters who were dx. with small tumors early stage 1, some had masectomy while others had lumpectomy. Some were dx. with DCIS (very small) and a few recurred in 18 months, I was surprised. I was still learning about HER2 and didn't understand how come one went from Stage 1 to Stage IV in 18months? Please DO remember not everyone recurs. I realized that I had to go further and not give up. Don't you see size does not matter, HER2 is HER2. 3MM or 1CM...it is what it is. Some of us will recur while others will not (about 80% don't) But please let us not encourage any women to think or consider that her dx. of HER2 is not an enemy to contend with just because she has a tiny tumor. While a smaller tumor is favorable along with negative nodes, does that provide a feeling of home free...no, because looking at the poster of women studied that is why the FDA approved herceptin for early stage women.

I think if susan is concerned she should go to a great source of information (like UCLA and ask Dr. Slamon) to have her questions and concerns answered. We also have a new memeber who does not want to have the chemo portion of treatment, she only wants the herceptin. She also should seek out those choices.
Not based on fear of chemo or the what if's but based on her tumor, what characteristics is her tumor, what is her recurrence rate, the rate of growth, the KI -67 levels.

We are all fighting the same battle, no matter what stage we are!

Kindest Regards,
Jean

Laurel · 02-18-2009, 07:05 PM

Well said, Jean. Bravo! At the time of my dx I researched Her-2 and felt paralyzed by fear! I found a table of stats showing 10 yr recurrence rates for the various forms of BC. We triple pos. gals were next to the bottom for high recurrence. For someone with my pathology, Stage1b, the 10 year chance of recurrence was 25%. That translates to a 1 in 4 chance of progressing within 10 years. I went the chemo, Herceptin route in a hurry!

I suspect that down the pike the protocol will be Taxol and Herceptin, no Adriamycin, Cytoxin, or Carboplatin for very early Her-2 stage. However, that is just my gut on this.

alicem · 02-18-2009, 07:23 PM

Thank you Jean for the excellent post. I want to add that when I went to see my oncologist after the mastectomy, the size of my tumor never entered into the conversation in regards to my treatment. The only thing he was concerned with was the fact that I was Her2 +++. That, and that alone dictated my treatment of TCH. My oncologist is considered one of the best here in Austin.

Jean · 02-18-2009, 07:39 PM

Alicem,
It sounds like you're dr. is ahead of the curve.
I am glad and thank you for sharing your story.
Which brings another issue into play.

Many women have the surgery and think - okay the tumor is removed. I also found out after my surgery,
to have an MRI of both of my breasts, as it is possible that another tumor could be buried inside and go unnoticed. Many dr. do not order this, why? who knows, I stopped trying to figure out why the dr. don't do these things. I just tell other women to turn every stone over and make sure they have done all they can
to ensure the breasts are tumor free. So many times we hear a single tumor removed only to find out later
there was another, the MRI is just another helper, nothing is 100% but we have to be thorough.

All good wishes,
jean

alicem · 02-18-2009, 08:28 PM

Thanks Jean.

You are 100% correct in that my Dr. is ahead of the curve. I am very fortunate in more ways than one. I found out that during his schooling, (not sure if it was a residency or a fellowship, or what) that he worked at UCLA. He had tried to get into Dr. Slamon's group. He was unsuccessful, but he was there in the mid to late 1990's when all of the Her 2 stuff was ongoing. I mentioned that it was too bad that he wasn't able to get into his research group. He said not really, because if he had, he would still be there and he wouldn't be treating me!!! Indeed it is my good fortune!!! He also said the boss he worked for helped develop the FISH test so I think I am in really good hands.

karen z · 02-18-2009, 08:55 PM

Jean,
THANK YOU for the excellent post and valuable information for all of us.
Best,
Karen

alicem · 02-19-2009, 07:12 AM

Liz,

I am sorry, it was never my intent to gang up on you. I apologize if I have done anything to offend you. My sole purpose for replying to this thread has been Susan's welfare. In my opinion she seemed very frightened in her post. In my opinion some very well intentioned and well meaning women have told her not to worry, that she is probably fine. In my opinion they could be right - the statistics do support that (by 2-1).

It would greatly upset me however if Susan were to take our advice, saying "it's probably nothing - don't worry" instead of going to see a doctor (or 2 or 3). Things have changed, protocols have changed since she was newly diagnosed and things will continue to change.

I feel at this moment in time that I am blessed to be getting what I consider the gold standard of care for my situation. HOWEVER, I plan on always monitoring this site for new information. If 2 years from now, I see that new research or new clinical trials show that breast cancer patients are now getting Treatment B instead of Treatment A, I will be the first to appear on my doctor's doorstep to see if there is something new he can do for me that wasn't available on 1/20/09. He might say "No, sorry" but then again he might say "Yes, let's try it". I won't know unless I ask, will I?

Becky · 02-19-2009, 10:02 AM

Hi

I want to clarify some items that are coming up due to this thread. There are three different situations going on here. One is Jean's research attachments that very early stage Her2+ women may need more treatment than they might receive as they recur more than might have previously thought. Another is that Susan was worried that she might have been undertreated over 3 years ago and thirdly, our opinions on what Susan should do.

Let's go on some facts that came out of the trials to prove that using Herceptin in the adjuvant situation. In May 2005 during the ASCO Conference the papers on the trials using Herceptin as an adjuvant were presented (3 different trials all proving Herceptin reduces recurrence rate by 50%). At that time with tens of thousands of oncs in the room and tens of thousands listening via podcast the greatest research oncologists in the world told those listening - "gather your Her2+ women who are taking chemo now AND all those who had their last chemo 6 months ago or less and get them the year of Herceptin now!!!" I was listening and was 3.5 months from my last chemo. My onc wouldn't do it because it was not FDA approved (took 18 months) but Sloan Kettering would as long as I had my chemo records to prove the 6 month part (this was later changed to 12 months). At that time, many oncs would still give Herceptin until the 2 years from surgery date (your survival date) . This is because the greatest chance of recurrence for any bc is the 2 yrs from the surgery date. Her2+ tends to be 18 months from the surgery date.

I will tell you now that at about 18 months past any surgery date - it would be impossible to get any onc anywhere to give you chemo, herceptin, radiation whatever. If you are hormone positive and never started on anything, you would be able to get that but after 2 yrs past surgery, no one will touch you because you are way past the most dangerous time.

Secondly, I am really big on treatment for Her2+ women BUT the three adjuvant trials had a criteria for node positive so those trials didn't have any results for node negative women because there weren't any. Sloan did a fourth trial using dense dose chemo (as the adjuvant trials did not use dense dose since it wasn't being used at the time the trials started). Sloan did allow node negative women in that trial but their tumor had to be larger than 1cm (and it really did have to be larger as I know a woman who tried to get in that trial with a 1 cm tumor and could not and I know a woman (on this board) who got in with a 1.1 cm tumor). Therefore, there is no data on chemo with Herceptin on women with tumors 1 cm or less. There is no data on Herceptin only. It is only intuitive what could or might work. There is data saying that women with tiny Her2+ tumors recur more than Her2 neg tumors (we all already know these tumors are more aggressive anyway). What we don't know is how hormone status affects the recurrence of Her2+ tumors. There is data in regard to the adjuvant trials where they do start to track Hormone pos vs negative. There are also recurrence rate papers tracking Her2+ hormone+ vs neg. It is also shown that hormone negative tends to recur significantly more and tends to recur early.

So, in answer to treatment vs no treatment - you have to gather the facts via medical opinion and that needs to be done upfront at diagnosis. 2-4 years down the line you need to rely on what was done and appropriate lifestyle changes.

Each person has to decide what to do and do it then. 3-5 yrs ago (and currently) there is no study or data on what to do with a small Her2+ tumor and I think a newly diagnosed woman needs alot of opinions on what to do. Hopefully more diagnostic testing on that tumor will show who will benefit from maximum treatment and who will not so that overtreating can be eliminated.

Jean · 02-19-2009, 12:00 PM

lizm,
No one is ganging up on you...I have always posted on my experience and what I have been exposed to via Dr. Slamon whom I trust 100%..I do believe in him and his view points regarding HER2 ...for me he has proved to be cutting edge. That is fact (for me and others)
I was in no way attacking your dr or their status.
Please do NOT believe for a second my thread was about "you"...

We have to be very open when we post so that members especially new members who are very frightened and new to their dx. do not hide under the covers because that feels safe. They need to be encouraged to explore options, information and that is why this forum is so special...everyone contributes.

Next, to address your personal feeling of being attacked or ganged up by me numerious times....I will go back and check my posts. I do not even remember ever in the past or recent year of addressing you? But I certainly will go back and check my post and if I have done that to you on a personal level I will be more than
eager to address that.

Your statement that there is a "group" of ladies that have fled the forum due to me is certainly unfounded.

While the nature of the forum is to share experience, be supportive, and certainly to encourage each other to fight this disease and to beat it. I certainly have been active for that.

Yes, I will admit I do take a strong stand for the encouragement of not frightening any member new or old (but especially new) in regards to treatment. I will never post the negative issues of not having chemo/or treatment...I will mention there are side effects that are nasty and unpleasant, but that comes with our disease.

Believe me my postion is one of true conern and love for my fellow sisters, if you took this as a PERSONAL attack, I am sorry that I have offended your sensitivity. It was not about you...my interest was in sharing new posts from the BCS...for the newly dx. The thread did wander into different discussions...nothing wrong with that.
I certainly wanted to stay on course that...
HER2 is not to be based on tumor size...this I have learned the hard way from my own experience and yes, I had great top dr. here in NY...who went by the size of the tumor.

We have all learned as we entered this forum that we must...seek 2nd 3rd or even more opinions and to never ever give up.

When I first came to the site I called Christine and she encouraged me after many opinions to get herceptin. I am forever in debt to her for validating my concerns.

I well remeber those early days and the fear.
So I have tried and attempted to pay it back by always being strongly positive on the site and to encourage any and all to move forward and get every answer until you feel you have reached a comfortable point.

This thread was not directed at hurting you in any way and as you can see by reading the different posts that responded, many who were dx. and had some concerns were happy to contribute...this all passes down to the brand new memebers who join and they realize they too will and can survive this disease.

If there is a group of anyone out there from this forum that I have hurt in any way I am deeply sorry. I am in contact with dozens on the site so I am rather surprised that you state there is a group who I have ganged up on or have been harsh to.

Also I would like to mention that often times the people that remain active on the site are often times at a further stage and it is noted that many leave the site after treatment and just move on with their lives putting cancer behind them. They do not abandon the site but feel it is time to close this chapter.
Myself and others who are early stage have stayed on because of my own deep feelings of loyality to the site (it was always wonderful to me) so therefore, I wish to extend to others new and old that there is certainly light at the end of this tunnel.

Thank you Becky as always for your sound and wise
response. I know you realize what my aim was here.

Kind Regards,
jean

Jean · 02-19-2009, 04:21 PM

lizm,
I have read all of you're 65 posts and all threads,
and as I thought, I at no time ever addressed you in a thread or posting....I was responding to the topic at hand.

And in all of my replies there is a constant movement which if anyone reads is MY purpose on the forum.

Your statement, of .....
Jean, from the 1st time I joined this forum last year, you have always chosen to gang up on me. EVERY SINGLE TIME!!!!

I have never responded to you directly prior to this thread. So you outlash is strange. But after reading over the posts I now understand where you are coming from...

As I said earlier, I doubted I was harsh to anyone but
I will always stand strong in my position, that on the forum we must all share our experiences, support one another and we do NOT have to agree with each other,
that is what makes the site a wealth of information and in sight.

We are all forced to grow up and deal with this disease, like it or not, but never mistreat anyone, or make untrue statements.

jean

Jean · 02-19-2009, 07:17 PM

Wow You definatley need to grow up, no one suggested your dr. was behind the curve....my statement was to Alice in regards to her situation, that we were responding to each other, this is an open forum, you were not our subject! Not everything on the thread is about you....and certainly not towards your situation.

As you so stated you took the advice of your pathology and made the decison that is best for you.
What is your problem?

Stop twisting words around and try to be civil.
Anyone can read all of my postings and see there is no doom and gloom - only suggestions to check out all information and certainly without a doubt in good spirit and faith.

So stop beating a dead horse and try to act in the good faith this forum is set up for.

Wishing you health,
Jean

harrie · 02-19-2009, 11:59 PM

I have always felt that Jean posted valuable information and has shared her personal experiences and helpful suggestions with nothing but 100% compassion and positive intentions. I never felt any condensation whatsoever to any member from her posts that crossed my path.
I joined HER2 after my 2nd chemo treatment and she was the one who took the time to explain her experiences, offer valuable suggestions, and in all actuality, SHE was the very one who gave me the emotional positive support to get through the hard times to the very end. I will forever be in gratitude to her for her love and compassion.
Sometimes I think judgements are merely personal perspectives and should be understood as such.
Wishing everyone peace...

nancy dip · 02-20-2009, 02:11 AM

lizm1000--Jean is not the enemy here--breast cancer is!! Respectfully Nancy

Laurel · 02-20-2009, 10:52 AM

Ladies,

I do not think this thread will frighten away any newcomers. As a matter of fact I sent this very link to a newly dx'd Her-2 gal who was posting on BreastCancer.org and wondering whether she should go the chemo/herceptin route. She is a Stage 1 gal.

I see we got into a bit of a misunderstanding, and that is most unfortunate because we are all in this together. I also know that without inflection of voice we cannot always fully understand what another is trying to convey in the written word.

It is my hope that Susan will at least discuss further treatment if she is feeling insecure. What can that hurt? She played the hand she was dealt at the time and now treatment protocol for a patient in her stage has advanced. I hope she is successful in her quest, or minimally has her concerns and fears allayed.

I'm not certain how this thread spiraled out of control into finger pointing, however please look at all the amazing information posted here. It is a great thread for those who are wondering if they should do chemo or not. I was one of those fence sitters initially until I began to accrue all the facts. Then I reluctantly (and fearfully) did the chemo because I was convinced I needed it. I think in hindsight I feared the chemo more than the cancer!

Thanks to all of you courageous people battling this vicious foe...Her-2 positive cancer.

AlaskaAngel · 02-20-2009, 11:17 AM

This is not a popularity contest here, it is a breast cancer SUPPORT website. The great thing is that we all want to help each other survive, regardless of our personal beliefs or biases about treatment. Each person who posts is merely offering an opinion, and each person's opinion should be honored respectfully as a matter of mutual support. Posting authoritative research studies or directing people to them does not damage other people's feelings; using fear and words loaded with emotion to try to drag people into or away from treatment does. We are all stuck with a chronic disease and we all have very different situations and characteristics of cancer to deal with, and not enough definite answers for them. Make the best of it, not the worst.

AlaskaAngel

alicem · 02-20-2009, 11:21 AM

Very well said Alaska Angel and Laurel. Let's all continue to support one another.

Jean · 02-20-2009, 11:43 AM

Let us all get back on track.
I will admit I have a passion and I do this with everything, enjoying my family and friends, cooking,
even walking my dogs.

I am enjoying the heck out of each moment and yes I am bursting with passion and emotion...not a bad thing!

I don't believe that anyone person (except Christine)
has won a popularity contest on this website. We are all here in the same boat....but thank goodness we do form friendships and isn't that wonderful? Cancer is not all bad news, hey?

So let us remain in the spirit of the forum to share information and my goodness we are human - is there so much wrong with feeling good? When members post who are worried and say so with deep emotion and passion it is in the same spirit of us exchanging our souls.

Let's lighten up...and play nice in the sand box together.

Regards,
jean