Recurring breast cancer 4 woman who didn't need Chemo.

Barbe...hmmmmm....you say:

"So basically VR you are saying that no one with a tumour less than 3 cm like the OP should bother answering?"....No! That is NOT what I said.

This is what I said:

"When newbies post whether or not they will be offered chemotherapy could you explain the process properly or not say anything at all? You just confuse newbies when you say your surgeon said to save "the big guns for later."

The process includes a medical oncologist visit. The medical oncologist may request genetic testing. The medical oncologist will go over the research, guidelines (based on standard of care), statistics, risks, health of the patient, characteristics of the tumor and the patient's wishes before offering an opinion. The medical oncologist will also explain that depending on treatment, that may or may not include chemotherapy, the protocol will hopefully spare the patient from revisiting this disease in the future."

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Once again I will recap...beginning with what you initially said (including your signature). BTW, this is usually what you often say when newbies bring up the question of chemotherapy....

Barbie said on this thread:

"If they say no chemo it means the chemo won't work on your tumour. There's no point in doing it as it won't make a difference. That's why those tests were implemented. There was nothing like that when I got my breast cancer 8 years ago - they just guessed and/or threw everything at you if you wanted it. My surgeon said to "save the big guns until next time" so I did. I went 7 years without a recurrence and with just surgery. No Tamoxifen or radiation, and no chemo.

I did recur, but got 7 years NED. Would I have recurred if I'd had chemo 7 years ago? Probably. The cancer grows at it's own rate in it's own time. If chemo isn't going to work why take it? Some women go from doctor to doctor to get second, third and fourth opinions until finally one of them says what they want to hear. Be careful."

Dx 12/10/2008, IDC: Papillary, Left, 1cm, Stage IB, 2/5 nodes, ER+/PR+, HER2-Surgery 12/16/2008 Lymph node removal: Left, Sentinel; Mastectomy: Left, RightDx 2/4/2016, IDC: Papillary, Left, Stage IV, ER+/PR+, HER2-Hormonal Therapy 2/11/2016 Arimidex (anastrozole)Radiation Therapy 2/17/2016 Whole-breast: Lymph nodes, Chest wall

Point #1. You said that your "surgeon said to "save the big guns until the next time" so I did." NOWHERE DO YOU MENTION THAT YOU RECEIVED THE OPINION OF A MEDICAL ONCOLOGIST WHO IS THE CLINICIAN THAT MAKES THE RECOMMENDATION TO HAVE OR FORGO CHEMOTHERAPY.

IT ISN'T UNTIL MANY POSTS LATER THAT YOU TELL US THAT YOUR CASE WAS PRESENTED TO A TUMOR BOARD WHERE I ASSUME A MEDICAL ONCOLOGIST PARTICIPATED IN MAKING A PROTOCOL RECOMMENDATION.

Point #2. Then you tell us:

"I asked my surgeon what the fastest way to get back to work would be. He said if I had a mastectomy I could avoid chemo. So I did. Why is that confusing?????"

Confusing??? Of course it is confusing. In fact, your statement is beyond confusing. AGAIN, THE SURGEON IS NOT THE PHYSICIAN WHO MAKES THE DETERMINATION WHETHER OR NOT ONE NEEDS CHEMOTHERAPY BASED ON THE STANDARD OF CARE. However, IF the surgeon is part of the tumor board, then he can make a SUGGESTION that the tumor board considers. That said, FOR AS LONG AS I AM READING THE NCCN BREAST CANCER TREATMENT GUIDELINES IT HAS NEVER SAID THAT ANY PERSON WHO HAS A MASTECTOMY FOR INVASIVE CANCER DOES NOT NEED CHEMO. The surgery has no bearing on whether or not a person requires chemo. AS you quote cancer.net...and as I have said, over and over and over again, a chemo recommendation is based NOT ON THE TYPE OF SURGERY BUT IT IS DETERMINED BASED ON THE PATIENT'S TUMOR'S CHARACTERISTICS, THE AGE OF THE PATIENT, THE HEALTH OF THE PATIENT AND THE WISHES OF THE PATIENT.

Now.... point #3...

You tell us that you did your own research, but you say:

"I have no idea what the Standard of Care was in 2008 here in Canada. I did what I was comfortable with and haven't looked back. Ever"

That is fine! Everyone should be comfortable with their treatment decision....BUT, don't you think everyone should have a right to know what the Standard of Care is? Clearly, you did not know it nor did you care to know it when you decided what treatment was best for you. But as so many of us have tried to tell you, based on the Standard of Care in 2008, you were under treated. Now had you been treated according to the NCCN guidelines of 2008, there is no way of knowing if you might not have recurred. But, even that is NOT what I take issue with. What I take issue with is that you tell the OP that your surgeon told you to save the big guns for later. And while I believe s/he could have said that, THAT STATEMENT IS NOT SUPPORTED ANYWHERE IN ANY GUIDELINE FOR ANY YEAR! When physicians initially treat an early stage breast cancer patient, they do so with the intent that treating based on the Standard of Care will hopefully avoid a recurrence.

Barbe, DO YOU UNDERSTAND??? No physician, unless a patient is Stage IV with an ER + tumor would ever say such a thing. Ever.

Now point #4...

rare breast cancers... I had one, as well. And yes, the treatment guidelines for rare breast cancers are not as robust as they are for the more common types of breast cancer. And that is why it is of great importance that patients with rare breast cancers get many opinions. We are not in a "gray" area when it comes to treatment options. We are in no area at all because the rarity of our tumors creates less hard data to use as a framework for guidelines. So, the point that you make that you did your own research and that your listened to your surgeon defies common sense and logic. My team made it very clear to me that there was little evidence (research) to work with to make an absolute treatment recommendation. Luckily, as I said before, the OncotypeDX test had just been FDA approved (although it still hadn't been written into the guidelines) and they made their recommendation using info from two pathologist reports and the genetic test. But, they were confident that they were not over or under treating me. With a "favorable" type of cancer, I was fortunate to be given several good choices.

So...Barbe...DO YOU UNDERSTAND? AND DO THE PEOPLE PMing YOU UNDERSTAND? IF THEY DON'T, THEY ARE WELCOME TO PM ME.

I really can't understand why you don't understand that many of us have lost our patience with you??!! That is, do you consciously choose to obfuscate the true details of what initially transpired when you were diagnosed, or were you NOT given proper guideline recommendations? If what occurred was the former, than so be it. If it were the latter, then IMHO it was malpractice. So which one was it? And if you can't answer, then at the very least will you please not continue to chime in and tell newbies that your "surgeon told you to save the big guns for later." That is just plain irresponsible of you to mention. Sisters come here to get solid information. Statements like yours are not just irresponsible, but frightening to early stagers. Aren't they frightened enough? You shouldn't be giving them that kind of answer. Enough, already! Okay?

I am not declaring my choices as gospel and have never said as much so please don't twist my word again. have told you what happened to ME. There was very little info to go on and I will say for the 5th or 6th time (if anyone is even bothering to READ what im actually saying instead of thinking they know) that Oncotype and Mammoprint tests were NOT available so we had to go on suggestions and recommendations based on historical results or stats if you will. Of COURSE a tumour board reviewed my pathology as it was a very rare cancer and they needed help deciding on treatment. That is a given. Even my double masts had to be approved by the board as we don't tell surgeons what to do, they tell us our options. I WAS TOLD I COULD AVOID CHEMO BY HAVING A MASTECTOMY to get me back to work the quickest.

I am NOT telling others what to do I was merely responding to the title of this thread.

Even the poster Edwards above says her onc was "ambivalent" and felt too many women were over treated.

We're more testing options available at my diagnosis this all could have been cut and dried. But I don't understand why you keep thinking I should have had chemo????? After careful consideration about MY tumour and MY treatment choices chemo wasn't even in the mix. The only thing I hemmed and hawed over was radiation and/or Tamoxifen. That's it.

I don't understand your comment about a stage 4 er+ patient and understanding the comment. Huh?

Why do you feel your doctor's and your choices were right and mine were wrong? THAT is what I don't understand. I'm trying to understand but don't yet. And why do you blow over my links to USA websites about early stages not always needing chemo? Isn't that what all the new testing options are so great for?

diane...thanks for commenting and congrats on celebrating 5 years NED! Your eloquent point about our decisions and gospel reminded me of the late U. S. Senator Daniel Patrick Moynihan famous quote — 'You are entitled to your opinion. But you are not entitled to your own facts.' And, recently I saw author Michael Lewis interviewed by Charlie Rose. They discussed Lewis' new book (which is sitting on my coffee table), The Undoing Project based on the lives of these two researchers. Rose asked Lewis if he shared the manuscript with the surviving researcher. Lewis replied that he hadn't. But, he continued, that he had warned the researcher that when the book would be published, and he read it, he might not be pleased with some parts that he had written. But, he also told the researcher that he had hoped that he would like the book. Lewis further told Rose that people's perceptions of themselves and events may not be accurate and it is the job of a good non-fiction writer to interview as many people as necessary and read as many documents as possible to create a narrative that is as close to the truth as possible. I guess that is where the expression ""Sometimes the Truth Hurts" comes from. Sometimes we need to step back and try to piece together the truth because what we think is the truth or what we think may be a fact, ultimately mmght not be....

So, with Barbe, may she be blessed with many, many, many more years, we have a narrative that is repeated endlessly which simply should not be accepted as a plausable experience because at first blush it contains holes. And it is not until she is called out to elaborate that she attempts to fill in the holes. But even then, the holes get bigger and so, we are no closer to getting a better picture of what her experience might have actually been.

Now what is truly frustrating for those of us, like you and I, who aren't newbies, is that she, in sage mode, fails to see what is in plain sight. And that something has been told to her, in what seems to be countless times,is that it is the medical oncologist's job and not the surgeon's to tell us if we are candidates for chemo.

No one has ever admonished her for not doing chemo. We all are big girls and each of us needs to make our own decisions and we each do what we think is right for ourselves. But that doesn't mean that sisters can come here and create a false narrative that can ultimately harm a newbie's decision process or worse, harm a newbie's psyche. My heart would ache if I confused a newbie or gave them false hope or gave them wrong info. And I have seen countless sisters do that to newbies more times than I would care to count.

So, I am sorry that I hijacked this thread, but I hope when sisters read it, especially newbies it will help them thru the maze. And for those well worn sisters, I hope it will give confidence to chime in when they see fallacies and try to set the record straight.....

VR - your relentless efforts to define what the real issue is in this "discussion" continues to get lost in the translation and I don't understand why. This conversation has become a defensive tug of war instead what it was intended to be and that is for information only.

I have a friend who is a nurse at St. Jude so she is all too familiar with cancer although her patients are primarily children. She had breast cancer
and had a double MX. Coincidentally she and I have the same BS. He is one of the best in town and also one who is all about saving the breast. Obviously that isn't always possible. My friend insisted on a MX despite his objections and in fact took her concerns to the director of the West Clinic - very well known cancer clinic in town. She conferred with him and had the MX followed by chemo and radiation. Point being the MO called the shots - a point you have reiterated in your posts.

We all know there are no guarantees but I too am troubled by the "saving the big guns" statement. The big guns need to be used on the front end if applicable.

I have read many of your posts. You are very well informed and I never viewed your posts as personal attacks on anyone.
Last time I checked we were all on the same side. We were and are deluged with information about breast cancer so we need to be diligent about where to go and who to go to to get the best advice.

Every doctor we consult with throughout the process has their own expertise. Btw my MO told me in no uncertain terms she was in charge of my treatment plan.

I hope the newbies will sort through the she said she said and make their decisions accordingly.

Thanks for the congrats on the 5 year milestone! It's hard to believe it's been that long already. I truly am blessed.

Diane

1. Merry Christmas 🎄 Happy 😊 New Year! Happy holidays to all. Best wishes in your BC treatment!
2. I am always appreciative to sisters, such as VR, who share their research, experience and expertise. Much thanks, VR, for your guidance!
3. Other sisters of the "low information" type might best "back off" rather than sharing fallacies and misinformation for the benefit of newbies.
4. Good luck to OP in your early January surgery. Hugs & healing!

Sigh....I was not spreading fallacies I was only sharing my own experience.

I'm sorry you weren't able to make decisions about your own treatment plan because some of those treatments have now been proven useless. Sad really.

I filled in holes in my story when I realized what I was being questioned about. I did not do any of this blindly like a sheep. I have a brain and I used it.

Merry Christmas.

This is a scary place.

Yes, blatant misinformation. It's been discussed on multiple threads over the course of a long time.

Your ACS postings had NOTHING to do with the conversation at the time. Absolutely NO ONE said that all breast cancers get chemo. You were applying irrelevant information to the discussion and then attempting to use that to buttress your claim.

Anytime anyone uses the word "sheeple", I laugh because it says so much more about the person using the word than those they are attempting to describe.

Barbe said: "I'm sorry you weren't able to make decisions about your own treatment plan because some of those treatments have now been proven useless. Sad really."

...And there it is, I was wondering when it would show up. When people get tired of your spreading of misinformation and deliberately obfuscatory remarks, you make petty and vindictive comments about how their treatment was worthless. That's what's sad...really.

Barbe....here we go again with this tired discussion which you still seem not to grasp. You say:

"Blatant "misinformation" backed with links to the ACS? Really??? I hate when people twist others' words to match their perception of reality. If they didn't live it then it must not be true. Sheeple."

Here is the guideline that you referred to from the ACS:

"If the tumor is smaller than 1 cm (about ½ inch) across, adjuvant chemotherapy (chemo) is not usually needed. Some doctors may suggest chemo if a cancer smaller than 1 cm has any unfavorable features (such as being high-grade, hormone receptor-negative, HER2-positive, or having a high score on a gene panel such as Oncotype Dx). Adjuvant chemo is usually recommended for larger tumors."

And my reply:

"Now....you are pointing out to me what the guidelines for treatment for tumors that are LESS than 1 cm. Excellent. At least there is no disagreement with respect to the breast cancer treatment guidelines."

Did I challenge that information? No. And then I go on to say:

"Who are those guidelines written by? I will tell you. Medical Oncologists. Medical Oncologists get together and create a treatment guideline that establishes a standard of care. So, either before breast surgery or after breast surgery, a patient meets with a medical oncologist and as you quote from Cancer.Net: "Not every person diagnosed with breast cancer needs chemotherapy. Your doctor considers several factors when deciding if chemotherapy is an appropriate option...."

Am I disagreeing with you? No. The relevance of this information was that I pointed it out to YOU suggesting that both you and the OP with tumors at 1 cm or greater SHOULD BE REFERRED TO A MEDICAL ONCOLOGIST so that an informed decision could be made about whether additional systemic therapy might be needed, SO THAT THE DISEASE MIGHT NOT BE REVISITED IN THE FUTURE.

And now....what do you do? You bring up the ACS's points which are germane to the issue being challenged....and that is YOU TOLD THE ORIGINAL POSTER THAT YOUR SURGEON TOLD YOU THAT CHEMO WAS NOT NECESSARY AND TO SAVE THE BIG GUNS FOR LATER.

THAT IS THE ISSUE! IT IS BLATANTLY WRONG FOR A SURGEON TO GIVE THAT INFORMATION TO AN EARLY STAGE ER + PATIENT AND IT IS OUTRAGEOUS OF YOU TO REPEAT IT.

So what do you do when I confront your narrative...you create holes......

The holes...

You didn't disclose until challenged:

1. Your case WAS presented to a tumor board and they didn't recommend chemo.

2. You asked your surgeon what was the quickest protocol so you wouldn't miss too much work

3. You wouldn't do chemo because you saw your beloved father succumb to cancer despite doing chemo

4. You didn't know or care what the standard of care was back in 2008 when you were diagnosed despite claiming you did your own research and decided with your surgeon that the quickest protocol

would have been to do a mastectomy.

So barbe...Do you still not understand what I take exception to?

Newbies come here to ask questions about navigating their journey...and instead of providing USEFUL information, you give directions to a rabbit hole.

And now, rather than concede that it is YOU who is providing "misinformation"...why do you instead try to gain the upper hand, like a petulant child in a school yard, you call me and others names? Barbe, why must you dig deeper into the rabbit hole?

You see a surgeon to decide if you want a mastectomy or lumpectomy.

You see a medical oncologist to decide what adjuvant therapy is or is not needed.

NO SURGEON SHOULD BE TELLING AN EARLY STAGE PATIENT THAT THEY DON'T NEED CHEMOTHERAPY BUT SHOULD INSTEAD USE IT IF THEY HAVE A RECURRENCE.

AND YOU SHOULDN'T BE SAYING THAT EITHER!

FINALLY, NO ONE IS DOUBTING THAT THAT IS WHAT THE SURGEON TOLD YOU. IT JUST ISN'T THE PLACE OF THE SURGEON TO MAKE THAT RECOMMENDATION. A CHEMOTHERAPHY RECOMMENDATION IS MADE BY MEDICAL ONCOLOGISTS BASED ON THE CHARACTERISTICS OF THE TUMOR, THE PATIENT'S AGE, MENOPAUSAL STATUS, HEALTH HISTORY AND PATIENT"S WISHES. OTHER PHYSICIANS MAY MAKE SUGGESTIONS...BUT THE JOB OF THE MEDICAL ONCOLOGIST IS TO GIVE THE PATIENT THE STANDARD OF CARE GUIDELINES, AND THEN TAKE ALL OF THE OTHER INFO INTO CONSIDERATION SO A PATIENT CAN MAKE AN INFORMED CHOICE.

I got the Oncotype first and it came back as a 20 Intermediate. What a horrible middle ground! So then I got the Mammaprint as a second opinion (insurance refuses to cover it but Agendia is amazing and only bills patients $500 for the set of two test (blueprint/mammaprint). My Mammaprint came back low risk.. so I went with no chemo.

If you get a grey area Oncotype, I highly suggest getting the Mammaprint. There is no grey with that test.

MaryToU, we welcome you to the community and are sorry that this thread has become confrontational. We feel that the points have all been well made, and that we'd like to get the discussion back to a calmer tone, and greatly appreciate everyone's help.

Lisey, have there been any studies done on the accuracy of Mammaprint beyond five years? I came across one that evaluated its use over a five year period, so I wonder whether any serious study was done to look at a longer period?

If I understand correctly both Oncotype and Mammaprint are mostly used by women with Stage 1 diagnosis and most stage 1 folks have an excellent five year prognosis whether they treat it aggressively or not. So I wonder how reliable Mammaprint test results are beyond the first five years from diagnosis. We would like to know how accurate their predictions are 15, 20 and 25 years from diagnosis.

Happy New Year to all!

muska.. in some cases, as part of a study,,now,stage two up to 3 positive nodes can also have the OncotypeDx test as long as they are also ER positive and her 2 negative

muska...

Most of these studies are continuing to follow up. so in a few more years we will be able to see how well those patients did...

The issue is that with targeted treatment, this population is doing really, really, well. So regardless that the Oncotype DX got FDA approval and it is written into the NCCN guidelines, it doesn't mean the makers of the test stopped collecting data.

Mammaprint and others are doing the same...so stay tuned!

Lisey, thanks for the clarification. Gaining market share is certainly good for the company that produces the test, my question however, is about the long term accuracy. Here is the link to a recent study that I found and this was a five year study: Mammaprint Study.

As for wide Mammaprint use in Europe I am not so sure, at least this is not what this recent survey says: Mammaprint: Survey in Europe