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

The standard of care is to do the Oncotype or Mammaprint on ER+, HER2- cancers. Verify it with your MO and surgeon to be sure it's done.

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.

Oncotype and Mammoprint both help to sort out who will and will not benefit from chemo. More isn't always better and chemo itself carried some inherent health risks. Only when it is determined that the benefits of chemo are likely to outweigh its risks is chemo recommended. Fortunately, we do now have tests like the Mammoprint and Oncotype that have been shown to be quite accurate in this respect. Once upon a time they seemed to think everyone with BC could benefit from chemo, now we know that isn't true.

barbe..I am not sure why you tell newbies the professional opinion of your physician that recommended that you not do chemo when you were initially diagnosed and justified not doing it by claiming you were toldthat it was best to save "the big guns for later" in the event that you recurred. From reading published guidelines BEFORE 2011 when the Oncotype Dx test was recommended, the Standard of Care was for those patients whose tumors were greater than a cm AND node positive was to recommend chemo. It seems extremely clear to me that either you or your physician were misinformed. Now, if your doctor did not recommend chemo, then he was undoubtedly recommending undertreatment AND not following established recommendations. That said, had he offered it, you would have been within the right to decline it. Having said that, no one knows that when doing the recommended standard of care will be successful in never revisiting the disease, but with an early stage diagnosis, the goal is to do the standard and hope for the best. Never and I mean NEVER in the almost 7 years that I have been diagnosed, have I ever heard or read of a physician telling an early stager what your physican told you. To be clear, I have heard of those stage IV patients with hormone sensitive tumors to do endocrine therapy until there is a progression and then do "the big guns"... but to not recommend chemo wwhen it is the standard of care is either a misunderstanding on your part or malpractice on the part of the physician. So let's be straight here and not confuse newbies...

And speaking of newbies and standard of care, I reeecommend that everyone new should register at the nccn's website and read for themselves the breast cancer treatment guidelines. Understand too, that everyone has their own risk factors and other diseases in addition to cancer that must be carefully considered before making a treatment decision.

We all make the best decision that we can at the then hope for the best. Until we die from somethhig else, none of us know if we made the right decision. And also remember, We should all expect nothing less than correct info from our physicians so we can make an informed decision.

Apologies for all the typos...my new tablet's keyboard sometimes acts funny..

barbe...you were diagnosed several years BEFORE the Oncotype DX test became standard of care in 2011.

Years before the OncotypeDX test was offered, physicians knew that for many patients who were ER + and HER 2 negative tumors, they were OVER treating their patients with chemo. BEFORE the OncotypeDX test became NCCN Standard of Care, patients who had tumors greater than 1 cm and/or had positive nodes, were recommended chemo. All of that changed in 2011 when the OncotypeDX test was written into the NCCN's Standard of Care. Standard of Care is NOT old school. It is the recommended level of treatment created by physicians. It is the basis for Western Medicine. And, if a physician doesn't offer the Standard of Care and something untoward happens to a patient who wasn't told what the Standard of Care was at the time of a person's diagnosis, the physician can potentially sued and possibly lose their medical license.

So....coming back to your original statement and your second statement, you are either contradicting yourself or muddling what conversation actually occurred between you and your doctor. And, just to be even more clear for the newbies who are reading this....the OncotypeDX test that was approved in the 2011 NCCN guidelines is now only becoming available for those patients who have up to three positive nodes.

Sooooo...I now return to your contradiction or confusion...you have repeatedly told us a number of times that your physician did not initially recommend chemo and felt that if it recurred, s/he recommended that you do it at that time. Now I will say once more that when you were initially diagnosed, there was NO OncotypeDX test to recommend. However, the standard of care prior to 2011 was that ANYONE who had a tumor larger than 1 cm was recommended chemo....and if they had positive nodes, then the standard of care reinforced that recommendation. Now, if you did your own research, whatever that research was and TOGETHER with your doctor you declined chemo AFTER being offered it BECAUSE THAT WAS THE STANDARD OF CARE, then THAT would not be disputable. What is contradictory is that you now tell us that based on YOUR research both of you reached the conclusion to NOT do chemo.

So....what exactly happened? Were you given the Standard of Care recommendation? Because if you weren't, then you have a good case, IMHO for a malpractice case....OR....were you told the standard of care and based on your research (which you just posted above) you decided that you would save the big guns for a recurrence? Whatever the case, you were either not told the standard of care or you declined it.

We can argue endlessly the merits of the standard of care. But THAT is NOT what this post is about. What it is about is that either you are confused about how you came to decline chemo when you were initially diagnosed OR you weren't informed properly about what the standard of care was the year of your diagnosis.

I sincerely hope that newbies will understand this point. Many of us will do our own research. However, when it comes to making treatment decisions, we have the right to know what the standard of care is and then decide for ourselves. Often, that decision will be based not only on the standard of care, but with the judgment from several physicians....and finally....

There are no one size fits all. As I said earlier, we all come to this journey with perhaps other diseases and different risk factors...that's why I always think it is important to work witha physician whom you trust. That makes the decision process easier.

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????? When I say the Standard of Care is outdated, I mean that patients are treated as individuals and not all painted with the same brush. My tumour was only 1 cm, so I don't understand why you keep saying 2 cm.

I hate seeing newbies chomping at the bit to get chemo when it isn't always the proper treatment for THEM. There is someone new around here that is asking why she isn't being offered chemo. Some people are telling her to get a second and third opinion! So she will go to doctor to doctor until she hears what she wants to hear - get chemo. It's not cut and dried.

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.

barbe....i have stated that the standard of care prior to 2011 when the OncotypeDX test was included recommended chemo for tumors that were a cm or greater and were node positive. Please re-read what I wrote. Others have also told you that whether or not one has a mastectomy or a lumpectomy has no bearing on whether chemo is recommended. The standard of care derives the recommendation based on the tumor's characteristics. Then, the patient's team will make a formal recommendation based on the standard of care, the patient's age and then, the patient decides what is the best protocol for themself.

So....let's review your case.....some doctor....was it a surgeon? Was it a medical oncologist?. who told you if you had a mastectomy you didn't need chemo? If it was a surgeon, then s/he was not the professional who was at liberty to make that call. And if it was a medical oncologist then ....they were just plain wrong BECAUSE IN 2008 the NCCN guidelines recommended chemo for tumors that were 1 cm or greater and/or if they had positive nodes. NOW....if you did your own research and didn't want chemo....then, so be it. You are well within your right to decline chemo.

But do you see where your initial narrative does not jive with what you are now saying? You said your physician did not recommend chemo and that s/he would save the big guns for later. That statement is completely at odds with your subsequent statements. YOU wanted the mastectomy because of the mistaken belief, or having been wrongly informed that you didn't need chemo. There was also evidence from what you tell us chemo did not extend your father's life, so you were biased against chemo. And, you tell us, hey, you never know who is going to recur...NOW that is the only thing that you say that I do not take exception to! No one knows who will recur and sometimes patients do have a mistaken belief ( not based on fact) that doing more than the standard of care (over treatment) will give them better odds. However, what is also a fact and not a belief is that UNDER treatment which you chose based on the standard of care in 2008, for whatever reason, makes the odds of recurrence greater.

Lastly, you claim you didn't know what the standard of care in Canada was in 2008 and you don't care and haven't looked back. I too do not look back nor regret the decision I made. BUT, unlike you, one of the first things I did when I was diagnosed (after crying) was dig in and do research as well. I have no idea what kind of research you did, but I looked high and low for breast cancer treatment guidelines. Today, when newbies sign on here, I repeatedly tell them to register at the NCCN's website and read the guidelines. Today, physicians are required to tell patients what guidelines exist and explain how it relates to the patient's case. Last time I checked, the same thing happens in Canada. The reason why I know is because my maternal family is Canadian and my cousin was recently treated for breast cancer at the Princess Margaret. Back in Montreal I was involved in the medical decisions of my aunt and uncle. No difference from the States

What I am saying is that I don't care what the standard of care said or didn't say in 2008! I had no intention of having chemo. And yes if one had a mastectomy then chemo didn't have to happen. The only thing in the gray area was radiation which wasn't presented at the time. With such a small tumour and no breast to take up some of the rays I probably would have declined that too. I had a rough time with rads when I recurred. Worse than what I had imagined back in 08.

I just think it's more important for the OP's sake to know that chemo isn't always necessary and some of us didn't get it. Either by choice or by neglect who cares at this point. It was 8 years ago.

MaryToU- Some of us weren't told we need chemo (or told we didn't need chemo). For me, I was given a choice after being presented with statistics. I was told what my disease free survival(DFS) at 10years would be with only my surgery, with surgery + tamoxifen, & with surgery + tamoxifen+ chemo. My case was presented to the "tumor board" & they were split on chemo. They did suggest a PET scan. As for chemo, I was told I needed to decide for myself. I did, but it was hard. I'm just throwing this out there because if you have a low(<10%?) benefit from chemo, you may have a similar experience. I'm almost 6years out from being diagnosed, things are evolving & yes, recommendations are changing. I hope you have an easier time with the decision making process than I did. Best of luck with your upcoming surgery.

edited-it's late & I goofed

Here is an excerpt 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, including:

• The type and stage of breast cancer
• How likely chemotherapy will work
• The overall goals of treatment

So basically VR you are saying that no one with a tumour less than 3 cm like the OP should bother answering?

Even the tumour board at my cancer Centre had no idea what to do with my very very rare cancer and decided to treat it as IDC in situ. Would you like my path report? The tumour board had to agree with my double mastectomy as well which they did. In fact I was Stage I until the rules changed years ago and am/was stage II. Is that perhaps your confusion?

I don't understand your anger and either do the people who are PM'ing me. My situation is as unique as yours. And the OP'S. And the next poster.

No one has to blindly accept standard of care. Some of us can think for ourselves and make decisions based upon the facts before us. No one gets their arms twisted by an oncologist to get chemo.

So basically VR you are saying that no one with a tumour less than 3 cm like the OP should bother answering?

Even the tumour board at my cancer Centre had no idea what to do with my very very rare cancer and decided to treat it as IDC in situ. Would you like my path report? The tumour board had to agree with my double mastectomy as well which they did. In fact I was Stage I until the rules changed years ago and am/was stage II. Is that perhaps your confusion?

I don't understand your anger and either do the people who are PM'ing me. My situation is as unique as yours. And the OP'S. And the next poster.

No one has to blindly accept standard of care. Some of us can think for ourselves and make decisions based upon the facts before us. No one gets their arms twisted by an oncologist to get chemo.

Nanpop, the best source for radiation guidelines would be a radiation oncologist. Have you seen one? For someone who is in a gray area it usually helps to get a second opinion or even a third one if the first two disagree.

Mary, I think you should wait till your surgical pathology report comes back before making up your mind about chemo. I hope it is going to be good for you and you won't have positive nodes, however one doesn't know for sure until after surgery. Neither imaging or tumor size are 100% guarantee of clear nodes. Take my case as an example: tiny tumor, no nodes impacted on pre-surgery imaging, however several were found to have macromets (details in my profile below.) The good thing was, I didn't have to make decisions about chemo - it was a given.

One thing that learned over the last three years, is not to plan too much ahead and take it as it comes.

Best to all.

That's what the oncologist said to me. Early stage in situ. Please remember that 8 years ago this was a very very rare beast cancer to have and they had NO idea what to do with me at first. On Google there was only 3 entries and all about the same 83 year old woman. If you can "have both" then consider me as having both! Pretty sure we all know the difference between in situ and invasive but that just tells you how little they knew. They weren't sure how to test me.

Gee I wish I had just come here so y'all could just treat me instead of my doctors! You seem to know SO much more!!!