Help.. trying to avoid systemic treatments

Gosh, grace, this is such an overwhelming time isn't it? So many scary treatments. Let's break them down a little. Surgery removes the tumor. If you have a lumpectomy they also recommends radiation to get rid of any cells that may have been missed. Often you will not need radiation if you chose mastectomy (even with IDC) Your dr might tell you that a BMX is way more surgery than you need but it does increase the odds that the healthy breast won't also develop cancer. It's a trade off - extensive surgery for greater peace of mind. It's something you need to give a lot of thought to.

Part 2 of your equation is systemic treatment. Do you need it? Who knows. There is no crystal ball to tell us if cells have escaped and are patiently waiting their turn to go rogue. My MO calls hormone therapy my insurance policy.

Has your dr talked about the Oncotype test. That will give you your % chance of distant recurrence after 5 years of hormone therapy. If you forgo the endocrine therapy then that percentage basically doubles. Those numbers will help you decide if there's enough benefit for you to take the pills.

Hi Gracem. If you choose a lumpectomy, you will need radiation to reduce the risk of recurrence to the same low percentage you would achieve with a masectomy. There are several ways to do that treatment, and depending on a number of factors it could be just three weeks. There are certain parameters that would allow you to skip radiation, including advanced age and being ER+. You might check out the IDEA clinical trial at Johns Hopkins, for instance. Women with IDC, not just DCIS, are eligible for that.

Then with either a lumpectomy or a masectomy, you will want to strongly consider taking tamoxifen or an AI in pill form to reduce the risk of cancer appearing in your other breast or the rest of your body.

A double masectomy is also a choice available to you, but remember of course that it is not reversible. And you should still consider tamoxifen or an AI to avoid cancer spreading elsewhere.

I know this is a lot of information to absorb! So find a surgeon or oncologist with the ability to really listen, and answer your questions.

It sounds like you have a surgery-first treatment plan for invasive breast cancer (IDC)? If so, then you would not have to make decisions about systemic drug therapies until after your surgery, when more definitive info about your actual diagnosis will be available from the results of the pathology on surgical samples and sentinel node biopsy. After your surgery, you will have info on tumor histology (e.g., ductal, lobular, other); actual tumor size; lymph node status; ER status; PR status; and HER2 status. Certain patients with hormone receptor-positive (ER+ and/or PR+) and HER2-negative invasive breast cancer may also receive specialized tests, such as the OncotypeDX test. All of the relevant information will be used to assess your risk of distant (metastatic) recurrence, and the potential benefit of any drug treatments that are considered or recommended, which in turn should be weighed against the risks of side effects. You will have a lot more information and opportunity for discussion of this when meet with a Medical Oncologist after surgery. If you wish, you can also seek a second opinion.

Of course, surgery and lymph node biopsy sometimes change understanding of your actual or pathologic diagnosis (e.g., actual tumor size, lymph node status, other features), and accordingly may change understanding of your distant recurrence risk, and whether chemotherapy; HER2-targeted therapy (for HER-2 positive disease) and/or endocrine therapy (for hormone receptor-positive disease) are either considered or recommended.

By the way, the choice of initial local treatment (lumpectomy plus radiation or mastectomy) does not reduce your risk of distant recurrence from the existing disease. With invasive breast cancer which has been in there a while, cells that have already reached distant sites (which could lead to distant metastatic recurrence****) cannot be addressed more extensive local surgery; they can only be reached by systemic drug treatment(s).

Wishing for the best possible pathology results for you.

BarredOwl

***One's distant recurrence risk provides some insight into the odds of suffering a distant metastatic recurrence over a specific time period (e.g., 5 years or 10 years) due to the growth of any cells (undetectable micrometastases) that have reached distant sites. Note that even node-negative invasive breast cancer carries some risk of distant metastatic recurrence.

Hi aterry:

There have been a few studies recently in artificial model systems (with specific genetic changes) that provided additional support for the idea proposed by others that the acquisition of metastatic capacity by malignant cells is not necessarily a late event along the continuum of tumor formation and evolution. The link you provided goes to potential molecular and cellular mechanisms of how this may occur.

Regardless of when or how tumor cells reach distant sites, the fact that they can get there is what creates risk of suffering metastatic relapse. Certain pathologic features (e.g., smaller invasive tumor size; negative nodes) are associated with a reduced distant recurrence risk, but there is still some risk. Of course, if the estimated distant recurrence risk is very small, the benefits of certain treatments may not outweigh the risks. A case-specific risk/benefit analysis is required and individual risk tolerance is also important.

BarredOwl

For Her2+ cancers, they often do chemo first and then surgery. That is probably why they are checking you for that. Needle seeding is "rare" according to my surgeon, but it did happen to me, and it wreaked havoc. That is not the norm though - in most cases, a lumpectomy with radiation would clean that up, or a mastectomy by itself would clean that up.

I know it is a lot to absorb - when I was first diagnosed I had always been a "natural" sort of person, and never had any major health problems. Modern medicine is far from perfect, but it is the best we have against this cancer beast. I thought I could never do cancer treatment, but I did, and I am still doing it. You might find you can do what you never thought you could, and that it will be ok.

As for surfing, I too am a surfer, and I had both a lumpectomy and a mastectomy. You will probably have a much easier time surfing after a lumpectomy, or even after a mastectomy with no reconstruction. However, there are others here who still surf after a mastectomy and reconstruction. I had a right mastectomy and started reconstruction, and while I think I could surf, my right pectoral muscle kind of sucks now. I might go flat or half-flat because my cancer has now come back in the reconstruction. I'm dreaming of surfing again without this weird foreign object lodged under my pec muscle :-) Keep your spirits up, you'll find your way!