have some decisions to make, need some input

chatham

I am writing on behalf of my wife, She is 54 yr old in excellent health and Chinese so her understanding of technical English is somewhat limited and so here I am. 3 years ago they found an issue in a mammogram in her right breast and decided to do a biopsy which came back negative. Then last fall on her annual mammogram they found more issues in her right breast and it was decided that a lumpectomy was necessary. Pathology came back and it was found that she had DCIS. So now the doctor is suggesting three options, (1) another lumpectomy to remove all of the tissue in question followed by radiation and tamoxifen, (2) a mastectomy and tamoxifen, (3) a double mastectomy and tamoxifen. Reconstruction surgery is being considered but that is a whole other issue in itself. We first need to address the issue, solve it and then deal with the outcome. I have read as much as I can on this issue.

From what I have read, very few Asian women have breast cancer or develop breast cancer. Having DCIS has a low percentage of developing into cancer. By having another lumpectomy it only reduces that risk by 5% with or without radiation therapy. One study shows that only a rate of 3.3% of DCIS might develop into cancer which isnt much higher then the general population.

I feel the need to explain the health care system in China a bit here so you understand some of my wife's concerns. China has a socialist health care system basically. The doctors in China make very little money so there is a system in which you pay them a "tip" under the table to make sure the surgery goes well. If you dont pay them "mistakes" happen, scary but its true. I could give you many examples but I dont think that its necessary here. Additionally, they make more money by making sure they do more things, so they tell you, you must do this and that. Money drives many of the decisions and not necessarily care. So she has these concerns even though I tell her that treatment here in the US is care and outcome based.

We are trying to determine the risk versus the reward for treatment and the side effects of that treatment and would appreciate anyone else's experience.

Thank you

Beesie

chatham,

I'm sorry that you and your wife find yourself in this situation. It's always confusing to enter the new world of breast cancer.

I think one of things you are doing is mixing apples and oranges. You can't look at generalized studies about DCIS and assume that they apply to your wife's situation, now that she has been diagnosed. So my first suggestion is that you read the following thread, which the Moderators have pinned to the top of the DCIS Forum:

Topic: A layperson's guide to DCIS

Now, specifically, to your comments and questions, you said "Having DCIS has a low percentage of developing into cancer." I don't know where you got that information but it's not necessarily true. Here are some facts to consider.

• For someone who has DCIS, if they have a recurrence (i.e. a redevelopment of the same cancer in the same location of the breast, caused by some DCIS cells that remained after treatment), 50% of the time this recurrence will still be DCIS, but 50% of the time the recurrence won't be found until the cells have evolved to become an invasive cancer. What this risk is for each individual is different, depending on her specific diagnosis. For example, if someone has a small single focus of low grade DCIS, and has wide surgical margins after a lumpectomy, the risk of recurrence might only be 6%. This means a 3% risk of a DCIS recurrence and a 3% risk of an IDC (invasive breast cancer) recurrence. However if someone has a large multi-focal high grade DCIS, and has narrow surgical margins after a lumpectomy, the risk of recurrence, even after radiation, could be 30%. This would mean a 15% risk of a DCIS recurrence and a 15% risk of an IDC recurrence. After a mastectomy, usually the risk of recurrence is lower, generally only 1% - 2% in total. But if the surgical margins are close, and if the DCIS is high grade, the risk of recurrence could be as high as 15%.

• For anyone diagnosed with breast cancer, including DCIS (by some definitions DCIS is breast cancer, by other definitions it is a pre-cancer), the risk to develop a new primary cancer in either breast is about double that of the general population. This new cancer wouldn't be a recurrence of the previous DCIS, but a totally separate breast cancer. The average 54 year old faces approx. a 9.5% chance of being diagnosed with breast cancer over the rest of her remaining lifetime. For anyone who has previously had either invasive cancer or DCIS, the risk is about double that figure. Of course this varies by individual based on genetics, family history and other personal factors.

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"By having another lumpectomy it only reduces that risk by 5% with or without radiation therapy." I don't know where you got this information. Was it from your wife's doctors or is this something you read?

• How much a lumpectomy will reduce your wife's risk depends on her diagnosis (size, focality, grade of the DCIS) and whether it is believed that some DCIS still remains in her breast after the excisional biopsy (the surgery she had, because it was for diagnosis purposes, while similar to a lumpectomy, is more correctly called a surgical or excisional biopsy).

• Dozens of studies over decades have shown that radiation reduces recurrence risk after a lumpectomy by ~50%.

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"One study shows that only a rate of 3.3% of DCIS might develop into cancer which isnt much higher then the general population." This is not consistent with what most studies have found.

• You might want to read this: Controversies in the Treatment of DCIS

• Here are some excerpts:

• "These studies demonstrate that the risk of progression to invasive
  carcinoma in patients with unrecognized DCIS that underwent "benign"
  surgical excisional biopsy is substantial (39%–53%). Further, these
  rates may be an underestimate of the risk of progression given that the
  undiagnosed DCIS may have been completely excised in at least some
  cases. Furthermore, the presence of low-grade histology in these
  patients was not predictive of a benign clinical course."

• "the meta-analysis of the randomized trials demonstrated that in patients treated with lumpectomy alone, the 10-year risk of an IBTR (in-breast tumor recurrence) was markedly higher in patients with positive vs. negative margins (43.8% vs. 26.0%); this was also true in patients receiving RT with a 10-year IBTR rate of 24.2% vs. 12.0% in patients with positive vs. negative margins"

--

The objective in treating DCIS is to reduce the risk that invasive cancer might develop. Surgery, with the achievement of wide clean surgical margins, is the first and most successful way to do this. For those who have a lumpectomy, and sometimes those who have a mastectomy (MX) with close surgical margins, radiation often follows, as a way to mop up any rogue DCIS that might be left after surgery. Since radiation on average kills off only about 50% of the remaining rogue DCIS cells, Tamoxifen often follows. Tamoxifen kills off ~50% of what remains after surgery or surgery/radiation. Because of the nature of DCIS - it is contained within the narrow milk ducts and as it multiplies, it doesn't form a lump (as invasive cancer would) but instead spreads within the ducts - it's not uncommon for DCIS to be widespread or skip in the duct; this means that having wide surgical margins is actually more important for DCIS than invasive cancer and this is why treatment after surgery is usually recommended.

In terms of normal treatment protocol, it sounds as though your wife's doctors may be a bit more aggressive than necessary. The options usually are:

1. Lumpectomy + Rads + Tamoxifen
2. Mastectomy, with or without Tamoxifen - After a MX, if the surgical margins are clean, the risk of recurrence is
   usually low enough (1% - 2%) that Tamoxifen is not required. The reason for
   prescribing Tamoxifen after a single MX is more as protection for the
   remaining breast. To my point above, anyone who's had DCIS faces a higher than average to
   develop a new breast cancer - Tamoxifen can reduce this risk by as much
   as 50% - 60%. But taking Tamoxifen is certainly optional and many choose not to take it.
3. Bilateral (double) Mastectomy - After a BMX (bilateral or double MX) for DCIS, assuming good surgical margins, Tamoxifen is not required because both the risk of recurrence and the risk to develop a new breast cancer is in the range of 1% to 2%.

.

Here are screenshots from the NCCN Treatment Guidelines for Physicians. These are the gold standard treatment guidelines used by most doctors in North America:

Certainly there are situations where DCIS is over-treated, and this is a valid concern on the part of the medical community. Someone with a tiny low grade DCIS probably doesn't need all the big guns to successfully treatment her DCIS. But all DCIS is not the same. Some diagnoses are low risk, and other diagnoses are high risk. I don't know anything about your wife's diagnosis, so I don't know which camp she falls into, or if she falls somewhere in between. What I can tell you is that the risk of under-treating an aggressive DCIS can be far worse than the risk of over-treating an indolent DCIS. Under-treating an aggressive DCIS can lead to a diagnosis of invasive cancer, which in turn might lead to the need for much more toxic and debilitating treatments, such as chemo. And in rare cases (and I can give you examples from this site), it can lead to the development of a metastatic cancer.

Beesie

Chatham, that 3.3% figure you mentioned seemed familiar to me. Now I've placed it. There was a study a few years back that showed that 3.3% of women diagnosed with DCIS died of breast cancer within 20 years. This might not be the study you were referring to, but if it is, you should know that the study was significantly misinterpreted in most of the articles written about it. Many writers took those results to mean that because the rate of death from breast cancer for those never diagnosed with DCIS is not that different than the rate of death for those who've had DCIS, this means that DCIS does not need to be treated.

That is not at all how the authors of the study see it. Here is what the authors of the study have to say:

Wherein the authors attempt to minimize the confusion generated by their study "Breast cancer mortality after a diagnosis of ductal carcinoma in situ" by several commentators who disagree with them and a few who don't: a qualitative study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5576464/

chatham

Bessie, very informative thank you

Kim0215

Good morning and I am sorry to hear of your wife's diagnosis. I am assuming you are actually in China since you explained the way the socialist healthcare works? I am going through this exact thing right now. I was Stage Zero Grade 2 and had my lumpectomy on 6/17 (two weeks ago today). As Beesie gave you in her reply, that is the stand treatment however I am electing to absolutely NOT do the tamoxifen and am awaiting the results of a genome test called DCISonRT that I asked for to help determine if radiation treatment is beneficial for my DNA or if I can skip it They use the Tissue from the lumpectomy to test.
My doctors here have been very good in giving me info but not dictating my course of action. There are also clinical trials that your wife could do if she were here but maybe they don't exist in China. Worth a look?

Everything I have read is that while DCIS is overtreated, because it is still cancer, getting it out of the body is a smart move because it doesn't spread and right now is treatable. Once it breaks through the duct wall and becomes invasive it can be a different conversation if it hits the lymph nodes. The clinical trials here do “active monitoring" vs standard treatment and I was going to do that but when my doc told me my cells had “central necrosis" and at Grade 2 made her nervous I opted for the lumpectomy. I didn't want to constantly worry (I probably still will) but I know with the lumpectomy done and having gotten clean margins, it's gone. I'm not sure I want to do the radiation because I'm not one to put poison on my body and my radiologist said based on my type, I have a 16% chance of it recurring in 10 years. I see it as an 84% chance that it WON'T and I am an optimist.

Bottom line is every persons situation is different and if you don't have a good healthcare system that would certainly weigh on the decision. I wish you the best and encourage you to interview different doctors if that is a possiblity before you decide. I didn't like my first referral at all (COVID didnt help- the referral came from the radiologist that did the biopsy, not my gyn that I love). She referred me to a different surgeon and her I trusted. Good guidance for me and the ability to make the best choice for me and my family was important to me so I didn't make decisions on fear. Will keep you both in my prayers