Topic: lumpectomy or mastectomy - 2nd time with the Beast.

Aug 28, 2020 06:51PM Beesie wrote:

The risk of recurrence with DCIS is very much tied to the surgical margins. DCIS tends to spread out in the ducts, so even more than with invasive cancer, wide margins are important for anyone considering skipping either hormone therapy or rads, both of which reduce recurrence risk by approx. 50%.

Unfortunately there are no really good models to estimate DCIS recurrence risk. I've been hanging around here long enough to have seen an extremely wide range of estimates provided by doctors. There also seems to be a default "1% a year recurrence risk" that many patients are told, whether the diagnosis/pathology is a small low grade DCIS with wide surgical margins, or a large high grade DCIS with narrow surgical margins. Yet I recall reading a study back when I was diagnosed in 2005 that found recurrence rates as low as 3%-4% for some diagnoses of DCIS and recurrence rates as high as 50% for other diagnoses of DCIS. So 1% risk per year regardless of the pathology? I don't think so.

One model that I include often in my posts is the Van Nuys Prognostic Index. It's very high level and the middle category in particular is too broad; all other things being equal, I doubt that someone with a 1.5mm margin will have the same recurrence risk as someone with an 8.5mm margin. But overall I think this is probably the best model out there.

Here are two VNPI charts. The first provides a treatment recommendation and recurrence risk for each score (you get your score by adding your points in each of the 4 categories). The second doesn't have the same detail by score, but shows what the recurrence risk would be for the high scores if the patient chooses to have a lumpectomy rather than a MX. The recurrence risk figures in the second chart, because they blend together several scores and scenarios, don't quite match up to the recurrence risk figures in the first chart, which is another reason to apply caution in using this model. But directionally the model is pretty good and might give you some idea of the range of recurrence that you face.

Aug 28, 2020 11:59PM Beesie wrote:

I'm familiar with the MSK nomogram. I didn't mention it because I think it's crap.

Multiple studies had found that 10mm margins are ideal at minimizing recurrence risk with DCIS. Yet the MSK nomogram has just two options for margins - 2mm or greater, or less than 2mm. I can't imagine that a positive/involved margin and a 1.5mm margin will present the same risk. Nor will a 2mm margin and a 10mm margin.

The nomogram also does not include a measure of tumor size. In lieu of that, they use number of excisions, on the assumption that if someone requires more excisions, then the tumor must be larger and therefore the risk higher. That's sometimes true but certainly not always. For example, recently there was someone here who had a second excision in order to widen the surgical margins (and ended up with 10mm margins) and yet in total had an area of DCIS that was smaller than 5mm. And others who've had 4cm or 5cm tumors often end up with negative margins after just a single surgery, although the margins might only be 2mm.

I'm sure in many cases the MSK nomogram is quite accurate. But I think it may significantly over or under estimate risk for those who don't fit the average mold.** But what do I know?...I'm just a patient. I have noticed however that the MSK nomogram, although it's been around for a while, does not seem to be used/recommended by very many doctors, except those at MSK. The following study of the nomogram did not have favorable results and suggests some possible sample bias in the development of the nomogram:

Interesting that your MO suggested that your risk of recurrence with this DCIS diagnosis is higher because you had a previous diagnosis in your other breast. That's odd. Breast cancer doesn't jump from one breast to the other, so these are separate unrelated diagnoses. Your prognosis for this diagnosis is based on the pathology of this diagnosis.

I hope you are able to get a second opinion quickly. One option, if there is a delay, is to have the lumpectomy surgery. That will provide a complete picture about the diagnosis and the surgical margins. Then you can decide from there whether to move on to rads or go back to surgery for a MX. And that gives you more time to get that second opinion.

** My diagnosis included a microinvasion of IDC so I wouldn't qualify for the MSK nomogram. But ignoring that, if I was diagnosed now and had a lumpectomy with rads and endocrine therapy, rather than the MX that I had, according to the nomogram my recurrence risk would be 5% at 5 years and 7% at 10 years. With a lumpectomy alone, with no rads or endocrine therapy, my recurrence risk would be 23% and 35%. This is the risk that the nomogram calculated when I input my age at time of diagnosis (49), the fact that I do have family history, had radiologic presentation of the DCIS, the DCIS was intermediate or high grade (mine was high) with the presence of necrosis, and I had positive or close surgical margins after 2 excisions (I had a MX after a surgical biopsy (which is effectively a lumpectomy) so I don't know what my lumpectomy margins would have been but in discussing the re-excision lumpectomy option with 2 breast surgeons, all bets were that the margins would be positive - hence my decision to have the MX). With positive margins with a huge (over 7cm, multi-centric) grade 3 DCIS with necrosis, I think both the surgeons I talked to would have guaranteed that I would have a recurrence - yet the nomogram suggests a 35% recurrence risk.

Aug 29, 2020 11:30AM Beesie wrote:

I completely understand your reluctance to have a MX. It was absolutely the last thing I wanted, but my area of DCIS was simply too wide-spread; to achieve clear margins with a lumpectomy I would have ended up with no breast anyway (I didn't start with much of a breast to begin with). But it took me 2 breast surgeons and an MRI (which showed that my breast was full of stuff) to convince me that a MX was my only option. I know that some women immediately say "take them both off" but like you, that's the last thing I wanted. I had no choice. And I was only 49.

I also completely understand your focus on QOL. As an FYI, my mother was diagnosed at 80 with a small (9mm) invasive cancer. She had a lumpectomy, then a re-excision to achieve wider surgical margins, and that was it. Her doctors discussed radiation and endocrine therapy, and I had several discussions with my parents about it, and their decision was that her risk was low enough after surgery, and her QOL was more important. Her doctors were just fine with that decision, but their agreement was predicated on the fact that she'd had the re-excision and the wide surgical margins. My mother is 96 now.

If your DCIS can be removed with wide margins, and given that you are planning to have rads, which will cut your recurrence risk by 50% (there are dozens of studies that show that), I don't think it's unreasonable to consider skipping endocrine therapy at your age and with your focus on QOL. While your area of DCIS isn't small, it's not large either. It's less than an inch in size. Particularly if it's just a single focus (all the DCIS is in one spot - I had DCIS in two distinct areas) and given that it's grade 2 (any necrosis? if not, even better), I think with wide margins and rads, you can hopefully get your recurrence risk down to a percentage that you are comfortable living with. That's really what it comes down to. Which decision can you live with most easily, knowing the risks on both sides? Keep in mind that after a lumpectomy for DCIS, approx. 1/2 of the recurrences are DCIS and 1/2 are invasive cancer. You obviously want to avoid any recurrence but it's the invasive cancer recurrence that's most concerning, and that's only 1/2 of your total risk.

Let us know how it goes with the second MO.

Aug 29, 2020 05:35PM Beesie wrote:

Gee, MinusTwo, lots of women don't want to have a mastectomy. suzopedia is hardly alone or unusual in that. With my family history and personal history of breast problems, my diagnosis didn't come as a shock. The fact that I needed to have a MX was the shock, and was a lot harder for me to accept than the diagnosis itself. My mother, diagnosed at 80, would have been devastated if she'd needed to have a MX. As it was, she was very upset when she saw the words "partial mastectomy" on the insurance form for her re-excision. It was a small surgery but since she'd already had a lumpectomy, to more easily get it through insurance, her surgeon coded the operation as being a partial mastectomy. I had to talk her down from that. Her reaction is why I've never told her, just a few months later, that I had a MX - she would have been horrified.

There clearly are two camps on this. Those who run towards having a BMX and those who go there only if absolutely necessary. There's probably a third camp too, those in the middle, who may not immediately default to having a BMX but are amenable to the idea. Personally I don't understand those who are so willing to remove body parts, although after 15 years on this site, I've gained some understanding of that and certainly appreciate why it's often the right decision for many individuals.

There is no right or wrong way to think on this - it's so highly personal. Yup, it's good that we all get to make our own decisions.

Aug 31, 2020 10:23AM suzopedia wrote:

I don't know why I'm so afraid of a mastectomy. I just am. Multiple surgeries, drains, etc. It's gonna be a big decision for me. I have had radiation on the left side already so reconstruction there would be a problem from what the surgeon said. He suggested the method where they pull the muscle around from the back? Or I could take skin from somewhere else and use that skin and get an implant.

I just want to find out my chances of recurrence. I know it is really a crapshoot but my anxiety level is pretty high right now. I am looking for a therapist to go talk with. The nurses, navigators, social workers are not really good at returning phone calls. I'm babbling. I have a doctor appointment with my surgeon this morning. So I'm extra nervous.

Bessie, thanks for reminding me about the 50-50 chance that if the DCIS comes back it might only be more DCIS.

Aug 31, 2020 03:17PM Beesie wrote:

Yes, an excellent point from your surgeon that you are at less risk from this diagnosis than from your previous diagnosis. Perspective is always helpful.

Hope you get in to see a different MO, and have a good discussion.

Sep 27, 2020 05:11PM Beesie wrote:

Damn. I hate nasty surprises.

Will they want to do more surgery and get better margins for dcis? Yes, they should suggest this. With a lumpectomy (a partial MX is a lumpectomy), minimum acceptable margins for DCIS are 2mm.

Since it is now invasive will they want to remove lymph nodes? Yes. The risk of lymph node invasion witjh a microinvasion is 10% or else, but with any amount of invasive cancer, nodes should be checked. I had a microinvasion too, discovered during my excisional biopsy, and there was no question that I had to have the SNB when I had my MX surgery. I had the opinion of two breast surgeons on that.

Should I say screw it and get the MX? That's one only you can answer. Have you had an MRI? If the MRI showed no other areas of concern, then it's quite possible that you could get away with a quick and easy re-excision surgery and SNB. But given the surprises with this second diagnosis, will you feel comfortable with that, particularly if you are still considering skipping endocrine therapy?

Will I have to do chemo? No, not if you just end up with the microinvasion. Even with more invasive cancer and/or a positive node, chemo still often isn't required, but at that point HER2 status (for the invasive component, not the DCIS) would come into play. And with more invasive cancer and/or nodal involvement, skipping endocrine therapy, even after a MX, would be more of a concern to your doctors. With just a microinvasion, if you have a MX, endocrine therapy might not even be recommended (my MO discussed it with me but recommended against). With a re-excision and negative nodes, endocrine therapy will be recommended, the same as it would be after a lumpectomy for pure DCIS.

Sep 27, 2020 08:30PM Beesie wrote:

You're welcome!

For node negative, hormone positive, HER2- cancers, treatment guidelines indicate no chemo for tumors that are 5mm in size or smaller.

For tumors larger than 5mm, it's recommended that the Oncotype test (21-gene RT-PCR assay) be used to determine whether chemo would be beneficial or whether endocrine therapy alone is recommended. When you were diagnosed in 2005 (same year as me), the Oncotype test was around but was very new and not yet commonly used. Now it's critical to the chemo decision for many patients.

Even for node positive tumors, again talking specifically about hormone positive, HER2-, if 3 or fewer nodes are involved, the Oncotype test can be used to determine the aggressiveness of the cancer and the benefit from chemo.

HER2+ cancers are a whole other story - chemo is recommended even for very small tumors - pretty much anything larger than a microinvasion.

It's not uncommon that microinvasions aren't tested for HER2 status - mine wasn't either. It doesn't change the treatment. But anything larger than a microinvasion should be tested, and if a patient has several microinvasions, usually HER2 status is tested.

Sep 30, 2020 08:23AM Beesie wrote:

Ah, in my previous post I said that the nodes "should be checked" and that a re-excision "should be suggested" because I know that this doesn't always happen.

If your DCIS was grade 1, I think it would be very reasonable to not do the re-excision or check the nodes. But with grade 3 DCIS, I don't know. Certainly something to discuss with the MO and possibly get a second opinion.

My mother was diagnosed at age 80 with a 9mm invasive cancer. She needed a re-excision surgery to widen the margins. It was never suggested that this not be done because of her age. The surgery was quick and easy and no problem for her at all. And because her surgeon was able to get very wide margins with the second surgery, she & my Dad (in consultation with me) made the decision to pass on rads and endocrine therapy. It seemed to have worked out - she's 96 now.

I hope today's appointment goes well and you feel better about the discussion.