Farewell Pluto -- Farewell LCIS

light1candle · January 2018

I found this 2017 blog post by Dr. Alan Hollingsworth that I thought was interesting food for thought and thought I would share it, in case others haven't seen it. There's more in his post, if this sample piques your interest.

https://alanhollingsworth.wordpress.com/2017/06/

In 2017, apparently the American Joint Committee on Cancer (AJCC) came out with a new 8th edition of the AJCC Cancer Staging Manual, and LCIS has been downgraded to a benign lesion. The author of this blog questions that decision:

"But is there really that much difference between LCIS and low/moderate grade DCIS? Both have approximately the same future risk for invasive breast cancer, with perhaps the only difference being the unpredictable location of that event for LCIS patients. But in terms of threat to a patient's life? Not much difference."

"Under the new system, a 1.0cm low grade DCIS will still be called Stage 0 "cancer," but a 5.0cm area of pleomorphic LCIS, far more threatening to the patient, will be nothing more than a pitiful Pluto trying to sweep clean its orbit in order to get reinstated. The breast cancer expert panel that took the most revolutionary steps ever in the new 8th edition of AJCC staging gave a nod to pleomorphic LCIS as a distinct entity in the text of their opinion, but one gets the impression that the broad array of LCIS presentations was simply too much to handle, especially when these more ominous sub-types of LCIS are relatively rare."

"It may be an oversimplification to designate all non-classical LCIS as "pleomorphic." Of course, many sites on the internet don't even bother with this basic distinction, calling all LCIS a mere "tissue risk" with a 15% chance for future breast cancer (true, if we're only talking about the next 10-15 years). But I think the pendulum swung too far, largely because so many cases of LCIS would be called ALH on review. With ALH, the "tissue risk" moniker applies, with implications indistinguishable from ADH when considering long-term estimates for developing invasive breast cancer."

"Anyway, many years ago, Dr. David Page attempted to define what made certain instances of LCIS more of a threat for invasion, and his most consistent finding was in the qualitative aspect (not so much in the amount of LCIS). That is, when acinar units are so bloated with cells that they appear to be on the verge of exploding (my description), the risk of future invasive cancer is higher, even if the finding is only present on a single slide, single focus."

"Indeed, modern reviews of natural history, such as the recent landmark effort recently by Tari King, et al ( J Clin Oncol 2015; 33:3945-3952) are more restrictive to clear-cut cases of LCIS. In Dr. King's analysis of 1,004 patients opting for surveillance after a diagnosis of LCIS at Memorial Sloan-Kettering, the calculated future risk (including development of DCIS ) was a 2% annual incidence, much higher than the 1% per year commonly quoted. In addition, the future cancer occurred on the same side as the LCIS in 63%, plus an additional 12% were bilateral. Invasive lobular cancer was the culprit in 27% of patients, disproportionate to the 5-10% of lobulars in the general population. All of this points to non-obligated precursor behavior, not simple "tissue risk" as one sees with ALH, ADH and, to a lesser extent, other proliferative pathologies."

Georgia1 · January 2018

Thanks much for posting. I was diagnosed with one ILC tumor and one mixed IDC/ILC. Removed with clean margins (yay!) but LCIS was also found during surgery. My MO stressed that Tamoxifen and AIs are really good at preventing LCIS from becoming "real cancer."

I think if only LCIS (or ALH) is found it's hard for doctors to advise much except watch and wait. The odds of it turning into ILC are pretty small. (Tho interesting that this writer says it's 2 percent instead of 1 percent).

beach2beach · January 2018

Interesting. Initially they thought I had IDC. AFter surgery it was ILC also with DCIS and LCIS. So I had 0, possibly something and definitely something. Go figure

farmerlucy · January 2018

Dr. Hollingsworth was my genetic counselor at Mercy OKC. He gave me a 50% lifetime risk, and supported the PBM. I may very well owe my life to him.

cyclegal · February 2018

Thank you for posting this blog article. I find it very interesting. While I was making my decision to BMX, my breast surgeon commented more than once about the reclassification of LCIS. In my mind, I didn't care what they called it or how they graded it, it was what it was, and I could look beyond the semantics to think about the science, how this could potentially affect my health, and my future quality of life. For others, telling them that LCIS isn't even on the cancer grading...that could have a more significant effect. I think the responsible thing to do is to explain the full behavior of LCIS to patients rather than just telling them the classification. I had a follow up with my BS the other day and discussed this article with her, and she commented that she rarely gets patients that ask these questions, which makes me think that a lot of patients don't do research beyond what their docs tell them.

Another interesting part to me is that my LCIS was characterized as florid. Until this article, I couldn't really get a straight answer from anyone about what that meant. I was often told that it just meant that there was a lot of it. However, Dr. Hollingsworth explains that florid LCIS has this "about to burst" appearance and could potentially be more prone to future invasion. Here I was thinking that it was just a lot of classic LCIS.

Marlena17 · February 2018

Hi from Nj. I have to share. I was just diagnosed with LCIS in August. ALH,sclerosing lesions,radial scars tons of micro calcifications,cysts and SUPER UNREAL DENSITY. I had a prophlayphtic masctomy Jan 24th and SO glad I did. Tamoxifen is not for all. My mother took it along with a single masctomy. I chose NOT to play Russian roulette. If The cells in the lobule get out they can travel anywhere. They are “sneaky” ( term used by my doc and radiologist friends) They won’t present as a lump. Only detectable through a biopsy. Biopsy only needed if MRI is off. Constant watching! Worries,panic! It is just like having the gene. I had a 64% chance in my lifetime of getting breast cancer. Odds I did not want to take a chance on

Jt3 · February 2018

Great article thank you for posting. Don’t have a lot of information yet on LCIS but do understand the risks.

poppyseed67 · May 2018

Thanks, Light1Candle, for sharing this blog post. It resolves the conundrum I felt when I was first told I had a diagnosis of LCIS ("not cancer") but then felt as if I were being treated as a cancer patient anyway. My pathology report did not characterize my LCIS as anything....now I am wondering if I should have another lab take a look to see if they characterize it differently.

NicolaSue · May 2018

So is there evidence that cells really can be sneaky and get out....? I was told they couldn't (but I've never quite believed that).

Lea7777 · May 2018

Poppyseed67, a second lab opinion is always a good idea. I did that with the same results, but #2 was a little more complete, making it totally worth my while. Tom Hank's wife, Rita Wilson, had been doing surveillance for LCIS. She had a biopsy that came back Pleomorphic LCIS, which is a step in the wrong direction, but not cancer. A second opinion showed it was cancer. She got a BMX and shortly after was performing on Broadway.

Not to scare you into thinking you might really have cancer, but 2 opinions are better than one, in my opinion.

The fact that cancer is found more often in the breast with the LCIS than the other one also proves "that cells really can be sneaky and get out," but it is not common. Of course LCIS is not common. NicolaSue, your intuition proved correct.

poppyseed67 · June 2018

Thanks to this post, I decided to get Dr. Hollingsworth's book, "Mammography and Early Breast Cancer Detection". I have read most of it. Seeing more of the big picture of screening (and all the controversies around it, which he explains with humor) has given me more perspective on the whole process and where we are at this point in history. At first I felt pretty shocked and frustrated that an LCIS diagnosis doesn't have a clear treatment protocol (or one that I could easily embrace!), and part of me wished I could remain blissfully ignorant. Seeing it in a broader context and from the perspectives he shares lessens the sting.

light1candle · June 2018

Hi poppyseed67. I was the original poster on this thread, and though Dr. Hollingsworth is not my doctor as he is farmerlucy's and I have never met him, I thought what he wrote was interesting. There seems to be a current trend towards "less" in breast cancer diagnosis and treatment these days -- less frequent imaging, more breast-conserving surgery, fewer mastectomies, in order to avoid over-treatment. This seems particularly true with a diagnosis of LCIS, especially with the "downgrading" of LCIS in the new 8th ed. of the AJCC Cancer Staging Manual to being considered a benign condition. Many of us have been told that this condition is "not really cancer", which perhaps it isn't, but it does indeed confer a higher risk of later invasive cancer. (I know I have also had a hard time getting a referral to an oncologist to help me make decisions about recommended hormone therapy -because I "don't really have cancer" I was told to go to my PCP for a prescription for a SERM or an AI. I am also dreading an upcoming conversation with my breast surgeon to find out more about mastectomy options, since I feel sure she's going to tell me this is not recommended for classic LCIS. But I want the information anyway, so I that I can choose what's right for me.)

Dr. Hollingsworth seems to be swimming against the current trend in this regard. He points out that over many years time, some LCIS has nearly the same statistics for progression to invasive breast cancer as DCIS. Although I haven't read his book yet, I know from reading some of his other blog posts that he is an advocate for more breast imaging, rather than less, particularly when it comes to MRIs for women who have dense breasts or who are otherwise at high risk. He is also hopeful that there will be blood tests available for early cancer detection in the near future.

So, yes, we don't want to do harm by over diagnosis or over-treatment of high risk breast conditions. But if I am the one affected by LCIS, I want the best possible imaging to catch any changes, and as much information as possible to make the best choices for myself, and to have all the appropriate prevention options available from which to choose.

farmerlucy · June 2018

Honestly - The main reason I was pushing for the PBM was that I was going broke with the high risk screening. Nearly twenty years of every year/ often every six month high risk screenings including mammos, ultrasounds, thermograms with “the best” provider (not Dr Hollingsworth’s hospital) who did not accept my great BCBS insurance. Then I had ductal bleeding which prompted two more excisional biopsies in three years, more five thousand dollar deductible payments. By then we were doing the thousand dollar MRIs.High risk BC screening is expensive. I wouldn’t wish it on anyone.

poppyseed67 · June 2018

Light1candle....sorry to hear that you are having a hard time getting referred to an oncologist. That's an extra level of nuisance you shouldn't have to deal with. I do have the option of having an MRI once a year...and, the breast nurse I met with (who went over what an MRI entails) told me that many patients she sees opt out of it. She said that catching something 6 months earlier on an MRI doesn't improve survival, plus the rate of false positives is high. And, each institution has a different view, and each person has to decide what's right for them given their tolerance for risk or uncertainty. I am still undecided. Farmerlucy, it's a shame that we are not all covered for these procedures.

light1candle · June 2018

Poppyseed67... As it turns out, I sought out a second opinion about the hormone therapy on my own and am satisfied with my decision to forgo it, at least for now. I did wrangle a referral for an MRI out of my BS, and am glad I did, though I did have a reaction to the gadolinium contrast. Because of this I’m not sure how often I would want to do them in the future, although I am all about having options. I just think my breast surgeon and I might not be the best fit. I have an appointment with her coming up later this month. I have decided to give this doctor one more chance, but if our rapport doesn’t improve I will look for someone else.

Farmerlucy... very interested in your take on how expensive this 6/12 mo. surveillance is, as I am only a year into this journey. I currently have pretty good employer health care with a low deductible, but in the next year or two I will be going on Medicare. I have begun to wonder if I need to make a decision about PBMX while I’m still working, because I don’t know if Medicare would cover a prophylactic mastectomy with just an LCIS diagnosis (no known family/genetic risk factors). One of my doctors (not the breast surgeon) said good luck getting Medicare to pay for MRI’s, so there too I am wondering if my medical choices will soon be severely limited by the constraints of Medicare. I guess I’m older than most women when diagnosed with LCIS. It doesn’t sound like you had to deal with Medicare when you had your surgery, but I am wondering if someone else in this community has had a prophylactic mastectomy or a need for breast MRIswhile on Medicare and could share their story?

MarilynIllinois · June 2018

Hi light1candle,

I had Pleomorphic LCIS found through an MRI guided biopsy. I have Medicare and Mutual of Omaha supplement plan G. About 6 years ago when I was working my doctor ordered an MRI but Blue Cross refused to pay.

Last year he tried again and Medicare covered it. (I do have a family history and a previous biopsy with atypical cells,)

Since the MRI showed my left side clear, none of the doctors mentioned a need for a prophylactic mastectomy on that side. So I am a uni now.

I have been very pleased with Medicare and Mutual of Omaha. No problems at all. I did attend a Medicare informational program at my local library and used an Insurance Broker to help me select a supplement that fit my needs.

Good luck to you!

light1candle · June 2018

Thank you, MarilynIllinois, for weighing in with your experience with Medicare and MRIs. Very interesting! Gives me some hope that changing to Medicare will not turn my healthcare choicesupside-down.

Thanks again!

Lea7777 · June 2018

MaryilynIllinois, that's encouraging!

DMB1949 · August 2018

So....my head is going to explode...lol....I had mastectomy for two areas of LCIS that became cancer,I know I’m at increased risk for the remaining breast. I know it’s slow growing,sneaky, not always found on mamo,MRI.....SO WHY oh WHY do they not advocate for PBM.....I feel like i’m missing something? HELP please! Thx,Diane

MelissaDallas · August 2018

Because the vast majority of women with LCIS do not go on to develop cancer

DMB1949 · October 2018

But mine did.....trying to figure out two things...and maybe there is not enough research done yet...why they don’t recommend Pmx....and why LCIS Mets so late....does it reoccur even if sentinel node was negative? Such a strange disease....thanks for all your input...

MelissaDallas · October 2018

LCIS doesn't metastasize, thus the "in situ." Invasive breast cancer, either ductal or lobular, can even with clear lymph nodes. Unless DCIS or even invasive cancer is big they don't usually recommend mastectomy either. They usually recommend lumpectomy

leaf · October 2018

MelissaDallas is correct.

LCIS is usually multifocal (meaning there are multiple spots of LCIS in one breast) and often bilateral (in both breasts). These multiple spots of LCIS may or may not be genetically related to other spots of LCIS in the same patient. If a person has both LCIS and (invasive breast cancer or DCIS), these may or may not be genetically related also. One spot of LCIS may or may not also have intra-lesional genetic differences within the same single spot of LCIS.

https://www.ncbi.nlm.nih.gov/pubmed/30185420

https://www.ncbi.nlm.nih.gov/pubmed/27334989

https://www.ncbi.nlm.nih.gov/pubmed/22776144

LCIS is a weird condition.

JoE777 · October 2018

I'm on original medicare with an AARP supplement. I've had an MRI on my back , a pet/Ct scan every four months-due one next month. Never had any problem with approval. Last year I was on Aetna medicare advantage and couldn't get a diagnostic mammo instead of screening mammo due to lumpectomy. Couldn't schedule bone scan when I started the pain in my hip and back so I stopped fighting them until this January when I became metastatic. Thanks Aetna. Thank God for Medicare

light1candle · October 2018

JoE777, so sorry to hear you are having to deal with metastatic breast cancer, and that the Aetna Advantage Plan treated you so badly. I was very interested to hear your Medicare stories, as I will be making my decisions about Medicare (Original Medicare Parts A, B, D, plus medigap plan OR Medicare Advantage Plan) within the next year. I had heard that the Medicare Advantage plans, while more affordable initially, can be much more limiting, especially for someone who has a serious illness, because a person has to use the doctors and hospitals within the plan approved providers. Lately I have also been hearing thatthe private Medicare Advantage plans have been shown to “ration” care because it affects the insurer’s bottom line. It seems like your experience with Aetna’s Medicare Advantage Plan backs up that claim. At least with Original Medicare, if one’s care is “standard of care” through a provider who accepts Medicare assignment, then it should pay towards those bills. And then the Medigap policies are regulated so that they have to pick up the rest of standardized amounts. Your posting makes me all the more certain that Original Medicare with a good Medigap policy is the way I want to go. Thank you for weighing in on this issue.

Farewell Pluto -- Farewell LCIS

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