Just diagnosed with ILC & need doctor references

cat08 · January 2009

Hi,

I was just diagnosed with ILC. I am 43. I was very shocked as only microcalcifications showed up in mammography, the stereotactic biopsy showed that the calcifications were benign, but the surgeon wanted to remove the calcifications to be safe for the possibility of future DCIS. Then, whoa! I was diagnosed with ILC. And, to make matters worse, the more I read up on it and talk with the doctors the more confusing it gets. They seem stuck in this path of Lumptectomy -> Radiation -> Estrogen blocker. Whenever I bring up masectomy, or testing the gene CDH1, I get a weird backlash as though I have spoken words of, well, blasphemy. I kid you not. To make matters worse, I feel like I want to punch someone and cry at the same time. I am getting a PhD and graduated from Ivy League universities and my questions appear to evoke a sense of "Geez, why would you ever mention masectomy. Just play nice with the path we are talking about." When I ask about survival rates, they tell me it is equivalent with masectomy versus radiation; yet, they suggest not getting masectomy. When I tell them I do not mind the thought of it if it saves my life, one doctor said, "I have never had a single woman tell me she wouldn't mind that option." "Why?" I inquire. "Because of body image issues." When I ask if women crumple and kill themselves or something from their body image post masectomy, the response is, "Why would you ever want to have a masectomy?" "To save my life or stop it from invading my other breast or ovaries or stomach."

I'm very tired as there was a lumpectomy right before the diagnosis and am still recovering. The more I read, the angrier I get because I realize my questions are relevant. Has anyone else had this experience? Could you please recommend a good surgical and medical oncologist in the Southern California region who can speak with patients in a manner that is at least respectfully informative? The other day the medical oncologist looked at me when I questioned about the efficacy of radition therapy and said, "Don't worry, you will not become radioactive. You will be able to be around other people." It made me want to scream, to cry, to wonder how in the hell anyone survives this from sheer and simple lack of dignity. They reassure me I am at one of the top breast cancer centers. Someone, could you please let me know valid information about ILC. Sources, etc... The path you followed? I am waiting for an MRI scan next week, then a sentinel lymphnoid biopsy to see if it has spread. Right now they have staged me at 1a, but they do not know what is going to happen. I would really like to know some references to research that has been done on how it spreads, why it spreads, how to test for spreading, what the percentages are with it spreading to ovaries, etc...

Thank you in advance for the simple idea of sharing this with others who know what it is like to go through this and any suggestions on having at least an adult conversation about my own body.

Anonymous · January 2009

Hi...sorry about your diagnosis, but stage 1A is very favorable. I can't help you with a Dr in your area...I'm not from your area, but others will chime in. JMO - You should wait until after the node dissection and the MRI to make any decisions. It would help to know what size the tumor was? I assume that since chemo has not been recommended that the tumor was rather small? Also, I'm assuming that since estrogen blockers were recommended, that the hormonal status is positive? Do you know what the her2 status is? It would help to know the grade too - a low grade means it was less aggressive and less likely to spread or recur. Also...there have been many studies that confirm - lump vs mast has the same prognosis. But...again... wait until after the node dis. and the MRI. I think spreading to the ovaries is not very common. Best wishes.

CrystalLocket · January 2009

I have/had ILC. I just had a double mastectomy in both breasts. ILC can extend in branches down to a single cancer cell (moves at a cellular level). We cannot test for single cancer cells yet. I opted for the double mastectomy due to that fact, that it often moves to the other breast, and that with a lumpectomy radiation and chemo are neccessary while with a mastectomy they can possibly be avoided if the nodes are clear and the oncotype is low. Perhaps it's time to see another doctor. What state are you in? My doctor said it was entirely my decision.

Seabee · January 2009

cat08--I can't help you with a local reference, though some posters here probably can, but I do share your experience of being patronized by an oncologist, and I agree that it is infuriating. In my case I merely questioned the appropriateness of an anthracycline-based chemo regimen, and got the response, "Are you an oncologist?" to which I replied, "No, but I can read." I got three local opinions, two at a center specializing in cancer treatment, one at a university medical center, and they were all the same. The reason for this uniformity is that most oncologists follow NCCN guidelines (You can acccess these online at www.NCCN.org.) for staging and treatment of breast cancer. Your situation seems to fall into a niche for which mastectomy is not normally recommended.

I also sympathize with your impatience, but unfortunately, breast cancer requires a lot of patience no matter what course of treatment you choose. Mastectomy is not a quick and easy solution. How much do you know about what it actually involves, and what the risks are? Are you considering unilateral or bilateral? Reconstruction or not? If you have not yet recovered from a lumpectomy, how long would it take you to recover from a double mast? Have you browsed the surgery thread on this site and considered some of the problems masts may involve? My mother put up with the consequences of a mastectomy for 38 years, and that was more than enough to convince me that I wanted to avoid one if at all possible. As for radiation, it was the only treatment she had available to her besides surgery, and it does reduce the risk of recurrence--one consequence which she did escape.

You obviously need a surgeon or oncologist who is a good listener, and who will discuss your diagnosis and options with you in detail after all the evidence is in. Meanwhile, when your patience is wearing thin, try reminding yourself that things could always be worse, or come here and unload again. We'll listen.

nash · January 2009

cat--if you're willing to drive to the San Diego area, I can give you the names of my oncologist and my surgeon.

You mentioned that you are favoring a mast to keep the cancer from spreading to the other breast or to the organs. Please understand that your surgical decision has no bearing on either of those issues. BC doesn't spread to the other breast--if you develop a contralateral tumor, it would be a new primary, unrelated to the first. And mets can happen whether you have a mast or lump/rads. A mast is good for is control of possible local recurrence, and even then, it's only 95% effective b/c it's imposssible to remove all breast tissue.

I'm not trying to convince you of a surgical path--I just want to make sure you have all the info so you can make a decision that's right for you.

cat08 · January 2009

Hi Nash,

Unfortunately, with ILC it is multifocal and has a 20% chance of being spotted in the other breast also if it is found in one. There seems to be differing opinions, however, as some studies show up to 40% chance if it is found in one that it will also be in the other. What confuses me is that through reading, a bilateral masectomy is often discussed with invasive lobular carcinoma patients, but it has not been open for discussion. Perhaps I simply need patience to continue going down the path. It also is very difficult to find with mammography, MRI or ultrasound, which is very scary. There are many acounts of women who have the bilateral, where the ILC could not be imaged, and after the bilateral they find that the cancer was in both breasts, it simply could not be seen.

It is very, very confusing to me.

dlb823 · January 2009

cat08 ~ I would be surprised if you didn't love the docs at UCLA as much as I and everyone else I know who has ever used them does. I live in the Palm Desert area, where we have wonderful medical facilities. But, I'll tell you, UCLA is a whole different level of care. They not only talk to you the way you want to be spoken to, but they talk to each other in the most respectful, team-approach I've ever encountered. So you totally know that you are getting the expertise and joint efforts of everyone on your team. And they don't rush you into anything because they totally understand the emotional component of what you're going through, and respect that decisions about treatment are yours, and that some of them need time to process. In addition, they are incredibly accessible. I have never had to wait more than a couple of hours for a response to an email or phone call. You're welcome to PM me for specific names and contact information, or with any questions you might have.

nash · January 2009

cat, your ILC hasn't been shown to be multifocal at this point, and the MRI should show if there is another primary in the other breast. I understand the fear of the imaging missing something, but you need to take one step at a time.

It's almost unheard of to catch ILC at Stage 1a, so try to keep in mind that you're in a good position going into this.

Anonymous · January 2009

cat---while it is true that sometimes ILC occurs in the other breast, that certainly isn't always the case. My mom had ILC many years ago--lumpectomy, radiation and tamoxifen--and is now a survivor of over 22 years without a recurrence. (I just finished my 5 years of tamox for LCIS and am still doing very well).

Anne

Seabee · January 2009

cat--it's normal to be confused at this point. But even if your tumor was multifocal, that doesn't mean it can't be removed with clean margins. Mine was, and I suspect mine was larger than yours. The 40% figure you mention sounds totally unrealistic to me, and I've read that 20% is probably exaggerated. It happens that people do have cancer or precancerous cells in both breasts, but since I've been reading posts here it seems to happen with ductal, or some conbination of ductal and lobular, most often--which figures because ductal is much more common than lobular.

Lobular can be hard to detect, but the classic variety tends to grow more slowly and in general is less aggressive than ductal. Nash has a point when she notes that you are lucky to catch it so early. And as she also points out, a mastectomy is no free pass. You sound just a bit panicky to me, so perhaps you need to take a few deep breaths, relax, and prepare yourself mentally for a process that is going to last a long time, where choices are expressed in terms of percentages and probabilities and risk versus benefit, rather than black and white absolutes.

cat08 · January 2009

I agree, I am lucky but also panicky right now. Thank you to everyone who has posted.

The best case scenario is that this is Stage 1a, but it was discovered through an off, off chance of a lumpectomy for possible DCIS. It was living near the calcifications, but they do not know if it is in other areas of my body yet. Yet, I have been meeting with radiation and medical oncologists based upon the best-case scenario. It is a lot to take in over 2 week timeframe and wait for MRI and lumpectomy. I am afraid that these tests will be wrong also especially because this was found only because I kept mentioning a pain in my breast for 3 years, yet, medical imaging could not locate anything until recently.

I appreciate so much that I found this board. I cannot tell you. Mentally, it is very frustrating to be so overwhelmed without many answers.

Here is what I know from requesting my file:

HER2 signals: 43

Total centromere 17 signals: 29

HER2/CEN-17 ratio: 1.5

HER2 gene not amplified

Nottingham grade: 7/9

Tubules: 3/3

Nuclear Atypia: 3/3

Mitoses: 1/3

Size: .5cm

Resection margins: .2 cm

Intermediate grade

Multifocal

TNM possible staging: pT1a pNX MX

These are the fields that I think are important because they are near the tissue description. But, I also read something on John Hopkins and Mayo site about testing for ADL levels in blood and also CDH1 gene. I called this morning to ask if these could be tested and am not sure what will happen or if it is important for this to happen.

Here is an article that seems to exemplify my concerns:

http://www.cancer.org/docroot/MED/content/MED_2_1x_Lobular_Breast_Cancer_Can_Be_Managed_As_Ductal_Cancer.asp

Seabee · January 2009

cat--so much the better that it was discovered by chance, since otherwise you might have something bigger and badder to deal with. It looks to me like you have a very small, grade 2 tumor that was removed with clear margins. The fact that it is multifocal is common with ILC and in this case probably doesn't mean much. The mitosis score indicates that it is slow growing, which is good. You are HER2 negative, which is also good. Chances are you are ER+, which lobular usually is, and that's good as well.

I can see why the oncologists you consulted were surprised when you mentioned mastectomy, which is a fairly drastic option and would probably be recommended only if you had a strong family history of breast cancer or some other compelling "unfavorable feature." That is no excuse for patronizing you, but breast cancer specialists are reluctant to perform a mastectomy, which necessarily involves risks, just because the patient is in a panic.

So wait till all the information is gathered, try to relax, and carefully consider the risks and benefits of all of your options before making a decision. That's my advice, for what it's worth.

Kleenex · January 2009

Hi, Cat - You're at the most hideous part of this unfun ride - determining what exactly is going on in your body and what to do about it.

You should get a copy of Dr. Susan Love's The Breast Book - some women find it too academic, but I think it would be right up your alley. It would clear up some issues for you: the difference between dealing with the tumor(s) you have (local therapy - surgery and radiation) and dealing with possible spread or future recurrence (systemic treatment, such as chemo and hormonal treatment). The type of surgery you choose can possibly determine whether you need radiation, but not always. The recommendation for chemotherapy has to do with the cancer itself - you can't have more surgery and skip chemo if it is thought to be of benefit to you.

Another book I found helpful was Surviving Breast Cancer - the author was a cancer doctor who developed breast cancer herself. She tried multiple re-excisions before finally ending up with a mastectomy - seems to me that if "take 'em off" was the ideal way to escape from breast cancer, she would have started with that.

One of the big things to read up on is lumpectomy with radiation vs mastectomy. The rate of spread and survival rates are THE SAME for both. You might have a higher rate of recurrence with a lumpectomy, but lumps in breasts don't kill people - mets (spread) does. When I was diagnosed with ILC at 45 last summer, I freaked out and thought I might do the big bilateral, because ILC was sneaky and creepy. The plastic surgeon I consulted was very gung-ho about it. But then an oncologist said to me that "people don't do that any more - your tumor is so small." Current state of the art care on the coasts, where you are and where the newest techniques arise, involves starting with lumpectomy in early stage cancers if you can do that.

You don't necessarily get to skip out on anything (other than maybe radiation) by opting for more surgery up front. If you're a major worrier and/or you've had a lot of procedures done to your breasts (multiple biopsies and scares over the years, etc.), perhaps you've had it with them and might benefit from them being gone. But if not, consider starting small. The MRI is allegedly pretty good at imaging ILC (read my biography to find out how sneaky MY ILC was). What I decided to do in your situation was to start with an attempt at lumpectomy. I'd never even had any type of surgery or anesthesia before. The smaller surgery was successful and quicker to recover from, and it allowed us to truly find out what I was dealing with and come up with a treatment plan. I've been on the lumpectomy - radiation - Tamoxifen path, and so far, so good.

I, too, am annoyed with the lack of good information on ILC. It's just not as common as IDC. I have a nice list of questions for my oncologist appointment in two weeks.

There are oncologists and other doctors out there who appreciate dealing with an intelligent woman who asks questions. Don't put up with being talked down to - but please also realize that they might be right, and you might be just fine with a lumpectomy. Sometimes, less is more, even if it's not the American way.

Coleen

cat08 · January 2009

Thank you so much Kleenex and Seabee. I think I fell into the following trap: I don't want to go through this. It truly is hell in the hallway. It helps me a lot to understand the different perspective that doctor's may be thinking about.

What is so scary is that one minute you are rolling along and the next minute you are thinking about going into early menopause, how it might creep through your body, and what will be left of your life after leave of absences, etc...

I will go slower now. Thank you for the book reference and the UCLA reference. It could be that these doctors are giving me all the information I need, but it is hard for me to know right now. You start reading and then start wondering.

I have begun to put together a nutrition regime as it is the only thing I have control over right now.

nash · January 2009

Cat--you sound a lot calmer now, and I'm glad. This is all overwhelming in the beginning, but you will settle into a new normal and things will be OK.

When I was diagnosed with PILC in 2007, I had the "advantage", if you can call it that, of my Stage IV bc mom's experience under my belt. She had been diagnosed in 2002, and had been on constant chemo since that point, so I'd already been researching her bc for five years when I got hit with mine. I did have to take a crash course in ILC, since her tumor was IDC, but I was already used to dealing with the docs and the surgery and the chemo and the scans, etc, etc. She unfortunatly died three days before I finished radiation, but if we hadn't gone through the whole experience together like we did, I think I would have had a much harder time. And I do remember how I felt when she was first diagnosed and everything was so new--it's a lot to get your mind around. And cancer takes over your life for awhile, too. It's a shock to the system.

cat08 · January 2009

Thank you Nash! You all are so terrific. I will get the MRI, the sentinel lymphnoids and start cooking great meals. Then, I will see where things are at.

cat08 · February 2009

Ok, is this normal? I spent the whole day mourning the real possibility that I will never be able to have a child. I am 43. I knew at 40 I was already in a tough spot, and I just kept thinking I would have time to work on fertility treatments starting this summer, but it is over once they tell you you have estrogen receptor cancer isn't it? Wow, this half diagnoses is a very tough thing to handle. I just wound up crying and crying. Then, I put in for a medical leave from the PhD and it felt like my whole world just crashed down. This sucks. No matter how much I'm trying to read up on things, it just looks like my life is now changed forever. This makes me really sad.

Seabee · February 2009

Breast cancer is definitely a life-changing experience, but it has made me aware of things I had not paid much (if any) attention to before. It has led me to study new material which I have found rather fascinating and forced me to reconsider my priorities. We gain as well as lose from change.

I felt sad the day I sold my son's crib and changing table, because I knew that I couldn't manage to raise two children well. But that phase of my life was over, so I moved on to the next, which has had its rewards. Whether we choose change or have it forced on us, the blocking of one path only opens up others. "Ring the bells that still can ring/Forget your perfect offering/There is a crack in everything/That's how the light gets in." Leonard Cohen

kickinit · February 2009

Cat -- so sorry you have joined the club. I was diagnosed in July first with IDC in the left breast At that time I told my surgeon I was leaning towards a double mastectomy. My reasoning was that for years I have been called back to have more pictures taken on my mammorgrams due to calcifications. Previous biopsies had been benign but that luck had run out. While discussing my options with my surgeon, she was reviewing my file and told me she really wanted to biopsy the spot on the right breast that they had questioned the year before. Sure enough two days later she gave me the news that I had ILC in the right breast. I don't have my reports with me to give you the numbers, but she told me that not only did that one spot show ILC, but my right breast was really busy with all sorts of things happening and she was totally recommending a mastectomy for the right side. She also said that ILC is hard to detect and it would have been several years before I would have felt anything. My surgeon also told me that cancer doesn't "spread" to the other breast but if it doees develop in the other breast it would be a primary site. It was unusual to have two different types of cancer. I do not regret the double mastectomy. I had several friends question why I would want to do that, but for me I needed to. I didn't want to have 2 or 3 months each year worrying about what my mammogram was going to show and were they going to identify something that was not right. My surgeon completely agreed with my thinking and hearing how your doctors have questioned your thinking as they have, I really am happy to have the doctors I have. Sorry, they are in Ohio. By finding the ILC in the right breast before surgery they were able to do the sentinal node test on both breasts which thankfully showed no involvement in the lymph nodes. I had my mastectomy on July 30 and started reconstruction immediately. Since I was naturally on the small side, I came home from the hopsital almost as big as when I went in - that really helped with my attitude and adjustment. After testing it was determined that I was Stage 2a on the left and Stage 1on the right. I had an oncotype test done on my tissue which helped my oncologist decide that I did not have to have radiation or chemotherapy. Finding both cancers early was the key. I had my final implant surgery in November. From July to December I can't believe what all I went through but now, I'm back to all my normal things. I tried to keep the best, most positive additude I could through out the whole ordeal. My goal was to get it done and get back to normal ASAP! It hasn't been without some problems, but in the big picture of things, they seem sort of small - I'm here and back to normal - just have to take medications now that I didn't have to before. I wish you luck. It sounds like you are getting good info to help you make the decision that you think is right for you. I have found this site to be very helpful - we are all sisters now.

cat08 · February 2009

HI All,

I went in for the MRI and they found something in both breasts. The radiologist coded them very small, 6mm, but they are going to do an MRI guided biopsy. This just keeps dragging on and on and I wonder after 2 months whether I will know the end result soon. Is it normal to take this long?

Cat

nash · February 2009

Cat, sometimes this stuff just takes awhile. I'm sorry you've got spots on the MRI that have to be biopsied. Ironically, I do, too. I just went in for my screening MRI a couple of weeks ago, and they found a new spot in my "good" boob. The screening MRI and the MRI guided biopsy both have to be scheduled around my period, so the biopsy isn't until 3/16. So although the onc wanted it done ASAP, the radiologist said it had to wait. Don't know if that applies to your situation or not, but my point is that sometimes the process moves at glacier speed.

trigeek · February 2009

hi Cat,

The reason why I chose bilateral mx was that I lost my trust in mammos, if they could not see the tumor until it was 2.5 cm .. how could I have been sure that they would see anything that might be brewing inthe other boob ?

Good luck with all your decisions. And ohh... I also was offered lumptectomy.. and the tumor actually turned up being multifocal the surgeon congratulated me on my decision. The other boob was collateral damage was totally clean.

CrystalLocket · February 2009

I also had a bilat mast because a very small spot appeared on the MRI in my good breast. It turned out to be focal atypical lobular hyperplasia so in other words, what I feel was a ticking time bomb. The doctors thought I was nuts for getting the bilat mast and tried to talk me into the lumpectomy. I am a worrier. I just had them both removed and I'm glad I did. Good luck.

cat08 · February 2009

Nash, Crystal and Trigeek,

First of all, Nash, I am sorry to hear that they found something. I cross fingers for you.

Well, I just dumped the place I was going to after some very, very disheartening treatment and complete loss of trust in their system. I scheduled a week at MD Andersen and I am so looking forward to just going somewhere why they can do all the tests and surgeries and diagnose me finally. It has been such a long and needless road (9 months from first ultrasound).

I do not want to lose my breasts. It feels so frightening. Nor do I want to have cancer, but I am coming to terms with it. It feels along that way that I wanted to make the right decisions, read everything I could, and just find an answer, but I am beginning to think that all I have are my instincts.

My mother is going with me and we are staying in a hotel room and instead of putting myself through any more stress, I told her we were getting the hotel room where we could cook a nice meal, go to a hot tub, and maybe even get a manicure or pedicure on the days that I do not have tests. I am beginning to realize what a bond breast cancer creates among women, and also with their mothers. I keep thinking that even with all the fertiliity concerns (I am 42), I want very much to have a daughter someday, even if through adoption as I do not think I can have children now. It is some kind of very deep thing to go through to know one's self image as a woman is intricately connected to surviving.

That is where I am now. I want to send all of you the biggest hug in the world.

Cat

nash · February 2009

Hey, Cat. I'm sorry your docs in CA are such duds, but I'm really glad to hear you're going to MDA--when are you scheduled?

And I'm so happy your mom is going with you. It is truly a bonding experience. My mom had Stage IV bc when I was diagnosed--we were on chemo together, and she died the week before I finished rads. It was intense, but I'm so glad she was there with me. Going through this next biopsy w/o her is going to be really tough, but fortunately I've got friends and family for support. Oh, and my biopsy just got moved up to 3/5, so I will have results on 3/11.

I think doing some pampering while you're in Houston is a great idea.

Kleenex · March 2009

Oh, Nash! How stressful that there is something worthy of biopsy - and that you have to WAIT so long to get it! Good luck with the waiting and I hope that the results are benign...

I'm not familiar with the connection between MRIs and periods - what's up with that? I would hate to have to plan anything based on my period these days - I just had a 41 day cycle. Tamoxifen is FUN!

nash · March 2009

LOL, Tamoxifen is a hoot, isn't it?

Hormones affect the breast MRI in that they can produce more false positive reading between ovulation and menstration. So they like to do the breast MRIs in the first part of the cycle. Some facilities will do them days 5-15 of the cycle, but my facility is really anal and will only do them days 7-10 of the cycle. Which makes for a bit of a trick when scheduling. So, anyhow, I'd had the screening MRI on day 7, which showed a new, suspicious spot. But then I had to wait for my next cycle to schedule the MRI guided biopsy, which is how I originally ended up with an appointment for 3/16.

But then lo and behold (probably thanks to the wonders of Tamoxifen) although I'm regular like a clock, every 35 days, this month I had a 24 day cycle. Hallelujah! This short a cycle hasn't happened since I was 13 years old, LOL. Anyhow, so that's the scoop on that. I'll have path back on the 11th.

Jasminn · March 2009

Cat - I just PM'd you. I'm in LA, 43 with ILC.

Just diagnosed with ILC & need doctor references

Comments

Categories