New Diagnosis--scared and don't know what to do

Lillibelle

Hello all-I'm 50, and was just diagnosed with ILC last week. I've been followed for 20(!) years by a doctor and had a couple of cysts or fibroadenomas biopsied all normal. Last week he biopsied a 1 cm tumor in right breast that is ILC, low grade. He told me lumpectomy + radiation would probably be the ticket, but I needed an MRI to make sure no nodes involved.

MRI Monday that showed no nodal involvement (yay), but did show two more areas that "lit up" in a similar manner to the 1 cm we knew about. So now he has put mastectomy on the table, since he is assuming these are also ILC areas given its tendency to spread. But he also says lumpectomy+radiation still also on table. He wont tell me one over the other --wants me to make the call.

He is preventive/diagnostic doc only, no longer does surgery. I meet with the surgeon today and am hoping to get more info in order to make a decision.

I am married in a stable marriage, husband super supportive of whatever I decide. I have 8 y/o twins through IVF and they both have some special needs. I also have an elderly mom who is becoming more of a third special needs child that I can't talk to about this.

Help please!!

Lillibelle

Anonymous

Oh, dear. We've all been in your shoes and scared--terrified. First, take heart that your ILC is low grade. I hung onto my status with everything I had since I needed something positive to believe in. I reminded myself of my grade 1 status (although it was high grade 1) and still do, actually

Next, find an oncologist that specializes in breast cancer and if you can, ask them how familiar they are with ILC--since it's less common than IDC and sometimes requires a different approach, although from what you've been told, the advice for treatment seems about right.

I found that once I felt I had found the best oncologist and had trust in my surgeon--established rappoir with them, felt like they listened to me, and that they had some compassion as well as expertise--I felt so much better about everything.

You are in the first stages of overwhelm. I found that once I had my mind wrapped around the tx that was recommended and was best for me, I felt better. As for MX vs. radiation and lumpectomy, and ILC--your uneasiness about spreading is understandable. I had lumpectomy, radiation, and then finally had a BMX and reconstruction because ILC is so hard to detect on scans ( I had five clear mammos in 5 years and found the lump through a random self-exam). I wanted to give myself every opp for eradicating it from my body. I don't miss my real breasts and feel a bit more relaxed believing that I got out as much questionable tissue through my BMX.

Know that we want everything to happen asap because we want the fear to go away asap, but treatment decisions and the tx itself will take a while. Even with that, it's all temporary--doesn't last forever.

Do you have a community or church family that can help you with your mom and children if you need? It's quite possible you will only need a bit more help till you recover from whatever tx you decide to do. I found that I did not have to quit my full-time teaching position at my university, nor did I ever even have to have someone teach for me. I didn't feel half as bad as I thought I would in spite of all the tests, surgeries and tx.

Are you particularly afraid about something? Can you share a bit more about that?

We're here! And we can help! Hugs

Claire in AZ

Lillibelle

Thanks Claire. I'm just an anxious person in general, is where this fear is coming from. Anxiety over a cluster of breast cancers in my office 20 years ago is what sent me to get a baseline mammo at 28 or so that discovered my fibrocystic and calcification filled breasts. My boss had a BMX due to DCIS and it just completely horrified me. Our relationship was close and so I saw everything and it scared the crap out of me. I was still pretty young though.

I went through many, many, many invasive procedures to get my twins (they are actually from an egg donor), so I know how to warrior up and deal with stuff.

My in-laws are in town, as is my brother, and they will be supportive. My workplace is too.

I think it's just this unknown time where I don't know what the next step is. Do most ILC's end up with BMX's?

Moderators

Welcome to the community Lillibelle. We are so glad that you reached out here. We hope that you will find the support and information that you need to keep moving forward. Here are some links to information on our site about Treatments for ILC and Questions for the Surgeon. Good luck with your appointment today. Claire offers so much helpful information. We know that this community will be here to support you through this. Keep us posted. The Mods

momand2kids

Hi

I am an ILC who had a lumpectomy, chemo and radiation--- almost 7 years ago... Surgeons will often let you decide if there is no medical reason to do a mastectomy. Ask the surgeon "what would you suggest if you were my sister"..... always a good question. I had a very discrete-all in one place tumor and they were able to get it out with good margins and no nodes. I decided on chemo based on my oncotype score which was in the "gray area".... also asked surgeon and onc what treatment they would recommend if I was their sister... they both said short round of chemo--I have a great deal of respect for them, so I went forward. I had a 7 and 12 year old at the time.... it is all a distant memory now-but I was able to work through most of it---- you will do what you have to do-but you must have a medical team that you trust and is skilled in breast cancer. So many things change so quickly in bc, you want people who have kept up.

MsPharoah

Lilliebelle, Hi! and big hugs because this is the hardest time and the decisions you have to make are difficult. I also was diagnosed with ILC and had an MRI and had something else "light up". But my surgeon ordered a biopsy and it turned out to be non-cancerous. We moved forward with a lumpectomy and I am happy with my decision. I think your surgeon is jumping the gun putting mastectomy on the table without a biopsy...Just my opinion.

Get a second opinion if you have to so you know all your surgical options. And if you decide on mastectomy, make sure you explore your reconstruction options as well.

MsP

jojo9999

Lillebell, will you have a sentinel lymph node biopsy beforehand? I had 2mm ILC in one node that was not seen on ultrasound or MRI ("clinically node negative"). I had the SLN biopsy done 5 days before BMX. Prior to the biopsy, I was told MX and tamoxifen was the likely treatment, but then the + node found on biopsy added radiation to the mix.

Lillibelle

Surgeon today will do core biopsies on other two spots that lit up. If they are positive she thinks MX necessary b/c of their spread across breast. I'm OK with that.

She will do sentinel node biopsies but I'm not sure if at same time?

Anonymous

Hi Lillibelle,

You and I are the same age, and I was diagnosed with ILC one year ago this month. I was on a watch for several years prior to my diagnosis because of calcifications in my left breast, but for the first time, a problem came up on the right. I had two biopsies done on my right breast - one of which was ILC, and the other benign. I opted for lumpectomy followed by rads, and am now 9 months into a 5-year course of tamoxifen.

I agree with the others that this is the hardest time...getting biopsies, waiting for results, deciding on your course of treatment. There is a lot to process, all at once. I'm grateful that my radiologist, who had been reviewing my images for years and discovered the ILC, took the time to explain that ILC was less common, presented differently, and gave me the names of very experienced breast surgeons and ROs in the area.

Because I only had the one spot of ILC, I went with lumpectomy, knowing full well that if we didn't get clear margins, then more extensive surgery would be on the table. I was very fortunate that we got clear margins and no lymph involvement. The only surprise, really, was that they thought it was about 1 cm based on the imaging, and turned out to be 2 cm.

Looking back on the last year, I'm comfortable with the decisions I made and I don't second guess myself. But what works for one person isn't necessarily what someone else might decide. I've learned it's very individual. Wishing you all the best as you make your way through this experience. We're here to offer support!

Holeinone

Lilli, I knew I had at least one node with Cancer, because of a punch Biopsy, I still chose the lumpie.

My nodes were filled, I was told after sx. It's kinda crapshoot. My surgeon was pro lumpie, ( for most cases ). His theroy was, the stats are the same, get back to living faster, less surgery. Some of those reconstructions are tough.

Bellis

Hi Lillebelle

I also had a lumpectomy and 2 sentinel nodes removed. It was a very easy surgery with absolutly no pain and a very nice cosmetic result. My lump was 1.6 cm. In Denmark we don't do oncotest and almost everyone younger than 60 years old are considered at risk, so I did receive chemo and it was very helpful that the surgery had been so easy.

Best wishes

Anonymous

I will only share what I know and what my surgeon and oncologist told me: radiation and lumpectomy are supposed to carry the same tx value as bmx, no rads. I had all tx--lumpectomy, chemo, rads, BMX, and now anti-hormonal meds- because ILC can tend (say it again, can tend--not will tend) to be multi-focal, sometimes appearing in another breast later. Meaning, I might not find it again till it's too late since my ILC hid from 5 "clear" mammos in 5 years. I also had VERY dense breasts, making it even harder to get a good scan that highlights problem areas.

After I had my BMX, my surgeon went over the pathology in both breasts/tissue. Post surgery proved mild hyperplasia, ILC, in the "good" breast. He said it was good I went with a BMX because that hyperplasia never showed up on the MRIs, US, and other scans I've had.

So in my case, I was overwhelmingly relieved that I removed as much tissue as I could in both breasts when I did. However, my doc said if c returns, it will probably be elsewhere. But I went with BMX because if it does return--check my high # of + nodes and you'll see what I live with every day--I want to be able to at least claim I did EVERYTHING I could to protect myself from a return when I had the chance. That is my unique story; not everyone will do what I do.

I read early on this forum that we only care about whether a statistic is 100% or 0%. Unfortunately we never get either with our dx and tx.

Claire

MsPharoah

All things being equal (meaning that your doctor offers either lumpectomy or mastectomy), I think the density of ones breasts is a big game changer. I do not have dense breasts, but had that been the case, I would have opted for BMX. Dense breasts make it harder to find all types of breast cancer, not just ILC.

MsP

Lillibelle

I have pretty dense breasts. New surgeon was feeling mine and said "Wow, I don't know how he found this. This feels like a normal exam." I told her he only found it on sonogram, since I had normal mammogram.

wallycat

I am so sorry you are joining the club no one wants to be in.

I was 1 month shy of 50 as well.....and tend to be hyper about health stuff, so I totally get where you are coming from.

I'm not sure you have all the facts to make a decision yet. A biopsy will not tell you how large OR SMALL your tumor is. Only a lumpectomy can do that. Scans can give ballparks, but they don't know everything. Everyone thought that I would have a 7mm tumor and low grade with biopsy, but turned to mid-grade and 1.8 after lumpectomy. My twin sister had an area light up on her breast and a biopsy revealed NO cancer. I know some gals here were told the tumor would be larger than it actually ended up being. My breast surgeon learned a valuable lesson when I "opened his eyes" to the fact that even his claim of 99% accuracy with MRI, it is not 100% and he swallowed his pride several times during my visits with him.

It is REALLY hard not to go to the ugly places.

Find a team you trust. Make your decisions and then don't look back. New studies, new procedures, new drugs....but the confidence of your decisions should help guide you along with that good team you trust and allow them to carry some of the burden of worry.
Best to you. This place was a life saver for me.
Also, don't forget to start reading the happy threads here....survivors that have continued to come here and share is life changing.

Lillibelle

Honestly I am leaning towards just preparing myself for a BMX. I am sick of worrying. I just want to be around for my kids. It completely freaks me out that I have what amounts to invasive, invisible cancer!

Girl53

Lillibelle: Sorry to meet you under these circumstances, but glad we're both here. I was just dx'd with ILC, too -- I'm 53 -- and on my way in for MRI tomorrow to see if any other spots of cancer, and then will have SNB in a week or two, I think. Preventive double mastectomy is also on table for me since I have LCIS and a very strong family history. My doc also won't tell me which treatment would be better, but she says PBM not an unreasonable option. Seeking other opinions.

I am a twin, like your children and like Wallycat. Great stuff!

Lilli, I am also concerned about ability to be there with/for loved ones in future (though I am not a mom). I get where you're coming from. Running to appointment but will be back. Thinking of you...you are not alone!

wallycat

I opted for BMX for the same reasons you mentioned. I did not want to monitor every 6 months and I did not want to think about it.
BMX does not mean we cannot get another BC diagnoses or a recurrence, but it certainly lowers the odds, IMHO.

I have not regretted my decision. My doctors thought it was overkill, suggesting lumpectomy and rads, but my choice gave me peace of mind.

Don't forget that you can ask for anxiety meds short term, to get you through the initially horrible stress and inability to sleep. It feels like the end of the world when you hear "invasive cancer." I and many here know it only too well....but new advances give us hope and many of us are still here and enjoying a great life---once the shock wears off. May it be so for you.

Anonymous

Ditto to Wallycat's post. Overkill according to several medical friends/team I talked to, but I wanted it all. Screw cancer.

I too used xanax--had a nice surgeon who didn't bat an eye when he went over the pathology with me post-lumpectomy, and my MO kept renewing the RX for me. I still use half a .25 mg. tab from time to time. It just takes the edge off, without doping me up.

I have a regular check up-oncology--this coming Wed and after all this time, they STILL freak me out. I'll probably wind up crying in the waiting room before the exam. It's just part of the way I cope. I'm not ashamed that I have PTSD from this, and am just happy I'm still here.

Claire

Lillibelle

Yes, I am very familiar with xanax! I have medical related PTSD from my years of infertility--except I couldn't use anti-anxiety meds b/c of the possibility of pregnancy--so it was in some ways worse. I've just decided to go back on Lexapro, which worked well for me about 10 years or so ago.

614

I was diagnosed with pleomorphic ILC, PLCIS in 2 lumps, and invasive tubular carcinoma in my left breast.  I had a double lumpectomy and radiation but no chemo.  I had an oophorectomy because I was premenopausal at the time that I was diagnosed and I needed to be medically induced into menopause so that I could take AI's (Arimidex/Anastrazole).  I feel extraordinarily lucky that my ILC and LCIS was diagnosed. 

I believe that the only reason that my bc was found is because it grew in a lump that was previously biopsied.  Since the lump changed, the cancer was detected.  The second lump was also previously biopsied too.  This lump was palpable but not detected on the mammo or sono.  It came back benign twice but actually was malignant and also contained PLCIS as well.  Again, I am so fortunate that my radiologist found my bc.  All of my doctors really saved my life due to their concern, diligence, knowledge, and skills.

I hope that your decision is an easy one for you.  I went for to several MO's for their opinions and I now have the absolute best MO.  Trusting your doctor is crucial. 

Although I now have a suspicious 1.8cm linear non-mass enhancement with rapid washin washout kinetics, I am still glad that I chose to have a double lumpectomy rather than a double mastectomy.  This area was not able to be biopsied in May 2015 so I am on a 6 month wait and watch protocol.  I will know more in November 2015 when I have my next round of MRI, Mammo, and Sono. 

Good luck to everyone.

vlnrph

Hi Lilli! So much to think about. Do be aware that, should tamoxifen be in your future, common SSRI medications like Lexapro/escitalopram have a significant metabolic interaction with it and you may need to transition to a different antidepressant at some point. In case you are already post-menopausal, no problem (aromatase inhibitors become an option if the cancer is positive for estrogen receptors): hope you can relax over the weekend.

Girl53

All: Just got back from a baby shower (not an easy gig with a new BC diagnosis) and have had a chance to read more postings in on ILC board. I see that ladies here have made different choices based on their individual medical situations.

Had MRI and mammo yesterday and great talk with radiologist. She said she has patients with less disease than mine who have opted for PBM. She counseled me well on from whom I should get second opinion (oncologists) and whom I should NOT see to discuss plastic surgery (a talented but young and inexperienced doctor recommended to me by BS). She urged me to see MO soon...not putting it off because I'm considering BPM.

I don't know if I'm understanding situation correctly: I have small ILC; LCIS grade II; dense tissue; and a very strong family history. It makes me feel sick to think about having a PBM, but on the other hand, I don't think I can live with risk of recurrence, contralateral occurrence, etc., of a hard-to-spot cancer type.

*I think doc mentioned SNB. Do they check for nodal involvement first on the MRI? Do they do SNB on everyone diagnosed with an invasive cancer, no matter how small and low grade?

*Is it possible an oncologist would recommend radiation and/or tamoxifen, even if I'm leaning toward BPM? Doesn't radiation make BPM trickier or create a need to delay it?

Lillibelle, hope you're doing okay this weekend. Hugs to all.

jojo9999

Yes, I believe everyone with invasive cancer gets a SLN biopsy on the caner side, assuming the MRI shows the other side to be free of cancer. As for radiation, depends on the nodes. If all clear, then you probably wouldnt need it unless a lumpectomy is an option. I believe all lumpectomies get radiation.

Anonymous

RE: rads: I had to wait a year after rads for my skin to recover. But after I did--and I amazed my plastic surgeon by the way I healed--I was good to go. Super-happy with the results--as happy as I can be not having breast tissue or feeling in my breasts or nipples now. It's a trade off--would I have worried the rest of my life had I kept my breast tissue? Yes, I would have, so I gave it up and as you can read in my previous post, glad I did, since there was some pre-cancerous stuff going on in the good breast that didn't appear on any scans. And having dense breast tissue was the second fear for me. See link. I think I'm as angry about my mammos reporting dense breast tissue but not telling me how much more at risk I was, and not recommending a follow-up MRI (which my insurance WOULD have paid for).

http://www.breast-cancer-research.com/content/15/4...

I don't know what you mean when you refer to PBM but I'm assuming you mean BMX--bi-lateral mastectomy? So many terms and acronyms flew around this board when I first got on it that I was lost. But maybe I'm missing something.

BarredOwl

Hi Girl53:

You asked: *Is it possible an oncologist would recommend radiation and/or tamoxifen, even if I'm leaning toward BPM? Doesn't radiation make BPM trickier or create a need to delay it?

I think you need to inform your treatment team that you are considering bilateral mastectomy, and then ask them to lay out your options for you and the risks and benefits of each.

Usually, a person elects (i) lumpectomy (or has an excisional biopsy), with or without radiation, and optional endocrine therapy (if ER+ and/or PR+); or (ii) mastectomy, and optional endocrine therapy. Sometimes, a person who receives mastectomy has findings that do lead to a course of radiation, but often radiation can be avoided with mastectomy. Radiation can sometimes have long term impacts (e.g., heart, lung). Radiation may also limit or foreclose (?) the use of radiation of the same area in the future (e.g., in case of local recurrence, which can happen even with mastectomy). Radiation can also affect the ability of skin to heal and can impact reconstruction, so it may be preferable to reach a mastectomy decision (if that is what you ultimately want) before receiving any radiation, and thereby, possibly avoid it and its side effects entirely. Please consult your treatment team about all of this to confirm it is accurate.

Btw, if you have ILC I believe it would not technically be a prophylactic bilateral mastectomy, but (a) choosing mastectomy (versus lumpectomy) on the ILC affected side, and (b) choosing contralateral prophylactic mastectomy ("CPM") on the presumably unaffected side.

With an excisional biopsy with clear margins, you have essentially had a lumpectomy. Here is a link to Beesie's post about some considerations in deciding between lumpectomy and mastectomy:

https://community.breastcancer.org/forum/91/topic/...

BarredOwl

2mulligans

I am new. I just joined tonight. My hands are trembling as I type, reading all I am reading on this and other threads. I am 58 years old. I am diagnosed with Stage 3A Invasive Lobular Carcinoma, grade 2/3, Progesterone and Estrogen positive, Her2 Equivocal at both tests, which I am told means a negative. I am going to Mayo for a 2nd opinion on the 30th. Here at home, the doctors recommend 8 rounds of chemo, then mastectomy. While only one breast is involved, both are recommended for removal. My CTs and bone scan are all clear. Obviously, I am terrified. My husband tries to be funny. He is an ex coach and tells me just to "push through it". I am sure he is scared too. I am totally overwhelmed. I have multiple lumps. One is huge.....7.5 cm. I am fit, active, and in very good shape.........or was. Now what?

cbwitt1970

2mulligan. I am so sorry. I feel your pain. I am newly diagnosed also. Diagnosed on 8/18/15. I am 44. Diagnosed ILC, stage I,grade 2.

The first month is a state of disbelief, fear & overwhelming emotion. Breathe...

Take 1 step at a time. Educate yourself on ALL of your options & choose what is best for YOU.

I am scheduled for bilateral mastectomy with immediate reconstruction on 9/29 & I am terrified. We will all be here for each other. My prayers go out to you. Stay in touch & God Bless...Cat

JohnSmith

@2mulligans.

I'm sorry that you had to join this group. It gets much easier after the shock wears off.

I see you mentioned the Mayo Clinic. Do you live in or near Rochester, MN?

I ask because Mayo is participating in a rare and unique ILC Clinical Trial. Why is this rare/unique? Because there has never been a clinical trial focused on Lobular. It's an opportunity for researchers to better understand the disease which should lead to new therapies that increase survival.

The trial was specifically created for newly diagnosed women (who haven't had surgery yet), such as yourself. Since ILC is understudied and less common, as an ILC patient advocate, I'm trying to help the trial investigator find ILC patients. It's a pre-surgical 'window' trial to identify markers of endocrine response in ILC. They will be treating patients during the ~3-4 week window between diagnosis (biopsy) and surgery (either Mastectomy or Lumpectomy), using three different hormone therapy drugs (Tamoxifen, or an AI called Anastrozole [Arimidex], and Fulvestrant [Faslodex]), which target the ER+ cohort. Essentially, they will compare which of the drugs is most effective for ILC and identify Biomarkers.

Don't be confused by the jargon I just wrote. These words will make sense soon as you learn more.

Anyway, The University of Pittsburgh in Pennsylvania, a US-based leader of ILC research, is conducting the trial and I'm told Mayo Clinic is participating.

I wrote about the trial in a thread called "ILC Clinical Trials" which can be read by clicking here.

The decision to join a clinical trial is a personal one that has pros and cons. I'm simply a messenger communicating the existence of a trial for an ILC cohort that desperately needs targeted therapies that exploit its distinct biology and mutational characteristics.

Feel free to ask any questions.

614

I am so sorry for those of you who were recently diagnosed.  Good luck.  The waiting is the worst.  You will get through it.  This website is extremely supportive.  I am sending positive thoughts and prayers.

Girl53

Barred, Claire and Jojo: Thanks so much for responses and links (Beesie's list is excellent). Hopefully I'll find out MRI resutls early this week; make appointment with oncologist to discuss treatment options; and get things moving with genetic counselor. I am in a daze....was upgraded on excision from LCIS. Had just wrapped my head around that, a little.

cb and 2Mull, hang in there. So sorry you had to come here, but know how much support and information are here for you. With hugs.