From presumed healthy to bilateral ILC in 6 days
While I appreciate the speed with which my medical providers are getting me in to appointments, this has been a whirlwind week, especially with my husband being out of town!
- Sunday evening - felt enlarged node under left arm
- Monday morning - GYN had me just come right in, quick hands-on exam and sent directly to local breast center for diagnostic mammograms and ultrasounds for both sides. Scans were immediately read and radiologist scheduled ultrasound guided biopsies for both left and right.
- Wednesday morning - Biopsies performed.
- Thursday morning - Nurse from breast center called to say both sites' results were positive for lobular breast cancer and she had already scheduled me to see a recommended breast surgeon.
- Friday afternoon - Met with breast surgeon who explained current pathology results and desired further testing.
Known results (same for both sides):
- Cancer type - infiltrating lobular
- Positive for estrogen receptor
- Positive for progesterone receptor
- Size - less than 2 cm (based on scanning to date)
- HER-2/NEU - not yet known, takes a week to get results back
- Grade - 2
- Enlarged lymph nodes on left
Here's the current immediate plan:
- Genetic testing - scheduled for Monday
- Bilateral breast MRI - scheduled for Tuesday
- Re-visit to breast surgeon to discuss MRI results - scheduled for Wednesday
Based on these results (along with HER-2 status), next steps would be:
- Possible additional biopsies of other areas of breast and/or lymph nodes (suspects involvement based on enlargement)
- Possible PET scan (if insurance will cover), otherwise possible CT scan of chest, abdomen, pelvis and bone scan
- Development of treatment plan (surgery is a definite although type still TBD, probable chemo either before or after, possible radiation depending on surgery type decided. . .he mentioned the positive hormone receptors provided additional treatment options but didn't really discuss probability for treatment)
- I would love some feedback on the plans so far. Anything that is missing that I should ask about, either testing or treatment?
- I asked for some mild anti-anxiety meds as I've been calm on the outside and a total mess on the inside. He gave me a script for Ativan and told me to let him know if it wasn't doing enough. I specifically asked for something that would not make me feel out of it or loopy. Is this a good choice? The funny thing is, as soon as he handed me the paper script, I've felt calmer. I haven't even filled it yet!
- Anyone with a BTDT experience with similar initial test results? I'm trying not to let my mind wander to the worst possible outcome but that's tough. I've had stomach pain for the last few months and, of course, found online that the stomach is one area the ILC preferentially targets when it spreads. I did share this with the breast surgeon, as I was convinced that my stomach felt firmer through my abdomen than the rest of my tummy area. He did feel around and said that he thinks that's just how I'm made and that I shouldn't worry about it. That made me feel a little better but admit to still being a bit worried.
- He's clearly expecting to have the MRI results to discuss the next day and he expects to have the HER-2 status by then as well. How long does the genetic testing results take to get back? He made it sound like the treatment plan could be affected by this as well. I'm wanting a treatment plan nailed down ASAP.
Comments
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Hi Leydi,
Welcome to BCO. The women here will offer you great support and share incredible knowledge. I was diagnosed with bilateral ILC after my PCP felt a thickening in my breast. (ILC in left breast discovered AFTER prophylactic bilateral mastectomy.) It definitely sounds like your surgeon is thorough with scanning! My ILC was not clearly visible in imaging -- larger than expected... nothing seen in nodes on MRI - they were found after surgery to be positive. ILC can be sneaky...
You are in the most difficult phase of all this! My doctors never offered medicine for my nerves -- I could have used some! You are wise to request something. Once you have your surgery and reports from pathology, you will be able to move forward with a treatment plan, and that is calming.
I do not see above - did you mention an appointment with a medical oncologist? I saw mine early on to know their thoughts on a treatment plan. The surgery that you choose will sometimes affect whether you have radiation... I met with a team of doctors (breast surgeon, medical oncologist, radiation oncologist) soon after my diagnosis. I also secured a second opinion early on... I received 2 totally divergent treatment plans from 2 different hospitals' tumor boards. A second opinion can help to clarify things or complicate the decision process... It depends on your personality whether you will benefit from 2 approaches.
I hope that you are able to bring someone with you to appointments where you are discussing treatment options -- sometimes when I was receiving "bad" news, it was difficult to listen closely to the doctor's words. You will want to be able to refer to notes from appointments when making decisions -- my husband took notes for me.
I am sorry that you are having to deal with this. But you found BCO! It will be a huge comfort.
Best
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Welcome, Leydi, and my sincere condolences. You have found a great place here, where we are all Brothers and Sisters who truly understand, and we have some very knowledgeable and very helpful folks. We know the shock of getting a breast cancer diagnosis, and we all have had the worries and fears you have been having. We care. We commiserate. Stay with us, and you will find yourself laughing with us at times.
Wow, that was fast -- how readily the evaluation process has moved along for you! When your treatment is planned and underway, you will feel much less anxious. One part of your treatment -- your surgery -- will be planned from your own decision. The extent of your surgery is something you must decide for yourself, from the options your Breast Surgeon will recite as appropriate for your case. If you already know which surgery would be best for you -- I mean, if you are already decided -- by then, then the planning of that part of your treatment can proceed. Take plenty of quiet, undistracted time alone about it, and decide from your own learning, your own circumstances, and your own concerns which surgical treatment would be best for you. It is often said that each patient makes the right (best) choice for herself or himself.
If by "genetic testing" you mean testing of genes in your tumor tissue (?), that generally takes just a few weeks. Many of us have surgery while that type testing proceeds on our biopsy specimens, and then when we meet later with our Medical Oncologists, those reports have already been made to them, and those reports can help in guiding their treatment recommendations. Many of us begin treatment with Chemotherapy and have surgery later.
We have our Invasive Lobular topics section, as well as other subject matter discussion sections where you will find similarly situated others.
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Hi Leydi-
We want to welcome you to BCO. We're sorry for the circumstances that have brought you here, but we're glad you've joined us, and hope you find this community to be a source of support in the coming days and weeks. This is one of the hardest parts, when you're in limbo after being diagnosed but before having all of the information and a treatment plan. It sounds like you have a very thorough medical team though, and that's a good thing!
We'll be thinking of you, please keep us posted on how things are moving along. We hope to see you on the boards!
The Mods
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Thank you for the responses so quickly! I appreciate the warm welcome. Just communicating here helps me to feel that I'm taking some kind of action. To respond to a few of the comments and questions:
I will be able to have my husband attend future appointments with me to help with asking questions and taking notes. My breast surgeon was writing things down and even drawing sketches as he talked to me today so I just asked if he was going to give me that piece of paper when he was done. He did.
The genetic testing, as I understand it, is on me and not the tumor, to see if I carry the genes that make breast/ovarian cancer much more likely. It will affect the type of breast surgery that he recommends, as well as raise the possibility of surgically removing the ovaries.
I do not yet have an appointment with a medical oncologist. The surgeon wants to get the rest of the testing data first and mentioned that I would definitely be meeting with him/her soon if it looked like doing chemo before surgery might be a better option. He did say that the hospital board meets every Wednesday to discuss every case and that my case would be discussed there.
I'm undecided yet on whether to seek a second opinion once a treatment plan is developed. I plan to discuss it with my GYN in whom I place a lot of trust as well as a relative who is a nurse practitioner in women's health. We have a major cancer center about 3 hours away. That may be a possibility for a second opinion but not really very practical for implementing treatment there.
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Leydi, it sounds like you have such a great support system!
If you decide to go for a second opinion at the cancer treatment center, you should definitely be able to have their suggestions implemented by your local team - I go to Dana Farber (between 30 min to 1:30 commute depending on traffic) for my treatment but have several friends who are treated elsewhere in MA and in NH. Many of them have been referred to DF for second opinions by their MO's. There seems to be a general comfort here with getting direction from a teaching hospital? If I had needed radiation, I would have had it done locally.
I hope that your waiting period is relatively short and you get started soon on treatment. My friends who are treated locally receive more scans and speedier surgeries in general! You sound very calm -- that's amazing.
If at some point you are feeling scared and just need emotional support, there is a "social" thread called
CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
https://community.breastcancer.org/forum/84/topics...
I don't often post on BCO, but have made 2 close friends through BCO. The women on the crazies thread are very friendly and supportive, a very kind group. But, as I said, I do not post often... Take care
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I did fill the Ativan script today (was actually issued the generic) but haven't felt the need to take one yet. Just having it available seems to help. Sleeping well so far, although with some odd dreams. My late father "visited" me in one dream. He gave me a big smile and a hug.
I appreciate the recommended links and threads. I'm sure that I will make it through them all in time. I have a tendency to obsess a bit at the best of times and research things to endless bounds.
Dreading talking to my husband and younger daughter to fill them in. They are expected home sometime tonight. I need to talk to my sister today or tomorrow to have help in filling out a detailed family medical history for the genetic counseling/testing appt on Monday. I'll also have to talk to my supervisor at work on Monday as he will need to know why I'll be missing work for all these appointments and eventually for treatments and recovery. Problem is, I'm still absorbing and processing the information myself and do not feel ready for these conversations.
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daisylover I just want to pipe up and say that I also live in MA and I'm followed at DF. I switch between Newton Wellesley and DF. I like the NP at NW who follows me and the Oncologist is a person I know well at DFC
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Leydi, whether your treatment is to start with Chemotherapy or with surgery, it is important that you and your household members all do your best not to catch any communicable diseases that may be going around -- such as respiratory illnesses. Chemo treatments and surgeries are sometimes delayed (from *otherwise ideal* scheduling) because of sicknesses like that. Your Oncology Clinic will likely expect and require you and your accompanying support person to be apparently free of any such illnesses whenever you visit there. I strongly recommend that you discourage and avoid non-essential in-person visits. I strongly recommend also that you and your household members do your best to keep out of crowds and also that you get and wear clinical use masks whenever (any of) you must be around others, until you are all done with any and all surgeries and any and all Chemo treatments and follow-ups therefor. On the bright side, your wearing clinical masks in any public places will usually get you more "personal space" -- and that will help even more to reduce your risks of catching anything that might necessitate delay or interruption of your treatment plans.
Pharmacy drive-thru pick-up windows are best for getting your medicines now. Other shopping is best done by mail order or in the stores at like 2 a.m. on Tuesdays, provided, however, that those Tuesdays are not the first day/s of the month/s. You get the idea.
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Hi, Leydi. I'm so sorry you are dealing with this. As others have said, it gets better once you have a plan. You may want to look for a local in-person support group as well. That made a huge difference for me in the beginning. Ask your hospital social worker or the American Cancer Society.
So, below are some responses to your questions above, from another who had a diagnosis of premenopausal ILC. I'm assuming you are premenopausal.
Her2: Classic ILC is Her2 negative, so chances are yours is Her2 negative. That means less aggressive, and no anti-Her2 drugs in the treatment plan. But if it does turn out to be Her2 positive, the drugs they have for it are very good. Grade 2 is also typical of ILC.
Surgery: One of the questions for you and the tumor board team will be lumpectomy vs. mastectomy. Sometimes ILC doesn't show on mammograms or ultrasounds, but MRI is very sensitive for it, so it is very appropriate that you will have the breast MRI. If there are additional tumors, mastectomy will probably be recommended. If you turn out to be BRCA positive, oophorectomy and mastectomy will probably be recommended. BRCA-related breast cancer is not typically ILC; when it is, BRCA2 is more likely than BRCA1. If there is just one tumor in each breast, it may be possible to have lumpectomies. You will have to get expert opinions on what is most appropriate for you. I would ask how the bilateral diagnosis affects this choice. Make sure your team is experienced in sentinel node biopsy; you don't want to lose more nodes than necessary. There are other things you can look into, like the best timing of surgery according the your menstrual cycle and using toradol at surgery to lessen the chances of metastasis.
Radiation: Radiation is standard with lumpectomy. With mastectomy it depends on whether there are nodes that need to be radiated.
Chemotherapy: ILC is a very hormone-driven subtype, and many cases do not require chemo. If the Her2 is negative, they should order the Oncotype DX test of the tumor to inform the chemotherapy decision.
Hormonal Therapy (a.k.a. endocrine or anti-estrogen therapy): This is a given with ER/PR positive. The question will be whether to go with the standard tamoxifen for premenopausal women, or use ovarian suppression and an aromatase inhibitor. You sound like a reader, so I would recommend you look at the SOFT trial results. Also, there is some question about whether there is subset of ILC that is resistant to tamoxifen. Oncologists differ on this question. See discussions on this board, and the University of Pittsburgh studies. The medical oncologist is in charge of chemo (if needed) and hormonal therapy . In some places you don't get sent to this person until after surgery, but I think patients should at least have a meeting with him/her at the beginning to get their input.
Telling People: You do not have to tell anyone, including your employer, and you can take your time deciding who you want to tell, how much to tell, and when to tell. You can't un-tell, so make sure you are comfortable. Your supervisor is not entitled to your personal medical information. Take it one step at a time. How old is your daughter?
I am impressed with the speed with which your appointments have been scheduled. Many have to wait much longer for each phase, which is nerve-wracking. It sounds like your providers are responsive and thorough. I think a second opinion is always appropriate, and think it is a good idea given your age, the bilateral, and the fact that ILC is less common. Are you at an NCCN center? I would try to get the second opinion from one for sure. Or at least an NCI designated center. Or at least at least a university teaching hospital.
https://www.nccn.org/members/network.aspx
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One more thing. MRIs are great at seeing all sorts of things, but not so good at saying what they are. Sometimes a person ends up with a scare and a biopsy of a new area of concern that turns out to be benign. Just wanted you to know. Don't panic. Also, sometimes with ILC the MRI shows the tumor to be bigger than the mammogram or ultrasound did. This usually does not mean the tumor has grown that fast. It is just the nature of ILC and the sensitivity of the imaging techniques. Hopefully, your MRI will show no other areas of concern and still under 2 cm, which is not considered a big tumor.
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Wow, these last few replies are chock-full of good information. Thank you! I will be reviewing them carefully a few times to be sure I capture and absorb everything.
The tips to avoid illness before/during surgery and chemo are appreciated. I certainly don't want things to be delayed because of something like that.
I've been pleased with the speed of my appointments as well. I saw the genetic counselor today and she strongly recommended genetic testing for BRCA-1 and BRCA-2 as well as the Lynch syndrome genes, given my family history. I agreed and the blood sample was taken and sent to the lab. My daughters are 16 and 19 so this information will be important for them to have as well.
Thank you, Shetlandpony, for all the treatment information. I'm just starting to look into the various possibilities so this is extremely helpful from someone who has been through this. I'm peri-menopausal so assuming that since I'm not fully menopausal that I'd be considered pre.
I'm not at an NCCN but there is a university teaching hospital in town and a NCCN about 3 hours away. Either of those may be a possibility for seeking a second opinion. Meanwhile, I've been hearing nothing but accolades for my current breast surgeon. The nurse at the Breast Center highly recommended him and the genetic counselor had only good things to say about him as well. It turns out that his wife has been through breast cancer diagnosis and treatment so he has a personal experience that impacts his patient interactions.
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I had a breast MRI today and have an appointment to discuss results with the breast surgeon tomorrow.
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Hi Leydi,
You can see by my signature line below that I had ILC, etc. etc. While I agree that in some cases ILC doesn't merit chemo, I was advised (by MO and second opinion) because of my + node status I should have it. Since I wanted no "look back-regrets", I bit on the bullet and went through ACT chemo, five months. And I've never regretted getting the entire kitchen sink of tx thrown at me. I figure that might be my only chance to get rid of little c ( I refuse to give it power by calling it by its name, or big c).
One thing you should know--ILC has a higher tendency to be multi-focal--and that's why I had a BMX instead of getting rid of the one bad boob. Subsequently, I was right in having both breasts removed, because the pathology post-surgery confirmed I had mild hyperplasia in the "good" boob, which would never have been uncovered if I hadn't had it taken away. In other words, eventually it could have turned into a problem.
Ask me anything about ILC or search my member name and see what my experience has been since I joined bc.org in Sept 2011, and join us on the ILC thread if you like. It isn't as active as some others, but most of us check it regularly and will respond right away if someone posts.
Your attitude is good and will serve you well while you negotiate this road. The road eventually smooths out. BTW, I used a half dose of Xanax (half a .25 mg tab) from time to time during the early days of dx, and never felt doped or out of it.
Claire
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Leydi,
I hope today's appointment went well and you are not too confused by the options presented. Hopefully, you will be able to initiate a treatment plan soon. Breath deep. Thinking of you...
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Thank you claireinaz and daisylover. I've started a new thread in the ILC subforum where I detailed today's discussion of the MRI. Results were mixed.
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So, not sure if I should just keep adding to this message thread or start a new one. Let me know if there is a forum etiquette to follow. Just to catch up:
MRI results - was called "non-definitive" for breast involvement (which I interpreted as meaning that they couldn't tell how much of the breast tissue was cancer). Did show several positive nodes on one side and one of the other side.
Biopsy of one of the lymph nodes was done to get enough tissue for HER-2 analysis. Somehow, the biopsies done on each breast did not provide enough tissue for this result. I told the radiologist to be SURE she took enough tissue this time so she took 6 cores (twice as many as she would normally). The nurse laughed at me afterwards about that. Took over a week but heard back that it is HER-2 negative.
Genetic counseling/testing - Results came back negative for everything they tested. So, no BRCA1, BRCA2, or Lynch syndrome genes.
PET/CT scan was scheduled but through a chain of events (insurance balked, coordinator at doctor's office took vacation, insurance customer service phone number was unresponsive due to a staff training day) had to be cancelled and re-scheduled over a week later. So, I just had the scan earlier today. The BS told me to call him late this afternoon to see if he could get the results. I thought that was pretty optimistic and sure enough, when I called his nurse said that they didn't have the results yet. I should hear something tomorrow.
Hate waiting for results. Hate it. Trying to both brace for the worst and hope for the best. Yeah, that's not working out so well. Still have my full bottle of Ativan; I've decided I'm even too cowardly to try one!
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Just wanted you to know I'm thinking of you Leydi.
Waiting is so hard. Hugs Donna.
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PET scan was reported to me as clear except where we already know the cancer is - breast tissue and lymph nodes under arms. Relieved because I was "sure" that it had already spread to other lymph nodes around the body, at least.
Scheduling the surgery is supposed to be next.
Thanks for the support, Donna!
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