New diagnosis

Hi, Kathleen. I know the fear that you have inside, but there is every hope for a very successful outcome. It sounds like this is all happening very fast, which has its pros and cons. The mastectomy surgery is not a difficult one to recuperate from, in my opinion. I hope your MRI went well. That's a hard procedure to get through in and of itself. Pat yourself on the back for getting through it! To reiterate what Momine said, please come back with any questions you may have about the surgery, reconstruction or any info from the MRI. We are here to help and to encourage.

So sorry to hear that you are getting some negative feedback. It is hard to grin and bear it, but many people just aren't educated enough about bc. my sister hinted to me that getting mammograms probably gave it to me, inspite of me having two of the top risk factors of dense tissue and family history, becasue she read it some where on the internet. My advice to you is to stay away from many internet websites, or you will become convinced that a root canal gave it to you, or, if you would just ingest some apricot pits for vitmain B17, etc. Breastcancer.org is the only internet site my surgeon suggested I consult.

I had a BMX with tissue expanders placed at time of surgery, even knowing that I would need radiation - I had SLN biopsy 5 days prior and they found one positive node. Instead of a full axillary node dissection, my BS said I should have radiation - breast and all nodes - to wipe out any rogue cells. The plastic surgeon had no problem with me getting radiation - I had the radiation after I was expanded. It really depends on the patient - I had ample breast tissue and didn't want to big expansion, so no problem with radiation. Just letting you know that radiation doesn't always mean that you have to forgo immediate reconstruction. But PS's differ. If feasible, a second opinion might help.

Kdell, yes, what the surgeon said makes sense, assuming you will have reconstruction. I had a double mastectomy from the get-go. The first surgeon wouldn't do it, so I got another surgeon. I am not saying it is the right way or the best way to go, most docs think it is overkill etc. I just knew that for me it was the best choice and found a doc who would work with me on that. Since I ended up deciding not to get reconstruction, I am particularly happy to have had a 'one and done" surgery.

Oh and you will hear a lot of stupid %$^&* from all kinds of people, often when you least expect it. Try to laugh and/or let it roll off your back. Most people have little to no clue.

Hi Kathleen!

Sorry you had to join this club.

My wife was diagnosed last year. Like most facing a cancer diagnosis, we were shocked. Fear is common to all of us. Keeping control of our emotions is often like holding on to Jello. Sometimes they ooze out or slip from our control for a while. This is normal. It will get better though.

For me, I was ill-prepared for the jargon / terminology. If I had to go through the experience again, here's what I would do:

1. Record conversations using your iphone/android at every appointment. All modern mobile phones come with a recording app. Find it and familiarize yourself with how it works before the appointment. You don't need to ask the doctors for permission to record. Just do it. If they see you recording the conversation and take issue, then that might be a red flag to find a different doctor. If necessary, be discrete about recording and/or have a family member do it. Recording the conversation allows you to review what was discussed in the comfort of your home. Armed with the info, you can ask intelligent follow-up questions later.

2. If it's not too late (sounds like surgery is already scheduled?), get a 2nd opinion. I'd find a breast surgeon who only focuses on breast cancer. The best institutions in large metro areas tend to booked weeks in advance, so call to schedule a second opinion appointment asap. Chances are they may not be able to get you in for a couple weeks and the waiting can be mentally agonizing, which makes it wise to take action fast when scheduling. The sooner you get the second opinion data, the sooner you can determine your surgical options and treatment plan.

3. Do you live near Pittsburgh, Pennsylvania?

As you may learn, Lobular (ILC) is a minority and sadly understudied compared to other breast cancer subtypes.
There has never been a clinical trial dedicated on Lobular, ever!

However, that has finally changed. The University of Pittsburgh, Magee-Womens Breast Cancer Program in Pittsburgh, PA, is launching a pre-surgical "window" Clincal Trial to identify Biomarkers of endocrine response in ILC. They will be treating patients during the ~3 week period between initial diagnosis and surgery, using Tamoxifen, and AI, or Fulvestrant (Faslodex), and then comparing Biomarkers at pre-therapy (diagnosis) against post-therapy (surgery).
The goal is to assess how ILC tumors are responding to the different therapies. The trial is called: "A Trial of Endocrine Response in Women With Invasive Lobular Breast Cancer" and enrolling ~150 patients.
I need to verify, but believe it's only being offered in Pittsburgh, Pennsylvania, which potentially limits enrollment to those living nearby.

The trial investigators are seeking newly diagnosed ILC patients like you.

Hi, Kath!

Welcome to the club no one wants to join! You really are at the worst part: initial diagnosis and figuring out what is going on with your body and what to do about it.

Lobular isn't studied as much because it makes up only about 10% of all invasive breast cancers. So it often gets lumped (pun intended) in with Ductal, though it's got several differences.

Why are you saying you don't have "time" for a 2nd diagosis? Just wondering. You do have some time, although sometimes doctors/plastic surgeons trying to fill space on their calendars might make it seem like you have to rush. There is ALWAYS time for a second opinion, and I think it's important to make sure you're prepared for the surgery and recovery.

I'm assuming that your six smallish tumors are spread out enough to make that mastectomy appear to be the best option. Did they biopsy all six? The MRI is pretty good at finding anything else that may or may not be going on - it allegedly images ILC well. I also had a CT scan and a bone scan.

Don't feel too pressured to be positive and upbeat all the time - it is wise to look for people you can be "real" with. I had a huge "come-apart" about two weeks after diagnosis, after trying to hold things unnaturally together up until that point. It was helpful to let myself have that big crying jag and freakout, because I was actually better able to make good decisions after that. It's a shocking thing, and it's important to give yourself a way to process it.

Coleen

Hi,

I was diagnosed with stage 2 Invasive Lobular cancer 2 months ago. My tumors were larger, as is often the case. The local Med school is running a clinical trial where they give you an aromotease inhibitor for 6 months, then do surgery.

I was started on Femara and in just these few months my cancer has shrunk to half its size or more. No chemo or radiation is planned, but I will have a bi-lateral masectomy in early Fall, if not a little sooner. If your tumor typing shows that it's very estrogen positive, as mine was, I think it's safe to do what I am. I'm glad for the time to meet with various specialists. Finding a plastic surgeon is the hardest. First one was unimpressive. I meet with another in a few weeks.

From what I understand, Lobular has a higher chance of Metastasis, and treatment with Femara first helps ensure mets are killed before surgery. It's also my understanding that Tamoxifen and many Chemos don't work well for this cancer. The decision for no chemo was based on my Oncotype score of 15. I'd encourage anyone to get as much info as possible before surgery, and if they start you on Femara or a similar med, you may be buying time for all the decisions about chemo, radiation, endocrine treatment and what type of breast reconstruction you want

Kath, Momine, and all, sorry for not chiming in sooner ... 1st week of chemo ... okay except for sleep, aches, constipation pain followed by diarrhea... fun fun....Kath, i realize you are probably in hospital by now...but yoy are in my prayers. ... and i have no doubt you will get through all this!!!! I guess you could say im the bah hum bug spirit in the group...so take me with a grain of a salt!! I will say a couple of things. I live alone ... was in the process of applying for disability (daily chronic migraines )...no job (which i loved).... no income/money.... my legally separated husband of 25 + years moved a blond cheap bimbo (call 'em like i see 'em) into MY HOUSE....then BOOM. ... out of no where ILC ...Sisters here can tell you that i joined this group ANGRY....and still am....life is not fair...but...GrammaKathy set me right. ... I don't ask GOD why me...instead...why not me????

For me, when i thought things couldn't get any worse. .. they did. Not very encouraging i know!!!! Point is, without the support i found here, i don't know if i would have kept what few brain cells i have left!!!! You are in the right place.

The bmx was easier than i thought .... even by myself. .. the alnd sugery ... which you maybe able to avoid was the hardest to date...chemo has been no fun...would love a good foot/back/neck rub!!!!! Going to try to sleep... just wanted to say....you are in the right place!!!! Everyone here will love and hug you through it all. I just keep telling myself this is what i have in my life now in this time in my life...ive had better and worse chapters in my life....suspect i will again. Pm any of us any time!!!!!

Hi Oxford,
The thread titled: "ILC - The Odd One Out" articulates many of the issues with ILC. Buried among the 25+ pages are a number of posts referencing ILC resistance with Chemo and Tamoxifen (Tam). I can't point out the exact posts, but here's one that I bookmarked called: "Invasive lobular carcinoma cell lines are characterized by unique estrogen-mediated gene expression patterns and altered tamoxifen response"
It discusses Tam resistance for a subset of ILC patients. I didn't research chemo, as the wife didn't need it. Others should be able to cite sources for you.
Unfortunately, science has not advanced enough to answer the question: Who will resist? and who won't?
It's a problem with all cancers, not just ILC. Since very few research ILC, it may be the last subtype where this question is answered.

However, Researchers at Magee-Womens Hospital at University of Pittsburgh Medical Center in Pittsburgh, Pennsylvania are hoping to fill this ILC research void. As I posted last week (see above), they are launching the first ever Clinical Trial to investigate ILC biomarkers. Again, the trial is called "A Trial of Endocrine Response in Women With Invasive Lobular Breast Cancer".
I've been in touch with the principal investigator, who tells me they are launching very soon and have expanded enrollment to four more locations which will help accelerate the trial process. (I'm working on a new thread to discuss the importance of this trial).

Jackbirdie, I had the "everything hurts" after finishing chemo. Talk to your doc. If you had taxotere or taxol, it is most likely inflammation of the muscles and it is a right &^%$*, However, my doc gave me the go-ahead to use anti-inflammatories and I also switched to an anti-inflammatory diet for a couple of months, which helped more than pills. Anti-inflammatory foods are things like greens, fatty fish, garlic and chili.

Hi alexis39, and welcome to Breastcancer.org. We're so sorry you have to be here, but really glad you found this incredible Community. You're sure to receive tons of the support, information, and advice here!

Welcome again, and please feel free to reach out if you have any questions about the boards or posting!

--The Mods

I am hoping I am worrying about nothing. I had my yearly mamogram and got a call from my doctor. Saying I needed to come back for more tests. I am starting to panic. I had a lumpectomy about nine years ago, I was told it is on the same breast. I keep hoping it is nothing. Is it normal to panic?