Just Diagnosed with IDC, but don't have much info yet.

Dodes

hello all! i hope it's ok if i tell my story, and if you don't want to read it (that's cool), my answers will be at the end of this.

in january 2017, i had my screening mammogram, then a diagnostic on my left breast, then a US , then a radiologist came in to do a more through US.

he said initially he couldn't find anything, and didn't know what he was supposed to be looking for. then he 'magically' found something that he said was a lump. put my fingers on it, told me to keep a good eye on it over the next 6 months, and then told me (and i'm quoting here)- "there's nothing to worry about tho, if it's not the size of a golf ball, it can't be cancer". well. no. actually, we all know that's not true, but lying there, fully exposed to a man i didn't know, i felt at a disadvantage . he mentioned that he could do a biopsy, but it was in such a position that it wouldn't be worth it. (?) his official report mentioned nothing of the "lump" and recommended a 6 month follow up. he for reals said that, and then basically said it again as i was leaving.. he lost all credibility with me, but nobody seemed to care.

fast forward to my GI's office. i have sclerosing mesenteritis, and sometimes tamoxifen is used as a treatment. When GI asked me how my last mammogram went, i told him, and he was like - yeah, that's not cool, i'm sending you to a breast surgeon. told me it would probably be at least a month or two before i got it. they called within a week of the referral , this past monday, actually. appointment wednesday.

Breast surgeon walks in with my films and puts up the FIRST mammogram, and says "do you see that? (pointing at some bright white thing on the film), that's not supposed to be there. i don't know if it's cancer or a radial scar, but you're having surgery one way or the other." i'm baffled that she was able to see something that no one else saw even in subsequent imaging. baffled, and if i admit it, kinda angry too. she felt me up, (sorry, i have a weird sense of humor) and decided that we needed to do a biopsy right then and there. so we did a core needle biopsy at 4 pm. (and it was on the opposite side of the breast as the "lump" that the radiologist 'found'.

at noon on thursday, i got the call that it was cancer. idc. ok.... grade 1. sweet! but that's all the info i got. friday morning i gave blood for the genetic testing. will have a breast mri, and another mammogram (she put a clip in) before seeing her again on 8/2.

mentally, i think i'm doing ok, a few moments of freak and panic, and then i remember that whatever's going to happen is going to happen. the "c" WORD scares me more than the actuality of it, if that makes any sense at all.

SO, you crazy people who've read this far, and hello to those of you that just came to the bottom of the post (!) my questions are as follows-

if it's grade 1, i shouldn't panic that it's been there since well before january, as it can't have grown/spread THAT much in 6 months, right?

they were able to id and grade it in a few hours, how much longer should i expect to wait to hear about the hormone receptivity?

can they "stage" from a core needle biopsy? i didn't think so, as they don't know how big it is, and where else it might be, but maybe the mri will give us that info? or will it not be staged until they remove "it"?

....and if that is the case, how will we be able to come to a plan of action as far a what surgery will be required? i guess i'm not sure of how much info the surgeon will be able to gleen from the next two imaging tests and genetic info. or do they perform surgery, and then decide a course of action? that part has me confuzzled, as i don't know what questions to be prepared to ask when i go back on the 2nd.

tia for any and all responses. i'm sorry i have to be here, but i'm glad i found a place to "be".

voraciousreader

first off, biopsy gives you preliminary info. Once you have surgery, then you should receive a final pathology report indicating the stage and biology of the tumor. If your tumor is early stage, fewer than 3 nodes positive, ER + and HER2 negative, you can have genetic testing of the tumor to determine if you need chemo.

Now, with respect to being grade 1, the biopsy can sometimes give you that info. But it will not be confirmed until the surgical pathology testing is completing. Now, having waited six months, I wouldn't worry too much. If it is a grade 1 tumor, it probably has been growing for a long time. If confirmed as grade 1, you will probably have an excellent prognosis which means you will have many good treatment choices.

Finally, any additional imaging that you have pre surgery will help both you and the surgeon in deciding what surgical options you may consider.

You are at the early stage of treatment. It may take a few more weeks until you have a treatment plan that works for you. Now is the time to read the NCCN breast cancer treatment guidelines. Register at their website so you can familiarize yourself with the treatment guidelines. Remember, the guidelines should be a starting point in your discussions...

Good luck

PoppyK

So glad you were your own advocate and went to a doctor you trust for help. Have you thought about registering a complaint about the radiologist? I know you have a lot on your mind right now, but it might give your mind something to do while you wait for answers.

I agree with what voraciousreader said above.

Grade 1 is an indicator of slow growth, which is great news. But keep in mind that a core biopsy is a very tiny sample of the area of concern. Once that area is removed, you will get a better diagnosis regarding the grade. My grade did not change.

From the mammo, they have a good idea of how big the area of concern is. The MRI will provide more info to your doctor, which will help them determine if there are any other areas of concern. The doctors will be able to tell you how big the area appears to be. Of course after surgery, the size of the tumor will be indicated in the path report.

In fact, once the area of concern is removed, you will have so much more information such as whether your cancer is ER+ or -, PR+ or - and so on. One or a few more lymph nodes will most likely be removed to see if cancer cells have spread to the lymph nodes.

It's important to know that you have choices and options. Take the time to ask questions. Right down your questions and take them with you to the doctor.(They are used to talking to us about BC, so they may answer most of your questions without you asking.) Take notes or use your phone to record your visits with your doctor so you don't forget what was said. Get copies of all of your test results. Read the information on breastcancer.org but don't Google all sorts of things.

I remember when all of the terms and options were new to me. You will learn so much as you go through the treatment process. Hang in there. The waiting is soooo difficult.

Keep us posted!

Poppy

Dodes

thanks for the info! one of my besties is a paralegal for a malpractice attorney, and while i have no interest in suing him, she's going to write him up to our state medical board, and possibly some of the other radiologists that signed off on this guys work. they can, and should do better.

i am reading all i can at the nccn website, and will take my questions to the next appointment.

so, if i understand how this might work is that i'll have these two tests, find out if my genes are mutated, and that will help my BS decide how much to take out. after THAT, then i'll have the staging and what not, and plans for any after care will be made then?

so, i'm getting that my life may or may not be turned upside down for the next few months.... lol.

voraciousreader

you are confusing the genetic tests....one test, the OncotypeDX and/or Mammaprint will tell you if you need chemo, that is, if the benefit out weighs the risk. The second type of genetic testing will tell you, since you are young, to see if you need to remove other body parts...

With respect to reporting the radiologist...my tumor was missed for several years because it resembles a cyst. Several years ago, I read a study that explained there are more errors done by pathologists later in the week. Likewise, I had my own awful radiology experience with my younger son....he had an imaging test during Christmas week (short staff week and less experienced, younger doctors on call). The radiologist, whom I spoke to, assured me that everything was clean. When the surgeon did her procedure, she took a closer look at the imaging and said, "THAT image is NOT clean." Boy, were we both hopping mad. Thankfully, my son is now well

Dodes

oh wow, voraciousreader, i'm glad your son is ok. i guess i'm confused by alot of things right now, including genetic testing. yes, i had the "myriad my risk" test done, and i now understand that there are two different tests... thanks for the clarification! glad to know that at 54, i'm still considered young. i'll take it!

thanks for the explainations and especially for your patience. it is truly appreciated.

voraciousreader

i was diagnosed young too! Age 53.... and pre menopausal

Dodes

ha! i made it through menopause before it struck. so grateful that's over and done with my husband just came in and told me to stop reading because i was going to overwhelm myself. he has no idea... bwahahaha!

EastcoastTS

Dodes:

Keep your good spirits. Those carry you through much on this journey. Pretty much say 2017 is now devoted to the guest you didn't invite but decided to stay: BC. That's what I've done. Then, I want 2018 to be about other things! Not cancer!!! The more info. you receive and the more you understand your plan and your exact diagnosis, the better this gets.

My Oncotype was done after surgery. Because if I had had lymph node involvement, they may not have run it. (Because chemo decision made already.) Not sure if that is always/always the case.

You should receive your biopsy sample's hormonal breakdown soon, I'd guess. Ask them! I had to wait about a week for the entire thing -- but you got some info quickly you said. This information is critical for next steps and treatment planning. Along with the MRI, which should give everyone a very good idea of the tumor size and how the rest of the breast -- and it's partner -- are doing. My MRI said my tumor was 1.2mm and it was actually 1.8mm, however, I'm lobular and they are often larger in final path. analysis. You should get a very good idea (I think) since you are IDC.

Once the steps fall into place, you'll begin to see where you are headed. Take a breath. Waiting was the absolute hardest part (not knowing my stage until about 2 months after diagnosis). All a guessing game until then. Stay off Google.

Hugs to you!

voraciousreader

dodes...just tell the DH you are communicating with your newly found sisters..

Dodes

amen, voraciousreader!

PoppyK

I was 49 and premenopausal when I was diagnosed. I was referred to as "young" so many times that year!

I had the Myriad My Test done, too. It takes a while (almost a month) for the results, but provides so much information. I did the test so I could make an informed decision about whether to have a lumpectomy or mastectomy.

Tell your husband that sharing information and "talking" to your new found "sisters" is helpful to you. I found it very calming and found so much support here. I'm sure once he knows that you aren't merely Googling away, he'll better understand.

EastcoastTS

49 for me, too. Young on the cancer spectrum. Joy.

Artista928

I probably would have been dx's earlier had I gone in. 7 cm even though it's grade 3 takes a long time to form so had I kept up with my checks (which I did not) I may have been dx'd in my mid-late 40s. As it is it was 50 and my team calls that young.

ChiSandy

I got my tumor's hormone-receptor status and grade during the phone call from my gyne's partner's office the evening of the day after my core needle biopsy. The next morning my gyne (who'd been out of the country) called to tell me it was HER2-. But stage depends on both the size of the tumor and the lymph node status, neither of which can be determined until the tumor has been removed and the sentinel nodes removed and biopsied. A surgeon can guesstimate, as mine did, what stage the cancer will probably be but only surgery can confirm it.

There seems to be some confusion here about genetic vs. genomic testing. They are two different things, done independently of each other, on different things (blood vs. tumor cells) to find out two different phenomena. Genomic testing (OncotypeDX, MammaPrint, Prosigna) is done on the tumor tissue itself, to determine how vulnerable its cells would be to chemo and therefore if chemo's benefits would outweigh its risk. Sometimes enough tissue is collected in a core biopsy, but usually not. (And one of the eligibility criteria for genomic testing is not just hormone and HER2 receptor status but also node involvement: it is performed only if 0-3 nodes test positive for cancer). It isn't always done, either—the tumor's characteristics and lymph node status may be ineligible, or all features of the tumor (and sometimes the age of the patient) clearly indicate that either chemo would be of no benefit or not beneficial enough to outweigh its risks.

But Dodes mentioned that she “gave blood for the genetic testing." That is a test that has nothing to do with the actual tumor (nor adjuvant treatment): it determines whether the patient carries genetic mutations that can affect her risk for developing breast cancer (and what type, such as triple-negative), ovarian cancer, and even in some cases colon, pancreatic, stomach, melanoma (and if the patient is male or a first-degree relative who's been tested, prostate) cancer. Based on which mutations are found, prophylactic mastectomy and/or ovario-hysterectomy might be recommended (as well as testing living first-degree relatives). The fact that she was tested indicates that she might have a family history and/or ethnic heritage that would increase the likelihood of various mutations.

Dodes

so much good info, thank you so much for sharing!!

sorry i kinda checked out for a few days... i think i've got my head wrapped around it....maybe. lol.

i had the genetic testing done for my daughter in reality. i had an maternal aunt die of ovarian/uterine cancer. (info coming from my 85 yo mother, and my aunt died in 1961, so i'm not exactly certian which one it was), and maternal grandfather died of colon cancer. my mil had breast cancer in the '80's (having ex see if he can find out which one, don't know if that info would make any difference) she had double mastectomy and it came back 20 years later, had metastasized into her uterus (?) and she passed. at any rate, she had cancer in her uterus.

so, my girl, has it from both sides.

got a call from the genetic testing co earlier this week, and my insurance won't cover it. out of pocket will be about 2500. not really in a place to do that, but i really feel like i need to.

i haven't said anything to hubs yet. so, knowing that you're not doctors, if your family tree looked like mine cancer wise, would you think you'd spend the $ to have the test done? they'll hold my sample for 60 days.....

already having to make hard decisions, and i don't even have a clinical staging yet!!!!

btw, hubs is doing much better. he's a good man, and he's learning right along with me.

this is how i'm feeling-

https://www.google.com/search?q=tom+petty+the+wait...

voraciousreader

dodes...i haven't listened to Petty much lately...googled him and on Thursday, he is going to be appearing locally....hmmmmm...

Regarding genetic testing...i think that you might be able to negotiate with the company. See if they offer to reduce the price or if you can sign up for some kind of monetary grant...if all else fails...ask if you can pay over time.

I qualified for a genetic test and considered myself lucky that my insurance paid for it. However, my phone number was shared with the company and they kept calling me because they had questions to ask me about my decision process with respect to the info garnered from the test. Suffice to say...i never returned any of their calls. I think that info should be private and my decision process is none of their business. The reason why I am telling you this is that once you have these types of tests, the company can potentially garnner lots of propritary info about you. That said, once you agree to have the test, the company is in a position to learn so much about you in addition to whatever they learn and you learn about your genes. Perhaps you can use that piece of info as a bargaining chip towards getting them to give you a discount...

NotVeryBrave

I think that coverage for genetic testing often depends on who is being tested and who is ordering it. It seems much more unlikely to be covered if you pursue it on your own.

My OB/GYN office recommended testing years ago for me because I had an aunt with ovarian cancer, a great aunt with breast cancer, a grandmother with pancreatic cancer, and two uncles with prostate cancer. At the time - I was really thrown off. I was just there for a well woman exam after all. I ended up not doing it, feeling like they were pushing it for financial kick back or something.

Then when I was diagnosed, the MO suggested it. Whole different ball of wax. My insurer required genetic counseling first and the MO office provided that and took care of all of the testing (OvaNext). I tested negative and was relieved for my girls. Of course - they could have something from their father's side or there could be something genetic that isn't known yet. But only something like 5-10% of breast cancer is genetic.

My testing was covered completely Have you talked to your doctors about this?

Dodes

voraciousreader- it's a sign! lol.

notverybrave, the breast surgeon ordered it, i went to her for what i thought was going to be a "oh, there's nothing there, not to worry, take the tamoxifen for your other disease", and walked out with a cut up boobie and a genetic test kit. i was like "wait...wha? that's NOT what you were supposed to say. FAIL!!!"

last night, i looked carefully at my insurance's exclusions, and sure enough, there it was - no coverage for genetic testing. c'est la guerre.

i'll talk to the hubs about it today, and see where we go from here.

i cannot begin to tell you all how grateful for this site and this forum.

onward!

MTwoman

dodes, there is a much cheaper option (than the $ you named above) that people typically pay for themselves (I think I read something like $250). I've not done it, and don't want to give you the wrong name. Maybe start a thread and ask women who've self-paid for genetic testing which ones they used and how much $.

EastcoastTS

Insurance paid for mine but the genetic counselor said that out of pocket (if insurance did not cover) is maxed at like $250. Talk to a genetic counselor, not necessarily the MO, if that makes sense. They'll help you more.

Now that I recall, the genetics group called ME before running and stated that my out-of-pocket would be no more than the $250 or so that I recall IF insurance was a no-go.

Perhaps you can find out who would test and call them.

Dodes

oh yeah! i remember the nurse saying something about there was another company that would do it, and it wasn't much like 250 or something,but they weren't the "preferred" ones. but then she was talking about the My Risk people calling if out of pocket was going to be more than something like 250 and they would call to get approval.... must've gotten it all mixed up.... i had totally forgotten that. ( i was a little busy freaking out, lol) thanks guys!

EastcoastTS

Busy freaking out is normal. I still do it every now and then myself!

HUGS to you. Ask any questions. No matter how small.

voraciousreader

ahhh...that's good that you recalled... and...

Speaking about a "sign"...tonite.. the dh and i met a friend for dinner followed by a free concert at the.boardwalk and the friend said there was a concert later in the week... Tom Petty... and did we want to go? Absolutely hilarious.... couldn't share the laughter with her because most friends don't know I was treated for breast cancer... but i can share the humor with you!

Dodes

yes you can!!! that's awesome! bwahahahahaha!!!

Msjackiefan

HI,

Stage 0-Stage 2 are pretty well handeled today. If you read up, Stage 0-Stage 1 now have virtually identical rates of wellness after 5 years...and risk continues to go down. I'm in early year 5 (next May will be 5 year anniversary) after sitting with a radiologist who came up with the opposite conclusion yours did. I found my tumor myself and insisted they do a diagnostic mammo, even though nurse and doctor could not feel the lump I felt. Amazing, huh? This was after 2 years since last mammo. It was deep enough but also just big enough that I felt it. My radiologist said best thing in the world; 'Well, it could be scar tissue...but if it is cancer it's early stage and we'll treat it successfully.' And got me going for the biopsy. That was the tone of my entire diagnosis and treatment. Just move along to the next step. I was fortunate that it was early stage, as it was easy for practitioners to communicate hope. I had also done alot of research on -line prior to my biopsy..It works for someone like me, who needs answers asap; but not for everyone especially if you have a tendency to imagine the worst.

I recall, after 4 years, the attitudes of my caregivers back then, more than I remember the procedures-and generally there are more than 1. My onco dx was indeed to determine if chemo needed. That was a NO. Currently under the care of a med oncologist that checks me 1-2 x per year, ie, CT, bone scan, just to make sure nothing crops up. So I just don't worry. My actual breast surgeon-not the resconstruction surgeon-gave me very encouraging words. that I'm never forgotten: He felt I was as close to cured as he could actually say. Those kinds of words will stick with you in future, and may allow your immune system to function better. TEll them you want to hear every shred of hopeful info, as that is what stays with you. I barely remember my procedures.

You sound great...if you need to curl up at any time, just do it. You'll be stronger for it. God Bless!

Dodes

msjackiefan, thanks for the uplifting message! i don't have a staging yet tho... only a grade. my understanding is that we won't get a stage until after surgery and sentinal lymph node removal. i was told i can't be stage 0, as it is invasive, and at a minimum that puts me at a stage 1. i know this isn't going to kill me, the question now, is how much it's gonna suck in the near future. bwahaha!

i have very dense breasts, and apparently it's hard to see stuff in there. but seriously, i don't know how they missed these.. especially with them circled by the first radiologist who looked at them. these were from my screening mammo. i have for reals, tried to squish my boob to match the mammo, so i can try to figure out how big this (these) tumors are... i'm pathetic.

had the mri this morning, and when i was explaining my nervousness to the tech, she said "oh, you're one of THOSE...." and i'm like wth is that supposed to mean? i tried to explain to her that i was the kid that had to be held down to get their shot, my head and arms were belted to the dentists chair because that was the only way they could pull my teeth. they wouldn't believe me when i told them the Novocaine didn't work. my mother smacked me across the face as we were leaving that day, because i embarrassed her. so, yeah, i got issues!

this lady didn't care, basically said shut up and tough up. so i did. and then, when she came out to inject the die, she was soooooo sweet, telling me how good i was doing, and that it was almost over, and how proud she was of me... and i thought "crikey, is it THAT bad?" lol.

thinking i might make up some kind of card to hand to anyone coming at me with a needle, explaining my issues, so i don't keep repeating myself to everyone of them.

anyway, clip mammogram tomorrow, and see the BS on wednesday. so, i'll have some answers, finally!

Msjackiefan

Mine are dense too. Yes, not as easy to see. Keep us posted and know that we are here every step of the way!

Snazzyiron

Hi,

I have just been diagnosed and have had two biopsies, 2 mammograms, ultrasound, genetic testing, and I am waiting on my Mammoprint report. I am overwhelmed. Where do I post my diagnosis on the forum? I don't know what kind of surgery I will be having.

Thanks,

Rit

Dodes

hey rit! sorry you've ended up here, but this is an amazing group, full of compassion and experience. they've been nothing but kind to me as a "bad boob noob".

honestly, i'd start a new thread, either in this topic "diagnosed and waiting for test results" or in the "invasive ductal carcinoma" topic, as your signature indicates that's the type of cancer we share.

i'm overwhelmed too. i get my full pathology (from the core needle biopsy) report tomorrow. one thing i keep trying to remember is that this isn't the first time my BS and future team have done this, it's the first time I"VE done this.

if you haven't seen this thread, it's a fantastic resource, and it's given me something practical and necessary to focus on these past 3 weeks- https://community.breastcancer.org/forum/5/topics/...

here's a picture of the front of my binder-

they say ya gotta keep your sense of humor...

inccmd

Dodes, don't let anyone ever make you feel bad for being you. We're all different. One of my friends who has MS told me that she has to take a good dose of Xanax to get through her yearly MRIs, and she owns it. It's who she is. And she has to be in that thing for a couple of hours - made me grateful it was only some 30 minutes for mine.

I have dense breast too and gave up caffeine years ago to reduce the lumpiness. Mine is ILC. I was fortunate because the radiologist had sharp eyes and caught mine early. The dense breasts stink since it means higher risk and harder to catch on mammograms. I've been having 3-D for the last few years.

The people on this site have so nice, and I have gotten a lot of useful information and support.