Going crazy! Long so sorry!!!!

Mquara

I am 46, will be 47 on the 20th. My mother was diagnosed at age 51 with breacpst cancer with brain mets. She died at 54. I was 28/31 at the time.

I knew I was high risk so went for a baseline when I was 37. I was bad and did not go again till I was 45. Birads 1 and recommended screening every two years till age 50 then every year. When I went for that mammo In April 2015 I though for sure something was wrong because I had this large mass that I felt although I felt one similar on the other side. I saw the mammo come up on the screen and left breast was clear, white had a huge mass. I was freaking until the report came back that it matched my one from 8'years prior so they told me it was no issue. Gyno said since this spot always hurt when I ovulated and and during pms that it was likely just fybrocystic changes? I think that's what he said anyway.

I spent the next 18 months mashing, moving, pushing and prodding that spot several times a day scared it was going to turn into cancer. I spent so much time I didn't noticed that it changed until my husband felt it. Ok I am still 3 months out from when I was told again so I figured it was just changing because I either mashed it into a bigger deal or it was because I was peri menopausal.

Off to the gyno, sent early for the mammo. Spiculated mass central right breast retroaerolar area measuring 5.5 x 4.9 cm. lymph nodes are noted in central right breast measuring up to 1.2 cm. calcified oil cyst in right breast. No focal abnormality in left. U/s large hypoechoic irregular mass with shadowing at 12:00 position measuring 4.2. X 2.6 x 3.3 cm. vascular flow noted, taller than wide. BIrADS 4. That was just a general listing if what was on there.

How does this happen in less than 2 years? Core biopsy domes and also a needle biopsy of a node in my armpit very close to my breast that I could not feel. Biopsy of breast of course invasive ducal carcinoma, poorly differentiated. 10mm in greatest dimension, in-situ carcinoma is absent. Lymphovascukar invasion is not identified. Fine needle aspiration comes back RT axilla lymph node no epithelial cells or lymphoid cells present for evaluation. I am guessing that means that was not a node or she missed? For now stage IIB although if my lymph nodes come back positive I go to III.

We are going to the Cancer Treatment Center of America in Chicago on Monday. Met with a local oncologist who wants to do 16 weeks of chemo with three different meds, then surgery either modified mastectomy or bilateral if that Brca? test comes back positive after the chemo. I have not even had a pet scan yet although I assume Chicago will do one. I'm terrified I'm stage 4 and of course I am feeling all sorts of lymph node pings now, pains in my right rib area etc. but I don't understand how they can come up with a plan not knowing if there's lymph node involvement or if I have mets yet?!?!?

Oncologist did give me results the surgeon did not Estrogen receptor ihc >90%. Progesterone receptor 30%. Then she wrote her2 - on there.

Im scared, confused. She explained everything and my niece was there taking notes because I was in a fog. I'm terrified that this happened in such a short time, scared that I am going to have a pet scan that will show meta and mad because my son is graduating in June and that will be at the end of chemo and just around surgery time.

Any interpretation advise etc would be appreciated. How do I prepare for chemo and surgery? What things should I buy? Oncologist wants me to start chemo immediately after I return fromChicago unless they have other recommendations and I go with theirs. Also to note I am on klonopin. I have three teenagers and a great husband How am I supposed to still be their mom and wife through this? I still need to be ME and I'm scared I'm not going to be me anymore.

Maryanne

solfeo

Hi Mquara, glad you found us.

The waiting and "what ifs" in the beginning are the worst part of this ordeal. I was sure I was Stage IV from the get go. I had debilitating back pain before the diagnosis that radiated around the right side like my liver was also involved, among other problems. Then the first surgeon I saw mistakenly diagnosed me with "locally advanced" IDC based on her inaccurate estimation of my tumor size, and recommended neoadjuvant chemo (chemo before surgery). After learning so much from the wonderful women on this forum I decided not to follow that advice and waited until after surgery and the Oncotype DX test before deciding on treatment.

My tumor was large (not as large as she thought) and had been missed for at least five years, under similar circumstances to yours, except mine was completely missed. It didn't show up in the mammogram the day before biopsy and because my breasts were so dense and naturally lumpy it took a long time for the cancer to stand out. It had been itching for 5 years so I know it was there at least that long.

I was terrified going into my scans but they were completely clear, and despite all the above factors stacked against me, when everything was said and done, I ended up at Stage IIA with a low risk of recurrence. I didn't even need chemo, just surgery and antihormonal therapy to block the estrogen that was feeding the cancer.

With what they know so far you may need chemo, but once you have your treatment plan in place you will find the strength to get through it like so many other women have, and you will adjust to the uncertainty going forward. What you absolutely cannot do is predict an outcome at this point. I spent a lot of time worried about a Stage IV diagnosis but that was just wasted time. Probably the best advice that was given to me was try not to worry about anything that hasn't happened yet. Definitely easier said than done but it gets easier to do as time goes on.

Jennmadd

Hello Maryanne,

I love your name, it's my momma's name. I am new here also. My Grandma and mom were recently diagnosed. The not knowing and not having a full plan in place is so hard. I have been going crazy with the what ifs. I agree with solfeo about trying not to worry about what hasn't happened yet. Very hard to do, but I think it is what we need to do.

I'm so sorry about your momma and so sorry you are faced with this. You have my prayers. Please keep us updated.

farmerlucy

When I was diagnosed, I assumed it was stage iv, and would not allow myself to think otherwise. It was three long weeks before it was proved otherwise. In hindsight that was a cruel joke I played on myself, and I paid for it emotionally. I read this quote on these boards back in those dark days, " Don't go there 'till you get there." Too bad I didn't take it to heart.

Whatever it is, whatever it is, you will deal with it. Allow yourself to feel whatever you feel right now. We are here for you.

I will be five years out in ten days.

Big hug to you.

Moderators

Mquara, we're all here for you.

Please check out these topics in order to know how to prepare for Chemo:

https://community.breastcancer.org/forum/69/topics...

https://community.breastcancer.org/forum/69/topics...

And read here: Chemotherapy

At the bottom of this page, please check out member tips sheet!!!

Move one day at a time, and keep us posted!

Mquara

just updating Been at the Cancer Treatment Center of America in Zion IL since Momday, staying till next Saturday. They e been busy!

Pet scan.....only shows the breast cancer and one suspicious node that was already biopsied at home but showed no lymph tissue so it was missed

MRI showed the same

I then had another mammo for some reason, and will have neither Monday for a clip to be put in

I had a second biopsy on that node, I'll find out tomorrow. By they way "mildly prominent right axilary lymph node is seen with cortical thickness of 5mm it does have a fatty hilum. It measures 13mm shirt axis". That's from the US prior to the second biopsy. Different wording with less detail on MRI but the pet scan says something about SUV 3.2 and measuring less than a centimeter in short axis. I googled of course and while it seems like it could go either way it appears that what I'm finding is saying that this is more than likely not benign. I'll find out tomorrow, on my birthday

Monday I start prelabs, spirometry teaching(?), PT consult. Tuesday they're doing the mammography localization with the chip thing and a nuclear scan which quite frankly sounds awful when I google but I have a script they gave me for numbing cream.

Wednesday we are doing a lumpectomy. I opted for that as the genetic tests will not come back for three weeks and I want this out. If I opt for a bilateral mastectomy after tests come back I'll do that next year after treatment and after I have lost some weight. I want immediate reconstruction and they just won't do that now until lose weight.

So that's where I stand right now. Missing my kids, spent Valentine's Day here, will spend my birthday here but will hopefully go home dying a lot slower than I was when I got here !

mustlovepoodles

Mquara, I had my LX first, too. Right after that my genetics test came back positive for two rare gene mutations. I needed to start chemo right away, so I didn't have the BMX until 5 months later.

farmerlucy

Sound like blue ribbon treatment to me. Hopefully that PET result is a false positive. So glad you are feeling stronger. That first brush with our own mortality is a tough one. Take care!

Mquara

Happy Birthday to me!!!!!!!!!!!

solfeo

Positive news for sure. Lymph nodes can swell for any number of benign reasons. I'm not sure that a needle core sample can prove a node is negative though. They probably have to look at the whole thing, and possibly additional nodes during sentinel node biopsy. Did they say anything about that?

Hopfull2

mquara, sorry for you dx and that your here joining us but yay to the clear lymph nodes. Your going to be just fine. When I first got dx I too thought the worst. But just breath and at least you have one less brick on your shoulders.

Hugs

ChiSandy

Mquara, happy birthday! It’s a good sign that axillary node was negative. Still will get a sentinel node biopsy to make sure (the sentinel node would be the first one that tumor cells would reach if they do make it into the lymph system, and they figure that out by injecting a radioactive tracer &/or a blue dye—the sentinel nodes are the first ones to take up the tracer &/or dye). I didn’t get the numbing cream before the lidocaine for the tracer injection, which felt like a bee sting. But my BFF did and said she didn’t even feel the lidocaine. For me, the radioactive seed placement was a piece of cake.

Those lymph node “pings” are most likely tiny seromas from the needle biopsy. I freaked out the day before my lumpectomy when I felt a lump where there was none before—until the next day when the radiologist doing the ultrasound to guide the seed placement dictated “small seroma observed at core needle biopsy site."

The “spirometry training” is about how to use a plastic apparatus (incentive spirometer) you breathe into to make sure your lungs stay clear after any surgery with general anesthesia. Great idea to train before surgery, before you have post-op pain and might not be in any mood to use the thing. It usually has three tubes, each containing a mini-ping-pong ball, and a flexible hose with mouthpiece you blow into. The goal is to raise and then keep the balls as high up in the tubes for as long as you can for each breath. It’s a lovely souvenir you get to take home with you.

CTCA is cutting-edge and will do right by you. Its facilities are quite posh too. If you’re not from Chicago, you picked a fantastic week weather-wise—we seem to be doing a credible impression of San Diego. The chemo recommendation is probably because of your low PR % as well as your relatively young age. Good call on the genetic-mutation testing too (especially if you’re from an ethnic group—e.g., Ashkenazi Jewish--with a higher incidence of BRCA 1 & 2), given your family history. Had mine come back positive, I too would have gone back in for a BMX.

You got this—and we have your back and are in your pocket. (Metaphor trifecta).

Mquara

The node they biopsied is very close to my breast where the tumor is, fairly deep in. The original surgeon did a fine needle aspiration of it and got no node cells, this one was more like the breast biopsy with the "gun". He got three size able samples. Not sure why that is bold...lol.

Yes they will do the sentinel node biopsy while in surgery. Tomorrow I have a mammo where they will put a clip in the breast tumor, I have one from the core biopsy of the node already. Then for nuclear I have numbing cream and a plastic sheet I have to put over my nipple area two hours before and then an ice pack 30 minutes before I get the injections but they'll scan me Wednesday during the operation. Just hoping to stay where I am!!! They said they'll know in surgery about the nodes, and if they got good margins but they'll do testing on the tumor and may call me back in 3-4 weeks if they feel,more "clean up" is needed.

I have to say it's inconvenient to get here, we live in NJ, but this place is amazing. They're treating me, a person with cancer, not treating my cancer kwim? They are concerned about my mental health, concerned about my husband and how he's coping, concerned about how I am eating, if I am anxious, depressed, all of the above etc heck you can even go on the TV and put in a prayer request with details if you believe. It's just amazing! I feel so cared for.

ChiSandy

I live in the north lakefront Chicago neighborhood of Edgewater Glen, a good 40 mi. s. of Zion (the location of CTCA). But if you find yourself with time on your hands and thumbs to twiddle <g>, shoot me a private message and maybe I can head up there. If you're up to it, perhaps a little “retail therapy" at Gurnee Mills Outlet Mall?

As far as “nuclear" pre-op, there are two different procedures. One, the radioactive seed locator implantation, takes the place of the “wire localization" that until recently was standard—with the latter, you sometimes even had to go home with a wire sticking out of your breast pointing out the tumor location. I had a titanium clip implanted after the core needle biopsy. The seed locator implantation was a piece of cake for me—just a repeat ultrasound to find the tumor and the clip, a tiny hair-thin needle shot of lidocaine, the seed injected, and the Nuc. Med. team running a Geiger counter over it and declaring, “she's hot." (Should've replied “that's what he said"). The needle for the lidocaine was so thin I barely felt it, without the need for a topical.

The other “nuclear" procedure was the injection of a radioactive tracer to locate the sentinel node(s). For that one, I wish I'd have had some EMLA cream applied half an hour in advance (worked like a charm for my friend)—instead, just a little ethylene chloride as a topical, followed by the tracer injection…into the nipple & areola. That location is necessary because the ducts converge at the nipple (that's how the milk gets out), and the tracer travels to and is taken up by the first node(s) upstream of the tumor (and reacts to a Geiger counter in the OR). Then they made me massage my armpit for 15 min. to see if anything lit up on a nuclear camera photo. (They gave me a nice Americana alt-folk playlist and good headphones to pass the time). It didn't, so they sent me back to my roomette for half an hour and then took me back to the camera, where the nodes lit up.

I didn’t go to CTCA because I live quite close to NorthShore Evanston Hospital, with its Center for Breast Health and adjacent Kellogg Cancer Center (all part of the Univ. of Chicago Pritzker School of Medicine). I was also 64, and knew I’d still need at least adjuvant treatment after turning 65, when I went on Medicare. I was told CTCA requires either good conventional (i.e., private, employer-provided, or a high-end ACA plan) health insurance or a massive cash deposit—not Medicare. We had enough of the latter, but with such good care a <20-min. drive away (and which also accepts Medicare), I didn’t see a need to drive so far north. Ironic that you traveled all the way from NJ—but people do come to regional CTCAs from all over. Any reason you chose the one in Zion, IL rather than Philly? (Was it the oncology team led by Dr. Citrin)?

Mquara

Sorry for the delay. Hurting a bit.

ChiSandy - I went to Chicago because Philly didn't take our insurance- crazy - lol NUclear scan was fine just a little sting. I had the radioactive chip inserted into my tumor just before that and that hurst worse but that wasn't much at all either,

In any case surgery was on Wednesday. The feel like they got good margins, she said the tumor was massive and was laughing I asked if she had taken any pictures because I wanted to see (No lol) She removed 3 nodes and all three were negative! This included the one they did the core biopsy on a few days before. We flew home friday night. Right now just healing and I go back on 03/27 for follow up. ay or may not need more surgery when final pathology is in, won't know till then. I know I will need radiation but I won't find out about CHemo till then either.

So where I am right now Stahe IIA acording to Oco at CTCA or Stage IIB acording to Onco here.Thats based on tumor size alone. was 5.5cm x 4.5 cm x 2.5 cm. No ifiltration to chest wall or skin. Partial mastectomy was successful. Still swollen, have two drains in and in a lot of pain but spirits are HIGH now that I have a clear pictrure.

I apologize for the gibberish - I am on pain meds and my fingers are not cooperating lol So I guess I am Stage IIA/B grade 3 0/3 nodes ER/PR+ Her-2 -

solfeo

It sucks to have cancer, but now you can see that it is possible to get good news along the way. "The worst" isn't happening so far and with those negative nodes your picture gets brighter every day.

I avoided chemo at stage IIA but I had a low grade tumor. Did they say anything about Oncotype or similar testing to help determine whether you will benefit from chemo?

I believe you will need radiation with an over 5cm tumor, even with the mastectomy and negative nodes.

wallan

Hey there:

Been reading your posts. I am happy to hear you have some answers and that you are being treated so well at your cancer care centre.

I am sorry about your mom. I can imagine how that weights on your mind with your own health. You are different though and I think you are in excellent hands with your health care team.

i wish you all the best and am glad you have found this site. It is awesome for info, support and encouragement.

Hugs to you.

wallan

Mquara

Back to update - all pathology is in.

Good margins on the lump, nothing has changed there but patchy necrosis prsent, unfortunately final pathology found micromets .3 mm in greatest dimension in one node, and isolated tumor cells in a second. The third was still clear

ER+ (99.9% was originally told 90%)/PR+(16.4% lower than the 30% I was originally told unless I am interpreting this test wrong) HER2 Equivocal. Assuming that means negative it came back the same as on my original pathology when they did the biopsy.

KI-67 HIGH 32.2%

Ocontype DX 31

There goes my hope of avoiding Chemo. Still a stage IIB though as my tumor came out smaller than 5 cm at 4.5 x 4.0 x 3.5.

I went for my wig fitting Saturday. That sucked. I go back to CTCA the 27th, go over everything and start chemo that night. They are letting me do rads at home as they already called the local center who called me but I am not clear on the timing of that yet so I told them I'd call back after I came back from CTCA.

Chemo question - I don't see anything on my schedule about them doing a port a cath or power port. Are they required for everybody or maybe they're just doing this first cheo IV and next trip I'll get the cath? Also any good tips for the wigs, scalp sweating etc or any head coverings people have found that they love? I HATE wearing hats amd I am scared the wig will feel like a hat so I am looking for a head covering that is soft and light etc.

@ Feeling negative and down today. I'm sorry.

solfeo

Hi Mquara. It's certainly nothing to be ashamed of to experience a down moment after receiving the news you need chemo. I'm not going to be a lot of help there because I didn't have it, but I'm sure there's a March Chemo group on the Chemotherapy board that would welcome you with open arms.

I wasn't as certain that I didn't need chemo as you are that you do (some gray areas in my case), so I can see some value in having a clear cut choice vs. being told no one knows for sure and it is up to you to decide. Of course it's always all up to you to decide, but now that the choice is made you can focus on putting one foot in front of the other until you get to the other side. The hair part wouldn't have bothered me, but everyone is different, and I have seen a lot of women say that was the worst part for them. Don't worry your feelings are not at all unusual.

Wishing you good luck and great doctors, I'll be rooting for you!

mustlovepoodles

Mquara, Sorry you have to do chemo.  I had a port for mine--my veins in my non-BC arm are terrible and I didn't want to have them digging around every time I needed bloodwork or chemo. You can talk to your MO about whether it's right for you.

I didn't find chemo to be too awful. I mean, it wasn't fun and I had some hiccups along the way. But it wasn't like they show on the movies or TV. I never threw up. My skin actually looked pretty great, in fact. I bought my wig about a week prior to the first chemo; my hair fell out on Day 17.  I don't wear hats, but I did buy some beanies and a head cover to wear at night (my head got cold at night.) I tried some scarves but I could never get them right and they always felt like they were going to fall off.  I decided to really go wild and bought a hot strawberry blonde wig.  It was a really good one and it was easy to wear.  Plus, it looked great!  People I didn't even know used to come up to compliment me on my hair, some even asking whether I colored it myself or had it done in a salon ("Salon!" LOL).   I wore my wig pretty much anytime I was away from home; it was comfortable enough. At home, I wore my beanies--I was never comfortable walking around bald, even in front of my husband.

solfeo

Regarding the HER2 equivocal result, that is the gray area. Same thing happened to me after the biopsy, and what they had to do was run a different kind of test to determine if I was negative or positive. You will see the acronym (FISH) after HER2- in my signature. I was ultimately HER2-.

Find out what kind of test was run (should say in the path report) and if it says immunohistochemistry (IHC), then they are probably running the FISH test automatically, but you should ask about it if they don't bring it up. The Oncotype report also gives your HER2 status, but that is a different kind of testing and I have seen an FDA report indicating a high rate of false negatives from the Oncotype. Mine showed clearly negative.

Don't let a possible positive HER2 result scare you more. It's very treatable. My aunt was diagnosed in 2009, and after chemo and herceptin she is as good as gold 8 years later. Literally the healthiest person I know. HER2+ breast cancer is not the gloomy prognosis it used to be.