Just diagnosed yesterday

bridgegal25 · January 2015

Hi there -- not happy to be here but seeing how great this site is I felt I had to join.

Dx'd yesterday with Invasive Carcinoma. Following is how the pathology from the biopsy reads:

A.Left breast at 3:00.Core biopsy. Invasive Carcinoma. Moderate to poorly differentiated measuring 8mm in greatest dimension and involving all the submitted cores.

B.Left breast at 4:00. Core Biopsy. A small focus of invasive carcinoma measuring 1mm in greatest linear dimension.

Both tumors are morphologically similar. Breast cancer marker tudies (ER, PR,Ki67) will be done on blockAI at the Valley Hospital lab and reported separately. Her2/neu by Fish will subsequently be done and also reported separately.

Have appt. with breast surgeon l/23.So can't get my staging until she does surgery. Had uterine cancer 11/09.Had complete hysterectomy with no further treatment needed.

Strong ER of 99% positive. Progesterone - same as ER..Ki67 borderline. Her2 test by Fish is pending.

Any feedback is appreciated. Scared it could have metastizied already. Wasn't there four years ago when I had a mammo and ultrasound.

Moderators · January 2015

Welcome bridgegal, We are sorry to learn of your diagnosis but so glad that you reached out to our community. There is a wealth of wisdom, shared experiences and support offered by our members. While you are waiting on some responses you may also want to check outPathology Report - a booklet on our site that helps to explain the results of pathology. Keep posting and tell us how you continue. The Mods

bridgegal25 · January 2015

Thanks Moderators. This is an amazing site and before dx I browsed a lot. This is some complicated disease. I did go to your Pathology Report on this site, but was unable to fill in the grade and stage because my understanding is that these things are staged when the breast surgeon does the surgery. She is the next one I see on 1/23. And then she will prob. tell me I need a lumpectomy to take the "thing" out, and from what I have heard, that is where the staging comes in. I am older,way over 60 and am hoping that I will hear her say that in older women, this IDC is not aggressive. I did post as much info as I could into my first post and that is pretty well all the info I have up to now. Initially I was happy that the two "masses" which were called "architectural distortions" were tiny. Now I see from information, that the size doesn't matter so much. If I am incorrect in this assumption, would love to hear from anyone who has been on this roller coaster ride. Thank you for this amazing site which most of us would rather not be on.

hummingbirdlover · January 2015

Hello and welcome! Not a place you wanted to be a member of, I know but here we are are and at least you can know that you are not alone! I'm especially sorry that you are having to deal with cancer a second time. Your initial pathology looks encouraging - it looks like the tumors are small which hopefully means they were caught early. It is also good that your cancer is hormone receptor positive. One thing I would recommend is that once your surgery date is set, you join that month's surgery sisters thread. I was part of the October surgery sisters and they were an awesome source of comfort and support. The first few weeks while you're waiting for tests and results is agonozing but once you have a clear treatment plan in place, it does get easier. You are correct in that they can't confirm you stage until after the final pathology report is in. It will depend upon many factors, the actual size of the tumors and lymph node involvement. I wish you all of the best. Take it one day at a time and try to breathe.

bridgegal25 · January 2015

Thank you Hummingbird for your words of encouragement. This site is so amazing with so so much info. And thanks for the recommendations.. Me being me am going over the path report with a fine toothcomb and attempting to find info that way. On the 8mm mass, the poorly to differentiated description doesn't sit well with me, having done some research. This mass says "8mm in greatest dimension and involving all of the submitted cores" Confusing -- does this mean that the radiologist submitted the whole mass instead of a piece? "all sumitted cores" is throwing me a little bit and that's where I am confused.

Also they say "invasive carcinoma" with no mention of what type of carcinoma. I am aware that there are different types of carcinoma.

After having spoken to the radiologist office (head nurse), radiologist has the flu -- she told me that everything will be explained after the breast surgeon goes in there and actually sees what it is there. So this waiting in limbo is hell. A shot of vodka sure does help. LOL. but I am one of those people who needs a little more explanation and since I don't meet with the breast surgeon until the 23rd, am left wondering and waiting, like 80% of the women on here.

And...I also realize that regardless of the size of the masses, it's the lymph node involvement that really counts. Again, thank you for any information that I can get.

Dede22023 · January 2015

Oh...the waiting is the HARDEST!! I'm so sorry you have had to join this site, but just the short time I've been a part of it has been extremely helpful to me. Get all the answers you need...KNOWLEDGE IS POWER!! Sift through it until you understand it...that will put you in a better place. You may not have control over the wind, but you can adjust the sails. Am praying for you tonight, bridgegal. Many Blessings...

proudtospin · January 2015

sorry you are here, my best advise is to chose the best set of docs you can find and for me, I needed someone who could talk to me..in English in my lingo and explain or reexplain all the info.

get your questions lined up and ready

you mentioned Valley Hospital? is that the one in NJ? if so, it is dang good

bridgegal25 · January 2015

Hi Proudtospin. Thanks for the msg. Yes, Valley Hospital in Ridgewood, NJ. 10 mins. from my house. The gal I am going to see is head of the Breast Center at Valley. Highly recommended. I am taking my two children with me and of course, my tape recorder. Have a lot of experience unfortunately, since I lost two husbands to this disease and have had early stage uterine cancer five years ago. This disease is testing every bit of strength I have but I have decided that I will be the winner. From your "name" on here, looks like you spin. I workout about five times weekly with walking on treadmill and weight training.

proudtospin · January 2015

sounds like you have been through a lot but you are lucky.....in that you have a great set of docs and hospitals around you

me I did rads at Hackensack but I had a pal who was initially treated at Ridgewood, got a second opinion at MSK and went back to R as it was the same

yeap I do spin~~nutty but I try to keep up, it is a relief at times, I do spin..slower!

I am retired so if you need a driver or such, let me know !

bridgegal25 · January 2015

Thank you for the driver help. I am fine. Very healthy, drive all over the place and intend to say this way,. This "thing" in my left breast is not going to get me. Good for you on spinning. I thought of trying but not confident I can keep up. Girl friend loves it and goes daily.

bridgegal25 · January 2015

To Dede 22023. Thanks for the encouraging words in this journey none of us wanted to take. I wish you well on this trip. Shirl

Msqueen57 · January 2015

if you haven't already, have an MRI of your breast. After my initial diagnosis, one was performed on me and very early stage cancer (stage 0] was found in the other breast. Needless to say I had a double mastectomy.

voraciousreader · January 2015

While you are waiting....register at the NCCN website and read the professional version (red logo) of their breast cancer treatment guidelines. Read the footnotes and discussion found on page 100 and beyond as well.

I wish you well!

Hopeful82014 · January 2015

Hi, Bridgegal-So sorry you have to join us, especially after all you've already dealt with. It is good, though that you know the ropes and like to do your own research. That tape recorder will be a great tool. I have all of my consults on my iPod and find it VERY helpful to listen again, index note certain discussions, etc. Regarding the reference to "all submitted cores" - that's a reference to the numerous, individual pieces removed during your core biopsy. Each one is reviewed. I hope that helps a little bit. My apologies for the run on paragraph but the iPad doesn't do paragraph breaks on this site, apparently. (Hang in there-we all know how long these days and nights waiting for consults and results can be and are always available to commiserate. Feel free to btch and moan and whine as much as needed.)

greenae · January 2015

Hi All

Bridgegal, I think we got on the same boat? I was warned after US on 01-02 that my US-visible only mass didn't look good. Had core biopsy 01-12, and received my core biopsy results 01-15. Invasive ductal carcinoma, moderately differentiated. 8mm non-palpable mass at 10:00, left breast, and small area of focal asymmetry on mammo. My appt with breast surgeon is 01-28-15. Radiologist recommended bilateral MRI...and I am so freaked this IDC is everywhere. My PMD gave me Ativan, but I don't want to take it...and I am fighting panic every minute that I am not busy. Is it OK for me to say THIS SUX! ? Ok, I feel better. I guess this waiting to really know is the worst. So, I am going to try and stay busy til the 28th. If all of you are managing to get through the, so will we! Hugs to All!

Hopeful82014 · January 2015

greenae, I'm sorry that you're here. Yes - it sucks big time. No doubt and no argument from any of us. The waiting is particularly miserable in a way that I don't think anyone can appreciate until it is experienced. You might see if you can get info on your hormone receptor status. That will give you a few clues about the general outline of your particular cancer and treatment. in the meantime, at least consider taking a bit of Ativan at night. I cut mine into .25 or .50 mg pieces and find that it helps a lot. I don't use it every night, or even every week now, but in the beginning it was a lifesaver. Hang in there.

greenae · January 2015

Thank you, Hopeful! I did want to know more about my path core report, but that's all the radiologist gave me. I may try to call back the Imaging Center monday? Shouldn't they give me complete results? Wondering if that complete report goes to my PMD? I have to know EVERYTHING. So I know what to pray for. All this info, all the looming tests, all the options, all the waiting...ugh. Thank you for the Ativan advice. I did take 1mg last night and it made me too stupid and groggy. So I will try cutting in half. Working hard on my attitude. But I still feel like I am in the Twilight Zone

Hopeful82014 · January 2015

Green, you ARE in the TZ - at least for now. I hope the smaller dose of A. helps; I think I've only taken a full mg. once or twice as it does tend to linger, despite its description as a short-acting drug. (Oh, the things you learn w/ BC)

As to your path. report - Yes! You are entitled to it and it's criminal how stingy some MDs are. You probably can't do much over the weekend but I would call your MD on Monday; they will have the complete report, if it's finished. Mine faxed it to me at home. I found out she had out and out lied to me about not having any information other than the bare bones 'your biopsies were malignant'. If yours will fax, or scan and email, great. Otherwise, 1) Stop by the office and tell them you're there to pick up a copy 2) Call the Imaging Center and ask for the easiest way to get a copy.

My original path report didn't have all the fine points - it had the Nottingham score (really depressing) but not the hormone receptor status info, which was somewhat more encouraging. My surgeon had a copy of the addendum waiting for me when I met her for the first time a few days later.

As a rule of thumb, just tell your MDs that you need copies of everything. Most of them are happy to give them to you but won't necessarily volunteer them. If any provider gives you push back you might want to think carefully about that relationship.

Start a file now, before your desk is hidden under all the paper. There's a good discussion of organizing all of it under a thread titled something along the lines of "Just Diagnosed - get ready"

I make copies of all my new patient paperwork, too. That way if there's an error in the records I can track down its origination, keep track of what MDs have asked for what information, etc.

I also record all of my consults and download to CDs which I download to my iPod. You might read my note to Bridgegal, up the page. You can record on your phone but I'm not sure how easy it is to save that to another medium.

You've just stepped onto a really nasty roller coaster, green. The waiting is excruciating and you will NOT get all of the answers at once. You get a little bit of hope and then you get another piece of info that isn't so encouraging. You will hear lots of rot about how it's an opportunity to grow and reexamine your life. You will mourn, you'll be afraid, you'll rage at the limited choices, all nasty, for treatment. Those are good, healthy responses to this and don't let anyone else tell you how to feel. Go with it.

Early on in planning my appointments I made a list of my concerns and priorities. Anytime I felt that an MD was dismissive of any of my priorities I tried to explore that further with them. If they persisted, I re-evaluated whether I should work with them. I changed surgeons twice. All of that was truly painful but as I look at my list now, I KNOW it was all for the best and that the choices I made in Sept./October were all in my best interests and that some of those providers I saw early on did NOT have my best interests at heart. Listen to your own voice. Give yourself time to explore your needs. Don't be rushed into anything.

Sorry to go on so long but I hope some of this helps. Let me know if you have other questions I can answer at somewhat lesser length. Take care.

greenae · January 2015

Hi Hopeful Thank you for your thoughtful and detailed response. It really helps me. I already have a binder with my reports, CD's and journal in it---I am a bit OCD . And I changed to a new PMD because my old one kept screwing up with my insurance. I am furious with my Gyn because she wouldn't give me the referral for the biopsy until I saw Her surgeon. WTH! This is my cancer. I will pick my surgeon. So I got the new PMD to give me the biopsy referral (and the Ativan)

I had an episode of post menopausal vag bleeding in November, and had a uterine biopsy and transvag US. Turned out I have a hemorrhagic ovarian cyst, no uterine ca. Weird at my age. Told gyn, let me get a mammo while I am at this testing...so now she takes credit for catching the BC, and wouldn't give a referral for a biopsy?? So I get the whole comfort with the MD's issue. So important. I must be able to trust my Healthcare Provider.

I see the surgeon in 11 days. I hope I am comfortable with her. I will be going to NYU. I know I shouldn't rush things but I so want this over with, and I don't even know enough yet. Sure would love to fast forward the calendar to August.

I will be hounding the Imaging Center Monday or Tuesday to get my complete Path report. I think the waiting and lack of control right now are my worst enemies. Going to divert myself from all these scary thoughts with some laying on the couch updating my Spin Instructor Cert. I am so mad at this BC. It has taken over the past 3 weeks of my life, and I will fight hard to be "normal." As you mentioned, I don't want a "journey" or some kind of "enlightenment" or "life lesson." I FEEL FINE...and I want this to Go Away. Thank you so much, Hopeful!

bridgegal25 · January 2015

This is a tough ride to take but has to be taken. I always wonder to myself how my grandmother and my mother lived to be in their late 90s without ever going for mammograms and yes, colonscopies. What if they had cancer in their bodies and never knew it and it never grew and they lived their lives normally. I am over 70 and thought twice about going for a mammo since my oncologists for the uterine cancer told me not to bother any more since breast cancer in older women is not that aggressive. So I went and started the roller coaster ride. All of this being said (I am ranting here) my greatest fear is the spread of this thing. We don't know until the surgeon does what he or she has to do and then we wait again.I am prepared for my breast surgeon appt. Have notes, questions, and of course, my tape recorder. I have heard good things about the surgeon I am about to see. By the way I do not take Xanax to calm myself but an old med called Donnatal which calms my stomach down. I have IBS. and it sure does help. Also a shot of vodka here and now does the trick. I have gone over my path report with a fine toothcomb. I am ER and PR strong positive. Have good Ki67 readings, but am waiting for HER2. If I knew for sure whether this "thing" is just confined to my breast only I would be a much happier camper. I also was on HRT for 20 odd years -- that probably did it a well as giving me uterine cancer. I also would love to find out if having no reproductive organs (had a complete hysterectomy five years ago) is a good thing at this time but haven't gotten any info on that either. I also am getting night sweats and am wondering if this has anything to do with the "thing". Prob. not but am changing to a pillow wih only cotton material.Now with every ache and pain I have in my body, I imagine the worst. My other breast is now aching -- it probably ached before the diagnosis but never noticed. Now I am aware of every little twinge. Sorry for the rant but thought I would just put down on paper what I am feeling at this horrible time.

greenae · January 2015

Hi Bridgegal

You, Go GIRL! I would like to rant, too! And I am sipping red wine, as my young adult stepsons have a party downstairs, while I pretend everything is FINE! ugh. My husband is in Fla golfing, I told him last night and told him no need to come home, as I am in BC LIMBO, and haven't yet told my 3 stepsons (live with us past 11 years). It's saturday night of a 3 day weekend, I can't feel happy, but I can't act scared/sad. So, I will sip my wine and play around online. I think I have put in a good 40 hours researching since that phone call 12/29, telling me I needed a diagnostic mammo and US. That changed EVERYTHING.

Hopeful82014 · January 2015

Yes, I went cold went I got the phone call. I don't think I felt warm again for weeks. I was so shocked, so totally unsuspecting.

Greenae, I think some focussed spinning would be a great way to work off some of the rage. Do you have the equipment at home by chance? And yes, it's a shame that the holiday weekend is wasted this way.

Bridgegal, it's good that your Ki-67 is low. You MAY be a candidate for lumpectomy, radiation and an AI, no chemo. My Ki67 was quite high; a month on Femara brought it way down so I know it's working well for me, which is pretty reassuring to know.

I hope you can both get some rest and some oblivion tonight. Tomorrow you will be one day closer to filling in some of the blanks in the big picture.

bridgegal25 · January 2015

Hi Greenae -- I think you and I have very similar diagnoses. My biopsy says 8mm also with another 1mm "small focus" of IDC right next to the 8mm mass. However, these are all in the same area of two previous biopsies. So at first I thought they were scar tissue. Showed up on mammo and US as "architectural distortions".. Left breast. Of course this breast after biopsy done almost two weeks is itching and bruised still. I have reflux on that side so now of course, with my imagination running wild, it is metastisis. The mind plays tricks after this dx. Some mornings I wake up feeling so positive and others there is that horrible feeling of negativity. I see you are in the city -- great hospitals there. I am in NJ but Valley Hospital is a few mins. from my house so opted for that instead of going through the hassles of travelling to NYC. I will post results from whatever the breast surgeon says on Friday. Let's stay in touch with each other and talk it through. We will get through this. By the way, without having met with a doctor yet, how do you know yours is a Grade 2. They did not put any grade on my biopsy report.

bridgegal25 · January 2015

Hi hopeful -- thanks for your reassurance. So glad the meds are working for you.Yes, I have been shivering since I got the dx. But I am also eating myself out of house and home. Have gained 4 lbs. in a week. I wish you the best. I will post as I go along on this journey I never wanted to take and thanks for staying in touch. Shirl

greenae · January 2015

Hi Ladies---I think I will make a huge effort to minimize my research and moping/freaking today. (lol) It's raining so hard, I may skip the gym, and instead finish my Spin recert, and organize my binder. Bridgegal, I spoke with the radiologist who read the mammos, and performed the 2 US's and the core biopsy. My report, so far, says Malignancy, 8mm at 10:00, IDC with cells "moderately differentiated." Three core specimens removed and a marker placed. She said something about a "6," so I made the assumption (perhaps incorrect?) that it is Grade 2. The complete report is not yet available, and I will be all over that later this week. Part of me wants to know this minute, and part of me wants to forget about all this for today. I am having the opposite problem with eating. I am not hungry and have lost 5 lbs since 12/29/14. The only good so far, as I could stand to lose 5 more. I am going into the city from Staten Island because 2 family members have been pts at NYU, and their care was Excellent. My husband is retired, so I have a driver, and I am so lucky to have 3 sisters and 3 close friends who will help me through this. I am the first-born, bossy, know-it-all big sister so I can't let this get me down or mess up my role in our family dynamic. I have lived through the loss of a child...this is nothing compared to that. Gonna put on my Wonder Woman costume (ok, not really-lol) and beat this crap!

greenae · January 2015

Good morning

I know it's crazy to try to plan when I haven't seen the surgeon yet. But can anyone give me some kind of timeline from the surgeons visit to surgery, then radiation, possible chemo and recovery? I am wondering if I can register for The NYC BikeTOUR in May?

I know, Call me CRAZY.

proudtospin · January 2015

hmmm, I had my plan but since it was based on a thing of "do this before work gets busy etc" it did not work out! until they get into the biopsy and really know what is needed it is hard to forecast. I flunked my mamo on my birthday in May, was sure all would be done before my work got busy by back to school but the big C had dif ideas and I ended my rads on Christmas Eve. Note, I had 3 lumpies, 8 weeks of rads. I never needed chemo.

greenae · January 2015

Thank you, proudtospin. I am proud to spin, too. Just recerted my instructor status last night, and am headed to the Y at 5p. Trying so hard to be normal. Spent the morning trying to get my pathology report. No luck. Maybe it's too soon? It's been a week since my core biopsy. The prelim results were back in 24h, but of course no one told me til I called 3 days later. I am anxious to know my cell types, and hormone receptor status. So it sounds like 7 months for you? I hope you are doing well!

I just feel like I could function better if I have Some idea?

Thanks for your help!

proudtospin · January 2015

Green...I have done the NYC bike tour and I say go for it! register and it will be your goal! we are all dif on what we can do but it sounds like you are in good shape to start so that is on your side

greenae · January 2015

You know what, proudtospin? I think I will. It will be my third. I am 57, and feel FREAKIN FINE...that's why I am having so much trouble with this.

proudtospin · January 2015

Follow docs orders, eat healthy, get as much exercise as you can, sleep as you need. You will get tired but that is to be expected. I made huge pots of soup and ate it for dinner most nights! I discovered Kale before it was cool! I lived on Kale and veggie soup

you are healthy now so that is in your favor

I was about your age at diagnosis. I worked throughout at a desk job but drove 36 miles up the NJ pike for work every day.I got through it all! You will too

Just diagnosed yesterday

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