New to site, recently diagnosed

DarlaJ

Hello to all. I had my very first mammogram a few weeks ago at the age of 46 and they had me come back for another one, then an ultra sound, then the biopsy. The only person in my family who has had breast cancer is an aunt on my mothers side of the family. I have been so nervous since I got the news, and now I have to wait one week to see an oncologist. I am hoping they can simply remove the lump/cancer with no chemo or radiation since it is small ( 1.1 cm)  I am single and I work as a para at an elementary school so I cannot afford to miss any work..  I know I cannot get all the answers from this site since every situation is so different, but I would like to hear opinions from anyone familiar with my diagnosis.   

Here are my results:  

Diagnosis: Right breast core biopsies:

Histologic type: Infiltrating Ductal Carcinoma,

Histologic grade: Nottingham Grade 2,

Glandular formation: 3/3,

Nuclear Grade: 2/2,

Tumor size: 1.1cm,

Microcalcifications: present within malignant areas,

Lymphovascular invasion: Not Noted,

Host Lymphocytic response: Non-Brisk

any advice is appreciated. Sincerely, Darla

lintrollerderby

Hi, Darla. Welcome and I'm sorry you have reason to be here, but glad you found us. Do you know yet whether there were Estrogen Receptors (ER), Progesterone Receptors (PR), and an abundance of HER2 in your tumor? The answers to these three characteristics will guide your treatment path. 

I will say that while chemo depends on the above-referenced characteristics of your tumor (in addition to other factors), if you are wanting a lumpectomy instead of a mastectomy, then radiation is a given. Standard of care for lumpectomy is for it to be combined with radiation for invasive breast cancer. 

Please feel free to ask any questions you can think of. 

Best wishes.

Puffin2014

So sorry you're finding yourself on this forum. I was diagnosed in May with IDC 1 cm, stage 1 grade 2 ER/PR+, I had a lumpectomy, my oncotype score was 27, considered hi intermediate for reoccurence. My onc recommended chemo, which I started last week, will have 3 more 3 weeks apart, and with each I'll have the neulasta shot to stimulate my bone marrow to make white blood cells, which my blood test indicate it has. And as lintrollerderby wrote, I'll be having radiation when I'm done with the chemo as that's standard with a lumpectomy. My surgeon told me the reoccurence rate for a mastectomy and a lumpectomy with radiation were basically the same, just a couple percentage difference.

Only you can make the decision for what's right for you, education is power so ask lots of questions, and record your Dr appointments to review later, I used the voice memo feature of my iPod. I wish you the best.

Moderators

Welcome to BCO.

The waiting, most agree,
is worse than the tests, so we sympathize. There doesn't seem to be much other
than keeping busy, to help decrease the stress. People here have been through
it too, so sisters will be willing to offer advice. Our thoughts are with you.

Besides sharing your
experiences and learning from other members here at the boards, you may also
want to take a look at the Breast Cancer 101section from the main site, designed to
help you sort through all of the information on our site to find what is more
relevant to you right now.

Also reliable information
on IDC —
Invasive Ductal Carcinoma where you'll learn about symptoms, diagnosis, treatment, etc.

We hope this helps!

The Mods

MomtoIrishQuads

Darla,

I'm so sorry to hear of your news.  

I was also diagnosed with IDC in May.  I ended up having a lumpectomy and about to start radiation.

I think you are missing some very important information which you will likely have soon to make the right treatment decisions.  The oncatype test along with the hormone receptor info. will guide your treatment.

I was very high ER (estrogen) positive, slightly positive on progesterone, and was HER-.

The other key information needed is whether or not it has spread to your nodes.  I had a sentinel node biopsy prior to deciding what to do (lumpectomy vs. mastectomy) and it was negative so I proceeded to a lumpectomy.  My oncatype score was in the intermediate range (which unfortunately 40% of all patients end up in) and the research is not in yet as to whether or not chemo is effective.  I tried one chemo session and dropped out because the side effects for me were bad (but they aren't for everyone - you never know).

Regarding your questions:  lumpectomy is not bad at all (I've had two since this is my second time around), the sentinel node biopsy was more sore (under my arm - it pinched) - and the radiation isn't bad at all (or at least, it wasn't for me last time around).  I think you wouldn't miss much work.  With radiation - you just go in for 15 minutes a day - you could do that over your lunch break (if you are close enough) or after school.   Yours looks like Stage 1 - and if all the other things line up (HER -, and a low/low middle oncatype) - you won't have a bad time of it at all - that's the good news.

MomtoIrish/Deb

lintrollerderby

MomtoIrishQuads: OncotypeDX is not always run. If a tumor is either Triple Negative or HER2+ (with any combo of hormone receptor status), OncotypeDX is not offered. 

lyzzysmom

Hello Darla, So sorry that you find yourself here and that you are going through this stressful waiting period. It can be confusing as there is so much info.at first but once you see your oncologist and can move forward with a treatment plan you will find that  there are ladies here who already have or will be having similar treatments along with you. They are always here to advise, listen and support each other.

As Puffin said, education is power, so If you can it may be helpful to take somebody with you or take a notepad or recorder to the oncologist and maybe make a list of questions before you go. Its so easy to forget some of the things that you want to ask when they are explaining so much to you.

Everybody is different so this is just my personal experience but  I found the initial core biopsy more painful than the lumpectomy. I had a lumpectomy for a 1.5 cm tumor and the surgeon only removed 1 node for testing . It was done under day surgery/general anesthetic and there was not a lot of pain afterwards.

Based on the final pathology from the lumpectomy (positive for estrogen) they decided  it would be appropriate to send what they removed for an Oncotype test to evaluate the likelihood of a recurrence without chemo. Mine came back low so the plan was for no chemo, just radiation and then a daily pill as it was positive for hormones..

Radiation sounds scary but it isn't. I go for just 10 minutes in the morning apart from the first day when they did the simulation (set up) and most of that time is spent just getting into position on the table. It can make you feel tired as it goes along so I was told to eat plenty of protein for energy and try to exercise even if its just taking a walk. 

Anyway I just want to wish you the very best!!  BCO is a great community for support and info. and there are some wonderful ladies here.

msphil

hello honey waiting is the worse, I thought I would lose my mind waiting but I am still here 20 yrs later (Survivor, Praise GOD), u are in my prayers sending hugs!!!!!!!!!!!!!!!!!!!1msphil(idc,stage2, idc, L mast, chemo and rads and 5 yrs on tamoxifen)hugs coming your way!!!!!!!!!!!!!!!!!!!!!!

DarlaJ

Hi everyone, and thank you so much for your responses. 

lintrollerderby, My results didn't show anything about 'Estrogen Receptors (ER), Progesterone Receptors (PR), and an abundance of HER2' I wonder why that wasn't given to me...? Is that something I'll find out at the oncologist appt ? 

Puffin, it looks like your diagnosis is similar to mine. thank you for the advice, and recording the Dr. visits is a great idea. My mother and sister also plan to go with me to the oncologist.  Momtoirishquads, you mentioned whether or not it has spread to my nodes.. should that result be shown on my diagnosis where it says: 'Lymphovascular invasion: Not Noted' and if so, then why does it Say "Not Noted" on my lab results? that kinda worries me...

lyzzysmom, thank you for sharing your experience. It does make me feel some relief when I hear radiation isn't as bad as most people think. I've already changed my diet, I'm staying away from alcohol and cigarettes and exercising more. And Thank you msphil for your inspiration and prayers. Although I keep trying to ignore this and act like it's just a bad nightmare I'll wake up from... I appreciate this site and msg board.

Ridley

Hey Darla - sorry you find yourself here.  This site is great though for any questions you have along the way, or just to vent to people who understand what you are going through,

You may not have any more info until surgery - I didn't.   Once the surgical pathology comes back, all of the info you have noted above will be there, including lymph node status, as they will remove a couple during surgery to check,

Standard of care with a lumpectomy is radiation, so I would start to get your head around that (if you have a mastectomy, sometimes you don't need radiation, but it also depends on the location of the cancer and whether you have positive lymph nodes.). Your surgeon should explain the options to you.

FightLikeAGirl72

Darla,

Sorry you have to join the club.  I was diagnosed within the last week as well.  My story is a little different.  My cancer showed up as DCIS with infiltrating characteristics.  Basically, it meant one of my lymph nodes tested positive for cancer and they undersampled my breast tissue for biopsy.  My path report shows that my cancer is both ER+ and PR+.  I am also a Grade 2.  I am awaiting the HER2 report.  My breast mass is tricky because it is a fibrous mass with cancer.  From what I understand, the actual cancer mass may be smaller than the 3.6 cms. that appears on the mammography report. Whatever the case, I know, I have breast cancer.  Because of the node involvement, I chose to undergo a bilateral mastectomy.  My breasts are small and my mass is big, so if they were taking one-side, they might as well take both.  I will have four months of chemo, followed by six weeks of radiation.

There are a few of us here, who like you, just received the news.  Please feel free to PM at any time.  All of us, are more than happy to help in any way we can!

Kris

lintrollerderby

Darla, the biopsy will oftentimes yield results on ER, PR, and HER2 status, but it would be something to ask the oncologist as it is one of the most important factors in determining your course of treatment. 

No, lymphovascular invasion is not the same thing as having lymph node involvement. Usually, if it's not noted on a report, it means the pathologist didn't see any signs of it. 

DarlaJ

thank you to everyone for your info and kindness. Right now my mind is racing and I don't know what to do with myself. I don't know how all of you made it through this. people say I'm a strong person but this situation is so foreign to me. Xanax is helping me a little, but I don't want to start relying on it and getting addicted. Kris, you said you were diagnosed within the week and you already know your treatment plan... that is fast . you must have some good doctors where you are. I have to wait to see an oncologist on thursday. I just want this to be over. I wish all of you the best. 

glennie19

Hang in there, Darla. It's really hard,, but you can vent and bitch all you want over here.  We understand!!

diva77

Darla the waiting is the worse. Be strong and know that we are all hear to listen, laugh, and cry with you!  Sending you ((hugs))

DarlaJ

thank you Glennie and Diva,  I'm doing my best but I've had severe depression since 2008 when my brother ( and best friend ) died from an overdose of methadone. I was the one who found his body. the last 5, almost 6 years have been a nightmare for me. I don't think I'm as strong as all of you . I'm trying my best though.

Darla

SailingWind

Information, knowledge is power. The more you read the clearer your questions will be. Keep us up dated.

Ridley

Darla, I'm so sorry about your brother.  Adding this to the mix has to be very difficult.  One thing to remember is that you don't have to be strong, you just have to show up.  Assemble a good medical team that you trust and let them guide you through.  I'm not saying not to be informed (I have my own little binder with all of my results, etc), but you don't have be strong all the time.

I had a very long diagnostic process and found that the waiting was the worst time.  Once I had the final test results that confirmed my treatment plan, I could relax a little and the anxiety started to fade.

I encourage you to make an appointment with the physician working with you re the depression.  They may be able to suggest something to help.  And these boards have been a lifesaver for me.  Hopefully they will be helpful to you as well.

Take care of yourself.

tequillakma

Hi everyone!

I was recently diagnosed with DCIS.  The diagnosis came very quickly.  I had my first mammo done on a Tuesday, the second "closer look" mammo on Wednesday, the biopsy on Thursday and the result on the following Monday night.  The following week I had the lumpectomy done and I'm recovering now. Of course I'm upset that cancer got a hold of me, but overall I'm glad that it was caught early.  As I'm still in the healing process, I did not yet start radiation (I was told that I would not need chemo) and then of course the 5 years of tamoxifen.  The healing process sucks.  My underarm is swollen, I can't move the way I want,  taking showers is a major undertaking which I need help with, I can't sleep well at night, etc. But I can deal with all of these things.  What I'm wondering is if the deep sadness, anger, shock, fear of another cancer showing up somewhere, the feeling of being completely overwhelmed and the pit in my stomach  will ever go away? 

april485

Hi tequillakma, to answer your question, that feeling will begin to fade although you will always keep BC with you in the forefront of your mind as you have your yearly mammograms etc (I am coming up on my second one since diagnosis on Aug 8th) The anxiety of recurrence stays with you, but it will lessen as time goes by. In the early days, it is much more scary (at least for me) but with time, there will be less time you will think about BC. I am happy that you are on your way with your treatment plan and soon, you can begin to put it somewhat in the rear-view mirror. Hugs!

Puffin2014

Welcome tequilla to this group that no one wants to join, but we're glad you found us.

I had my lumpectomy Jun 16 and can sympathize with the swollen underarm and poor sleep. I slept for several nites in the recliner with pillows strategically placed, and even though I'm back in my regular bed I do find one of the soft throw pillows from the couch feels good to rest my arm on. Keep doing your arm exercises, even though they only did a sentinel lymph node dissection he says my chance of developing lymphedema is about 3-5%. So no blood pressures or IV's or injections into that arm for the rest of your life unless it's an emergency, and do the exercises faithfully that they give you. It's normal to have the painful lumps along the incision, my doc told me they'd be better in a month and they are, but that the lumps would stick around for a few months. He said I could use heat or cold or both. I found a long grain filled sock meant to be microwaved and used behind your neck worked really well. I could start it by my neck and wrap it down around my breast and under my arm as I sat in my recliner and the heat did help the pain. Just be careful that you don't get it too warm as you're probably numb in that area and not able to sense temp accurately.

My oncotype test came back too high so I'm on chemo, have #2 next week. Glad you don't have to do that, I'll be needing radiation too. I imagine they'll wait about a month after your surgery to start your radiation.

I haven't felt the big dread of cancer coming back, I just don't let my mind go there. I just finished reading the book "Mind over Mind", about how our expectations affect what actually happens in our lives - you get what you expect. So I'm thinking positive and know that whatever happens I'll deal with it.

I've found lots of support on this forum, as well as in the chat room at cancer survivors network (http://csn.cancer.org). There are also cancer specific Discussion Forums at that site you might want to scan over and see if they can answer questions you have.

I've found it's a waste of precious energy worrying about all the what-if scenerios, focus on what you have control over. and remember that education is power. Focus on what you can do now to feel better, what you can do to get yourself ready for radiation, and that will give you the strength and power to deal with the next steps in your life, whatever they might be.

Moderators

Dear tequillakma, Welcome to the BCO community.We are sorry that your diagnosis and subsequent physical and emotional discomfort have brought you here but as you have heard already there is so much support, understanding and wisdom shared  by our wonderful members. We wish you a continued  recovery from your surgery and peace of mind in the days and weeks  to come. Please continue to post and keep us up to date on how you are doing. The Mods

jetgal23

Hang in there Darla.  Like you I was diagnosed with IDC (which is the most common type of BC) but no one told me that it would take about a week more to find out (after initial biopsy results) that I'd find out if it was ER/ PR (hormone) positive or negative, or the HER2 status.  I called my GYN who had those results and she walked me through quite a bit, even though I had already met with a breast surgeon (BS) but that meeting was overwhelming.  I like my GYN so I knew she would happily answer my questions, and I suggest you call whoever you need to get those answers (whoever had your pathology report).

Like a lot of people already mentioned, after my surgery on June 12 (was done in a few hours and went home), I recovered fairly quickly and had good results (clear margins, 7 nodes removed all negative) but it was suggested that I get the Oncotype test too (primarily for early stage ER/PR+ BC) and after sending 2 samples because the first wasn't big enough, the results are a 21 for me.  If you have this test, it will help you determine if you would benefit from chemo which would come before radiation (rads).  But if you score between 18-29 you are in middle range and its a tough decision.  So my oncologist ordered the Mammaprint - which is similar but primarily for those of us in the middle oncotype scores, and now I'm waiting.  Yes, there's a lot of waiting for results, but hang in there, and don't be afraid to ask questions here or with your Drs.  I am trying not to read too much up on chemo in case I don't need it, but rads comes after chemo (if you have a lumpectomy) and then typically some type of hormone treatment (tamoxifin, etc. but you decide with your Dr.) So it can be a long process...so hang in there but you will face it head on!!

lintrollerderby

Welcome tequilla. I'm sorry you have cause to be here, but glad you found us. Did you have one or more sentinel lymph nodes removed or are they swollen and reacting to the lumpectomy? What grade is your DCIS? You were advised correctly. DCIS that is pure and contains no invasions (micro or otherwise) is never treated with chemotherapy. The "IS" letters in DCIS stand for In Situ or in place, and indicate that these cells have not left the breast duct, so they are of no risk of spreading throughout the body. For clarification, it's not just that they have not left the duct, as DCIS cells, they are lacking the ability to spread; they don't behave like invasive cancer and would have to undergo a cellular change in order to acquire the ability to spread. Chemo is a systemic treatment and used to kill cancer cells both in the breast and spread throughout the body. Since DCIS can not spread without changing on a cellular level to become a different type of lesion--an invasive one--there would be no purpose for a patient with pure DCIS to receive chemotherapy. Of course, a DCIS diagnosis puts you at greater risk than the average woman for an invasive breast cancer in the future, but please know that you have an excellent prognosis. Both MD Anderson (routinely regarded as the best cancer hospital in the U.S.) and Harvard report that if standard treatment is followed, the 10-year survival rate is close to 100%. Even the more conservative data lists survival at 98%. Certainly, there are people who wind up in the unlucky minority, but I want to stress to you since you stated that you're having a great deal of trouble coping, that you have a truly excellent prognosis. Try to remember that when the fear grips you.

Best of luck.

DarlaJ

Dear Jetgal, thank you for the advice, I've written down some of your responses to ask the Dr. My appointment with an oncologist is tomorrow afternoon so I'll be asking lots of questions. Ridley, I have been on Zoloft for my depression since my brother died in 2008. I've been to a grief counselor two times, but talking about the experience brings back the memories so much I can't handle it and all I do is cry and want to go home. Thank you to everyone for being so helpful and supportive. 

Darla

Julcliff3

Hello all:

I am newly diagnosed (Jan 13 this year...Happy New Year to me!) and new to the site so I guess this is the forum for me. I will be getting the result of my Oncotype DX tomorrow from my MO and I so hope it is not in the intermediate range (18-30) bc then I will want to back it up with a MammaPrint and that is just MORE waiting...! I have read that a low intermediate score makes no difference...the MammaPrint can still report that you are high risk for recurrence and will benefit from chemo.

So even if my OncoType score is 18, I feel I will still need a MammaPrint. It looks at 70 genes vs OncoType's 21 and will sometimes show the patient actually will benefit from chemo after all.

Has anyone else heard this?

Thank you!

Shirlann

Hi, welcome to this wonderful home! I am 16 years post treatment and try to come on the boards when I can. This is a "no fun" year for sure, but remember, about 80% of us are cured. One of the best cancers to get, funny as that sounds. Come often, post often, you can rant and rave at the unfairness of it all, and you don' t have to reassure worried family members. This is so tiring. You are in our sisterhood, wonderful women who help each other. Gentle hugs, Shirlan

DC197

Hi Julcliff3,

Welcome to BCO, but I'm sorry you have to be here. I just have one suggestion for you ... start a new post introducing yourself rather than joining an old post from 2014. You'll get a lot more responses that way.

Best of luck to you in your treatment. Let us know how you're doing. We care.

~~Diane

RaiderGirl

Shirlann

It is not my intent to hurt anyone but your post upset me terribly. You chosen not to share your medical treatment history so its difficult to tell where you're coming from.

So here goes....

#1 There is no cure. There is remission. There is NED ( no evidence of disease). But there is no cure for breast cancer. If your physician has the recipe for the secret sauce he ought to share it with others.

#2 If you were to read more posts I am certain that you would see that every stage and type of BC (even DCIS) can be disfiguring. The long term chemo effects are devastating. Radiation also harbors its potential long term horrors. Surgery and treatment for any kind and stage of BC is painful . Hormone therapy is riddled with so many side effects there are too many to name.

#3 All women diagnosed once with breast cancer will forever fall into a completely different medical category than women without. You are now confirmed that your body can and does make cancer cells.

#4 The possibility of recurrence never, ever goes away.

#5 Lets add to the mix the devastation this disease has on a persons finances, careers, and family life.

Many women diagnosed with DCIS are able to be treated with lumpectomy only. Those are few. Most have at least lumpectomy and radiation. Some have all the same as other BC patients (MX, chemo, rads, hormone therapy)

I just can't wrap my head around the statement "One of the best cancers to get"

I know I will get allot of flack for this post.

DC197

RaiderGirl,

What you posted is the reality of a breast cancer dx. However, on a Just Diagnosed thread, when all the unknowns and fears are presented, it doesn't seem appropriate to add to those fears by listing all the negatives. It is true, there is no cure for BC, but many women who are dx at an early stage and get the appropriate treatment do go on to live a long and healthy life without recurrence. My focus is to give hope and advice to help those newly dx to get through treatment. As time goes on, and they are a little more comfortable in this journey, they will understand the realities that many of us face.

And, I am in agreement that the statement, "One of the best cancers to get" is offensive to those of us dealing with it. I wish Shirlann a long and happy life and remission and hope that she will never be in position to regret those words.

~~Diane

Julcliff3

Raidergirl:

I can tell you are very angry at BC...and I can certainly understand. It is occuring in epidemic proportions it seems. You had ZERO node mets, which gives you such an excellent prognosis, and less of a chance of it ever recurring anywhere in your body in the future!

DC197, I will try to figure out how to start a brand new post...I only saw a comment box below and nothing to click on to start a brand new post. Help!

Saw my Med Onc yesterday...got my OncoTypeDX score and it was LOW!! (13) Well below the dreaded "grey area" (18-30) which basically takes you back to square one. NO CHEMO is needed...yes!!

The average woman has a 1 in 8 chance of getting breast cancer in her lifetime...that calculates to 12%. With no chemo and taking Arimidex for the next 5 yrs, my risk of recurrence is 9%!!

(Of course I had a BMX so there is very little to no breast tissue left. I don't need another mammogram ever again my Breast Surg told me. And I have no uterus or ovaries left so that helps.)

Big hugs to all.