It's my first day after diagnosis

LBG10

it's my first day here....really scared!

I got my path report back yesterday from the biopsy. Invasive ductal carcinoma grade 1. "May represent a tubular carcinoma"

Waiting for a surgery apt to get this crap taken out! Won't know anymore til then but I have a ton of questions for anyone that can help!

Thank you

mustlovepoodles

LBG, I think you are in the most anxiety-provoking time. You have a little scary information and no real plan of attack. Understand that your cancer is unique to you. Although we may have similar experiences, no two breast cancers are the same. Feel free to ask your questions here and please let us know how it goes for you.

ceanna

LBG, sorry you find yourself here but it is a place to find information and (((virtual hugs))). Until a plan for treatment is in place, you probably will have many concerns you don't know how to address. Hope your surgeon appointment gives you answers soon and that you have access to a nurse navigator at your treatment center who will be your go-to person for specific questions. Let us help and ask your questions once you have additional information.

LBG10

literally laying in bed waiting for the breast surgeon to call me with apt details!

I hate laying here, crying but it's all I've been able to do!

I have so many questions but don't know what to ask bc I havnt had it removed yet!

My family practitioner told me it's looks like Probably a lumpectomy and tamoxifen.....I guess I should be greatful for that! But I'm very concerned about the tamoxifen, I'm 40 yo, am a very active individual, married.....what is The tamoxifen going to do to me! I'm scared I will lose my hair from it, I know that's a petty concern but it is real and I'm terrified!

I currently have a mirena IUD in place, do I need to get that taken out while I'm "waiting"

Any advice or answers would be greatly appreciated!!

gb2115

Have you been put in touch with a nurse navigator? Were you able to schedule your surgeon appointment?

Most everything that happens will be based on the specifics of your pathology report, which they should have, if not yet then soon. Every cancer is different and they will walk you through it.

I am almost 40 and just went through all of this. Don't spend time worrying about the tamoxifen right now--its not worth your emotional energy right now. You won't lose your hair from it. I have been on it for over a year and it's fine--many of us are fine on it.

One day at a time, one task and one moment at a time!

beach2beach

Welcome but sorry you find yourself here. Ask away... As for Tamox...I've been on it 8mths. Hair intact I worried about the side effects. Too much reading on it will scare you. Side effects for me? minimal. Makes my sinsues and mouth drier than usual. Luckily thats about it. Don't worry about it yet. One thing at a time is best. Worrying too much on the "what if's" will make you crazy. I looked at as I was lucky that that is all I had to take. No chemo or rads. I looked at it as I would deal with whatever it through at me...and, so far, its been do-able.

chronicpain

So sorry you are joining us! They told you stage I, (low) did they give you a grade?

They will likely recommend lumpectomy and radiation and then tamoxifen ( do not want to get pregnant now) and prognosis should be good!

Weekend is coming and may be rough waiting —consider asking your primary doc for a sedative to tide you over.

We are here for you, but ask for help with your medical team too

grainne

hi. Believe it or not, tubular is a good diagnosis to get and is very probably grade one. There is a tubular cancer thread you could have a look at. I had a lumpectomy, rads and am now on tamoxifen for nearly 2 years. Side effects have been minimal..probably a lot less than what a lot of women go through in an ordinary menopause. It is the worst time now, waiting for information and not knowing what questions to ask, never mind trying to understand the answers. You will get your life back. Hang in there...you will be grand.

Lula73

lots of questions and scary what ifs right now. You really won't know much until the rest of thevoathology comes back and your medical team presents your plan of action options. I know it's tough, but nothing has really changed since last week except knowing the cancer is there. You do need to grieve/get your emotions out/cry/scream/throw things/etc - it's part of dealing with the diagnosis. But then pick yourself up and start putting one out in front of the other to move forward. Keeping busy can really help mentally and emotionally. As the other pathology starts to come in you'll get a clearer picture of what to expect.

Tamoxifen can cause hair to thin, but it's not chemo in the traditional sense where all your hair falls out. And There are supplements that can help with thinning if it happens. Biotin and a product called It Works are 2 of them.

Discuss the IUD with your medical oncologist before removing it. Your GYN will likely say it has to go because they may not be aware of the latest data on tamoxifen + mirena. Studies are showing that the mirena is actually beneficial to ladies taking tamoxifen as it helps protect against the risk of developing uterine cancer and thickened uterus walls that can occur with tamoxifen. This is true even with hormone positive BC.

You will get through this. The fear and uncertainty will turn in to confidence. You just need the other pieces of the puzzle that are coming soon. Sending hugs your way. (((Hugs))

teriabbott

LGB, I am 39 and am on the Tamoxifen, I am not having any real side effects and have been on it for about 4 months. Waiting was the hardest part for me! Once I knew what I was dealing with, it made my choices a lot easier to make. We are all with you and have all been there before! I did need my IUD out but I have horomone positive cancer so I am not allowed any "extra" hormones, I'm not sure if this will be the case for you or not. Hang in there!

Dina7142

Was diagnosed with IDC and DCIS June 4,2018. I am a Veteran so I have to go to the VA hospital to see surgeon . I'm confused. She is basically giving me the choice of lumpectomy vs mastectomy. Tumor is less then 1 cm. I'm 63 and I don't know the odds of reoccurrence. Just wondering if anyone has had this situation. I'm brand new to this forum. Please excuse if I'm not doing this right

Luckynumber47

Hi Dina, you're at the toughest place right now - not knowing. Trust me, everything is easier once you have all the details and a plan. Your survival odds are basically the same with a lumpectomy or a mastectomy, they're just different ways of getting there. Your tumor is small so a lumpectomy plus radiation should be no problem. Some people don't want to deal with the worry of a new cancer growing in that breast again so they have the breast removed (mastectomy). It's a bigger surgery but you usually get to skip radiation. Some women choose reconstruction after mastectomy, some choose to go flat.

What testing have you had done? My dr routinely does MRIs and we found a tumor in the other breast that the mammogram had missed. Glad I found it early on. Talk to your dr about how many lymph nodes they want to remove. Standard is sentinel node biopsy (about 1-3) but some old school dr's like to take more. Unless they strongly suspect lymph node involvement don't let them take more.

Do you know if you are ER/PR positive or negative? Same for Her2? After surgery your dr's will know if chemo is recommended but nowadays more and more of us get to skip it and just take an AI. Hope you fall in that group. I've been on Femara for 2 years now and doing very well on it.

Keep posting and asking questions. We'll get you through it.

Dina7142

Thank you for responding. I haven't had any testing. I saw the surgeon 6/06. All the Dr. said was Lumpectomy 1-3 lymph nodes. If I choose this option they want to do a MRI. Mastectomy no MRI straight to surgery. They would do the MRI before surgery. I'm assuming they will do all the testing after the tumor is out. Like I said I am a Veteran, so I have to go to the VA hospital. The surgeon did tell me that VA would do reconstruction. I don't know if I am eligible for a second opinion. Should I try to go to a plastic surgeon just in case? I have heart issues to my children and husband are all voting Mastectomy. One and done hopefully.

Moderators

Hi Dina7142, Indeed, as Luckynumber said, this is really a tough time. You may find some of these readings helpful: Mastectomy vs. Lumpectomy Is Mastectomy Right for You? Mastectomy plus reconstruction

And yes, you'll need to talk with a plastic surgeon if you opt for reconstruction. Hang in there, and keep up posted.

The Mods

Luckynumber47

Lots of decisions ahead. Remember, if you have a lumpectomy you will also have radiation so keep that in mind if you have heart issues. Also, reconstruction or not is your choice. Just be sure to read everything you can on the subject so you know exactly what to expect either way.

If you do a mastectomy are you thinking of doing a BMX or just the one side? That's also your choice although some dr's are resistant to removing a healthy breast. Can you talk the dr into doing an MRI before you make your decision? That way you know if there are any surprises the mammogram didn't find. Leave no stone unturned.

Wishing you all the best,

Lucky

Dina7142

Thank you for your feedback. I know I have alot of decisions to make. I'm going to go ahead and get the MRI and try to get in to see a plastic surgeon. I'm going to call my nurse co-ordinater Monday and ask her to set this up. It's so complicated because I'm a veteran on disability so in order for all tests and procedures to be covered I have to get permission and consults for VA. I'm over 1 hour from the closest Breast Center and 2 1/2 hours from the nearest VA hospital. I had a heart attack in 2015 and am wondering what the effects of radiation are on the heart. I was just shocked when the surgeon said the how to proceed was my decision. I'm definitely weighing everything. My health, age, (just turned 63). Like I said my children and husband say get rid of it all. They are concerned about a reoccurence. I'll keep posting. It's so nice to be able to get feedback from people who are going through this also. From the time the lump was found until Mammogram, Ultrasound, Biopsy and results has been about six weeks. My husband and I decided that we wouldn't talk to anyone until we knew for sure. I have been literally going nuts. Again thanks to everyone.

LBG10

hi Dina7142

So sorry you are joining our community, but it really has been a god send to me in my journey! Like others have mentioned, the uncertainty of not knowing is the worst part! But it does come together,and quite quickly too!

I was diagnosed with Stage 1 IDC grade 1 on May 1, 2018, and had my surgery on a June 7, 2017. I chose the mastectomy and prophylactic mastectomy even though my MRI said no other suspicious areas seen! For me, making sure I would never have to worry again was the only option I could consider! I chose to do immediate reconstruction as well, I was 40 y/o at diagnosis! I'm not sure about VA benefits, but I know the Women's Health and Cancer Rights Act must cover prophylactic and reconstruction if the woman chooses to do so! Please look into that further for more information as you move forward! Knowledge is definitely Power!

Prayers to you for a complete recovery!

LGB10