Guess I'm here now

eviec1

I just got the results back from my biopsy: IDC with DCIS. I haven't seen the pathology report - just got a call from a nurse navigator who gave me the preliminary results.

Dcis – 3 mm

Idc - 4 mm

Linear?

Grade 1-2

Not suspected to be in lymph, but will take one during surgery to check

Waiting on receptor status

So that's all I know so far. Now I have to wait again to hear from...I'm not even sure who? I think the nurse said my primary care dr will refer me to a multidisciplinary center of some sort, and then probably an mri then surgery then radiation then who knows what else. My head is still spinning from the conversation and I hate that I am again waiting, waiting, waiting. I just want to get on with it. I wish I could somehow fast forward through all of this waiting and wondering and just move onto the knowing, treating, and recovering.

LivinLife

It is a lot of waiting at the start though once you get that call it will likely get busy with appointments while a plan is developed. Good news on small and Grade 1-2. The IDC is the most pertinent finding - takes precedent over DCIS. Now you'll want to find out (path report) about ER and PR if positive and what percentage... positive is good and the higher the better. Also HER 2 positive or negative? The latter can be an important part of a treatment plan.... helps determine chemo before surgery or not... Hopefully you will end up node negative.... Support and gentle hugs being sent......

eviec1

Yes, I hope to have more information soon. It's a lot to take in.

SimoneRC

Hi eviec1!

So sorry you have found yourself here, and welcome! If you are in the USA and somewhat near a National Cancer Institute hospital, I would strongly recommend you ask your PCP for referral there. Academic medicine in a cancer setting is the best and even more important if you have any added surprises.

This board is a great resource and full of supportive people. Read a lot. Ask as many questions as you need. Good luck and keep us posted!

eviec1

That's good to know - I'll look into it. I am starting pretty much from zero with all this and I know absolutely nothing. Guess I'll have to learn fast.

bcincolorado

Sounds like you have a nurse navigator and mine was a wealth of information and gave me a huge book even with information in it. One of the pages in there referred me here even!

kksmom3

Your diagnosis is similar to mine. At least it is all small. Yes, you will have some treatments ahead, but you can do this. We will get you thru this. Hugs.

eviec1

bcincolorado Yes, I have one for now, but I am being referred to a different center, so (I think) I will be assigned a new one there. It will be great to have some support with this.

kksmom3 Thank you so much for your encouragement and kind words. I just hope the surgery doesn't reveal any "surprises" (like a larger tumor area or lymph node involvement, etc).

tntnsd

oh Eviec1, I am so sorry that you have now officially joined this board with your diagnosis. Next couple weeks will be full of appointments, test, MRI. I hope you have a support system at home, who you can count on to help you through this. You can always count on us, people on this board, to be your source of support as well. The good things from the biopsy is that looks like you found out this early, grade is 1-2, and unlikely lymph nodes involved. If it stays like that until the final pathology report (after surgery), chances are you get through this in couple months and recover well. Please try not to ask Dr google too much, as you can be distressed with lots of info that might not even relevant to your diagnosis.
Hugs

eviec1

tntnsd My hope right now is that it was indeed caught early. Like I said, my greatest fear is that surgery will reveal something much worse than it looks like right now. I am really trying to keep the dark thoughts out, but it is hard right now.

My support system at home is meh. My husband doesn't really know what to do (he is NOT good in a crisis lol) and I haven't been totally forthcoming with my daughter (who is 15) because she is highly emotional and I'm not sure how she'd handle it (I've told her I have some abnormal cells - which is technically true - and that I need to have them removed in order to prevent getting sick - which is sort of true). So I have to maintain a brave face.

saltmarsh

The waiting is so hard! And I don't know if your experience will be similar to mine, but I had this entirely wrong idea that once we got started, there would be steady forward movement, but instead there were multiple points at which I had to wait. I filled up my waiting with dog walks alone, listening to podcasts or music to try and stay positive, and crying when I wasn't able to.

I have an emotional kiddo as well, and while I told him the truth, I did not give more details than were necessary and focused on the hoped-for outcomes, the positives, and what was working in my favor, when we talked.

Do you have one friend you can share this with? Or does your insurance or hospital system offer you the option of counseling or a cancer buddy? Seems like it might be nice for you to have at least one person with whom you do not have to put on a brave face! Obviously, there's this board, but having an actual person with a voice or zoom call or something might feel helpful sometimes.

eviec1

Oh dear, I was in fact imagining that once I got started it could be full steam ahead with treatment. I just want to get on with it - if I could, I'd be in surgery today!

Right now I'm not really sure who I will be able to lean on in real life. It's hard - I really don't want to burden anyone. I've only told one friend so far (who is supportive, but can't really do all that much as he has his own issues to deal) and I've told two people at work (my boss and HR manager) who are also supportive, but I'm not terribly comfortable putting too much on colleagues. It's a lonely road.

Spookiesmom

It’s true, once you hear your name and.cancer in the same sentence you want it out YESTERDAY. And there will be many tests and dr appointment. And finally action. Get some kind of notebooks or calendar to keep Track. It can be overwhelming. Ask your PCP or MO for information about a live support group, there may not be because covid. Dr Google is not your friend.

You can do this.

eviec1

Thanks, Spookiesmom. I'm hoping the new center will call today to set up a first appointment (not even totally sure what the first appointment will be - meeting with surgeon?). Meanwhile, I'm supposed to get the second covid vax next Wednesday and not sure if it's OK to do that now? I've heard it can screw up imaging and the nurse I spoke with said they might do an MRI before surgery.

BtwnStars

Sorry you are here eviec1 but you will find a lot of good info. I just wanted to empathize with the waiting, but you will be ok. I was diagnosed 3/25 and just had surgery on 5/12, so about 6.5 weeks. In that time I had MRI which resulted in 2 more biopsies, as well as genetic testing. I read surgery 4-6 weeks after diagnosis is good, and a doctor at Fox Chase told me acting within 30-90 days is good.

I understand that it can feel lonely & you don't want to burden others. Find an outlet, I walk early in the morning and just look at the sky.

I also rec'd my covid vaccine in between all of this and just got the shot in the arm that was not the side with cancer. It doesnt interfere, but your nodes can swell in response to the vaccine working. Thankfully I was fully vax'd by surgery. Hopefully you can find out from surgeon or nurse.

I know it feels like a lot, one step at a time. I prepared by thinking about what I would need post-surgery, comfort items, etc.

eviec1

Thank you for the response, BtwnStars. I think even more than wanting the surgery itself over with, I'm just really anxious for more information - I wish I know the actual tumor size (not sure how reliable biopsy results are on that, I assume not very) as well as lymph involvement, receptor status, etc. I just wish I knew exactly what I'm dealing with - but I guess that really only happens after surgery. Still waiting for someone to call me and set up the next appointment - which also stinks. I wish there were something I could DO. I wish I could be proactive. But I can't. I can only passively wait which is driving me nuts.

pudelpointer

I will be joining you as well. I was just diagnosed today with Invasive Lobular Carcinoma. The radiologist that did the biopsy called me to give me that information tonight as he knew my doctor wouldn't get back to me before the weekend. I did get an appointment with the breast surgeon, but not till June 3rd. They said once the doctor sees the information they may move up my appointment if it is more time sensitive. A little freaked out, but feel better now that I know what it is.

eviec1

Oh pudelpointer I am so sorry to hear that. Looks like it's going to be a stressful weekend for both of us, with a lot on our minds. I hope we can both manage to find some distraction from it all, but I know it's going to be hard.

Salamandra

I'm sorry you got this news. I'll second that it sounds very likely that you'll have a small and treatable case, and also say that I, and I think many others, first felt we could start breathing again after my first appointment with my surgical oncologist.

Also , I'll rec Sharsheret as a resource - It's a Jewish organization but they support people of all backgrounds. They matched me to a social worker that I could speak with on the phone for both emotional and logistical support. It was way more useful than I expected just to have an ear/mind to bounce things off of who had a lot more experience than I do. They'll also match you to a buddy who had a similar case to you, though I didn't try that.

eviec1

Thank you so much for the recommendation, Salamandra! I will definitely check that out.

I just made an appointment with the surgeon for next Wednesday. I was told to make an appointment for an MRI before surgery, but I'm waiting for my insurance to approve it so that's on hold for a few days. Well, hopefully, things will start moving forward a bit next week.

Monarchandthemilkweed

hi eviec1-

Just wanted to chime in here. I was diagnosed in March and surgery May almost exactly two months apart. The waiting was the hardest. Waiting for appointments, results, surgery. All of it. But use the time to prepare. I started therapy. Journaled. Read. Reached out to people for support. I arrived at surgery calm and ready. I had a bilateral mastectomy and reconstruction. I wanted to see my breasts as soon as I could and I was not upset to see the scars, the expanders, or the lack of nipples. I fact I was pleasantly surprised by how good they looked.

I have three kids: daughter 18 (very emotional/ struggling with anxiety and depression before my diagnosis - on meds and in therapy). Another daughter 13- with her own complicated health issues and 6 year old son. Telling my kids was the hardest thing to do. Talking to the guidance counselor at school, I was encouraged to use the word cancer with my kids. I was surprised by that. Telling them went well ans I felt such relief. The message is out there that early detection equals cure. While WE know that’s not always the case I was happy my oldest believes that. I want her to get on with her life and let me worry about my health privately. It was senior skip day at her highschool the day of my surgery and as planned she went with friends the night before to a friends lake hours two hours away. I was proud of her b

I’ve just had surgery and it all went well. Tumor was the estimated size at surgery as it was at biopsy. Even though I had to wait so long it seemed.

You will get through this.

eviec1

Thank you for that kind guidance, Monarchandthemilkweed. I think the issues surrounding children are the really the hardest of all in all of this. I likely wouldn't be quite so worried if it weren't for my daughter - how she will handle the news, what would happen to her if anything should happen to me (whether grueling long term treatment that will make me less available for her, or of course, the really worst outcome possible when you have such a disease). I think I just need to wait for more information because at this point, what can I even tell her? I know I have cancer, but still don't know much else about prognosis or what to expect in terms of treatment.

kksmom3

Everyone is different, but I chose to keep it private between me and my husband for awhile before I told my kids. I wanted to have a treatment plan and be able to sound positive. I needed time to process. My grandson was 5 and he still doesn't know, he's 8 now. I suppose he will know at some point. I am sure you are an early stager. You have every reason to feel hopeful, but it is a process. Your health providers may have an in person (or zoom) support group locally. We know it sucks. Please keep reaching out for support.

eviec1

Thanks, kksmom3 - it is so very helpful to hear about others' experiences.

Monarchandthemilkweed

I did wait a month to tell my girls and I didn’t tell my son till a few days before surgery. I waited till I got the test results back and had met with the surgeons and had a plan. I think you will know when it’s right to tell your kids.