Just got the dreaded call - DCIS and 2mm IDC

Ilikedogs

I guess the title says it all. How crappy is this situation?

Will schedule a meeting with the surgeon tomorrow. They also recommended a breast MRI.

HomeMom

It sounds really small, so just take it one day at a time. A friend gave me the best advice while I was in the early stages of diagnosis, and that was to deal only with what is in front of you. In other words, don't imagine what the future will bring, stick with the facts.

Harley07

@Ilikedogs - I'm so sorry you had to join us here. It will get easier once you have a treatment plan in place. In the meantime, be kind to yourself and reach out to us if you need support.

moth

this figuring things out phase is hard. Please know that generally it isn't till after surgery that you get the full picture so at this point it's all too vague to tell, except that you'll definitely need some sort of surgery.

Things will become clearer as you go on. This is the most stressful time, it gets better!

bcincolorado

The first part is the hardest and if you have a nurse navigator it helps as well. Mine gave me a big book with a lot of information. This site has a ton of information in it and even a page referring me to this site. There is a ton of reliable information on breastcancer.org for any situation you may have in your treatment and someone here in the community who will be in a similar situation at the same time for good support as well. Most of the time people set up pages for surgery pages for support system. We had one going all through our recover from our surgeries I know. Best wishes.

Ilikedogs

Thank you friends. I will keep you updated with any info.

So… is this thing beatable or will I always wonder what’s next? I am 42 now.

MountainMia

bcincolorado -- just a comment on the nurse navigator: mine was not helpful. As far as I know, she played no special role in my care. I had virtually no contact with her and she answered no questions for me. All that said, in theory, a nurse navigator should be helpful, and a good resource when you have questions.

exbrnxgrl

ilikedogs,

Though no one has a crystal ball nor are there any guarantees in life but odds are that you will go through treatment and then be fine. Yes, recurrence is possible but please understand that you do not have advanced stage disease. So while you will always have a heightened awareness of bc, you need to keep your foot out of the grave because that grave is likely very, very far away. Don’t diminish your life now over a future that you can’t control. Take care

AliceBastable

I never had a nurse navigator. Somebody mentioned one but I think she was on vacation. I didn't need one because everyone at the breast center I use was (and is) so helpful. They take care of scheduling everything and will help me track down anyone I need or dig out an answer for me. Same thing at the oncologist's office. All I had to do was show up. Speaking of which, if you haven't heard one of the favorite quotes around here, now it's time. "You don't have to be brave; you just have to show up." Yep, it's pretty much that simple, keep putting one foot in front of the other. And that's one foot, not both at one time, as in, don't get ahead of yourself, don't leap to catastrophic what-ifs, don't think zebras instead of horses when you hear hoofbeats. Try to keep yourself grounded in reality as much as you can.

LivinLife

Sending support likedogs! As others have said at this point the IDC is really small and that is the primary concern (over DCIS). As moth said final pathology will tell the full story..... Hang in there and as was said stay focused on the step right in front of you - easier said than done at times though a really good suggestion.....

Salamandra

"is this thing beatable or will I always wonder what's next?"

Yes to the first, depends on you to the second.

Technically, all early stage (stages 1-3) are considered beatable - they are treated with curative intent. In practice, even some stage 4 cases can have optimistic long term prognoses, but they are technically treated for extending life rather than curing disease (that's my understanding).

You won't know the true details of your cancer until after surgery/pathology, but if it stays so small, chances are that not only will it be stage 1 or 2, it may be low risk even for a stage 1 diagnosis.

My tumor was significantly bigger than yours, but I am considered low risk. Even without hormonal treatment, I would have very good odds of never dying of breast cancer. With the radiation and hormonal treatment, my odds are even better.

So yes, beatable.

Will you always wonder what's next?

That depends on YOU. You always could have died of breast cancer, whether you had this diagnosis now or not. Our risk is higher after a first diagnosis, but it's all relative. To what extent you will worry and wonder and to what extent you will live with this risk like you (presumably) live with the risk of dying in a car accident or from any other cause of death, that's really dependent on your mental/emotional way of dealing with things. Some women with late stage manage not to worry about it, some women with early stage are worried forever. I guess most of us are ok most of the time, with heightened anxiety around scanning, especially when scanning results in a callback or biopsy.

If your anxiety is getting in the way of your quality of life, there are supports, tools, etc, for that, and that kind of complementary support is actually pretty well developed for breast cancer survivors. My cancer center has a psychiatric care unit AND social workers AND a complementary care unit with things like yoga and nutritional advice. Use what helps you!

----

This beginning part is legit terrifying, even with an apparently relatively lucky diagnosis like yours. None of this is to undermine your feelings right now. We all have our own baggage with cancer and sometimes it is really heavy. FWIW, I found that for me, the mental/emotional aspects of cancer have been generally more challenging than the physical aspects so far. The fear really was worse than the reality. I hope it will so for you also!

Ilikedogs

Thank you so so much for this! I have an appointment to meet with the surgeon a week from today. I am assuming we will make a plan then. I will definitely update.

And I am happy you are low risk and doing great! Looking forward to being on your side of things.

MountainMia

Salamandra, what a lovely answer you've given. I will repeat this: "the mental/emotional aspects of cancer have been generally more challenging than the physical aspects so far. "

And it gets easier as time passes, for me. A lot of the memories that I thought would always burn bright are actually fading already, and I'm not even 2 whole years since the end of my treatment for stage 1, grade 3 tnbc IDC. It's still hard sometimes, but it isn't hard ALL the time, and for that I am grateful.

moslmic

Hi, likedogs xx

As has been said the invasive element is the part which will determine your future treatment. I was initially diagnosed with DCIS but when all removed there was a 2.5mm invasive focus. When tested triple positive. I was given the option but we have thrown everything at it. 12 weeks of chemo, 17 rounds of Herceptin, 20 sessions of radiotherapy, 1 year of Neratinib and 10 years of Tamoxifen. I was 44 when diagnosed so slightly older than you.I’ve had periods of anxiety around the whole thing and have just completed 12 weeks of CBT therapy. I refuse to let this thing define me. Take care and good luck with your treatment.

Ilikedogs

Hi. So got some news today. Estrogen positive, progesterone positive, HER2 negative.

Don’t know what this means but have a feeling I will be going into menopause soon 😩😩

SpecialK

ilikedogs - this arrangement of hormonal receptors and Her2 status is the most common type - roughly 80% of breast cancers are this type. Here is some information linked below from this site on what that means. Why would you think you will be going into menopause - do you mean drug-induced or naturally? If you are pre-menopausal Tamoxifen - the most commonly prescribed anti-hormonal medication for younger age breast cancer patients - does not cause menopause, rather it blocks the ER receptors on the breast cells so they cannot receive estrogen, while allowing circulating estrogen to continue doing the positive things it does in the body.

https://www.breastcancer.org/symptoms/diagnosis/hormone_status

https://www.breastcancer.org/symptoms/diagnosis/her2

Ilikedogs

Hi! Yes I thought tamoxifen will put me in menopause. Thank you for clarifying.

In terms of the hormonal profile/Her2 …. I tried to Google but couldn’t get a clear picture. Is it “good”/“bad” if you have to have cancer? Are the odds better or worse than the average?

exbrnxgrl

llikedogs,

None of the anti-hormonals, whether Tamoxifen or any of the AI’s put you into menopause. Some pre-menopausal women who go on AI’s receive ovarian suppression drugs because AI’s are generally prescribed for post menopausal women. They work by a different mechanism than Tamoxifen.

As to being HER2 positive or negative, I don’t know about current stats . Prior to the introduction of Herceptin for HER 2 positive bc, this hormone profile was definitely more difficult to treat. Herceptin really turned things around!

SpecialK

ilikedogs - it is difficult to precisely say whether any arrangement of hormonal receptors and Her2 status is "good" or "bad" because response to treatment is a very individualized thing, and affected by things like grade, nodal status, age, etc., and responses - both good and bad - to treatment. There are some arrangements that are regarded as more aggressive - triple negative disease (ER-/PR-/Her2-) and any Her2+ combination, but there are chemo regimens and targeted therapies that have been developed that have been effective. ER+/PR+/Her2-, because it is the most common, has been extensively studied, and continues to be. It is not better or worse than the "average" it IS the average.

AMG2

Ilikedogs, I'm so sorry, that just stinks, but yes, as others are saying, it's beatable, and it seems like it's early for you, so your chances are good, but it's hard to know before surgery. Her2 is generally very aggressive, but there are also very good therapies for it at this point. All cancer sucks - all of it, but Her2 negative in general is considered a good thing. I happen to know more about it than just the straight up HR pos tumors, or the triple negs because it's what I'm dealing with, and we happened to study Her2 pos breast cancer in grad school way back in the early 90s.

As others are indicating, this stage is horrid, or at least it was for me, too. Having had my surgery, and having gotten the pathology back from that, and having gotten a medical oncologist, I at least know what my path looks like for the next year, and why it needs to be that way. Not knowing that was really hard, and you're in that not-knowing place right now. I spent probably 2 months between my bi-rads cat 5 ultrasound and surgery finally last week in an extended panic, and that has now finally ended - so do know, it does get better. Knowing that uncertain stage is where you are now, I just want to give you a hug and be there for you.

I empathize with the premature loss of hormones thing.Cancer just sucks.

Ilikedogs

Thank you so much. I am just so so scared that MRI or final pathology will show something horrible.

I made my peace with lumpectomy and radiation. I am worried about it spreading. And yes I know - I need to stop. I really appreciate everyone being here for me.

MarvieS

llikedogs, I was also recently diagnosed and going through the same stage right now. I learned from others on here that this is the worst, between diagnosis and getting started with treatments. Not knowing if anything else will show up, if there is node involvement, if it has spread, what the final pathology report will look like etc.

I love what AMG2 wrote, that it does get better once we know more and have a path. If it was possible I would have the surgery tomorrow just to get on with this and get out of this horrible stage of not knowing and imaging the worst. We will get through this and hopefully soon we will know more and have our path as well. Thinking of you and everyone fighting this stupid disease.

Ilikedogs

Hi friends. I apologize for not being on here for a while. I had my surgery last Thursday. Pathology results came back today with no lymph nodes involvement - still stage I. Radiation starts in October.

I wanted to come and say how helpful everyone was and that I wish all the best to everyone. I am pretending right now that I am all good and trying to move on from this nightmare. I also want to say to everyone going through biopsied and lumpectomies - they aren’t bad at all. And I mean it. I had two biopsies and a lumpectomy in about 6 weeks and while they aren’t pleasant - you can do it. The worst part is mental. That’s the most agonizing part.

So please go get those biopsies done and if need be - surgery and just do what they tell you. This whole horrible experience turned me from a skeptic to a someone who fully trusts medical professionals. I still have to go through radiation but now it doesn’t scare me.

I wish all the best to everyone here and I will leave you with this. When I went to my first surgical consult I was catatonic. I couldn’t say a word. It was horrible. My husband was speaking for me. At some point the surgeon looked at me and said: “You need to snap out of this. This will not kill you. You have a run of the mill disease.”

I was offended at first. “Run of the mill?” Maybe she wasn’t diplomatic enough. Maybe she was too direct. But I needed that. I held on to her words during my worst days when I was convinced that the back ache and tummy ache and tingling arm - that they all were cancer spreading over my body. I kept telling myself “The surgeon said it will not kill me”.

Obviously we all have different forms and stages. But until you know that something really bad is going on, try not to let your brain go there. I spent way too maybe days and nights agonizing over something that ended up being nothing. That tingling arm - too much googling on my iPhone about cancer. That back pain - not cancer… just stress and tension.

I don’t know where I will be in 20 years. Maybe it will come back. I don’t know. I hope not. But I hope I will be around to see my daughter graduate from high school 5 years from now. And maybe I will end up dying skydiving in Aruba… or in a car accident… or who knows where and when…

Good luck to all of you and I apologize in advance but I will try to stay away from this page and live my life pretending this didn’t happen. Maybe it isn’t the right approach. But I need a little bit of delusion right now and if doctors are saying I will be ok - I will take it.