Diagnosed with DCIS and IDC in left breast on 7/2

EminGA2018

Hi,

My doc called 3 hours into a 6 hour road trip on Friday to give me my biopsy results. Im 45..have DCIS like my mother (she was diagnosed 5 years ago) but also IDC in my left breast. I haven’t got all the staining back on my sample yet so not sure of stage, Her+/, etc..

I’m trying to make the most of vacation and enjoy this time with my 8&10 yo and husband before going home and meeting with my surgeon on Tuesday to get more information and a treatment plan.

How fast do things typically move? I don’t know if I should expect days or weeks until surgery. Any tips on breaking the news to young children?

any advice on navigating these early days after diagnosis would be really helpful!

thanks!

Emma

Melbo

I have no advice on breaking the news, but it will get easier as you get more information and get a plan in place. Your treatment plan will depend on the pathology results and the size of your tumor. There is a chance you could start with chemo if the cancer is a more aggressive type and statistically speaking, the younger you are diagnosed the more likely it will be a more aggressive type. I know it sounds super scary but it will be doable, even if you do need chemo.

there is also a chance you will just need surgery and maybe radiation. I only mention chemo because it took me completely by surprise when I heard that news.

for time line it will most likely take a few weeks to get everything in place. It took about a month from first doctor visit to starting treatment for me. I saw the first doctor about the lump on July 7th, I got my biopsy results on July 16th,saw the surgeon on the 21st where he broke the news that I needed chemo first, and I got a port placed and started chemo on August 7th.

i found the NCCN guidelines to be really helpful understanding how a lot of this works. My mom is an oncology nurse and she them to me a few days after I got the news.

https://www.nccn.org/patients/guidelines/content/PDF/breast-invasive-patient.pdf

Beesie

Emma, sorry that you've joined us.

It's very common to have IDC and DCIS together - some DCIS is present in about 80% of IDC diagnoses. Because the IDC is the more serious diagnosis, the DCIS can pretty much be ignored. It will need to be surgically removed (which could impact the type of surgery if there is a lot of DCIS) but other than that, the staging and treatment plan will be based only on the amount of IDC and the hormone status of the IDC.

What's most important at this point is the hormone and HER2 status, because that will determine the order of treatment. As Melbo indicated, unless the invasive tumor is very small (5mm or less, generally), chemo will come first if the cancer is either triple negative (ER-/PR-/HER2-) or HER2+. But if the cancer is ER+/PR+/HER2+, then generally surgery will be done first (although there are some exceptions, for example if the tumor is extremely large) and often chemo won't be required.

When you see the surgeon tomorrow, make sure that you get a copy of the biopsy pathology report, along with any imaging reports. Together they will provide an indication of the size of the area of cancer (although it may be impossible to know how much is DCIS vs. IDC), the grade of the IDC, and the hormone & HER2 status of the IDC. That's the key information you need to move forward.

As for timing to surgery, it will be weeks, not days. But how long depends on the diagnosis. If you have mostly DCIS with just a tiny bit of IDC, there is less urgency and the timeline might be extended (6-8 weeks is not uncommon for DCIS and very small IDC). If you have a triple negative or HER2+ cancer above a certain size, then surgery will be delayed while you have chemo, and you will need to see a Medical Oncologist quickly, since surgeons only handle surgery and not the rest of the treatment plan. But it could also happen that if a surgery slot is available and you have a relatively small cancer that does not require chemo first, you might be offered a surgery date within just a couple of weeks.

Generally breast cancer is not considered to be a medical emergency, so the thing to remember is that the decisions are yours and you have time to make sure you have the information you need to make the decisions you are comfortable with about the surgery and treatment plan.

Good luck tomorrow. Let us know how it goes.

eviec1

As Melbo said, a lot will depend on the details about your cancer that you receive in the next few days (size, hormone status, HER2 status). But for a sample timeline, here's mine:

Got the call with diagnosis of DCIS/IDC on May 13th.

Had lumpectomy on June 7th.

Scheduled to begin radiation on July 15th.

Hormone blockers starting around August 15th (once radiation is over).

AB45

Hi

I remember vividly being where you are right now! First, take a deep breath..it is ok to cry or scream then once you are done, time to get in fight mode...my time line was diagnosed officially in Novemeber 2020, surgery Jan 2021, my lymph nodes showed positive for cancer so I had chemo Feb 2021 thru May 2021..I will start radiation this week...you will be amazed how resilient your children are...mine cried when I told them but as long as you present it but you may want a family member there 2, that is what I did...be prepared they may ask some tough questions ...but you got this...stay on this forum, you will meet some amazing people who have been where u are! It all is scary at first but once you get information, you will be prepared better

Sending positive vibes!!! Virtual hugs

EminGA2018

Thank you for your responses. I never saw the surgeon. After waiting an hour and a half feeling anxious..the nurses asked me if I would wait another hour for him. I quit the practice. I wasn’t happy with the care I had received up until that point anyway. My first biopsy was botched. So it was a blessing in disguise. It forced me to open up my options.

I have learned that I should be seeing a breast surgeon not a general surgeon for the best results. I did dissolve into embarrassing sloppy tears in the parking lot though. I’m a recent transplant in a small town and I couldnt find anyone here to help me understand this or help me navigate the process..but.. my husband found an amazing practice an hour and 40 minutes away. So I don’t have any more info but I do have a great option to look into.

I’m an emotional roller coaster and I just want to curl up in bed with my kids and my cats and cry but I’m sure this will get easier! I just need a clear path and I can relax

Ginabena

EminGA2018

Just want to tell you that I’m in a very similar boat as you are, tight hugs. As backwards as it sounds, getting the biopsy results and told that I officially have breast cancer was a relief compared to all the worst case ‘whaat if’s’ swirling around in my brain leading up to the biopsy result appt. Like you, I also have IDC and DCIS, found out July 1st, and was at my initial surgery appt. (I was told even if the results were benign, I’d need to have a lumpectomy, so the breast center had already scheduled an appt with the surgeon on my behalf before my biopsy appt).

I know we all deal with things differently, but a few things that are helping me is mindfulness. I keep reminding myself when I catch my mind going down that worry path that worrying about tomorrow, next week, next year is only robbing myself of enjoyment of the time I do have right now, which is all we ever truly have. Lots of deep breaths, even reminding myself to breathe at times, and maintaining as much normal day to day routines as possible and not allowing cancer to completely hijack enjoying my life!

Here’s my timeline:

June 29th: Core Needle Biopsy. Breast center proactively schedule appt with onco surgeon for July 1st, at which the surgeon would give path results. Radiologist was reassuring, modern medicine is better at treating and curing if it is breast cancer. I appreciated that.

July 1st - Received biopsy results from onco surgeon. Discussed options, settled on lumpectomy. the hormone receptor results were not available yet, was advised it would be sometime the following week. The onco surgeon was able to give me some reassurances based on his experience- curable was a word he said that resonated with me.
Scheduled Surgery date: July 26th

July 2nd: Reached out to local cancer center, scheduled initial appointment with Medical Oncologist. Let them know I was waiting for hormone receptor report, they got the name of the clinic where biopsy was done to request results/ records, etc. They were able to get me worked for July 7th

July 7th(yesterday): Oncologist appointment, discussed what we know about my cancer, and what we don’t. Gave me if this, then we will treat with this, but won’t know what that will be until after lumpectomy/ sentinel node biopsy results. Hormone receptor results- PR+ 90%/ ER+ 95% & HER2 ~

I had brca dna testing in 2017, the results were negative I brought those results to onco surgeon and onco appt.

Based on the facts, he confirmed lumpectomy is what he would recommend vs mastectomy.

If node (s) involved - def chemo

If no node not, but oncotype is high- def chemo.

If node negative and onco score low- Radiation + Hormone Blocker - no chemo.

Told me he wants to see back around the 2nd week of August at which point we will have all the info needed to know what my treatment path will be. No matter the outcome, he reassured it is curable, we just have to know the best way to attack it.

I’m mentally preparing myself for the worst case, knowing that is the path that is needed to ensure all the cancer is gone!

Hang in there, once you find the right group of doctors, you’ll be well on your way to planning the best mode of attack for you and unfolding aplan will help ease your anxieties. Best of luck, and please keep us updated!

Hugs!

exbrnxgrl

I’m so sorry you have been dx’ed. Everyone has given you good information. I’d like to address telling your children. The most important thing you can do is be honest with them at an age appropriate level. This doesn’t mean telling them every nitty gritty detail but don’t paint the situation as something minor that can be fixed with a few stitches. My own children were adults at the time of my dx but I just retired from a long career teaching elementary school. Over the years there have been families in my class who have faced difficult medical issues. Some parents chose to not tell their children, others chose to tell them. The children who were told the truth were far less anxious and more easily able to verbalize their concerns and worries. Those who were not told had a much rougher time because they knew something was going on in their family but they didn’t know what and the anxiety manifested itself in negative ways. If your children will be going back to school in the fall I would also suggest you tell their teachers as they can give your children some support if needed. Lastly, I believe that the American Cancer Society has information available to help children deal with a parents cancer. Take good care.

EminGA2018

Hi Genabena,

I’m sorry you find yourself here too! Thank you for your reply. You are so right about mindfulness! I think trying to be present in the moment is good practice..especially now! I got my DX over the phone 3 hours into a 6 hour road trip. I knew I was going to be out of town for a week with my family and there was nothing I could do about it until I got back. It really forced me to focus on each moment with my husband and kids. I don’t think I have been that present with my children on vacation for a while. Life can be chaotic. We actually had an amazing vacation❤️.

One thing this site and replies like yours have shown me is how strong and resilient we all are. You sound like you have a good plan! Sending positive healing thoughts to you. I hope you get the best possible surgical result.

Hugs

Emma

EminGA2018

hi exbrnxgrl,

I appreciate your perspective on telling children about a tough DX. I agree with you! My children are constantly showing me that they are ALWAYS paying attention ;-) they absorb everything and tend to pick up on an undercurrent of stress no matter how we try to hide it. I took your advice and have been looking around on this site for pointers on breaking the news. Thank you for sending support!

Emma

EminGA2018

hi Ab45,

Thank you for taking the time to reply. I’m sorry you are here too. It is amazing to me how many women will be going through this difficult time but still take time to help others through theirs. This is an awesome community.

I am waiting for my treatment plan before telling my kiddos. As well as I feel that if I can start out by telling them that this cancer is treatable and it will be okay and then walk them through what the next weeks and months may look like..they’ll feel some comfort in that.

Thank you for telling me that it’s okay to scream or cry. I actually really needed to “hear” that❤️ I have been feeling like I need to keep it together for everyone. I hadn’t cried until my forner doc kept me waiting for an hour and a half and then asked me to wait another hour so he could “squeeze me in”.

I left the hospital and completely melted down in the parking lot with my husband..just feeling lost and having no control and so angry that my former doc wouldn’t prioritize my needs enough to give me dedicated appointment time. I need to remind myself that my emotions are what they are. It’s okay to be vulnerable and rely on others sometimes.

I hope radiation goes okay for you this week! Sending positive thoughts your way!!

EminGA2018

Beesie,

That is really helpful information..thank you! I am a prepper in all situations. Having an idea of what this journey may look like is comforting to me. I didn’t see the surgeon which was kind of a blessing in disguise. I have found a practice that I am 100% confident in. I know that will make this journey easier! Having kind of an outline and an understanding of some terminology can only make my eventual meeting more productive.

Emma

EminGA2018

hi Melbo,

Thank you so much for that link!!! I have been reading through it. It’s a great resource. I’m sorry for your DX too! I think..based on the information that I have..surgery and radiation is what I’m looking at but as you experienced..there are so many unpredictable variables that can completely change the course of treatment. I’m trying to just be okay knowing that I don’t know how this will unfold. I hope you’re doing well! Sending positive thoughts your way.

Emma

EminGA2018

Eviec1,

Thanks for replying and giving me your timeline. That helps my understanding of how things might go. I’m sorry that you find yourself here too. I hope you’re doing well. Good luck with radiation. I hope everything goes smoothly and you get the best possible results!!

Emm

Waves2Stars

Emma, I’m sorry to hear about your diagnosis. I diagnosed a couple days before our family road trip! An elderly family member and my teen son (neither are aware, yet) were in the car when I got call for scheduling the cascade of appts that begin when I get back. I’m so glad you got a chance to get in a vacation before the circus begins! I hope your new medical team treats you with the care you deserve