Invasive ductal carcinoma (IDC): Anyone else?
I have rec’d 4 chemo + 16 radiation treatments for invasive. Has lumpectomie 1st....then one week later...
Dissection 17 lymph nodes & 3 tumors removed tumors
Got clean margin.
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@jussnunu take a breath. It is so difficult at this moment is stay calm and not let you mind reel. When is you oncologist appointment? Soon I pray, so you can get mind calmed with known information. The OB-gyn may or may not have the full information. The oncologist is knowledgeable in breast cancer. In the mean time write questions and concerns down, which hopefully will help alleviate them out of your thought process and on to the paper.
Please be vigilant and insist that you get an appointment quickly and soon. Do not just let them say "your appointment is such and such" You speak up an say you need it sooner. Do you know this oncologist. Ask friends or others about him/her. You are young & healthy and that is a real plus for you. Hang in there and we are here for you. As you think of questions - please do not hesitate to write the questions here in this forum. We are in this journey together and have each others backs, Someone probably will have an answer and explanation for you. Be proactive and don't stop asking questions of your doctors until you are satisfied and comfortable with the information. Your OB-GYN I think did you a dis-service by giving you partial information. IMHO Blessings
@sequoia I was seen last Wed at my OB-GYN office so now I am still waiting for an approval authorization to go see an oncologist which is stressful waiting 🙁
I don't even know what stage I'm at which is frustrating. I just don't want chemotherapy because I don't want to lose all my hair. I'm just so devastated right now.
Jussnunu, hi, and I’m very sorry to hear of your diagnosis.
I too was diagnosed with IDC in January; right breast. I had two tumors ( much bigger than yours) so the placement eliminated any possibility for a lumpectomy, but it may possible for you. I had a unilateral mastectomy with 8 nodes dissected ( removed). I did not need chemotherapy based on a typing called ONCOTYPE.
I was terrified when I got the diagnosis and can easily relate to how you feel right now and I too assumed chemotherapy and hair loss ( 5 months before my daughters wedding) was in my immediate future. But as it turned out it wasn’t!
So, the advice I offer, until you have more information, is that you understand that there are lots of variables and no one plan fits all. Allow all the fears and anger and incredulity to have their time to be expressed and then Take a deep breath and step back into Gentle Warrior Mode.
You must educate yourself so that you can self advocate. And pull in a trusted support person who can help you sort through the information and help you make decisions… you will need to make decisions.
Based on the biopsy some information is available but some needs further analysis ( likely requested) . So, are you waiting for any test results now?
Most important is to get the earliest possible appointment with an oncologist. Also of note, IF you are hormone positive you will likely be taking a hormone blocking med. I encourage you to ask your oncologist if you are a candidate for an ONCOTYPE analysis . If you are a candidate there are concerns about starting the hormone blocker before an adequate tissue sample is taken. It may negate the ability for ONCOTYPE analysis.
Questions to ask :
-Stage of cancer?
-Grade?
-Hormone positive or negative?
-HER 2 Positive or Negative?
-genetic based gene mutation?
-Node involvement ?
-am I a candidate for ONCOTYPE DX?
So many factors determine treatment. The good news ( in the not good news) is that treatments have improved greatly over the years and are being tailored to individual situations.
If you are physically close to a major Breast Cancer Center like MEMORIAL SLOAN KETTERING, MAYO CLINIC, MD ANDERSON, Montclair Breast Center etc. these are GREAT OPTIONS. Many large hospitals have cancer centers with Breast Cancer specialists too.
Lots of great information at SusanGKomen .org.
This is tough and web are here for you!
Please keep us posted. 🌸
Jussnunu, hi.
I understand exactly how you’re feeling. I was there earlier this year, scared out of my mind shocked,confused and didn’t know which end was up. I joined this board and the advice i read on here from these wonderful people calmed my mind considerably and i took a deep breath and went about writing my questions, researching doctors and treatments etc. Anjalima has a great list….
I know its difficult but try not to stress too much and get into a depressive state of mind. Science has come a long way with this disease and that’s reassuring.
As sequoia says “ hang in there, we’re here for you”
Stay strong💪🏻
Hello, I also was diagnosed with IDC, and the time where you are right now was the hardest for me. You have a tiny bit of information, only the most shocking part. If you can, try not to make yourself crazy with “what ifs”, I know it is hard. Take a deep breath and try to blow out some stress with a powerful exhale, this helps me to refocus some. I also give myself set times to worry and think about it, this way I can then move forward and give myself permission not to think about it for a while.
I agree with others here, I would call and ask for the soonest possible appointment. Also knowing what I know now, I would have someone I trusted with me at every appointment that I could, and I would ask if I could record appointments with a lot of information so that I wouldn’t forget things. You will get a lot thrown at you all at once and sometimes your brain will turn inward from bad news, mine did this without my permission.
I would ask that any and all tests that I need, to be performed before treatment decisions are made, making those decisions well informed.
Now for the best part; if you only have the one small spot, you likely could be offered a lumpectomy, and if you decide or require a mastectomy, insurance is now required to cover reconstruction if you desire it. Fewer women get chemo these days because the new tests will help decide if it will likely be beneficial, but if you lose your hair, rock it with dignity, lots of women shave their heads today and look amazing.
Last but not least tell your doctors you would like to preserve fertility if at all possible and most doctors are very receptive to this. There is actually quite a bit of research into how to manage this.
Breast cancer.org website has tons of information about all kinds of things breast cancer.
https://www.breastcancer.org/
You should absolutely write down every question you have and cross it off as you get answers, you deserve to feel comfortable in your plan.
Are you being treated at a large hospital or cancer center? Do they have a patient navigator you could access?
@jussnunu many of us have avoided chemo after getting results of the Oncotype Dx test, which will be done after surgery if you are HER2- and ER+.
Many more of us avoid chemo since genomic tests like this have personalized care.
Easy to say but find distractions while you wait. And don't be afraid to ask for some temporary Ativan (I did, just 4!).
It's really hard being so young.....breastcancer.org may be helpful for you.
@jussnunu, those are really good questions to ask. You're on the right track to getting answers.
The question about having kids is really important to bring up at your appointments. There are fertility-sparing options available to you even IF you have to have chemo.
I also want to let you know that we have a group here specifically for young adults. See
- Adolescent & Young Adult (AYA) Cancer https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/
I'm hoping @coffeesd will join this discussion too. She was diagnosed with breast cancer at 32.
There's also a monthly Zoom meeting for young adults with cancer. The next one is on Oct 6. I encourage you to join it. See more details here:
- YA, Me Too: Young Adult Cancer Support Group Meeting https://connect.mayoclinic.org/event/ya-me-too-young-adult-support-group-meeting-117/
@jussnunu, how are you doing today?
@jussnunu I thought of you last night and palm to forehead, why oh why didn’t I send her this link. I personally have met a few of the advocates from this group. This is an amazing resource for young women with breast cancer.
Young womens survival coalition
https://www.youngsurvival.org/
How are you doing today?
How are you Jussnunu?
Hello everyone . Thank you so much for all the support . I was seen by a surgeon oncologist today . She said I am at Stage 1 , and she doesnt think that it has spread yet. She ordered an MRI and we will decide on surgery from the report . She gave me 2 options:
Segmental mastectomy + radiation + med or Total mastectomy - radiation + med . As for chemo , she think I might not need it only if it has spread to lymph nodes then yes.
I am only in my 30s and I really dont want a total mastectomy so I lean towards segmental mastectomy but since I have breast implants, she suggest that I have to take it out due to radiation will cause capsular contracture and maybe rupture as well. Im really sad about this too.
I really want kids and taking tamoxifen I cannot have kids and taking meds for 5 years is too long. I am planning to discuss with my medical oncologist to see if i can just have surgery + radiation and try to get pregnant right away and after that can i take meds.