31 years old - Just Diagnosised - Invasive Ductal Carcinoma
I got my call this morning. I’m joining the club no one wants to join. I have breast cancer and worse it’s spread to my lymph nodes. The nurse referred to it as
- Invasive Ductal Carcinoma
I’m going in to see the nurse for next steps shortly. I don’t have any staging. I don’t know if it’s spread. I’m afraid because I’m young, it’s in my lymph nodes, I’ve had dirreah for two month with no explanation as well as lots of back pain which I thought was from dirrethat this has spread and I have very little time left. I only was alerted to the cancer because My husband found the lump on New Years Day.
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I’m really frightened. I have posted in the waiting for results threads. I’m 31 with an amazing husband and two beautiful small children.
Comments
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so sorry you need to join, but welcome! Did the nurse say specifically that it’s spread to your nodes or is the word invasive why you say it has spread? If it’s the word invasive, it just means that it is not confined to your ducts. I don’t think they can give a definite on the lymph node spread without biopsying the nodes. The timeframe you’re in right now is the hardest part - not knowing what’s next and having to wait for more answers. See what the nurse has to say on her call today and be sure to ask questions about anything you don’t understand or anything you’re wondering about this process. And in the meantime, don’t forget to breathe
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Really sorry you are dealing with this. I was older than you when I was diagnosed, but my kids were really young - one had turned 2 three weeks earlier and the other wasn't yet 3-1/2. I had a big tumor and a bunch of positive lymph nodes, at least 2 of which were big enough that they could be felt. This was more than 7 years ago now. Treatment with small kids was terrible, but we got through it with a lot of help from family and friends.
There are a ton of picture books written to help kids whose moms have breast cancer. Scan them before reading - I wish I could remember the title of the one where the husband/father character seemed borderline abusive - but most of them are good. My older child came back to them lots of times over those months, and they did help her get her questions and worries out.
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(I posted this in the other forum, but I am posting it here as well so you see it,RA.)
RA, I am so very sorry. Truly.
Deep sigh
You are going to have a great deal of information coming your way. I want to give you something to talk about with your team, especially your medical oncologist (the one who will be dealign with you when it comes to chemo
Ask them about this
Testing to determine which chemo works for your kind of cancer
It's my understanding that this is newer technology. It tests a tumor with different kinds of chemo to see which works the best. The reason I say this is because I had a friend who was given 3 different kinds of chemo. When she had this test done about a year or so later, it showed that of the 3, only 1 was actually working for her kind of cancer. And it showed that another kind of chemo, typically used in colon cancer, would work for her.
I know you are probably in a fog right now and that your memory may not be able to hand on to this, so print it out and mark with a marker on top of it "DISCUSS WITH MEDICAL ONCOLOGIST"
I wish I could hug you.
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@Lula73 - I had a biopsy of my breast and lymph node and they both tested positive.
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Do you know anything else other than it's IDC with a positive node?
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I went and picked up my paperwork. I'm insane crazy about making sure I have all my paperwork. Showed up with files, notebooks and an agenda.
I'm a little confused about what thepathology report says:
Breast
• Invasive Ductal Carcinoma
Nottingham Histologial Grade 2
— What does Grade 2 mean
Greatest Contiguous Focus at least 11mm
Lymph Node
• Postive for Metastatic Carcinoma
At least 3mm in greatest extent.
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I am sorry! You and me are in the same situation... I was diagnosed under a year ago...31 years old with twosmal children..
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RA,
This link to the "Your Diagnosis" on the main page of BCO will help you understand the various terminology, that includes Grade (grade is divided into 1,2, or 3 and is about how fast growing your particular cancer is. You is a 2, meaning it's not the slowest, but it's not the fastest, either. It's intermediate)
The left had side of that page the link will bring you to will have other links that will help you understand
Take some time to go to the main page http://www.breastcancer.org and you will get some good information put in layman's terms
And does the report read "3mm at it's greatest extent" or "3cm"?
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RA: I am sorry you are going through this. But, based on what you’ve shared so far, you may be better off than you think. First, invasive ductal carcinoma is pretty much the most common type of breast cancer. That means doctors are familiar with it, treatments exist, and people have experience and can help answer questions. Second, Nottingham grade scale is 1-3. 1 means the tumor cells show slow growing characteristics and 3 means it shows aggressive characteristics. 2 means it’s middle of the road, average growth. This is used to help the medical team determine how to treat the cancer. Lastly, it seems you have lymph node involvement but at this point it’s minimal. So far, only 1? If that’s the case, then you’re still doing just fine! The note about metastatic carcinoma means that the breast cancer cells are present in the lymph node. Any time a cancer cell spreads from its place of origin, it is considered metastatic.
As you continue through this journey (and it IS a journey), you are going to have a lot of questions. I would recommend writing them down and asking your doctors and nurses. Even if you are asking the same question multiple times. It’s OK! Take a friend or family member with you to appointments. They may hear something that you missed. And remember to take your time to make decisions. There is no reason to rush into things.
Also, you may want to ask if there are clinical trials that you qualify for. If anything, you might find there are trials that give you additional monitoring during treatment or offer different options that aren’t normally available.
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@marie5890 - It says 3mm not 3cm. So it seems to be very very small. That’s for the lymph node
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@Anna I’m sorry you’re going through this journey as well. Maybe we can message and keep each other positive through our treatments. So scary having such little ones.
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RA, I'm so sorry. Good news is that 11 mm is 1.1 cm; that's about 3/8 of an inch so very small. The lymph node infiltration is concerning, but it is also very small. So please try not to be frightened! The next few months are going to be hard; we've all been through it and will be honest with you. But soon the tests and the treatment will be done -- and you will enjoy your family for many, many years to come.
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RA,
Do you have your mammo and U/S reports as well as this pathology report? I know you had a U/S guided biopsy and that the pathology report is based on those samples.
They may send you for an MRI to get another view of things. You are in the beginning stages of getting a clear picture of what you are dealing with. When you get a treatment plan in place after all the data is in, you will feel better and more in control, although, like Georgia has said, the next few months will be hard.
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Nothing I can add that has not been said. It will get easier with a plan in place. It will. And you can do this.
Ask any and all questions. Someone will have an answer or direction to point you in. Unfortunately, we all get it.
{hugs}
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Yes we can! I have gone through surgery (x2), 4 AC, 12 Taxol and 15 radiations..
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RA and Anna. So sorry you guys are going through this. I unfortunately am in the same situation as you both. Dx with IDC on 1/3/18 with + node involvement confirmed by biopsy. +ER, +PR but her2 and fish are equivocal (meaning they don't know). Saw two diff breast surgeons (at hospital I work at and JHP for 2nd opinion) who both feel it is best to have chemo first, then surgery followed by radiation. They believe this is best b/c of the node involvement and not knowing if it has spread. The hope is the cancer will go away and will only need sentinel node removed to lessen risk of LE. I have a bone scan tomorrow and MRI/CT on Wed along with genetic testing. After that I see an MO on Friday and another on Monday who will determine the ultimate best plan.
I do not have any children and am 37 yo. Ironically was discussing freezing my eggs prior to all this happening as me and my long term boyfriend are still on the fence (him more than me) about have kids. I can't imagine what you two are going through with small children. Waiting to be staged before I decide to see fertility.
We are all in this together and I am here if you need anything as I know you will be for me. Prayers and positive thoughts to you both and everyone else going through this!!!
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@LHebs - I see the surgeon tomorrow. I’m concerned they are also going to suggest Chemo first. I really want to have a bilateral mastectomy and remove what is in my breasts and lymph nodes as soon as possible. Then radiation or chemo. I expect to also have an MRI and that will let us know if the cancer has spread. Since, I had planned to have two children and have two children. I won’t be looking into saving my fertility so I don’t know much about that. I’m absolutely here for you any time. This is a battle we can face and beat together.
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@Anna your node involvement is the hope I’m cleaning too. I’m afraid of the nodes more than the breast cancer.
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I agree the node involvement is what scares me the most too. The way the surgeon explained it about the chemo first made sense. The fact that the nodes are involved does mean the cancer could be in the blood stream (hopefully not). By getting chemo first, it could kill what is circulating as well as shrink the tumor and lessen the amount of nodes involved. Lymphedema is a terrible complication from having you axillary nodes removed or total axillary dissection. If you can lessen the amount of nodes removed, in decreases the risk of developing lymphedema. Due to my positive node on biopsy, both surgeons recommended total axillary dissection. I am waiting to hear what the two MO recommend.
I am interested in what your SO recommends. Please keep me posted.
Good luck tomorrow!!
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Agreed Anna, you are my hope!!!!
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I was pregnant when I went trough mastectomy and axillarydissection (unfourtenatly I do have lymphedema now)... Then I went through C-cection...then chemo..
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@Lhebs — The GS and Oncologists came back with chemo first and surgery after for me as well. Though, it’s ultimately my decision on which option is the right choice. I dunno if I can live with cancer being inside me for months.
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I guess it's a good thing that they all agree chemo first. I am torn too but it seems like the research shows it is better to have chemo first. Plus may spare some of the nodes. That way if it is floating around it will be killed sooner. I am 90% sure I am going to have chemo first. Will ultimately decide after I see the MO next week. Please keep posted. My bone scan came back clean today so 1 test down, 2 more to go!!!!
Continued positive thoughts and prayers!!!!!
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