received the rest of my pathology report...help!
I posted a few days ago about being newly diagnosed and scared...I now have a bigger picture of my tumor. I have IDC grade 3, triple negative. What in the name of Latin does that mean? I have looked it up on the internet but it's all medical jargon and I just get overwhelmed. I am 37 and have only had this tumor for the past few months, sounds to me like it may be an aggressive tumor? Thanks for 411 ladies. Angi
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IDC means Infiltrating Ductal Carcinoma, which means that the cancer originates in the ducts of your breast, rather than in the lobes. Infiltrating (also called invasive) means that it is no longer contained, but does not necessarily mean that it's spread outside of the breasts.
Triple negative means that:
1. Your tumor does not respond/grow when exposed to estrogen.
2. Your tumor does not respond/grow when exposed to progesterone.
3. You are negative for the HER2 thingy mabob. Ok, I've forgotten the details on this one!
This impacts what treatments will work for you. For instance, since my tumor does respond to hormones, I can take a hormone blocker to help prevent the cancer from growing. Since you are negative, that option is not available to you. But there are lots of other treatment options!
For more information, you'll need to know the tumor size and probably other things. A long talk with your doctor or surgeon is next on your list of things to do. They'll be able to talk in detail about your treatment options. It helps to bring a friend with you to help you take notes and remember what was said.
Hugs and best of luck to you!
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From what I understand of tumors (which admittedly is very little, in the scheme of things), it was very likely "there" (in your body), but not of a detectible size until it ultimately was detected.
My tumor was an IDC, grade 3 tumor, about 1.5cm in size.
It did not show up on my mammogram a year ago, so I asked my doctor if that meant that it just grew in the last year.
He told me that was not likely, even though a grade 3 is a more aggressive growth tumor, it was likely growing over the last 5 to 8 years. In other words, the cells were there, just not of any substantial "mass" to be detected either by the mammogram or the manual palpatations.
Even so, I still can't decipher a good portion of my pathology report (from the biopsy). I'm currently waiting for the pathology report from my lumpectomy (which was last Thursday), which, I've been told, is supposed to be ready by tomorrow.
I will ask about that growth thing. It really has me concerned, as well.
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Hey Angie, get on the phone with your doctor or his nurse ASAP! You have a right to know and understand your pathology report!! I take a tape recorder with me to talk to my onc, because after I hear the word CANCER...all the rest is Blah, blah, blah, I don't hear anything! I don't want to interpret without seeing the report. You will be OK! (((((Angie)))))))))) SV
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Angie...
Im not tiple negative, Im actually triple positive, but here is a link to a website strictly for TN woman!
You should get lots of info and support there as well!
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Hi Angie,
I too am trip neg. Getting those words trip neg can be scary especially when you are already reeling from the word cancer.
They do say triple negs do respond well to chemo.so the oncs tend to be more aggressive with that ...which did make it easier to endure knowing that it would help. Also I read the chance of recurrence's get lower as you get past the 4-5 year mark. There are also new drugs out there that are targeting the triple negs, so that is promising. I am coming up on 2 yrs since dx and doing great.... so don't lose hope, take one day at a time.These boards are a great source of info and comfort.
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I honestly felt like someone kicked me in the stomach when I got the rest of my results. I found my tumor in Dec, it hurt..still does! I am really scared and all the internet info is so overwhelming. For those of you that are triple neg how long did you have chemo? I just want to cry right now but I can't because my girls(ages 7,9,11) are home and already scared enough without seeing their mom cry. I have my first appointment tomorrow with a surgeon and an oncologist on Thrusday and then a second opinion scheduled for Feb 9 but I am concerned about waiting that long. Help, I'm really scared and I haven't even been staged yet..that just may send me over the edge! Thanks, Angi
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Angie,
the beginning is the worse part! Unfortunatly, they wont know your exact stage untill you have the tumor removed and your lymph nodes checked. Best to have surgery ASAP, or maybe do chemo first. One good thing about chemo first, is you and you team of docs will know that the chemo is working. They usually do chemo first for larger tumors, but if the waiting times for surgery are long....chemo first is the way to go.
Try to stay off the net. I know easier said than done. Maybe make an appt to see your GP and ask for some anxiety meds to help you right now. A lot of us woman have asked for some help. Ativan is great...takes the edge off things and can help with sleeping.
hugs coming your way...I was 30 when I was diagnosed...my daughter was 22 months. Im 32 now and my daughter is 4 starting kindergarden in September.
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Angie,
you will feel much better (i hope) after getting more info from your surgeon and onc this week. it made me feel better to have a game plan. Make sure to take someone with you filter the info you don't hear as it can be overwhelming ! The Feb. 9 appt. isn't too far away from these appt. so I wouldn't worry about waiting too long, it might put your mind at ease to have a second opinion.
You asked how lond did you have chemo for trip negs.....all are different but I had surgery first, tumor was 1.8 so wasn't that large, then had chemo - 3 rounds of FEC 3 weeks apart then 3 rounds of Taxotere 3 weeks apart. Started May 7 and ended August 22. , then radiation.
good luck with your appts.
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Hugs to you girl. Take a deep breath. This IS actually the worst part. The unknown can eat away at you. I clearly remember what you are going through. My doctor gave me xanax right away which I took for about 1.5 months and then I didn't need it anymore. There is so much treatment out there. Be strong for your girls....use them as a source of strength. This time is very hard because you don't know what direction you are going in. Keep up with the support from this website but I wouldn't dig too much into other sites. There is alot of different information out there that can just add to the anxiety that you already have. I'll say prayers for you to ease your anxiety. *Hugs*
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I don't share your diagnosis, but I did share your anxiety when I got my biopsy results and started reading about all the dreadful things that could happen. Once my spouse and I met with the surgeon I felt much better because now we had a plan of action. However, in retrospect I wish I had met earlier (that is, as soon as my biopsy was scheduled instead of just before surgery) with my gyno to talk about this as he is well-informed and very caring. Please take care of yourself, but it's normal to freak out at times!!
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Angi,
I'm so sorry you have to be in this place. It's a scary time with so much information coming at you, all at once. If possible, take someone with you to each appointment so they can take notes.
I agree...stay away from the Internet and get your information from your doctor.
I had 4 dose dense rounds of A/C (Adriamycin/Cytoxin) followed my 4 rounds of dose dense Taxol. I had to learn to give myself Neupogin shots for 7 days, starting on day 3 of each cycle.
Big hugs to you...
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Angi,
I am triple neg too. I had 4 DD AC every two weeks and then I was supposed to have 4 DD Taxol every two weeks, but after the first I had to switch to Taxotere for the remaining three doses as I developed neuropathy immediately upon the first Taxol, so onc switched me to Taxotere every three weeks. I then had 33 rads (last 5 were "boosts"). Just completed rads in early December. Best of luck to you - it's not something I would wish on anyone, but you will get through it all, just as we all did.
Hugs,
Linda
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Hi Angi,
Another young triple neg here with 3 children! So sorry you find yourself here. As they say, it's tough but doable. You'll find strength you never knew you had.
I had double mastectomy, ACx4 and then Taxotere x3, then radiation. When I was first diagnosed, I was told to expect about a year for treatment. I'm about 14 months out from diagnosis, and I'd say that was pretty accurate.
Triple negative is scary, but it is proven to be extra responsive to chemo because it is so fast growing. It's very common for TN to appear out of nowhere. Check out the Triple Negative forum here, and also www.tnbcfoundation.org as mentioned above. We have some unique traits, but a lot of other threads here will be helpful too.
Stick around and ask lots of questions. Chances are, whatever you are going through, someone here will have experience with it! Feel free to PM anytime!
Hang in there.
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My husband was my rock thoughout my journey with breast cancer. We are so much closer now and I no longer feel so scared and alone.
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Also, write down all your questions before your next visit-no matter how silly.
Take someone with you.
My husband and I had only been married 1.5 years when diagnosed. Your hus/SO needs to be involved. Plus, when you can't remember what the doc said, he/she can tell you!
Breathe.
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I was reeling when I got my triple negative diagnosis. I already knew what it was, but was SO not expecting that (I didn't fit the usual profile). I felt completely overwhelmed and so fearful I'd die of it --soon! I still feel that way sometimes, but now that I'm in treatment, my outlook is much more positive overall. And many more women beat trip neg cancer than not....
I will disagree with the others about the Internet though. Providing you search through reputable sources, you will find lots of good information on triple negative cancer, and I have on two occasions drawn articles to my onc's attention and we have come to treatment decisions together. I guess it depends on the person - but I feel more in control the more knowledge I have. And while I like and respect my onc, she is a clinician first, not a researcher. There are also many trials involving trip negs as it is a hot area of research, so be sure to ask or research on the Internet if you're interested.
I did 4 rounds of AC and I am now to start 12 weekly taxol treatments. PM me if you want some research links. Try and take a deep breath and know you will be okay...
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Luah - hi, I would also be interested in some of the research links on Triple Negative. Could you send to me?
Thanks in advance!
Sherri
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