Invasive??

tightrope

I was just diagnosed last thursday....(the day before my 40th birthday) and obvisouly I am new here. 

I will type out my report. I am currently going to a free clinic for my regular doctor. They don't know anything about this type of report. I was told that the tumor is now maligant (one year ago it was benign and 1.5 cm smaller then now) I personally know that the tumor is attached to my chest wall, it is 6.5 cm's total, oblong shaped and has wrapped itself around bloodflow.

The report from my last biopsy says this:

Surgical Pathology Diagnosis

Breast, left, needle biopsy

Multiple foci of ductal carcinoma in situ including high grade comedo-type microcalcifications are present.

(see comment)

Surgical pathology comment:

A p63 stain was used on both blocks to rule out invasion. Although no definite invasion can be seen, there are foci of infammatory cells present and microinvasion cannot be ruled out.

Now, I know when they did my mammogram, they felt it was very possible that it had already spread into my armpit as my lymphnodes are swollen, hard and sore (even in my neck, which you can see them when I turn my head) and they said they looked calcified too. So?? I have no idea what any of this means??

Do I have DCIS?? Is it invasive?? All I know is that it's malignant...and she (the Nurse practioner) couldn't tell me anymore then that....anyone here know how to read these reports?? I haven't even gotten any info on where I am supposed to go next. 

tightrope

oh yes...and both Estrogen and Progesterone receptors are negative.

Flat4them

Hi tightrope

 I wish I could help you right now and answer all your questions. I live in Canada and our health system is very different. One thing I know is that there should be a patient navigator who can help you through the process. Your local cancer society should be able to steer you in the right direction.

 I know that my surgeon was the one to answer all my questions about the diagnosis but I learned a lot from cancer sites-up here it is the Canadian Cancer Society. This site breastcancer.org has a lot of good info.

keep in touch

you are in my prayers,

lanagraves

Get thee to a cancer center - and quick. There are programs out there to help uninsured and underinsured patients, and there will be a patient navigator there who can help you. From the sound of it, it is possible that it is DCIS with no invasion. However, with the lymph node symptoms you describe, it may not be. In either case, the sooner you are evaluated by an oncologist and can begin treatment (in whatever form needed), the better, especially since you are hormone-receptor negative. Did they happen to test for HER2-neu status?

Beesie

tightrope, 

From the pathology report, it appears that the needle biopsy has only found DCIS. But needle biopsies that find DCIS are wrong in about 20% of cases - in those situations, once the surgery is done, some invasive cancer is also found.

In your case, with the foci of inflammatory cells found in the biopsy sample, with the size of your tumor (at 6.5cm, it means that there is a lot of tumor that wasn't biopsied by that needle), and with lymph nodes that are hard and swollen (I assume that you had this problem before your biopsy; biopsies can cause lymph nodes to react), it sounds as though there is a fairly high probability that your surgery will uncover some invasive cancer, in addition to the DCIS.  It is very common to find DCIS and IDC together; when that happens, because the IDC is the more serious condition, the staging and treatment are based on the presence and pathology of the IDC.

As for next steps, you need a breast surgeon and an oncologist.  The surgeon will work with you to put together a plan to remove the cancer, either a lumpectomy or mastectomy, and the oncologist determines what other treatments may be required. Either your doctor or someone at the clinic should be recommending these doctors for you, setting you up with an appointment and forwarding your films and pathology report to these doctors.  I'd suggest that you call your doctor's office to ask them if they will be doing this. 

I hope that helps.  And good luck getting to and through the next steps.  

p.s. lanagraves, HER2 status is not necessary for DCIS so since the biopsy sample just found DCIS, there would be no HER2 result.  Should the final pathology show invasive cancer, then tightrope will get an HER2 status. 

tightrope

thank you for your responses everyone. I am still so confused. The clinic said they would call me back with an appointment when I was there on Thursday....however, Friday came and went and now today. I know its only my life....and they see a lot of people in a day...but come on....there are people that see their doctors faster then this. I am trying to be patient. I guess when I know more, I will post it. Thank you again.

tightrope

I did call them. Seems they were on vacation. It's bad enough that I had to wait so long to be approved for a grant (it's taken almost 6 months to get this to go through)...I should get some answers tomorrow as to when my navigational appt is. 

Flat4them

I'm glad you got info -I totally agree that you should politely keep on the case as it is your body. This also helps you to maintain your identity through the treatment process. Cancer has invaded your body but it doesn't define who you are. You are an intelligent delightful young woman and you are doing the right things- keep asking questions and keep demanding (politely of course) answers. You will get more attention if you keep at it and are sweet about it.

keep us informed of your progress

tightrope

thank you so much, flat4them. You are a very supportive person. I tired to call today but no one is answering the phone. I know one was sick and the other was on vacation....hopefully they will get back soon. 

tightrope

I have another question....what if its not ER or PR?? Tomixifen won't work then, will it?? What types of treatments do they have then??

Flat4them

Tamoxifen is used in treatment of pre-menapausal women, there are also other drugs used as well. The best thing you cab do at this point is to research through authentic breast cancer sites what treatment is available, write down questions you have and (as hard as it is) don't panic. I had a lot of questions when I was first diagnosed and I found that the patient navigator was great at answering my questions and calming my fears. I tried to be pro-active in my treatment without being aggressive. I also had a friend who had gone through a cancer diagnosis and treatment 5 years earlier. It really helped to be able to talk to someone face to face about what was going on. There is a program here in Canada that matches new cancer patients with a mentor-this is offered through the Cancer Society. Maybe you can check that out.

keep in touch

tightrope

This is my second bout with cancer in my life. (different cancers). I know its really bad to panic. I thought that Tamoxifen was given to women that were ER/PR or HER2 positive?? So that's not the case then. I have been reading lots of things but they tend to get jumbled. I should find out on Thursday when I get to see the surgeon. I will have a breast navigator to help me through all of this and I plan on looking into some local support things too. Since its thru the county I hope that the Navigator should have some more info for me as well. Thank you!!

debbie6122

tightrope- Tamoxifen is used for women who are ER+  Doesn't matter if they are post or pre menopausal.  If they are Her positve they would recommend herceptin.  Tamoxifen is a pill that is used for 5 years usually after treatments end. There is a lot of information to take in and can be confusing, I would try not to google they are usually outdated and not always correct. You can find a lot of good information right here on BCO. on there home page. Please keep us posted and we are all here for you to help answer your questions and offer support when you need it. Hope things go well for you thursday.

Hugs, 

Debbie

msphil

yes sweetie, I was on Tamoxifen after my treatment was complete and I did stay on it for the 5 yrs and am doing fine and now 18 yrs Survivor(Praise GOD) and you and all of us are in my prayers Always. msphil

exbrnxgrl

Actually, tamoxifen is not given to post meno, ER+ women as often as are the aromatase inhibitors( Femara, Arimidex, Aromasin). They usually go with AI's over tamoxifen.

debbie6122

Msphil- Congrats on your many years of NED!

that might be the norm for some. but for me, and I am post meno my dr. put me on tamox first I couldn't tolerate it, in fact couldn't tolerate any of them. Wish  I could.

I don't think tightrope has been on here since the 8th? Hope you are doing ok!

SelenaWolf

And, I believe, there are some studies that suggest that two years of tamoxifen, followed by three years on an AI, has a better prognosis than tamoxifen alone.