I don't understand all of this and my surgery is in 15 days

tinamah · New User Joined: 05 Aug 2007 Posts: 4

Where do you learn what all this means. All I know is that after two months of finding a painful lump, going through several test finding out I have invasive ductal carcinoma, setting a date to have my whole breast plus lymph nodes lopped off. I still don't even know who is doing the chemo or where.
After a week of coming to terms with my diagnoses and saying good bye to my womanly curves. I come onto the internet to try and find some understanding of what went wrong, I feel more lost and alone than I did before.

brainman

Hi tinamah, I am so sorry for your diagnosis!! You have come to the right place. I am sure others on this forum can give you better support and information about you cancer. Ask specific questions and we will do our best to answer them.

You do not know who is doing the post surgery treatment? You should already have a medical oncologist. He/she should be (but not always is) the central person driving your cancer treatments and personally taking responsibility for your chemotherapy. The "where" part of your question depends on exactly what chemo your medical oncologist places you on and your overall health.

As for what went wrong, that is a impossible question to answer. There is no 100% correlation between any one thing and most cancers. Even the correlation between skin cancer UV light is not 100%. What causes invasive ductal carcinoma in one person but not in another, remains an inexact science at best.

Having said that, I hear your anger and frustration. You have the right to be angry and I certainly can understand it. Even though I do not have a history of breast cancer, I do have a history of cancer. I have ask what did I do to get brain cancer for years and not found any conclusive answer. Certainly, I have some suspicions. My mother died due to a GBM and several other members of my family have had different types of cancers. I worked with chemicals for 7 years plus college and high school. I have probably ingested more than my share of toxins from the food I eat. However, none of these can explain my particular cancer to my total satisfaction. Over the years, I have come to accept that I will most likely never know. While not knowing is hard, I have come to the conclusion that even if I knew with 100% certainty what caused my cancer, I cannot go back and change anything. I still have to deal with the fact that I do (or at least did) have cancer.

Please, feel more than free to post your questions. I am sure you will find others have asked the same questions and found answers... at least answers that have helped them to deal with their cancers.

I will hold you in my thoughts and my prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Muttsmom

Hi Tina,

When I went to my surgeon to discuss having a mastectomy (I had both removed, but different times. No cancer in the right) and he scheduled surgery, he asked me if I had a preference on which oncologist I wanted to use. I had friends that recommended 1 in one of the cancer institutes here and I wanted to use him. It will be about 4 weeks after your surgery before you'll see your onco for the 1st time, so your surgeon might be waiting until then. I would want to know the game plan too, but the medical and radiation oncologist will be the ones that will discuss treatments with you since that's their speciality. I would call your surgeon's office and make an appt. with your surgeon and go over all the questions you have prior to your surgery. I saw mine on the 19th and had surgery on the 21st. I'm surprised that it's going to be over 2 weeks before you have it done, unless you requested some time to let things sink in. The surgeon I used, and from what others have said, they always do surgery for cancer over elective and will reschedule elective if they don't are booked. That's what mine did.

What did the surgeon say about the pathology report? What Stage are you? How large is the tumor? Did he do a biopsy or a lumpectomy and didn't get clean margins?

Hang in there, you really will get through this!!!! It's hard to believe not long after I turned 43, I found out I was Stage III, ILC with 9+ nodes. It's been 5 1/2 years and I'm doing great.

Hugs and prayers
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

tinamah · New User Joined: 05 Aug 2007 Posts: 4

What pathology report? What Stage ? I did have a biopsy done, that was how I found out about the cancer. I did see what he cut out and it was like a slightly flattened pool ball. He told me a week later that he didn't take it all out. He did say that it wasn't under my arm, but that he was going to take my lymph nodes out. Why?
I am the one that set the date and he said it was fine. We have recently moved into a new house. I have 2 children, one I homeschool. Right after the doctor gave me the wonderful news he looks at the calendar and asks, "when do you want to do the surgery?" I was numb, I felt like I was in a dream, I was having an out of body experience. I turned to my husband and told him to wake me up I was in a dream and I wanted out. So I set a date that I thought would give me time to pull myself together and come to grips with what had happened. I wanted to find out as much info as I could and get my family set and organized for the weeks ahead. A friend and neighbor told me it was months before she could get in. But my family (mother, sisters etc..) acts like I'm a fool.
I also had a needle biopsy done a month before the biopsy but it was inconclusive.
I can advance the appointment if I want to. But thats my question, what would 2 weeks matter? From what I have read this thing has been growing for years. So what is two weeks?
But I will tell you this it wasn't there Saturday and then there it was Tuesday.
My husband loves me inside and out. He loved me in high school when I was skinny and now after 2 kids and a thyroid disorder. And no matter my size I have always had a rack on me, and my husband is a boobman.

Muttsmom

I'd call the surgeon and tell him you want a copy of your pathology report. It will tell you what Stage (as of now how large the tumor is), what kind of breast cancer etc. In my case they removed tissue around the actual tumor and that too was cancerous, so my surgeon knew that I had at least a 3.5 cm tumor and there was more because he didn't get "clean margins", meaning all the tissue he removed had cancer cells in it. There's no way to know if you have any lymph nodes involved without removing them and doing a biopsy on them too. They do a Sentinal Node Biopsy quite a bit now, which tests several nodes and if they are negative, then they don't remove anymore. In my case knowing it was a large tumor, my surgeon removed all of them, and I'm glad about that since 9 out of 16 were canceous.

You said your husband loves you inside and out and that's great. Even if he is a "boobman", he'll love you if you have one removed. He'd rather have you alive with 1 boob, then gone with 2.

You definitely need to get a copy of that pathology report so you'll know what is going on. When you get it, we can help explain what it means.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

brainman

Hi tinamah, look at the sticky not by leo at the top of the Breast Cancer Forum. He lists several things you should know. The Stage of the cancer is very important in determining prognosis and how aggressive the cancer is. Nancy has done a good job of posting her info in her signature block. All that information should be in your final pathology report.

Here is a like to Leo's post:

http://cancerforums.net/viewtopic.php?t=626

I will keep you in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

tinamah · New User Joined: 05 Aug 2007 Posts: 4

Breast, Macroscopic
Specimen Type: Excision
Greatest dimension: 4.7 cm
Laterality: Right
Tumor Site: not specified
Breast, Microscopic
Size of invasive component:
Greatest dimension: 3.8 cm
Histologic Type: Invasive ductal carcinoma
Histologic Grade:
Tubule formation: Minimal less than 10% (score=3)
Nuclear pleomorphism: Marked variation in size, nucleoli, chromatin clumping, etc. (score=3)
Mitotic count (40x objective): Greater than 10 mitoses per 10 HPF (score=3)
Nottingham Grade III: 8-9 points
Primary tumor (pt):
pt2: Tumor more than 2.0cm but not more than 5.0 cm in greatest dimension
Regional Lymph Nodes (pN):
pNX: cannot be assessed (previously removed or not removed for pathologic study)
Distant Metastasis (M):
pMX: Cannot be assessed
Margins:
Margin(s) involved by invasive carcinoma
specify shich margin(s): multifocal
Extent of margin involvement for DCIS: Extensive
Venous/Lymphatic (large/small vessel) invasion(V/L): indeterminate
Microcalcifications: not identified
ER/PR: ER/PR studies are being preformed on block(s) A1 of this tissue.
HER-2/neu: HER-2/neu studies are being preformed on block(s) A1 of this tissue.
Gross Examination
Received in formalin labeled right breast mass is a 17.3 gram, 4.7x3.5x2.7 cm porton of fibroadipose tissue. The specimen is unoriented. The specimen is inked blue and sectioned to demonstrate a 3.8x3.0x2.5 cm firm, white-pink mass with ill-defined borders. The mass diffusely abuts the blue-inked margin. Centrally, the mass is soft, yellow and red. The mass occupies the majority of the specimen with only a small amount of surrounding soft yellow adipose tissue. Representative sections of the mass to demonstrate it's relationship to the blue-inked margin are submitted a A1-A3.

That is pretty much all of it. I wasn't commpletely sure what to look for. I really appreciate any help I can get to understanding what is going on. I just need to know if I should try and get into surgery next week or if it would be ok to wait another week like I had planned.
I know there are thousands of other women out there that are going or have gone thru the same thing and it's not fair to any of them. And I don't mean to be whinny but I am just trying to take care of myself and my family right now.

I couldn't find any sticky thing on the page and there was no Leo, sorry I don't know what you are talking about.

Muttsmom

Hi Tina,

It looks like from what your pathology report says that your surgeon didn't get clean margins and that you had Invasive Ductal as well as Ductal InSitu (contained, not invasive). He has down that node involvement is unknown at this time as well as distant mets (normal since you've had no CT Scans, bone scans etc run and no nodes removed). The tumor that is Invasive Ductal was about the same size as my Invasive Lobular were without clean margins. Me personally, I wanted a mastectomy because there was no telling where else in the breast the cancer could be and I wanted it all gone. You won't know until after a Sentinal Node Biopsy is done during your surgery if you have nodes involved. Some thing that having nodes involved is the most horrible thing, but I had 9+ for cancer, and I know many other ladies that have had as many or even more and they are still doing great MANY years later, so don't let the possibility of having node involvment scare you more then you already are. The Estrogen/Progesterine Receptors will tell if your cancer feeds off hormones (about 80-85% of BC does), which means you can take meds after treatment to help keep the cancer away. The Her2 that you will also find out about is a gene that shouldn't be present, but if it is, there is a drug called Herceptin that you will be taking that has showed great results when taken during original dx. All in all, my opinion based on what I've read, I think your surgeon made a good call in recommending a mastectomy. He's trying to give you the best chance possible of beating this beast. Some surgeons like to be conservative when it comes to breast cancer and lumpectomy vs mastectomy and when it comes to having a large tumor, with a pretty good chance there could be nodes involved, that's not the time to be conservative. My biopsy/lumpectomy showed that my tumor was about the same size as yours without clean margins and I jumped on having a mastectomy.

This is all still so new to you and you're still going through the shell shock, I'd make an appt. with your surgeon and have him explain everything to you. Make sure you take someone with you because our brains can only handle so much info before it shuts down. That way, between you and who you take with you, will get everything the surgeon is saying. I didn't see my medical oncologist until after I healed from the mastectomy and node disection, and then he discussed what kind of treatment (chemo and radiation) I should have. Make sure you feel confident with all your doctors. That is very important.

Keep us posted.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

cjago · Regular Joined: 14 Jan 2006 Posts: 42

Hi Tina, I hope this is soon enough after your last post to be useful. I see Muutsmom has given you lots of good responses, but maybe assuming a bit more knowledge about cancer than you have so far. Sorry in advance if the quick summary below is too elementary.

There are several different sorts of breast cancer, which start in different structures in your breast. Invasive ductal carcinoma (as per your path report) is the most common, I think. Grading is a way of further subdividing the sort of cancer from its pathological characteristics to predict how aggressive it is (how fast it will grow and spread). That's what the "Nottingham Grade" is; III is more aggressive. This being so, haveing surgery sooner rather than later is good, but I rather doubt that a week makes much difference and your surgeon should have said so if it did.

Breast cancer (any sort) spreads to the rest of the body via the lymphatic system. Therefore, when women have surgical removal of a breast tumour, they also often have some lymph nodes from the armpit of the affected side removed so they can be biopsied to see if the cancer has spread to them. The "stage" of the cancer is calculated from the size of the original tumour, whether any lymph nodes are affected, and whether there is any evidence of spread elsewhere in the body. So you won't know the stage of your cancer until you know about the lymph nodes post-surgery.

If the lymph nodes are clear, there is a chance that you can be completely cured by surgery (quite probably with back-up radiotherapy and/or chemo as well). If the cancer has spread, it can't ever be completely cured with our current state of medical knowledge, but it can be slowed up and knocked back for a long time (in my case for 11 years so far) and new treatments are coming on-line all the time.

Treatment post-surgery will depend on stage, and also the results of the ER/PR and HER-2 studies referred to in the path report. ER/PR refers to whether your cancer needs estrogen or progsterone to survive and grow - if it does (ie is ER+/PR+) there are all sorts of hormonal therapies available in addition to radiotherapy and/or chemotherapy.

Best of luck and let me know if any more info would be useful. I'm not s doctor, just a longterm breast cancer patient.
_________________
adenocarcinoma of the breast, now widely metastatic (stomach, liver, pelvis, pancreas, bones, skin)
survived 11 years so far

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