Looking to find advice and suggestions
Hello all:
My wife (45 years old) was just Diagnosed with Invasive Ductal Carcinoma. We are "days old" with this and I don't know very much about cancer. So please excuse if I use the wrong terminology. We met with the surgeon (who we both really like and are very comfortable with) who stated that its stage 1 and the tumor size is 0.6 cm. The initial pathology report stated "Not identified" for both Lymphovascular and Perineural Invasion. My wife elected (and I agree) on a Lumpectomy which we are told will be followed up with about 30 radiation treatments pending no complications. The scary part is the doctor explaining to use about removing some Lymph nodes and testing during surgery. Although the pathology report says its not indicated, of course they are going to check more closely at time of surgery.
The DR began to explain the following, but Im foggy on what he meant"
Tubule formation grade : 3 of 3; Nuclear Grade: 2 of 3; and Mitotic Grade: 1 of 3 (if any of this helps).
6 months ago she had an abnormal mammogram. She was scheduled to have another in 6 months and that's when they noticed it changed. A biopsy was conducted and the tumor was found. We were told its in its very early stages
She's not showing much, but I know she is scared. And I am scared. We have two small children. Can anyone let us know what to expect? Thank you and best wishes for all of you also!
V
Comments
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mitosis grade 1 is good, says very slow growing. You add up the three scores (3+2+1) to get the Nottingham grade, which right now looks like grade 2. That means the cells are moderately differentiated from normal looking cells. Grade 3 is the fastest growing with a Nottingham index score of 8 or 9. No invasion, good. Tiny size, good.
You won't know about further treatment until they get the estrogen, progesterone and her measurements back. How wide were her margins around the tumor? Did they tell you?
Best of luck, and so thankful it was caught early for her!
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Thank you for the reply Italychick
As I mentioned in my original post, we are very new to this and still trying to learn how to navigate through everything and learn. I cannot see anywhere on that "Surgical Pathology Report" anything about margins around the tumor. The surgeon may have mentioned this but I don't recall. I'm going to list the "Breast Carcinoma Characteristics" section below. If you don't mind, can you take a look and give me your interpretation?
Tumor Anatomic site: Right
Operative Procedure: Ultrasound guided biopsy
History: Right Breast Mass
Tumor Histologic Type: Invasive ductal carcinoma
Tumor size: At least 0.6 cm (later at the meeting with the surgeon we were told its 6-8mm)
Tubule Formation grade: Grade 3 of 3
Nuclear Grade: Grade 2 (of 3)
Mitotic Grade: Grade 1 (of 3)
Mitotic Activity index:: Approximately 2 mitoses/10 hpf
Blood Richardson Grade: Grade II (0f III)
Lymphovascular Invasion: Not identified
Perineural Invasion: Not Identified
In-Situ Component: Present
In-Situ Carcinoma type: Ductal Carcinoma in-situ
Microscopic pattern of DCIS: Solid and cribriform
DCIS size: Approximately 1mm
Comedo Necrosis: Absent
ER/PR/Her2neu: To follow as separate report
Stage: At least AJCC Stage I (T1b Nx) (at meeting with surgeon he only motioned stage I)
We have an appointment with a Doctor on Friday to consult about Radiation treatments then the week after will be surgery. We "thought" most of our questions were answered after we left the Surgeon's office and they said to call any time and they would answer anything, but of course many questions have come up and its the weekend... We are just trying to learn all we could.
Thanks again.
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Husband560: IIRC, "margins" won't apply to a biopsy because the surgeon isn't taking the whole tumor--(s)he is only taking a representative sample, to check whether it is cancer at all.
But write your questions down as you think of them, and bring a pad of paper to the next doctor's visit.
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sorry, I misunderstood. I thought she had the tumor removed. T1B relates to the size of the potential tumor. One thing I asked for before surgery is that my surgeon go for wide margins around the growth because then there is less chance for stray cancer cells to remain behind. At this point you won't be able to figure out anything else until the tumor is removed.
Right side is better than left, in my opinion, because the left side is more problematic with radiation for the heart, but they have gotten a lot more focused with radiation treatments.
When I was in your wife's situation, awaiting surgery, I did my best to not think about things and just wait until after surgery to focus on treatment. I know it isn't easy, but there isn't much more you can do right now until the growth is removed and you know what the receptors are. My tumor was twice the size of your wife's, and my surgeon said mine was tiny, don't panic, get through surgery and treatment, and then try to move on with your life.
Hang in there, and keep us posted on how things go
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Husband-
Seems like many positives on the information so far. As you can she from my signature line I had some similar characteristics as your wife though mine was grade 1 (also with a mitosis count of 1) and I am 46. Like italychick said your wife's hormone and her status (er,pr and her2) will help dictate her treatment plan. When you receive that information, there also might be a ki67 % number. ( some get it - some don.'t). That tells how quickly the cancer cells replicate themselves which is another piece of her particular cancer puzzle. I was treated at an NCI designated treatment center. ( national cncer institute ). You can google it and find the closest location to you. It might be something you want to investigate and get a second opinion from. I was able to have my lumpectomy (Lx) and my radiation was done during the surgery in a one shot deal. The Lx was very manageable and there is a great support board on here called the lumpectomy lounge to ask questions and get support. I agree waiting to find out if lymph nodes are 100% clear is anxiety producing. I just focused on that mine looked good so far and with a "lazy" cancer I had a better chance of them being clear. After LX, many have a test called the oncotype dx. It assess from her particular tumor whether chemo would be beneficial or not. I received a low score so chemo would not benefit me. Even though my tumor profile seemed like I would not need chemo, I was happy my MO ( medical oncologist) ordered the test to make sure. You and your wife are in the worst period right now. My husband and I felt like deer in headlights. However, once you gather your treatment plan it starts to get much better. Keep us posted and feel free to ask questions. -
Husband, you sound like a loving and concerned spouse. I can really identify with your wife because I've only been on this road for about 2 months. One of the most maddening things, I think, is the seemingly slow pace of progress. First, you have the mammograms or ultrasound...and wait for the results. Then you have a biopsy...and wait for the results. Then you have the next step, either lumpectomy or in some cases mastectomy...and you wait for results. And then you see the oncologist, who will do various tests (for which you will wait for results) to help figure out whether you would benefit from chemo and/or hormone suppressing drugs (and obviously, these steps can be rearrranged to fit each individual woman).. If no chemo, you go see a radiation oncologist who will set up the radiation. Nothing happens quickly, I'm afraid. Lucky for us, breast cancer is not usually a fast-moving cancer, so we have time to get our heads wrapped around the whole idea of breast cancer, and make a good plan without feeling like we're rushing into anything headlong.
This is the time for you two to be asking questions, lots of questions. Be sure you write them down and write down the answers the doctor gives you. Understand that you may have to ask the same question more than once, and maybe more than twice. That's very common. I used to work in the NICU, with very premature babies. We understood that parents were under tremendous stress and whatever we told them, they would need to ask over and over, sometimes 6-7 times. We never got mad about it. It's just the way the human brain acts when we're under duress.
Tell your wife, if she is interested, to come drop in to the Lumpectomy Lounge. https://community.breastcancer.org/forum/91/topic/800729?page=264#post_4501543
They are a great group of ladies. Some have been there a long time and others, like me, have only been there for a few weeks, but we have a great time and they have been wonderful support for me.
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Hi Husband,
I had a Breast MRI after the biopsy and the results of the MRI showed a large but diffused area of DCIS that never showed on a mammogram. DCIS I believe, is precancerous but needs to be removed when it is seen. So the DCIS and the Invasive Ductal Carcinoma lump that was biopsied caused me to have a mastectomy instead of just a lumpectomy. If they have to remove too much you aren't left with much--you get the picture.... My friend is a breast cancer malpractice attorney and he told me to be sure and get the MRI to see if there is additional areas of concern. Which in my case there was. It also showed my right side was clear. Get a Breast MRI before the lumpectomy.
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I second getting a breast MRI. I did that before surgery so the surgeon knew what to take out going in. And if they find more, no sense putting your wife through a lumpectomy only to then have to do a mastectomy.
Gentle hugs, and please keep us posted
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I greatly appreciate all the replies and suggestions. Please keep them coming. It's still all so surreal and reading all of this helps.
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There are amazing women on this site who know so much about fighting this disease so ask away and someone will be able to answer your questions.
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We're all happy to help, Husband! Keep checking in and continue to let us know how your wife is doing!
--The Mods
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Hello all! Thank you all again for all the responses. It's been a long day. We met with the radiation oncologist early this morning. I felt is was a good appointment. My wife is scheduled for the lumpectomy on October 5. As of right now, the doctors are calling it stage 1, but of course this all hinge on whether its spread to the lymph nodes. All initial indications show it has not, but we cant be certain until surgery. If no spread to the nodes, radiation treatments will follow (two weeks after surgery, 5 days a week for 3 weeks in the beginning) with a medication that I cannot remember the name for the life of me. Something that starts with a "T". She will have to take it for at least the next 5 years. She is EG+ which is why they said they will use this and I was told EG+ is a good thing, per the reason for this medicine?.?
So with all this today.... I take a huge breath!!! lol. many of you have said we need to try to calm ourselves and wait until we have definitive answers! We are going to try to do that and worry about things on Oct 5! This weekend I'm taking my 10 year old son camping with his cub scout pack.. We've camped before, but this time is different and special in the same sense. I asked my wife, Lori (isn't that a beautiful name?
) if she wanted to come with us? but she insisted that my son and I do this like we've done before and bring back the stories to her to enjoy!
I will keep you all updated! Thank you for listening. God bless you all and I think and pray for each and everyone of you!
Vince
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They are probably saying she is er positive (positive for estrogen receptors) and recommending she take Tamoxifen. Again, all the treatment will be finalized once they do the excisional biopsy and know the final pathology report. But everything sounds positive.
Was there any mention of using intraoperative radiation therapy (IORT) at the time of the lumpectomy? It is a one shot deal done at the time of surgery rather than over weeks. She may be a candidate for it, but I'm not sure if your facility has it. Not all do.
But so far, everything sounds positive for minimal treatment, and I'm hoping it all goes well for you both
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Dear Husband,
Like plumster1, I, too had a lumpectomy and intraoperative radiotherapy (IORT) meaning that after the breast surgeon did the lumpectomy, the radiation oncologist administered 20 minutes of radiation directly in the tumor bed DURING surgery. I left the hospital that day with minimal pain and no need to drive daily for radiation treatments over the course of 5-7 weeks since it was done in surgery.
I highly encourage you to google "intraoperative radiotherapy" and the city you live in to see who does it.
It was really worth it for me and all of us who have had it done.
Lastly, yes, during surgery, my breast surgeon removed the tumor and 3 lymph nodes. The lymph nodes are then sent to the lab to determine if cancer is in them.
After surgery, the oncotype DX test was ordered by the medical oncologist. This test is done using the actual tumor obtained by the lab from the hospital. They look at the genes in the tumor itself to determine how likely the tumor is to recur. The results of this test will determine if one will need chemotherapy. I get the results from this test on Tuesday. Only one company does all the Oncotype DX tests (they developed it) and their website has many helpful videos. Google Genome Health to learn more about this test.
I know this is overwhelming and scary -- I was just there myself. As someone described, it is like being in a war we didn't sign up for. This board has been a lifesaver.
Hugs!
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Hello all. Lori had surgery on Monday, October 5th. It went extremely well. The lump was removed and 2 lymph nodes. The cancer did not spread anywhere else! She is sore, but otherwise doing very well. She will go through a regiment of radiation treatments and will be on Tamoxifen at least the next 5 years. Thanks for all the advice and support you all gave. I will update here as much as I can.
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That's fantastic news!
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Can I ask if you have dense breasts? I do and a second malignancy was found on a pre op beast MRI. My question is not all docs do this before a surgery decision is made. I have a friend who was recently diagnosed with IDC and during the lumpectomy they found additional DCIS. She does not have dense breasts but she is young, 41. Her doc refuses to do the MRI to see if there is anymore DCIS so thats why Im curious about case it. My doc in NYC does them routinely on all his patients regardless of breast density. In my case it probably saved my life, so Im worried about my friend. Thanks for sharing.
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dtad, you didn't ask me personally but since you asked...I have dense breasts and by the time IDC was caught by a mammogram it was already stage iv but at the time of my mastectomy, we didn't know that bad news yet. My MO had me do a breast MRI prior to my scheduled lumpectomy and since that MRI revealed a large diffused area of DCIS (couldn't see on mammo) the whole breast had to go. My other side looked clear on the MRI.
I think, as does my Oncologist and my medical malpractice attorney best friend (who told me to insist on one before surgery--fortunately my MO brought it up first) that a breast MRI must be done before surgery.
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I had IORT at the time of surgery. The entire IORT was 512 seconds, a little over 8 minutes. I was told it would take 8-10 minutes depending on certain factors. This procedure has come a long ways and doesn't require radiation for as long as it did when it was first introduced. My doctor here in Florida, Olga Ivanov, brought this procedure to the USA. She only does it for women in very early stages of cancer. I am in a clinical study for the next ten years to see how we handle things emotionally and physically. I am only one week out from surgery and haven't met with the oncologist yet, but expect to take some form of Tamoxifen or Armidex. My recovery has been uneventful except for some soreness at the incision site, mostly under the arm. I didn't have the sunburn appearance on the breast as some report and there has been minimal bruising. My lymph nodes were clean and so were my margins. This procedure has been around for some time and the incident or recurrence is extremely low. I took the chance and hope and pray that this is the end of this scare. If anyone is interested in one time IORT look up the doctor's name on Youtube.
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