newly diagnosed

Sharon · Guest

I just got the results of my core biopsy yesterday. I have a 8mm, invasive ductal carcinoma with a low miotic level. I can't see the surgeon until Monday afternoon, Oct 18. Any words of wisdom, advice, and coping hints would be greatly appreciated. My anxiety level is beyond me at time with tears near the surface. It is very difficult to tell others. I hate giving bad news especially my own.

Pastor Rich · Posted: Thu Oct 14, 2004 2:30 pm Post subject: Re: newly diagnosed

Hi Sharon;

The most general rule is that "small is good." If it is 8mm that is good news.

My wife and I are just about to see the oncologist next week for the 1st time. She has invasive lobular which is less common than ductal. We have cried a lot over the past few weeks. If you keep it bottled up you will explode.

My best advice (as a Pastor) is to have a long talk with God, and if you feel like yelling at God, go right ahead. Even if you don't believe He exists. As well, call a friend you can trust and lean on them. This is a time when you will need support. Even if it is difficult to reach out, it is far far more difficult to go it alone.

Blessings,
Pastor Rich

Lee · Guest

Sharon,
I'm very sorry to hear about your biopsy. Everyhting you are feeling is normal. When I got my report 4 months ago I didn't think I would ever stop crying, but I did. I'm glad you are getting in quickly to see the surgeon just so you don't have to wonder about that part of it. Make sure you get a copy of your biopsy report. Do you have family or friends close by that you can lean on for support. Don't be afraid to let them help you now. If you need to talk or just need a shoulder to cry on let me know. Please let me know how you make out with the surgeon.
I will say a prayer for you.
Lee

MuttsMom · Guest

Hi Sharon.
They caught your cancer VERY early. I know it's scary to hear the word cancer, but your prognosis is excellent.
Look at me. I was Stage III, 5.5 cm tumor w/9 positive nodes out of 16 cancerous and that was 2/14/02 and I'm here and plan on being for a longggggggg time Smile

We're here if you need to talk, vent, cry, yell, ask questions or anything else
Hugs
Nancy

leo · Contributor Joined: 23 Sep 2004 Posts: 1575

Hi

Thanks for sharing your story with us. I hope we can help in some way. One of the advices I would give is to not suffer by anticipation. I admit that not knowing what to expect is the worst, but you have a plan, you will see the doctors and they will evaluate and treat you appropriately. So try to do some things you enjoy, go shopping, to the movies, something. I would encourage you to ask things here, not only I am here but there a several extremely supportive men and women here.

Just a detail, a core biopsy is not able to define size of the tumor to stage it. The 8 mm you have seen is the size of the biopsy itself. Size of the tumor is defined when there is a surgical specimen, i.e. from a mastectomy or from a lumpectomy.

yours sincerely
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

Sharon · Guest

Thank you Leo for creating this web site. What a blessing. I have never participated in this type of format before and it is fascinating and reassuring what cyperspace can do. I do believe in God Pastor Rich and feel that a higher connection is taking place here. I am beginning to accept the words and meanings behind, "I have breast cancer". I truly believe that with support one can make it through difficult times. I was just so totally beside myself. I trust my surgeon and realize that things are not always what they from the biopsy until you "get in there." I sent out my feelings and I appreciate your responses. I am not alone. In gratitude, Sharon

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Dear Sharon,

Welcome to the boards, although I'm sorry you have BC.

It's a total shocker. I finished treatments for invasive ductal eight months ago and I'm doing GREAT now! I have every reason to believe that I will live to be a little old lady of 85 and die from something other than BC!

Sharon, after your surgery you will get a copy of your patholgy report. Your treatments will be based on what is in that report regarding your malignancy. Once a "plan of action" is drawn up, I, and others on the board who have been there/done that can help you get through those treatments, whatever they may be. I did chemo and rads. They were MUCH easier than I imagined.

Please keep us posted when you get more information. Take care of yourself, too.

Hugs,

Margie

MNlady13 · Guest

Hi Sharon, this is really the pits, isn't it? Well, hang in there. Life is going to get better eventually. You've gotten good advice from the others. I was diagnosed in 1996 with a 6 mm tumor following excisional biospy. I did radiation (no chemo -- lymph nodes were neg.) and five years of tamoxifen. It all started 8 1/2 years ago, my dear. And, I am doing just fine. If you can take DH or another person with you to the onc.'s or surg. when you discuss treatment it helps. Or, tape record the conversation. Be on the safe side and do both -- have someone go with you and tape. That way there are two sets of ears listening, and you will have a recorded record to refer back to. You will be surprised at what you do not remember. Good luck. We are here for you. Lauri

sharon · Guest

You have all had such positive reflections and suggestions. I will tape and write what I hear. I don't seem to remember things at the moment. I feel as though I am on a roller coaster or riding a wave. I am fine and then I am not fine as the fear and axniety return. I feel as though I am entering a long dark tunnel and need to keep the faith that there is light eventually. It is amazing how comforting it is to read your sparks of light and hope. Sharon

DJ56 · Guest

Hi Sharon and everyone else,

Boy, can I relate to you Sharon! I (thanks to this Forum) am beginning to retain some of this overwhelming information. All I knew until yesterday was that I had cancer in my breast ducts, and that according to my tests that were done prior to my surgery, my tumor was 6 x 8 mm with a smaller tumor immediately adjascent to that one according to the tests that were done prior to my surgery. The plan was to do a lumpectomy and sentinel node surgery, however, because the sentinel node was positive, my surgeon (this was discussed beforehand) removed the tumor, the breast tissue around the tumor (to get clear margins) and 18 other lymph nodes were removed as well.

The one thing that I have learned in a relatively short period of time because of all the sharing here, is that each cancer is unique, each person is unique, therefore, each treatment is unique. Fortunately, I have my faith to carry me through this, because the process of this news can be crippling emotionally, and I [b]know[/b] that He will see me through this.

Since my surgeon was on vacation when my head finally began to clear enough for me to begin taking some of this information in, I felt totally lost as I read what people wrote here. I didn't even know my medical diagnosis! There was all these foreign medical abbreviations and different kinds of treatments and negative and positive phrases and UGH.. I couldn't even call the office to ask questions, because I didn't even know what to ask! After I posted here, a very reassuring lady from this forum (THANK YOU BARBARA!) called me and gave me permission to incessantly ramble and ask all my "dumb questions". After talking with her, I felt like I had enough information to know what to ask my surgeon's nurse. I finally mustered up the courage to call and ask her to read my pathology report to me and explain what she could. I read off some notes, abbreviations, etc to her that I didn't know what they meant (abbreviations, etc that I've seen here) and although many can only be answered my my radiation oncologist or my medical oncologist, here's what I learned:
I have "intraductal and invasive adenocarcinoma. The tumor was 2 cm. The cancer had spread to my lymph nodes and was found in the breast tissue around my tumor. I am HER2 negative. I am ER/PR negative. As for the lymph nodes, the sentinel node was removed and out of 18 other nodes removed, only 1 had "one tiny millimeter" of cancer.

So.. now I am in desperate need of some feedback from you ladies and Dr. Leo about all this!

Thank you and God bless each and everyone one of you!!

xoxoxo from Dianne (who is VERY appreciative to Dr. Leo for creating this safe place to learn about this very scary disease)

Munchkin · New User Joined: 11 Oct 2004 Posts: 4

Dearest Sharon,

When I was diagnosed in July, I felt like the world came crashing down - the dreaded "C" word! My hubby accompanied me to the breast surgeon appointments and the oncologist and he was my eyes and ears for me. It helped immensely to have him there because I was unable to comprehend anything at that point. It would behoove you to get someone to go with you or take a tape recorder with you to capture everything.

Reach out to those who can offer you support and encouragement. My parents and older sister would call me alot to offer encouragement or just to say they were thinking of me. My 22 yr old son would often call just to say that he was thinking of me and that he loved me. I was surprised by the love and support I received from those I barely knew, such as the hairdressers and the customers of the salon where I have been a patron of over 7 years and my husband's assistants and his boss. I shed alot of tears with my puppy and my family, prayed to God alot and tried to keep to my normal routine as much as possible. You will get through this and please know you are not alone. We will be here to support you.

With much love and hugs to you,
Cathy

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Hi Dianne,

Hope you're doing better now. You have LOTS of people who will help you on this journey.

I had invasive ductal carcinoma. I'm not sure if that's the same as what you have? Dr. Leo could better answer that.

A 2 cm. tumor means they will probably recommend some type of chemotherapy (depending on your general health). Also, the fact that there is some lymph node involvement will probably point toward chemo, too. Remember, though, that the lymph node involvement appears very small and even if they find cancer cells in the lymph nodes it does NOT mean that they have travelled to other areas of your body or that they can even survive outside the lymph system. But chemo would be a precaution, just in case, sort of like an insurance policy to destroy any cancer cells that MAY have gotten loose. But chemo is not that bad. It's no walk in the park, but is very doable. Your doctor will discuss that with you when you meet with him next week.

If you had a lumpectomy and there are still cancer cells around the tumor site, they would need to do a re-excision which is just a general clean-up in the area to get stray cells. I had this done and it wasn't bad at all. They want to make sure you have "clean margins." Also, radiation is usually given when one has a lumpectomy. It greatly decreases the recurrence rate of the cancer returning in the breast. I found radiation to be the easiest part of they entire treatment.

Being her2 negative is a GOOD thing. Being ER PR negative means that the cancer would not have a response to hormonal therapy such as Tamoxifen. ER PR negative cancers are usually advised to do chemo because they repond very well to it.

Your doctor will explain it all in detail to you next week. Just remember, you will get through this and in the end, when it is all over, you will be a stronger person.

Hugs,

Margie

Sharon · Guest

Dear Diane and All: I love reading your responses and it gives me such hope in this dark tunnel. I will see the surgeon tomorrow. Have gotten the courage to read Dr. Susan Love's book especially regarding lumpectomy versus mastectomy/radiation/chemo/sentinel node biopsy. One friend has recommended that I get a sentinel node biopsy with taking a couple of buddy nodes for safety. There is so much to think about and it is overwhelming. Will I make the right decision? I will take my husband with me and a tape recorder. I was taking HRT prior to my mammogram and am now experiencing hot flashes with sleep disturbances. However, I can live with this as it is normal and doesn't last long. I feel quilty for ever even taking them in the first place..

Did I cause breast cancer by taking them? What did I do wrong...diet, lack of exercise, too much stress?

But, regardless of the contibuting factors I have it and must go forward. I am blessed with a supportive family and friends/ three of who are survivors and thrivers.

Hugs and thanks to all of you for sharing this journey. Sharon

Muttsmom · Posted: Sun Oct 17, 2004 1:27 pm Post subject: Re: newly diagnosed

Hi Sharon,
I think we all ask what did I do to be dx with BC. We didn't do anything. We are women with hormones. I never had kids and that's one thing they list as a risk. Does that mean it's my fault for not having kids, no. I have no family history of any kind of cancer, I'm the 1st and I found the lump at 42 and had a mammogram, which showed normal and ultra sound and by the time I finally got a biopsy, I had turned 43 (only a few months), I was Stage III. If one of of 7 will be dx with this disease in their lifetime, all of us can't be doing something wrong. It's a crap shot and we were dealt the hands we were. It's NOT your fault.
I personally chose a mastectomy and then a year later had the other breast removed. Mine was lobular and more prone to mirror itself in the other breast. I was given a choice of lumpectomy and mastectomy and there wasn't much thinking I had to do, it was take it off. I did ask my surgeon if it was his wife, sister etc. what would he recommend them to do, and he said mastectomy. I've heard from friends that their surgeons didn't like doing mastectomies because they didn't believe in removing part of what makes them a "woman"........Those surgeons have a hang up. We do what we feel will give us the best chance to be rid of this cancer and every chance to avoid a reoccurence. There are times no matter what we do, it will come back, whether it's stage I or stage III. You are the only one that can make that decision and I know you'll make the right one. They didn't do SNB when I was dx in 2/02, they did the node disection. In my case it wouldn't have mattered since I had 9+ out of 16. From what I understand, even if the sentinal nodes are neg. they will still remove a couple of extra ones to be sure, so I doubt that will be left up to you to make that decision. If it is, I personally would find another surgeon. I chose to be aggressive in what I had a choice of and my onco was aggressive with the chemo, radiation etc. I'm definately not out of the woods and never will be, but I'm happy to say, that this stage III lady is 2 years, 8 months and 1 day NED (no evidence of disease) and I've never once regretted having both breast removed. I'm definately NOT saying you won't make it if you have a lumpectomy, many do, but when I thought about it briefly, my way of thinking was, I"d rather be boobless and alive, because what good will they do me if I'm dead. There is also always reconstruction if you go that route.
Again, only you can make the decision that's right for you and you'll know what that is, just like I know I made the best one for me.
We're here if you need us.
Hugs and prayers and you WILL get through all this. It's an emotional roller coaster and you'll feel ways you never thought possible, but it's all "normal" and you'll be amazed one day soon that you'll look back and think, geesh, it's been a year already since I was dx. Smile

Nancy

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Sharon ~ Do NOT feel guilty. You made decisions based on the information given to you at that time.

The only risk factor I had was being a female and my mom had postmenopausal breast cancer.

As one surgeon said, "You just had some bad luck."

Take care.

Hugs,

Margie

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