New to this.. Just dx dcis/idc Scared

cc4npg · 09-04-2010, 02:18 PM

I've never fit into a group.. until now. I don't know yet if I will be classified as triple negative or Her2. Went in for mammo early Aug, called back for magnified views which led to biopsy. Four microcalcifications, left breast, very inferior, lower about 6 or 7 o'clock, closer to chest wall.. no mass seen, there was a question of a density. I had no lump, no pain, no soreness, felt fine actually. There've been no swollen nodes under my arms to best of my knowledge, although I do remember months ago having a sore place under my right arm, but this is my left breast. I had a mammo in 09, which showed microcals in the right breast, and those are still there, unchanged, so this was a new area.

Anyway, biopsy preliminary report was DCIS (so I'm to assume I have that too?). However they were waiting on additional tests for a couple of "focal areas of suspicious invasion". Those tests came back the following day and all I've heard is "invasive ductal carcinoma".. "there was invasion" (is this what they call microinvasion?). I asked about any numbers or letters and they said, ER-, PR-, Her2 equivocal, FISH pending.

That's all I know. I was petrified of this, and now I think I'm a bit more at peace (God has given me a few signs). I was thinking to begin with, "I'm done... this is it.. I'm going to die". Now, just 48 hours later, I'm thinking, "No, the majority do not die, but it is a battle". At first I was worried about how I might look if I had to lose a breast, not to mention hair! Now? I could care less about a breast or hair (it'll grow back)... I just want to live.

Have tons of questions. How did yours present? Are there any similarities between mine and yours? Was yours small? From what mine appears, does it sound small and early? (4 microcals, no mention of mass, microcals .2 mm each, and about 1 mm away from each other) I'm worried about the placement... lower, inferior, close to chest wall. I have had no symptoms, no lump, no chest pain, nothing. I was sick earlier in the year, with what I thought was upper resp infection, but doc thought it was histoplasmosis because a ct scan found some scaring and nodules in lungs... BUT, and I hope and pray this is good, the contrast ct didn't show any enhancement to any nodules that weren't calcified. Yes, my mind is going in all kinds of directions... but logically it would seem if I had cancer that bad, I would certainly have some symptoms (lump, shortness of breath, cough, something).

Please help me get a grip on this and tell me some of your diagnosis/treatments. Thanks so much...

Angelisa

Jackie07 · 09-04-2010, 02:52 PM

Angelisa,

I can imagine what you are going through right now... Yes, we've all been there - the frightening thoughts, the numbing feelings...

Sounded like you have caught it at the very early stage - you have some DCIS (stuff that has not gotten out of its 'birth place') and possibly some invasive cancer (cancer cells have started to 'invade' surrounding tissues)

The Homepage of this website has a lot of information about Her2 positive breast cancer. The American Cancer Society Website www.cancer.org also provides detailed information about breast cancer and treatment.

Her2 used to be considered a bad diagnosis because of its aggressive nature - fast growing, resistance to chemotherapy, high recurrence... But because of Herceptin, everything has changed. Many of the Her2 patients acquired the status of 'NED' (No Evidence of disease) after standard treatment of Herceptin (TCH and then H). Some of our members have reached 'NED' after participating in clinical trials. Look at the threads of Newly diagnosed (click on the Heading and you will see past postings) and read their treatment history (you can put in yours by going to 'User CP', then 'Signature') You'll see theirs are markedly different from 'old timies'. Knowlege is power, you want to get the newest, best treatment information for yourself.

Rest well and eat well. Take a deep breath whenever you feel overwhelmed. Get on the Board and talk to other 'survivors' - yes, this is a survivors' club and we are risk-takers. We look at cancer straight in the eyes and march forward...

Sorry you have to join us. But you've found the right place...

tricia keegan · 09-04-2010, 03:14 PM

Hi Angelina,

Jackie gave you good advice which I'd echo and it does sound like you found this very early on which is good news.

There are many long term survivors here that will give you confidence in going forward, some stage iv and doing well thanks to herceptin and others like myself, who had herceptin five years ago when it was approved for early stage.

It'll become easier when you know exactly what you're dealing with and start a treatment plan. Please keep us posted and I'm so glad you found us

CLTann · 09-04-2010, 03:18 PM

Dear Angelisa,

Five years ago, almost to the day, I was in your shoes. My first friend in the support group advised me to get a copy of the book written by Dr. Susan Love of UCLA, titled Breast Book. There are hundreds of questions you want to ask. To get a copy of this book is a very good start.

You are very lucky to get the news so early. Get an oncologist, preferably a breast specialist, and discuss with him/her the course of treatment. Then find another specialist and get the second opinion. People here are very supportive but we don't have the hard data; besides, we are not doctors but we are much more understanding and caring. There is no need to panic. Read what our sisters ask and answer. You will find there are so many living a long life here. When you have time, give us more detailed data from the pathologists' report. I am sure many here probably went through the journey with almost same history. You will soon find very useful info on how they dealt with the disease. Knowing you have breast cancer does not mean the end of the world. There are many ways to combat the enemy. You need to select the right and best path. We are always here to give you support.

Best luck to you.

Ann

Lien · 09-04-2010, 03:34 PM

Hi Angelisa,

Reading your post, I thought: that's exactly how I felt, 6,5 years ago. I was scared, thought I was going to die and then decided I was going to find out all I could and make the right decisions - for me!

It seems to me you have moved through those stages really fast. It also seems that your cancer is still small and manageable.

You've received some good advice in previous posts. Keep us up to date on any new developments, so we can help you. If you turn out to be Her2 negative, and feel you need additional info, you may find a lot of support on www.bclist.org.

Hugs

Jacqueline

cc4npg · 09-04-2010, 03:47 PM

I don't know anything else yet. I'm just trying to remain calm and think logically because honestly if it were in my lungs THAT bad, I would have a cough or shortness of breath or something... at least weight loss/fatigue. The only fatigue I have is self inflicted from worry and stress, which is a horrible way to start this fight, but I assume you guys went thru the same feeling of absolute and complete sheer terror to begin with. I think that's starting to fade with me. No one has woken me up from the nightmare, and I've kept telling myself "I have cancer" to get it to sink in... it's there.. I can't do anything about it right now... but I have to face it's there. I thought I was being punished at first. I'm a Christian, but I've not been the Christian I should have been. A fellow Christian told me today that God doesn't work this way, that whatever I'd done had long been forgiven and I was punishing myself. That was where most of my fear was coming from... fear God was angry. But He's not... He heard my cries. I wanted a sign... specifically, I wanted and longed to see my mother who was hit by a petroleum truck in 2006. She was what held me together with her strong faith and trust in God. I haven't seen her, but I've had many strange things happen since my diagnosis and desperate prayer. Yesterday, my aunt (who I haven't talked to since 2006) called. There was a family falling out after my mother died, so her call to tell me she loved me and was praying was definitely unexpected. I also ran into an old co-worker yesterday quite by accident who I really thought a lot of and said she would pray. My son, just 2 years old, saw me crying and told me a couple of times "Mommy, it'll be ok"... he then found a tissue, brought it to me, WIPED my eyes, and put it to my nose and said "Mommy, blow your nose". When I told him I couldn't, he responded, "Mommy it'll be alright". Today, I had more strange calls, and a text from someone who owed me money (this person was actually avoiding me, was last in another state, so this was weird). This person actually has offered to help if needed with outside work or whatever around the house, as well as to say he was going to still pay me back! And lastly, my significant other, who had moved out the beginning of the year, had been trying to find someone to take over his apartment lease. Today, oddly, a friends mother came over and liked the apartment and is hoping to move in Wednesday! Now tell me, and I know there have to be many believers out there... these are truly signs, right? I mean, in the whole scheme of miracles and signs, these things can't just have all happened from sheer coincidence. A two year old doesn't say or do those things normally. Oh, and this morning, he said, "Mommy, you won't die, it'll be alright".

Laurel · 09-06-2010, 08:20 PM

Angelisa,

I remember feeling the incapacitating fear you are being plagued with at the moment. Just rest in this: He sees. He knows your fears. He loves you. AND this horrible situation is not of God. Now stand on His promises. Look over the tossing sea. Who do you see calmly walking on the waves toward you? This terrible storm shall pass.

candlegranny · 09-06-2010, 09:50 PM

Angelisa,
reading your posts reminded me of how i felt 9 months ago. the breast book by susan love is a great book. it is worth getting it is like a bible to survivors. i have a 6 yr old grandaughter who lives with me and she is very positive like your son. i have been thru chemo and now in radiaton.I had a mascectomy in january 2010, jsut now getting into radiation. chemo was not as bad as I expected. i think our attitude helps so much... and you are in ohio!! i am from ohio but live in ky . where in ohio are you I have alot of family there. we may be able to meet someday. you are in my prayers. there is power in prayer. You will be fine and I thank God fro this board. i dont always post but i read alot of the new posts and I learn alot from all the experienced folks on here. this is an awesome site and so very helpful and uplifting. you will be so glad you found it. let me know where you are in ohio. my email is candlegranny2001@yahoo.com take care! Bonita

Sherryg683 · 09-06-2010, 10:09 PM

Once you get over the pure fear of dying you get into a mode of fighting it and beating it. Then at some point in your battle, it was around year 2 for me, I decided that I was no longer going to let the cancer own me and my emotions, it was ruining what life I had left and I would not allow that anymore. My prognosis was not good I was told less than 19 percent 5 year survival rate. I just knewI was a dead person waiting to happen. It will be 5 years cancer free for me in December and Im glad I didn't waste all those years obcessed with cancer. I put it in the back of my mind. Bring them out and deal with it, cry, get depressed, then lock it back up where it belongs. I won't let it take the life I have left. I didn't have any symptoms of my lung mets, was in very good physical shape, it's through six month scans that they keep track of me. God is not angry with you, he doesn't work that way. God listens to everyone, sometime he doesn't give us the answer we want, why, I don't understand that , someday we will. But he does gives signs that he's around and listening, you may have to look for the signs but they're there...Don't lose faith and don't jump to any unfounded conclusions until you get the facts. As I would tell myself "there's no use burrying yourself when the body still looks good and is running fine".
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cc4npg · 09-07-2010, 05:00 AM

I've been reading other posts on a variety of things. I have a question. If I had a ct scan with and without contrast the first of May, and the nodules that showed up didn't enhance (thus meaning very low likelihood for cancer), do you think that test would be accurate? Or do I need to tell my breast surgeon that I would like a PET? I have no symptoms of anything other than sheer stress and fear of my newly found breast cancer.

cc4npg · 09-07-2010, 05:03 AM

Forgot to mention... that ct scan was on my lungs, and showed liver and a little more. Only nodules found were in lungs... several 1-2 mm calcified, a few 1-2 non calcified assume benign, and three 6-8 mm on left, one in pleural area, that did NOT enhance. They labeled me as having probably histoplasmosis, but that hasn't been verified. I'm in Ohio though, and am told lots of people have nodules in the lungs they'd never otherwise know about.

adelay · 09-07-2010, 05:27 AM

Just wanted you to know that you are in great hands here with all of us being exactly where you are and you will get through this too. Keep the Faith and stay positive...your attitude will make the world of difference.
I'm in Ohio too...where are you? Email any time if you have questions. Good Luck, you can and will do this!

cc4npg · 09-07-2010, 05:38 AM

I'm in the Dayton area, and a friend of mine told me the docs here aren't that good, and to get out of the Dayton area for treatment. I'm trying to get into Cleveland Clinic. It's been such a rough year... all I have for insurance is Caresource (Medicaid). I'm thinking I may not get the best care... and I don't know what to do. Cleveland Clinic takes Caresource, so I'm praying I get a hold of an appointment, but it's about a 4 hour drive.

adelay · 09-07-2010, 05:56 AM

You are really close to me. I live in Mechanicsburg, I had treatment in Springfield, wonderful Dr.'s and nurses and at the James in Columbus. I am sure there are good Dr.'s in the Dayton area too. Look around, ask people and I know you will find one that cares and is great. Chin up...

cc4npg · 09-07-2010, 06:24 AM

I'm in Clark county... so yeah we are. I was trying to move to Springfield this year. I'm currently seeing a doc at Good Sam North in Englewood close to Dayton. I don't know if they're good, but it is a breast clinic. Who did you see? My doc is part of the Good Sam North team and seems really good. I'm told he was a general surgeon but a few years ago he decided to be a breast surgeon only, so he kind of heads up the Good Sam North team. But this is "Dayton", you know? I'm going to still try to get a second opinion from Cleveland Clinic if possible, or maybe someone in Columbus, but I don't know who is more up to date with the latest and greatest technology.

adelay · 09-07-2010, 07:22 AM

My surgeon is Dr. Nedleman, love him! My oncologist is Dr. Singh and my radiation oncologist is Dr. Victor, both wonderful too, very easy to talk to, very compassionate and knowledgeable. They all work together at the Springfiled FRegional Cancer Clinic is SPringfield. I went to see Dr. Provoski at OSU, Breast cancer surgeon oncologist, he was really nice too but it was personally just too big of a place for me. He was in complete agreement with the Springfield doctors and I felt more comfortable there so that is where I have been. Make sure you ask around and get other peoples thoughts about certain Doctors and make sure you feel comfortable with them, this is a life long team and you all need to work together to get through it. I would think if they are a breast clinic they would be pretty knowledgeable, I have a friend who is an oncologist in Cincinnati but he used to work at Miami Valley, if there is a certain Dr. you would like me to ask him about let me know and I will see what his thoughts are about them.

cc4npg · 09-07-2010, 08:47 AM

His name is dr. heck with Gem City Surgeons.. at Good Samaritan. I was actually able to get an appt. with Cleveland Clinic tomorrow morning! So a bit of good news. If they agree with my dr., then I will probably do treatment here. Dr. Heck seems like a wonderful dr., but I've never dealt with breast cancer so I just need to know I'm doing all I can. There are a lot of people who live full lives with this, right?

adelay · 09-07-2010, 09:39 AM

I will see if I can find anything out about Dr. Heck and yes we live full lives...you will be fine! Good Luck tomorrow and keep us posted.

cc4npg · 09-12-2010, 12:55 PM

So I have yet another question, if anyone has had immediate reconstruction. I'm seriously a very small person, 5'2", 103 lbs currently, size 0-1. I'm probably in all honesty a 34A, or 32B, but I've always had trouble finding bras to fit because I just don't fill them out... even a 34A, so maybe I'm smaller than I think. Anyway, I was looking to see what I might expect after expanders. And I'm confused a bit. If I have Her2 or triple negative, will I be able to have the recon immediately? And since I'm so little, do you think they'll opt to place something in the right side at surgery or what? Her2/triple negative automatically get chemo no matter what size cancer it is right? But do they automatically get rads too, even with mastectomy?

Cleveland Clinic said judging by my films, the result if IDC was a shocker to my doc. The radiologist was really on their toes with my films. I'm sticking to my local doc, because I did feel comfortable with them and they're closer to get to in the winter. I heard about Dr. Singh from someone else. If I'm not mistaken, they said this doc was the sweetest person they'd met.

I've had an MRI last week. It showed increased density in the left breast where the biopsy was done, as well as a density in the upper inner quadrant and made some reference to "small non-specific lymph nodes in axilla". This is what the nurse read. I figure the increased density is hopefully from the biopsy itself. The other density may or may not be anything to worry about. Have no idea about the mention of lymph nodes. I figure if they were really bad, it would have said suspicious of invasion, or swollen, or both. I do know that on my biopsy, it said lymphatic and vascular invasion were absent, so I'd be more inclined to believe the cancer is just in the one area. What do you think?

Adelay, We should meet sometime! I'm seriously not far from mechanicsburg and had a client up there.

adelay · 09-12-2010, 01:22 PM

Glad to hear from you. I did speak to my friend about Dr. Heck and he had all positive things to say about him and says he has referred patients to him before. Dr. Singh is one of the most compassionate people I have ever had the chance to meet. He has been wonderful throughout this whole process. I would love to hook up with you sometime, that would be wonderful. I can't offer any insight about reconstruction, as I have not had any yet...not sure I am going to or if I even can because of my radiation. I did have to have radiation even though I had a mastectomy because it was in so many of my nodes, but if yours isn't you probably will not have to do the radiation if you do the masectomy. Someone here will be able to answer that for you. Take care of yourself and stay positive. Good Luck!~