IDC (Infiltrating/Invasive Ductal Carcinoma) 2011 Sisters

odie16

Jody,

I am so sorry you have to join us but will be happy to try to help you thru the process. The surgeon will go over your options (lumpectomy or masectomy) dependent on your pathology. You may also see a plastic surgeon if you decide to have a masectomy so as to go over reconstruction options. Currently you are in that period where they bombard you with info and  you have to make very serious decisions. Just know that the ladies on these boards are wonderful to help you understand the lingo and comfort you as we have all been there. I have found these boards a godsend while going thru treatment. Congrats on the 45th anniversary and many more... Hang in there....hugs

WaveWhisperer

Just wanted to welcome you to the club. I'm a new member also -- was diagnosed with IDC 4 weeks ago today, had a lumpectomy 2 weeks ago today. I'm 63, tumor was 1.1 cm, also grade 3. Like you, I'm in waiting mode -- waiting for more test results to come back before they decide what my next treatments are.

All this waiting is terrible, but the very worst was the period you're in right now -- knowing you have cancer but not being able to do one thing about it. I was diagnosed on a Friday, and that was the longest, loneliest weekend ever for me, before I saw my surgeon on that Monday. I hated the doctors for not working on Saturday and Sunday, not working hard and fast to get that cancer out of me.

What I would advise is NOT to try to search too hard on the Internet for information, until you know more about your own diagnosis. You can find all sorts of misinformation, stuff that will scare you unnecessarily. It's fine to ask questions on this, a reputable forum. Your doctor will probably want to know more from the biopsy report -- such as whether the tumor appears to be estrogen or progesterone sensitive, whether it's HER2 amplified or unamplified, etc., before recommending treatment. Almost everyone's cancer is different in minute ways. Just know that there are a BUNCH of us here, going through the same thing, and that there are even more here, who have been down the path we're now walking, and they're a super support group. 

Oh, one piece of advice: Be sure to ask for copies of every report your surgeon and your oncologist get. They may go over the highlights with you over the phone or in person, not going over every line and every term, and you're likely to forget some of what they say anyway. Later, though, you'll want to read the reports for yourself and ask your doctors, and women here, what some of the terms, and some of the numbers, mean.

Good luck, and keep us posted! 

auntienance

Jody - wavewhisperer has given you good advice.  Early on, it's not a bad idea to take someone with you when you meet with your docs.  Someone on one of these boards described it as if you are underwater hearing your docs talking to you about your diagnosis and I found that to be a pretty accurate description.  I also took a small notebook with me to appointments.The endless waiting is the hardest.  Once you have a plan, things will get better.    In the meantime, welcome -- you are in pretty good company here.

Joan811

Jody,
I am so sorry to hear that you have been diagnosed.  It is not where any of us wanted to be this year...  Breast cancer is no respecter of our lives or schedules.  Many of us have had delays in getting appointments, or in choosing second opinions, and waiting for treatment dates.   You are on track with your appointments -- you have had a mammo, biopsy, and now have an appointment with a surgeon -- all in a week.   Just remember to take someone with you if you can, and write down your questions, answers, and options.  You will learn a lot on the discussion board.  It is overwhelming, but being informed will help you find your best path to recovery. 
Best wishes and hugs,
Joan

jampus

Brendaclee3 ....how I love you...you have just given me the first moment of pure joy since being dx'd 2 days ago !! Tell me it is true, they took the fat from your belly to make new breasts??? YES, you mean I can get my breast size back and a new flat tummy in the process? Maybe there is an upside to all this

barsco1963

Hi everyone. I too was diagnosed with IDC in June of this yr. Stage 4. Opted for a radical modified mx - just wanted to get rid of the cancer. I thought that would be the end of it. How naive.

 Everything is a whirlwind for a long while. Was scheduled to start chemo - then liver mets detected so now taking Tamoxifen & Zoladex which I am happy to say is working well for me. Seemed strange that no chemo/rads - I thought everyone had to have chemo. I am definately learning a lot through this site, other reputable sites and my medical team.

This is a terrific spot for finding/sharing information, finding/giving support and venting if that's what is needed. Everyone is very understanding as to what each other might be going through.

jody0918

Thank you for the reply Ginger. Your numbers look so good to me....hope you have the most passive type there is. Nothing like other people to make you feel like you are not alone. I felt so much better after reading some of the replys here yesterday. Look forward to great info and maybe I can be here for somebody else as well!!

jody0918

Odie, thank you for your good advice and encouragement. I have done alot of what you talked about....the internet has helped as well as induced panic. The first day I knew the answer; because of the way the radiologist was willing to ASAP a core biopsy when his shift just ended. And the ultrasound lady was soo very kind to me and added the best surgeons name in our tiny town as I was dressing. It said BINGO!!  to me about the results. But I am now looking up thanks to you ladies talking about MAKING IT and all that is available.

odie16

Jody0918,

Glad I could help or at least encourage. Funny but I too knew I had cancer when the radiologist performing my ultrasound pointed out the area of concern and how it was different from a pre-existing cyst on the same side. Unfortunately the biopsy confirmed our suspicions and here I am. If I can help in any way, please do not hesitate to reach out to me. It seems so scary at first diagnosis but having these boards to laugh, cry, vent and learn makes all the difference in the world. 

Ginger48

Jody- I am very lucky that my cancer was small and we caught it early. I had a lumpectomy and had planned to do radiation and be done until my BRCA test showed I have a genetic mutation that puts me at huge risk for additional breast cancer and ovarian cancer. So I had bilateral mastectomy and am finishing up reconstruction now. Then I will have ovarian surgery and hope to live a long and healthy life! These boards have been a life saver to me as I navigated through this period of my life. So many people to advise and support us here.

Joan811

Welcome, Barsco 1963,
While I am not familiar with your treatment plan,  there seem to be multiple approaches as the research and clinical studies update.   I am glad you are responding OK to the Tamoxifen and Zoladex.    I am so sorry to hear that your diagnosis is more complex than you anticipated. I hope you are feeling well.
Sending hugs and prayers your way.

barsco1963

Thanks Joan - I do feel great most days. Sometimes I wonder if they got the dx right - I don't feel sick. Then I see the reports and there it is staring me in the face.

But I am doing well - taking each day as it comes and enjoying life.

I am Canadian and I think the treatments differ somewhat between U.S & Can. from what I have read throughout this site. Zoladex is an injection that reduces estrogen production and seems to work well with Tamoxifen. (in my case). I did come across one other woman from Australia (I think) that was also getting Zoladex injections. But she has been the only other one I have heard of so far.

(((Hugs))) to all that have found their way here. Hoping someday that this site will be non-existant due to a cure being found.

Kaara

This is my first time on this thread.  I joined BCO back in Sept when I had a mammogram and inconclusive US.  After many tests and retests,  I was finally dx with IDC low grade 1, stage 1.  It's a small 5 mm spot and the doctor says he will do lumpectomy and we'll talk about radiation.  I will get the complete results when we meet next week.

My concern with radiation would be how necessary it is, particularly if there is no lymp node involvement.  I would want to know the percent of possible recurrance if I did not do rads vs. if I did.  Does anyone know?

rachelvk

I haven't been able to keep up too much, but a warm, if reluctant, welcome to some of the newly diagnosed. It's a tough road, but you'll find good information on this site. 

Jody and odie - I had the opposite situation. While he was doing the biopsy, the radiologist squinted into the screen and said, "Yeah, it's probably just a bunch of cysts that have bunched together." Made the phone call the following week an even greater shock.

Barsco - I completely understand about feeling healthy in spite of it all. Makes it surreal sometimes.

WaveWhisperer

I was pretty sure the news was bad when everyone at the imaging center was so nice to me!! The first sign was when they rushed me right in when I showed up, without an appointment, after they had called my house and asked me to come back in for additional screens. Then everyone was soooo gentle with me. I knew something was up. They just look at you differently, don't you think? They know something you don't know, and they don't want you to know that they already know, but you know because they're acting like they know something you don't know.

 BTW, I second the advice by AuntieNance and others to take someone with you to your appointments. I can't tell you how many times I've had to ask my husband to remind me of what one of the doctors had said about a particular test or result. Once you get your diagnosis, your mind is filled with so many thoughts, questions and fears that it's hard to focus on anything.

Several days after my diagnosis, I was driving my husband to the airport, a trip we both make every few months. Before either one of us realized it, I had driven at least 5 miles past the exit to the airport. We both were incredulous that neither one of us had seen ANY of the large green signs with the airport icon!

 So can we have "chemo brain" even before we have chemo? 

odie16

Funny, they did seem really nice but naive me thought that was the norm initially. Totally agree that you should take someone with you to the doctor visits as initially they throw so much information at you that it does take two to catch it all. I wrote down key questions to be sure I would remember to ask them. And I didn't have "chemo brain" so I am blaming it on system overload!

Rachelvk - Sorry it was a shock for you; either way I think it sucks.. And it really bothers me how many women have to deal with BC.... 

jody0918

Well, I did go to the sergeon today and he had the opinion that after 30+ yrs. of doing BC surgery ; he feels a lumpectomy + radiation is as efective as masectomy. I dont know if that was because of the size of my mass or past (much) experience. BUT I know the worst is coming when they do it and I have to hear the results of the staging and how agressive they feel it is. But for tonight....I am just waiting for it to be done on Nov. 29th.  And yes I said Nov. 29th; because it is the 1st day he has open.. He is the #1 surgeon here in my area for this kind of surgery. If you ladies have anything you think I need to hear or be thinking about I would very much appreciate ANY and all comments. I hate to admit how little I know about the computer....but I dont know how to post my numbers as of yet to show on the screen when I comment ( 2cm-grade 3 no lymphnodes enlarged per palpation). But I will figure it out or somebody out there give me as hint (LOL)  thanks!! Jody

Plils

TraciSacramento,

Like everyone has said sorry you had to join us but this is the best place you could be, there is so much support here and it will help you get through this with us all.

I felt the same way you do when I first found out but as time went on it did get easier and to me cancer is cancer and it sucks.  I am stage 1 grade 3 0/6 nodes clear, my oncotype score is 17 which as you know is right on the border of do you or don't you have chemo.  Well my mother was diagnosed 7 months before I was, she is 72 and I am 46 also her mother died of ovarian cancer when she was in her 70's.  It is so hard to decide on what to do and my all of my doctors are great I love them so what ever I decided they would support me because everything about my cancer landed in the gray area. I was also sent to genetics but did not have the BRCA 1 or 2 but with my grandmother having ovarian cancer she suggested I have my ovary removed,    I just wanted to do everything I can now because I do not want to do this again in 5-10yrs.  I had a lumpectomy, chemo, rads which I just finished Oct 1st and on Nov 4th had a total hyst/oop and I feel good about my discission to have everything done, once you make your discission you will know how you feel that you made the right one.  Hang in there we are all here for you.  Just remember it is your body and you need to do what is right for you.  Good luck

Lots of hugs we are all here for you.

Love Pam 

Ginger48

Pam-My oncotype score was also 17 and my mom (age 82) was diagnosed with breast cancer 3 weeks before me (age 47). I originally had a lumpectomy but upon discovering I was BRCA2+ I had a NSBMX in June. The doctors felt that I did not need chemo/rads and I went along with their rec. It is hard to be in the grey area. I hope your mom is doing ok?

WaveWhisperer

Jody0918, if you got here, it's easy to add your info to appear at the end of each of your posts. (I was asking the same questions a few short weeks ago!!) Go to the top of this page with the black bar that has options such as "Forum Index," "Active Topics," etc. The 3rd one should be "My Home." Click on that and you should be able to follow the directions there to add info about your diagnosis. If you still can't do it, just message again, and I, or another BC sister, will lead you through it in more detail.

WaveWhisperer

Jody 0918, another thing: Waiting is the hardest part -- or ONE of the hardest parts -- of this journey. It's tough for you, having to wait for your lumpectomy until November 29th, but I think you're wise to have it done by the #1 surgeon in your area, so the wait will be worth it. Between now and then, don't obsess about anything. Try to relax. Can you get a massage prior to surgery? I did, and I think it helped to relax me.

The only "homework" you might consider is putting together a list of questions you want to ask the doctor when you wake up from the surgery. Chances are, you will never remember anything you ask during that twilight period, so give the list to your husband, son or daughter or other family member who will be with you at the hospital. Here are some ideas to get you started:

1. Did the tumor end up being smaller or larger than it had appeared? How big was it?

2. Did you do a frozen section of the sentinel lymph node during surgery, or will it be several days before you know whether a node was involved?

3. If you did a frozen section, what did it show?

4. How many nodes did you end up removing? 

5. How soon can I resume normal activities?

6. What exercises should I start, and when?

Good luck! 

Joan811

Kaara, I had a lumpectomy.  I had to agree to rads with my BS for her to do lumpectomy.  When I went to the R.O., I learned that the recurrence statistics without rads are quite significant.  I suggest you get that data from your medical center if you can.  I do not want to give numbers.  However, two things to consider are that the statistics probably include all lumpectomy patients, so the outcomes are averaged; and your mass is very small.  It sounds like your doctor will reserve decision until post surgery.  I also had a decision about rads - traditional treatment to entire breast (about 32); or I could join a clinical trial to get 10 treatments (only 2 weeks!) just to the lumpectomy site plus 2cm margins.  For me, I had a 1.4cm tumor and 0 nodes.  I felt that a lumpectomy is breast conserving surgery.  After thinking about it, I felt why would I risk a higher rate of recurrence at this point?  So I chose whole breast traditional course of rads. 
It is worth noting that the rads to the surgical site only approach is based on pathology research that shows that most recurrence occurs within that close margin from the original site.  This is a promising study for single site surgical patients.  The reason that I went for the whole breast is because the clinical trial has not yet published results.
In your case, you will have an opportunity to discuss this with your BS and RO and any second opinions you seek. Good luck.

Joan811

Wave - remembering my mammo day - I knew when they took 10 more diagnostic films of the left side only that there was something there.  After my US that day, I went to speak with the radiologist who did the preliminary assessment and I asked her "What language should I be using to explain to my husband what you are observing in my films?"  And she told me "suspicious mass".  Biopsy next day - that doctor told me it had to come out.  Yes, they were very nice to me.
Plils -- Pam, I love your photo - it's beautiful.  So glad your decisions are behind you and you can continue to heal and grow strong.
jody0918, I spoke with three breast surgeons.  The second one was a phone consult through a family friend.  He told me what I should be looking for in a BS. He advised me that because of my tumor size and grade, I could have lumpectomy and sentinel node biopsy without the nodes sampled from the armpit (axillary).  In my third consult, I knew  I wanted her to do my surgery because she told me I would have IV sedation, no frozen path during surgery, and a follow up re-excision if my margins were not clear.  However, my mammos are crystal clear and she could see my nodes and felt they would be negative and they were.
Every case is different; if lumpectomy is an option, the studies do show that the outcome is the same for recurrence.  These studies have been long term and the results are published.  Do discuss your concerns with your surgeon. The variable in lumpectomy patients is chemo which will depend on final pathology.
It's all so overwhelming, but when you make a plan, you will feel better. During my waiting, I found that the NPs were all so willing to prescribe anti-anxiety or sleep meds.
 Hugs and prayers
to all.
Joan

wrennest

Hi Everyone- It has been a week with the news of both IDC as well as DCIS.  We were not sure of what stage until after my MRI and CT scan.   This past Tuesday......we found out that is still contained and has not moved out of my breast tissue.  They will know more after they do the mastectomy.  It looks like it is not in the other breast but my gut is telling me to do both.  I have 2 children and I can't imagine having to go through this again later down the track.  I will have chemo following my surgery.   Hope everyone is feeling the best they can feel under the circumstances.  Best wishes to all.

rachelvk

wrennest - I'm sorry you have to join us here. Is there a particular reason you're concerned about the other breast? Do you have the brca gene or family history? I did have a bmx because of the brca gene, so I completely understand wanting to avoid going through this again. Wishing you the best.

Commett1

Hello I am fairly new to this site but diognosed in 09 with IDC. I am having a difficult time learning how to use the site. Hope all went as well as it could with your Chemo. Your Sister in DIOG. Commett

Kaara

Joan811:  Thanks for the advice.  I am leaning towards the targeted rads vs none at all, but again this will depend on final outcome of surgery and node involvement.

Joan811

Good luck, Kaara.  It sounds like you woud be a good candidate. I hope all your test reports support your choice.  You are going to do very well.

Wrennest, welcome, but wish you didn't have to be here.  Once you make your decisions, things do seem to calm down a bit.  I love your screen name.  I just started feeding birds in my yard and it brings me such peace.
Hugs to all....
Joan

jody0918

WW ,Thank you for the help !! I just am not sure how to find what I need. You would never know my daughter (44 yrs.) is one of the top computer trouble shooters for GM and her mom is so illeterate !! But I have them up there now. Thanks !!

jody0918

IWrennest, I can understand your thoughts with having 2 children. I have to admit that I would want as much as they could do to help ensure a good outcome. I always follow that little inner voice when in doubt. Good luck girlfriend. Jody