IDC (Infiltrating/Invasive Ductal Carcinoma) 2011 Sisters

Plils

Hi joan811,

Thanks about the picture, I lost my hair 12 days after my first chem and when it started falling out I had my son and husband clip it off so my husband wanted me to do his also, I could not bring myself to cut all of his off because he has a big head and it would of been something so I cliped it pretty close.  I know what you mean about the dark room, when you hear that you know you are not going to like what they have to say.  Keep the fight strong and we will all be survivers for a very long time.

Love you all.

Pam 

Joan811

Pam, you make me smile with your haircut stories.  There's a time to cry and a time to laugh, that's for sure.  
I begin rads on Monday - my setup went well and my anxiety has lessened.  I'm ready.
Hugs and prayers...Have a wonderful holiday week end and stay well. 
Joan

Kaara

Hello ladies:  After several months of tests and more tests, I was finally dx with IDC low grade 1, stage 1, ER/PR++ HER2-, very small 0.8 cm.  My lumpectomy is scheduled for December 12, and depending on the outcome of the sentinel node biopsy, perhaps radiation.  I am 70 + years of age, so there are studies that suggest that chemo and radiation are not a benefit for my age group.  My doctor still wants me to do radiation, but I am waiting for the sentinel node outcome to decide.

In the meantime I'm on an anti cancer diet with mostly raw foods and juices, and no white flour, sugar, etc.  Cancer doesn't survive well in an alkaline environment, so this is my best hope to keep it from recurring.

Have a wonderful Thanksgiving everyone!  It's so good to have this thread to communicate with others that share the same challenges. 

Joan811

Kaara, that is good news about your tumor size, stage, grade and + status. 
If you do have to consider rads, do think about the accelerated or shorter term partial breast radiation.  It's just insurance to destroy and microcells that were not in the biopsy area.
I wish you best of luck and I'm thinking you will do great.
I admire your diet - I have been craving the wrong things again.....grrrrrr if only I had a cook to make my meals!
Enjoy your holiday week end.

Blessings2011

Hi, Ladies!

I thought I'd already posted here, but noooooo!!!

Got diagnosed on September 15th....multi-focal cancer. Two separate tumors of DCIS, but one tumor also has two areas of IDC. The good news is that it's small, cribriform, and Her/2/Neu neg.

The bad news is that my BMX with recon was originally scheduled for October 31st, then rescheduled due to BS/PS schedules. The next date was November 8th, but I got a horrible flu, and they made me reschedule (thank God! I was really sick!) But the next date was December 5th, and even though I've needed this time to recuperate, I also get anxious sometimes that the "invasive" part of the IDC is just growing like wildfire! Of course, it's not, but still...

I'm SO happy to have found this site. I feel like I'm prepared for the surgery and the recuperation, and that's because of all the good advice I've read here!

WaveWhisperer

First, Happy Thanksgiving to all of you wonderful women who are on this journey, offering advice, support and friendship.

 Second, Kaara, I agree with Joan811 that you should ask your breast surgeon whether you are a candidate for accelerated partial-breast irradiation. The surgeon places a catheter into the space where the tumor was. You get radiation twice a day for 5 days, instead of the usual once-a-day for 30 days. It's not only quicker, but you also avoid many of the side effects of the usual radiation protocol.

I ended up not being a candidate since the breast surgeon found micromets during the sentinel node biopsy, and I was disappointed because that was very much the route I wanted to take.

 Good luck! 

Kaara

blessings2011:  Sorry about dx, but praying you will have a positive outcome in surgery.

Joan811 & WaveWhisperer:  I asked about the mammosite, and My BS said he is not a fan of it and explained that he doesn't like to leave a cavity in the breast which can fill up with fluid and also that you can get an infection from the the implanted device.  He prefers the three week radiation treatment.  I am meeting with the onco and others on the team next Wednesday, so I'll ask them their opinions.  I still have time to decide.  Is there any other kind of partial breast radiation?   

auntienance

Kaara, I'm not familiar with mammosite in particular, but I had partial breast radiation. The catheter is placed in your incision and tumor site, so I'm not sure what extra cavity he's worried about creating. They want to do it soon after your surgery before your incision is healed. Some even have the device implanted during the lumpectomy procedure. There are a few hoops to jump through (tumor size, distance from the chest wall, node negative). other than not being able to shower for 12 days, I was very pleased with the whole process.

dogsandjogs

Karaa: My onc said I was not a candidate for the marmosite either - can't remember why now. After the lumpectomy I had a consultation wih the radiation oncologist (another one) he explained all the pros and cons of radiation at my age (75) he was very honest and did not try to influence me either way which I really appreciated.

Due to the fact that I have severe osteoporosis (rib breakage can occur with radiation) and atril fibrillation (my cancer was on the left side and part of the heart does get irradiated during the procedure) and that other cancers can occur, and that at my age the benefits are very, very small, I decided against it. But everyone is different - my friend who is 73 is going to do the rads. 

Just remember it is your decision!  I talked it over with my family though ---only my DIL felt I should do the radiation; the others agreed with only an 8 percent chance of the cancer recurring (versus 5 percent with radiation) it wasn't worth it.  Good luck with whatever you decide!

WaveWhisperer

Just to clarify, Mammosite is a brand name, or so my breast surgeon told me. In fact, she doesn't use Mammosite now, preferring a different brand -- Contura?? I think the "cavity" Kaara's surgeon is referring to is the space where the breast tumor was removed. I presume one of the reasons you don't shower for the time the catheter is inserted (usually 10-12 days) is to prevent infection.

As we all know, each of us and our cancers are slightly different, and each doctor and cancer facility has their own preferences. There's no one right answer. 

Kaara

srbreastcancersurvivor: I am leaning in the direction of having no radiation as well.  Once my surgery has been done and I know my final risk, I will decide.  I'll be 72 in June, and my quality of life has been excellent thus far.  I don't want to compromise that, even if it means I might have to risk a possibility of recurrance.  My friend had rads and then got bc in the other breast one year later.  My friends are pushing for me to do rads, my family is dead set against it, but will support whatever path I take.  It's going to be a tough decision.

Thanks for the input everyone...it has been very helpful. 

Ginger48

Kaara- My mom was diagnosed at age 82 with very similar statistics and her dr said no rads just aromasin following her lumpectomy. Good luck with whatever you decide is best.

Joan811

Kaara,
I was offered a 10 day partial breast external radiation to the surgical site.  I am 63 and chose whole breast radiation for 30 days. It was a difficult decision, but I wanted to do what I could to avoid more surgery on that side.
Cancer can recur on the unaffected side which is not irradiated.  Then I'd have to deal with it as I did the first time.
Good luck, and once you make your choice, have peace.
Best wishes,

Joan

jody0918

Well I hope I am not being a Pollyiana about this thing. I had my lumpectomy Tuesday afternoon; went home 2 hrs. later. Felt good, walked every 2 hrs. until 11pm because of blood clots forming they said. He did the node biopsy and it was negitive....YES !!!   I stayed home Wed. and just did house cleaning, baked a cake, laundry, wrapped Christmas gifts and generally took it easy. Went back to work at 7 Thrus. morning till 5pm and felt good. Worked Friday 10 hrs and got the call that my margins were clear. So right now I am feeling that positive high that I am sure they will temper when I see the onco Wed.  I will get my numbers and er/pr/ her info then and will have both feet back firmly on the ground by the end of the day. BUT....for now its a good feeling that nodes and margins were the best they could be. I hope all of you  have a day or 2 that just seem to be almost back to normal again.

Ginger48

Congratulations Jody- It is always good to get some good news!

stage1

Kaara, I wavered back and forth about rads.  I am 63 and my MO and surgeon and RO all could not give me their blessing not to do rads.  My family backed me no matter what I decided.  So, I went forward and finished rads in July. It was not easy.  But I am glad I did it...so far.  So far no major SE.  But pain at the site lingers, just enough to remind me...Finally almost no pain.  I don't really get why they tell you if you are over 70, you might not need rads...actually my mom is a BC survivor and is 90.  But she had a mastectomy.  Good luck with your choice.  I just wanted to chime in for you, as I think it was very difficult decision. I think what swayed me to get rads was my grade 3.

WaveWhisperer

Jody, don't worry about being a Pollyanna. Enjoy every minute, every second, of those periods when you feel good and get good news. As we're all learning, it's usually a trip of ups and downs, of good days and bad days. We've all gotten such rotten news to begin with that it's important to savor those occasions when we get positive news. Everyone says a positive attitude means a lot.

I got some good news myself Friday -- clean CT and bone scans. I know that  Monday, when I meet with the MO and get my Oncotype score, it may be a more sobering day. So I made sure that I celebrated my good news and enjoyed the weekend.

Yes, let's all enjoy those "almost normal" days. I call them "non-cancer" days, when I can almost forget what I'm going through.

 Let the good times roll! 

barsco1963

Congrats to Jody and Wave - I agree that we must celebrate and enjoy the good news when we get it!

kal21

 It all is confusing.. 1 year later I am hearing from good web sites I should have been retested because PR was 80% + on pathology and Neg on OncoDX..I asked over and over about this but all said if ER+ than do tamoxifen.. now that is not the case.. so what now? See mo Dec 13th..

any thoughts out there?

Thanks

stage1

No doctor ever mentioned my path report and it did not say what percent I am on ER and PR.  I had to try to understand that myself.  bar630, can you tell me in a nutshell what the percent means?  I am now on Arimidex.  I did not get the OncoDX, either.  Wish there was a protocol for BC in general. 

camaryb

Hi.

I am new to this site. I was diagnosed July 29, 2011 with IDC. I am 42.  I had a double mastectomy Nov. 1, 2011. I also started reconstruction at the time of th BMX.  I also had my ovaries and tubes removed. Between the hot flashes and the expanders I am miserable. I found out Nov 22 that I am lymph node positive.  I have appointments this week to discuss radiation and chemo.  I really am not sure what happens now.  I think I just need other people who are going through this to talk to.

odie16

Camaryb - I am so sorry you are having to join us but hope you will find these boards as informative & comforting as I have. I had a double mastectomy in September and HATED my expanders the entire time . Just got rid of them before Thanksgiving.  Take it one step at a time ... We are here for you...  

Ginger48

Mary Beth- so sorry you are dealing with this. I had BMX in June and hated my expanders so I know what you mean. I am having oopharectomy on Wednesday and will be joining you in hot flash land soon. I did not have positive lymph nodes but I am sure someone will be around soon who can answer your questions.

Kaara

stage 1:  From what I understand, the percent attached to the ER/PR is more favorable the higher it is, particularly if you are HER2-.  There is also another score, the Ki67, the lower the better, and anything under 10% is better still.

Did your BS mention oncotype testing to you?  I read about it and wanted it done, even if I decide not to do chemo, because I want to know my score for recurrance.  If I end up with a high score, and a high probability of recurrance, I might consider some alternatives to chemo or hormone treatments.

You must be your own advocate on this disease.  Some doctors will only tell you as much as you ask, and would prefer that you ask very little.  Mine happens to be one that explains everything, even though I have already researched it, but I don't mind, because he reinforces what I have already learned and I know we are on the same page.  Ask for copies of the pathology report and any other reports about your condition.  Don't be afraid to ask questions...write them down before you go for an app't and write down the answers as they are given to you.

Camaryb:  So sorry you are in this place right now, but you will get support here on BCO.

Jody and Wave:  Good news! 

Joan811

Jody, So glad your pathology is coming back in a good place so far.
If you had a biopsy, you can get a copy of that; but the post-surgical pathology is most accurate.
I think we all celebrate with a sigh of relief when good news comes our way.
Best wishes,

Joan

Ginger48

The hospital where I did my lumpectomy ordered the oncotype test but the one where I had my BMX said they do not order it if your lump is smaller than 1cm. Not sure what other hospitals do?

lizzy4e

Hi I am new to this site and recently diagnosed with breast cancer. I am a 40 and this is my three cancer. Hodgkin's disease, 1985 had treated with mantle radiation, 2010 Papillary thyroid carcinoma, 2011 site left breast ER/PR positive grade I no lymphovascular invasion Diagnosed 5/14/11 Had lumpectomy and sentinel node biopsy . ER and PR positive,I had IORT radiation during surgery and now I was told by my oncologists to start taking tamoxifen as next course of treatment. I had a Hysterectomy and remove only one ovarie (Endometriosis) and I was told that my ovarie is producing estrogen and I would have to take tamoxifen to stop the estrogen. I am very scared of the side affects. I would like so help?
Thanks
Liz

Ginger48

Liz- wow you are really a fighter. Hope this is the last DX for you! There are several threads on tamoxifen on BC.org. Here is the link to one of them; I hope it helps get you started. Good luck!

http://community.breastcancer.org/forum/78/topic/764819

WaveWhisperer

CamaryB, You'll find lots of support and advice on this forum. It's like getting thousands of new friends, ALL of whom know what you're feeling and going through. No matter how loving and thoughtful our family and friends are, they never know exactly what we're feeling. 

Yesterday, I read Elizabeth Edwards' book, "Resilience," and was surprised to learn how much of her own fear she kept from her family. She said she knew they couldn't do anything about it, so why worry them?

On here, you can let it all out, vent to your heart's content.

BTW, I don't live there now, but I spent most of my adult life living in Hampton Roads, specifically VB.  Surry is lovely. 

stage1

Kaara, Thank you for your support and imput on my questions.  I do have a hard time being my own advocate.  But I know I have to be..you are so lucky to have a doctor that is open with you and welcomes your knowledge.  I am not sure that I would get one like that if I change MO's...