IDC (Infiltrating/Invasive Ductal Carcinoma) 2011 Sisters

hawk

Hi Lisa - I had the MRI right after my diagnosis last month as well. Prayers that it goes well for you.



Here is a great list of questions from this site:

http://www.breastcancer.org/treatment/surgery/expectations/questions.jsp

Snoopsmom

Hello, sisters. I just had my biopsy last Monday the 12th, got the diagnosis on Wednesday the 14th...Stage 2. I'm all set up for my lumpectomy on Jan 19th, then will get 6 weeks daily radiation. That is, assuming there are no surprises from the surgery. I'm obviously very new at this, and am trying to learn the "lingo" and digest all the information that's out there. I'm assuming the wire you are all referring to is the little "locator" wire. I had one inserted at the time of the biopsy. In spite of the local anesthetic, the procedure was fairly painful, but tolerable. 

I'm 64 years old, widow, no kids, so my sister will be my local support system. I take comfort in the fact that I personally know a LOT of women who have had a similar diagnosis and are doing fine. One ironic twist...my brother, 5 years my junior, is currently battling lymphoma. But so far  he's winning....hooray for him! My sister-in-law (brother's wife) is a nurse and has been very helpful as well. Unfortunately, she lives out of state, so I'm sure I'll be "talking" with all of you a lot during the next weeks and months.

Diagnosis: 12/14/2011, IDC, 1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-, Oncotype DX 9
Lumpectomy 1/19/12, Rads 28+6, Tamoxifen 

JLW49

Hi Everyone,

I was diagnosed with IDC in July 2011.  I found the lump by happenstance ~ I was taking a shower one night and had forgotten to bring in the new "poof" I normally wash with so I had to wash with my  hands.  That's when I felt the lump and it was large.  It wasn't detectable by touch in April when I had my annual exam so it had grown very fast.

I was at my doctor's office the following day and had a mammogram and sonogram the day after that.  I met my surgeon two days later where he did an ultrasound guided biopsy.  I received my diagnosis on 26 July 2011.  I was diagnosed with an extremely aggressive IDC that had infiltrated the lymph nodes, was Progesterone and HER2 negative, and only 7% Estrogen positive.  Fortunately, after many tests, the cancer had not spread and it was decided to do 8 treatments neoadjuvant therapy - 4 weeks AC / 4 weeks Taxol, every two weeks, which I completed the Tuesday following Thanksgiving.  The tumor responded to the chemo very well, was virtually non-existent by touch, and an ultrasound showed very positive results not only with the tumor but the lymph nodes also.

I just underwent a lumpectomy with axillary lymph node dissection on Monday and am awaiting the test results.  I've already met with the Radiation Oncologist and will be starting 6 1/2 weeks (M-F) radiation treatments as soon as possible, hopeful to start mid-January.

As horribly has this journey started out I feel blessed that my results are so good thus far and don't know what I would have done without the love and support of family and friends.  I'd just lost my mom to a rare disease in January, so this was particularly difficult to go through without her.  But, during chemo, as I was able, I continued to work (albeit teleworking), go out with friends and go on with my life the best I could ~ I was damned if I was going to let cancer win!

Kaara

Snoopsmom & JLW49:

 Welcome to the site, but so sorry that you have to be here.  We are all here to support each other, and you will get a lot of comfort, support and good information while you are going through this challenge.

I joined in Sept 2011 right after my mammogram and us detected a problem.  I had my surgery on Dec 12 and was fortunate enough to have caught it very early stage and got clear margins and nodes.  I haven't decided whether I will do radiation, but I am going to an integrative physician who is helping me with my diet and supplemental program, a very important part of preventing bc recurrance.

Half the battle is maintaining a positive attitude and a belief that you will come out on the other side a healthy person.  Make decisions that you are comfortable with, be your own advocate, do your research about your treatment options, and enjoy your life.

Sending you both prayers and positive energy! 

Ginger48

Snoopsmom & JLW49:- You are in the right place for support and information. So sorry you have to be here. I agree with Kaara; positive attitude is crucial!

chickintpa

I have IDC also.. seems to be the flavor of most of us... I am 47 I just loss my Dad and my best friends son in the last 6mths now this.. I am still thinking everyone is talking about someone else... but no.. it's me.. I have an appt with the surgeon tomorrow to get the results of my MRI .. unk the size.. or if's spread... I am a nervous wreck.. any suggestions to relax?? And how do you all feel about radiation and or chemo.. I read all kinds of things on line-- we are waiting for my DNA and Genetic results... Merry Christmas to all... may God bless and watch over us all!

Kaara

chikintpa:  Welcome to the site...again, so sorry you have to be here, but you will be glad that you joined as you will receive comfort and support as well as a lot of information about bc.  

I don't think anybody is excited to do rads or chemo, but it's a personal choice, and one that you should research carefully once you get your dx.  My suggestion is don't let doctors dictate to you what your choices should be.  Make those yourself after careful study of all the options for treatment.

I had my surgery on Dec 12, so I have about six weeks to decide whether I want to do radiation.  I have been to an integrative physician who is giving me immune boosting supplements that will help me get through radiation treatments if I decide that is the route I want to go.  Diet and exercise, as well as a positive attitude are important components in beating this disease.

I wish you the best outcome.  Sending prayers and healing energy your way! 

stage1

Oh, I feel sad that we have so many new diagnosis on the site:( but welcome, I have learned so much from many ladies before me.  We are all so hungry for information, not always provided by our doctors. 

Kaara, I am interested to follow your integrative physicians advice.  I was told by my RO, when I was almost done with rads that I should not be taking any immune booting supplements except my calcium and daily vitamin.  Even told me green tea is not advised during rads, (I was very irratated at my RO, because she told me this like near the last days of rads)..I had been drinking like a quart of green tea a day!  Then, they sent meto the nutritionist in the last week of rads to find out I was not supposed to be on a weight loss diet during rads.   (I had lost 10 lbs during rads.

Gayle56

I had my lumpectomy on Dec.6. Still a little sore under my arm but other than that I feel good.  I have met with the RO twice and now have to make an appt. for a CAT scan and simulation. I had a boost done during surgery to reduce my RAD time.   Tomorrow I have an appt. with the MO.  My oncotype score was 20.  My surgeon was not recommending chemo unless my score went over 30.  Hopefully the MO will be in agreement with that line of thinking.  I will be on hormone therapy for five years.

Kaara

After I had my surgery I read about the radiation that can be done "one time" during the surgical procedure and that is it.  If I had known, I would have asked my doctor, but I am assuming they didn't have that option or it would have been offered.  I'm going to be disappointed if it was available and not offered to me.

I go tomorrow to see BS and have him check me out after the surgery.  I seem fine, but still a little tender in the site of the scar and nipple area.  After that, we're off on a cruise for 7 days and then back to onco app'ts and such.  I'm not planning on doing radiation but will listen to what they have to say.  I have my studies on 70+ women and the fact that radiation is not necessary for the very early stage cancers, which I have.

I'm seeing an integrative doctor that has me on diet, supplementation and vitamin infusions to boose my immune system to avoid recurrance....hopefully!  There are no guarantees regardless of what you do, but I'm going to build up my body so that it can fight this thing with all it has. 

stage1

I didn't want radiation, I had a hard time deciding.  Finally did it, as no doctor would agree with me that I did not need it.  I never really understood the reasoning behind the 70+ cut off. 

Kaara

stage 1:  I don't think they really can say you don't need it...they have to recommend because it is part of their AMA guidellines that they must follow.  If they told you that you didn't need rads and you had a recurrance, then they could be held liable.  The studies I've read say that the outcomes for women over 70 who had radiation vs those that didn't were virtually the same.  

My real concern about doing rads is the fact that my bc is on my left side where my heart is located and I have a heart valve problem that could be made worse.  It could be a greater risk to do rads unless I can be assured that my heart will not suffer damage.

Everyone must make their own decision based on their individual situation. 

Joan811

Kaara,
I was told that if I had a lumpectomy I would have to agree to radiation.   I was offered a 10 session course of treatment only to the surgical site.  Studies are being done to confirm the belief that in early stage small tumors, the BC is usually contained within small margins around the tumor. 
I chose the traditional (30) because I felt that with breast conserving surgery, if there was any other site unseen in that breast, I wanted to do the whole breast.  I am getting close to the end and it is not bad.  I am having treatments lying face down.  This position can help diminish heart involvement.
It is not a trivial thing to do to the body.  However, since I have chosen to keep my breast, I have decided to take the "insurance" on it. 
I hope your recovery continues to go well and that you get good reports from your doctors.
Joan

Kaara

Joan811:  Thanks for your comments.  I would consider doing rads if they could do it in a prone position to prevent my heart from being involved.  That's the only way.

WaveWhisperer

Joan, I had wanted the "express" radiation -- 10 sessions over 5 days -- but, at the time of my lumpectomy, the surgeon ruled me out as a candidate because of the node involvement she discovered. However, in the end, I think I'm glad I'm going to have the full 30 sessions. As you put it, this is "insurance."

I'm doing chemo right now, but I'm going to ask about the "face-down" option for rads, when the time comes. I do worry about the radiation so close to my heart. Thanks for that tip. 

Layla2525

Has anyone had any trouble with the insurance?  I thought you just paid the deductible and the dr billed the insurance and then you paid the remainder.  They had me scheduled for surgery then I got 4 phone calls, the surgeon,the PS,the anesthesiologist and the coordinator saying I needed to come up about $1000 down paymt each for them  cause they dunno how much Blue Cross will pay. Huh? I tsays 85% in the book and they want their 15% I pay now. Oh yeah,you have to take off work and drive all over town and interview your own PS. Oh yeah,crying and working 10 hr days worrying about who will feed my dog. Trying to return 7 calls on the 30 min they give me for lunch. I got IDC and nobody will give me a break!! I called Patient Affairs and she says We dont handle the drs we only handle the hospital. Huh? I wish I had her job where you do nuttin honey!!! They tell me its stage 1 and well differentiated. whatever that means. There is a nurse coordinator but she basically gives you a bunch of pamphlets on chemo. Nice job. I elected a double mx cause 2 aunts died of this and 1 had treatment and passed away peacefully on Christmas at age 100 in the nursing home.The office scheduler told me surgery was Jan 31st. I said is that ok with cancer? Then she calls back and says ok come on Mon & bring the money (is she with the mafia or what?) so I called and says cancel everything, I gotta go get a loan for all this since you dont honor insurance at Baptist Hosp. She says ok at 2 pm and then right b4 she leaves her office calls back and says she didnt cancel it all and I gotta be at the anesthesia appt tommoro at 2 pm. huh? like I gotta work ya know, cant give me a few days notice? Who do you call? Ghostbusters? I am thinking of firing my dr and going to another hosp except I love the plastic surgeon,she is a woman from Chapel Hill,NC where they do all the clinical trials.

Kaara

Layla:  If you have good insurance, and Blue Cross is good, I have never heard of a doctor wanting their money up front, unless it's a co pay.  That's all you should have to pay up front.  It sounds to me like they are trying to get money out of you, but if you can't come up with it, they will still do the surgery and bill the insurance company.  Call their bluff and say, if they are going to insist on payment, then you have to cancel the surgery and go somewhere else.  I'll bet they go ahead with it, because they would not be acting in an ethical fashion if they refused to do needed surgery on you over an upfront payment.  This stuff makes me crazy too!!  With all you have on your plate, you shouldn't have to negotiate with doctors over MONEY!!  Greedy SOB's!

odie16

Layla,

As Kaara mentioned, there may be a surgical copay that is usully pre-paid. (mine was $200) If a percentage of the bill will be due from you, it is usually billed after your insurance has paid their portion up to you plans out of pocket maximum. As for the added stress of it all, I sooo agree with you. The added financial burden was not something I needed but I dont have the energy to pursue any help on them so I am just on multiple payment plans to providers....

I too say call their bluff. Likely they will prefer to get a surgical fee from the insurance rather than nothing when you decide to go somewhere that cares more about the patient than the money.

odie16

Layla,

As Kaara mentioned, there may be a surgical copay that is usully pre-paid. (mine was $200) If a percentage of the bill will be due from you, it is usually billed after your insurance has paid their portion up to you plans out of pocket maximum. As for the added stress of it all, I sooo agree with you. The added financial burden was not something I needed but I dont have the energy to pursue any help on them so I am just on multiple payment plans to providers....

I too say call their bluff. Likely they will prefer to get a surgical fee from the insurance rather than nothing when you decide to go somewhere that cares more about the patient than the money.

stage1

Insurance is one thing, trying to get through this, hoping you are getting the best treatment possible, then you wonder, if I argue over the insurance/ money, will they take it out on my care????

About the prone position, they told me that they could not, as it is for women with very large breasts.  I am a B cup, RO said that they could not do it on me, as the aim of the beam would not be possible...but maybe she was telling me that because they did not have the proper table??? I hate not to trust people...

Layla2525

Thx for your support ladies, yep thats what I did,fired the greedy surgeon and called their  hosp systems other location at the beach and they said they would work with me on finances only problem is current surgeons office lady told me surgery is Wed and the PS called and says its on Tues Jan 3rd and I told the office lady twice,once on Thursday 12/29 and once this morn that I need time to go to the bank so the surgery is cancelled but she never took me off the computer for surg. I am firing them. I dont need the stress.   Stage 1:  I completely agree with you, its so hard to trust any of these folks. I wanna go a little bigger,maybe a C,gosh I gotta get a silver lining outta this. I think I must be an A, my PS says once she is thru with me, I'll never have to wear another padded bra. You go girl!!!   Stage 1: Dont they lift you to the sitting position in OR to make sure the new body appendages look right? heres to everyone hoping the rads are over soon and no more bc. I wanna have bmx with imm recon. Drs are ok with it. Dont wanna go thru it again if bc got in the other breast. PS told me I would also be exempt from mammograms. I know I am silly stupid  trying to find a bright side to this whole thing even if it is just an old tin can covered in olive oil.

Kaara

Layla:  It is what it is, so the more positive spin you put on it the better it will be for you!  All the best to you with your surgery and reconstruction.  Heck of a way to get a boob job, but like you said...there's gotta be a silver lining somewhere...lol!  Seriously, I'm sending you prayers for a very positive outcome.

stage1

Layla, I finished rads in mid July of this year, after lumpectomy, so your procedure is different than mine was. When I mentioned the prone position, I meant for rads.  You will probably find more information on another thread having to do with reconstruction.  I am praying for your positive outcome.  I am glad you fired the Surgeon you are uncomfortable with.  It is so important that you connect with the surgeon.  My surgeon did such a great job.  And I am sure you will find the right one for you.  Keep us updated...

odie16

Happy New Year to all the 2011 IDC sistas!!!

Time to kick 2011 to the curb and may we all have a healthier & happier 2012....

bgail84

I have had the good fortune not to be asked for any money up front.Everything has been billed to Blue Cross. Reminding $ I am paying on monthly and that seems to be okay. I had a lumpectomy and my BS strongly advised to have rads. I started two weeks after surgery and will be finished by January 15th--30 treatments. I feel it is extra insurance. I will have to say my doctors and nurses have been great. My BS even calls me to check on me!  Good luck to everyone and I hope all have a better year coming up.

chickintpa

Ok I have addtl  info-- my surgeon recommends chemo pre surgery once every 3 wks 6 times which is 4.5mths to shrink the mass which according to the pathology report is 1.4 to 2.2cm in length but I am told it could be bigger because my breast is very dense .. and I have fibrous tissue so its hard to figure out where the mass ends-- however they have staged me at staged 2 . due to its size- unk if the lymph nodes are infected - ok this is my quesstion my ER is at 64  my PR is at 21 both positive. her2 score is 3+  ki67 is positve 31 -- I am not sure of all these numbers other then the ER score which is the estrogen- I can only assume they will give me tamofloxin for 5yrs to avoid producing estrogen since I am pre med.. my surgeon is suppose to be the best - he has a trial going on and he has invited me to particpate .. he said I would be watched closer- my treatment would be the same chemo to shrink and see if that works so they can do a lump instead of a mas.. since I am small 34c the surgeon feels he will have to take enough with margins that it would be a mass and he wouldnt be able to save the nipple..my mass is in the upper right corner of my breast.. my other breast is fine--I am going to give the surgeon 2 chemo treatments and if the tumor hasnt shrunk I am going to get the surgery because only 1/3 of the patients tumor shrinks and if mine is not shrinking I do not want to wait 4.5mths.. does this make sense? I also want to send my DNA and Genetic findings to the Burzynski clinic to reveiw and base my "cocktail" on my dna not just protocol ..I was also told due to my age they would of done chemo after surgery to be sure no cells have gotten away from the breast area - so doing it before is the latest procedure with better outcomes-- I am single and 47 unk how I will look -- If I could live with the sight of a mas vs a lump I would do the mas... to be sure--I hate the thought of losing my hair..I know my life is more important..but its scary--  what are your thoughts.. has anyone had any other treatments with my stats? for IDC..

Reality

My BC also recommended preadjuvant chemo to shrink my 3.5 cm tumor - I had four, two- week cycles of AC and four, two-week cycles of Taxol. The tumor shrunk to half it's original size and I had a lumpectomy with clear margins. However, the tumor that was removed still had active cancer cells present, so my path report states that I had an "incomplete (moderate) response to chemotherapy". Monday will be my 31st and last rad treatment - Yea! I will then participate in a research study I was "invited" to join due to my path report. I will be taking oral chemo for 16 weeks in hopes that it will "delay" recurrence. I wish the word they used was "prevent", but the researchers are very careful about giving too much fuel for false hope. I am still hopeful. 

TexasBetsy

I am sorry that you have to go through all this. I'm just really sorry.

I'm sorry I didn't have a double mastectomy. Instead I had contura accellerated partial breast irradiation. I cannot recommend this technique. 15 months after I still have significant pain from seroma that migrates into the entire right shoulder and neck. I realize you aren't a candidate.  No one ever offered me mastectomy with no radiation.

Beebop

Chickintpa - I did chemo before my BMX and also took part in a study. 12 weekly taxol and an oral chemo drug (study drug)' followed by 4 DD A/C. The MRI I had before my surgery showed complete response to chemo, no cancer was seen. When they did the surgery they found 1mm left of the tumor that was 3cm to begin with. I would not give up on the chemo too soon. Mine started to shrink after just 3 weeks and continued throughout the chemo. I hope you have a great response!

Joan811

Stage 1 - you bring up a very good point which I omitted.  I do not want to be misleading.
The prone position is definitely for women who have a "pendulous" breast which will protrude freely through a space in the customized table.  I was told I might not be a candidate because I didn't have a lot of separation between breasts; however, I was able to keep the other side out of the radiation field with a wedge to hold it up.  It sounds weird, but there are certain conditions.  Also, if nodes are involved, the machine has to be able to irradiate the nodes efficiently without too much manipulation.
I also want to clarify that the prone position may minimize heart/lung involvement; however, there is no guarantee.  Each person has an individual physiology and results will vary.
I personally feel it was a risk worth taking.  Radiation does not have any specific effects on the non-surgical side, so the risks for BC on that side remain as they were.
I hope this helps. 
Joan