Newly Diagnosed w/IDC - help with questions

B...

Sorry you had to be here, but you have a lot of support from these women. This is the hardest time.Waiting to meet with the oncologist, surgeries ect. Yes , it is scar. I was diagnosed at 30, will be 32 in 2 months. I have a 3 year old daughter. One thing I would recommend is to get the BRCA gene test done. These genes are the breast cancer and ovarian cancer genes.This would be wise due to your family history. Talk to your onc about this but I'm sure he/she will do it regardless. I just saw that both your breasts have IDC so I would figure that you would be planning bilateral mastectomies.

Waiting for MRI and scan results are nerve racking, but hang in there. I'm not in California so I can't really give to much advise on doctors / hospitals but I'm sure more woman will come here and offer their opinions.

Remember you will get through this....come here for support. There will be a lot of new language to learn I'm sure. You have come to the right place.

sam.

Hi, B ~  So sorry to hear that you've had a recent diagnosis, but you've come to a wonderful site for information and support.  I live near Palm Desert, and although I initially started my treatment here in the desert, I quickly wound up at UCLA.  In choosing UCLA I had also contacted City of Hope.  Personally, I found UCLA's multidisciplinary clinic -- where you meet with a full team of specialists who examine you and together review your case in one afternoon -- much simpler than what City of Hope offered, which was an app't. with a breast surgeon.  I also got the most incredible care @ UCLA, including state of the art reconstruction that is available at only a handful of facilities.  I honestly can't say enough wonderful things about the surgeons and everyone @ UCLA.  They're the best there is.

If I can tell you anything more about UCLA (names, contact info', etc.) you can click on my screen name and it will take you to a page with a "Send Member Personal Message" icon.  Feel free to contact me if I can help any further.    Deanna

Even the most knowledgeable people at time of diagnosis find themselves feeling confused about all the information one has to deal with, because everyone's situation has complicated differences and because new info about genetics and computerization and science is moving so fast that there is a lot more to learn.

I'd recommend Dr. John Link's books for a really good guide for figuring out the process to go through, and a book like Dr. Susan Love's Breast Book that goes into more technical detail about the disease itself (even though the third edition came out a while back).

You have come to the right place.  Yes...you will find yourself on this site often.  There are so any wonderful people here and you'll get lots of great advise and support.  Hang in there....I am 6 months out of my diagnosis.....had a double mastectomy (cancer in one breat only) had chemo...now growing the hair back.  Every step was filled with agonizing anticipation.....but once I got past the anticipation the process was not as bad as I thought.  You will make it trough....try to remember the anticpation IS the worst part!!  We  are here for you!!!

Oh, and for chemo, there are several great threads in the IDC forum.  I start my TCH regimen in June, so I can't yet answer any chemo questions, but I've seen that many women are able to work at least part time through their treatments.

Depending on which chemo regimen you get put on (If any), you'll find a set of threads where others can tell you about side effects and how to deal with them. Just  remember that everyone's story is different (hence statistics are a guide to the terrain, but not a crystal ball for your particular future).

 This is a great website for information. Livestrong!   

I am a year past diagnosis with IDC (may 2, 2008).   The factors that are used to plan your treatment include the SIZE, the STAGE, ER and PR positive OR negative, HER2 positive OR negative.   Oncotype is done if you are ER and PR positive.  These factors are the keys to making your plan of treatment "personal".   There are options or choices in most cases.  

I had neo adjuvant chemo, dose dense A/C, then 12 weeks of Paclitaxol and Herceptin since I am Her2 positive.  A lumpectomy because my tumor was zapped to nothing by the chemo.   But I may be the odd one since I am a widow, 62 at time of diagnosis, and I wanted to avoid as much "cutting" as I could due to the recovery scenario of having to have someone nearby.  

I admit I overloaded myself for 3 weeks before I saw the oncologist.  My questions took up 4 pages and I was so stressed because it was just before my only son's wedding.  Trying to maintain the Happy Face and wondering IF I would live to see grandchildren, etc.   I spent hours on google and on this site, writing down questions and confusing myself more each day.   The tape recorder was my best friend, as I could go over and over the questions and reports again and again to help me make an informed decision.

Then to add insult to injury, my first mammogram since lumpectomy showed a suspicious area on the other breast.  My mind raced with metastasis, recurrence,  and more.  A stereotactic biopsy revealed it is benign and a follow up mammogram will be done in 6 months.  

I feel for you and know that your vocabulary will increase by leaps and bounds as you get more information.  You do not have to like it, but you gotta do it.  Ease up on yourself and try to relax and have some fun.  Go to a funny movie, out to eat,  put "cancer" on the back burner for a day or two.   Tell others you do not want to discuss it "at this time".  

If you check out the Forum Index, you will see it reads like a medical journal - sort of.  Many, many factors and treatment options, side effects, surgeries, and OH MY GOODNESS,  success, good test results, and most of all, love and support and caring ladies who have been there or are there with you.   

If you are the praying (religious) type, light a candle for yourself and ask the higher power to guide you and your doctors to what is right for YOU, and for peace and power to handle this time of your life.     Hugs and Blessings,   Nancy 

Hi Bettina,

Welcome and warm hugs.  One thing I noticed about your schedule is that you are seeing your onc early.  Many women, and others may have a different opinion, don't meet an onc until after surgery because what comes out of the surgical pathology report may change everything the onc told you prior to surgery, and I've heard and read that can be very difficult.  Talk with your Breast Surgeon (BS) and find out why you are seeing the onc first.

To answer some of your questions...

I was out for 12 weeks.  I had a bi-lateral mastectomy (BLM) with immediate reconstruction.  I needed the time out to heal and figure out treatment.  Based on my Oncotype DX score I did not have chemo.  I did have a full hysterectomy and my ovaries out (May 4), I also take Tamoxifen.

Reconstruction and all revisions are covered by insurance, it is the law.

I've had second and third opinions paid for by insurance.

There are many reconstruction techniques, ask around here under the reconstruction threads, develop a list of questions and meet with as many plastic surgeons (PS) as it takes for you to find one you like and who is well qualified.

Also, take the time to meet with a couple of oncologists, this is someone you are going to work with for a long time, best she/he has great credentials and is someone you are comfortable with.

As mentioned take someone with you to appointments, and have lists of questions.

I too suggest you find someone to talk with many breast centers have social workers and offer a number of free sessions.

Groups can be good, but wait until you are confident in your treatment plan, I found, for me, I went right after diagnosis and it all just scared the heck out of me.

Remember here, or in group, or in discussion with friends, you are going to hear many things, (do this, don't do that, my friend did...etc.) take it all in and then decide what is best for you.  All of us are unique with slightly different diagnosis.  I do have to say I am impressed with the the information, courage, support, and love I see on these boards.

Since I was node negative--I had no PET scans, or other scans.  I did have a bone density test before I had my ovaries out.  My doctors felt that my status didn't warrant more scans.  I hope they are right.  I have a main oncologist and another that I bounce things off of.

Not knowing is generally the worst, waiting and wondering, but that is normal and you will get through it.  I am 7 months since dx, and just had my implant exchange.  You really will move through it.  Allow yourself all your feelings.  For me after diagnosis I kicked into survival mode and focused on doing all the things I needed to do to get it out of my body.  My surgery was in November.  In late January, suddenly all the emotions hit, and I had to move through that.

Do your best to be informed, ask questions, and remember you have the right to ask why things are being done to you, or why something isn't being done.

Oh, this was big for me because I'm a single mother with no family around--ask for help, let people know as much as you are comfortable with.  People want to help, and I couldn't have done it without the meals, rides, errands, support, and love my friends, coworkers, and even people I've never met have provided my boys and I.

Check with your HR person about FMLA, you are entitled to 12 weeks of unpaid leave (it saves your job and pays health care) each calendar year.  Also, if you don't have enough vacation/sick leave, see if your company offers donated leave.

One other thing, the Cancer Center in the hospital where I had my surgeries done recommends "Successful Surgery" by Belaruth Napersack.  It is a CD that you can listen to ahead of time. My hospital has a library that it could be checked out from, but I bought one before my second surgery.  I have no statistical evidence that it worked, but there are studies at places like UC Davis where they have found positive results. I was able to use some of the techniques the morning of each surgery and it seemed to be helpful.  Her work, and others, can be found at healthjourneys.org  they also offer a free service that I found helpful when I went back to work.  You can sign up for "breaks" during the day that are positive affirmations about immune system, stress, pain, a ton of things.  I like it because in my job I sit down and don't get up again for 9 hours, it reminds me to take a break.

I hope some of this helps, it is kind of all over the place, but I just wrote as things came to my mind.  I lost my mom to bc, too, so like you, it loomed.

Don't hesitate to PM if you have any other questions.

Best wishes and let us know how you are doing.

Karen

Hi Bettina, sorry you are here.  I had IDC on the left side only, with 3 nodes positive.  I had a bi-lateral mastec. on Sept 24, 2008  I had the surgery on a Thurs. and was back at work the following Wednes.  With my surgery, I had simultaneous reconstruction with implants.  I was 44 and in pretty good shape at the time of surgery.  I am 15 weeks post chemo, completing 6 rounds of TCH.  When you find out what your chemo cocktail will be, find the thread for that particular mix and jump in.  Each mix has it's own set of side effects.

All thru my chemo, I would get very tired, a lot of muscle atrophy and generally feeling like crap, but I continued to work (I am a teacher).  I pushed myself to stay as active as possible and looking back, I am glad I did.  On my good weeks, I continued to trailer my horse to a state park and ride for 6 to 8 miles.

At 15 weeks out, I feel like myself again.  I have gained some weight (yuck)  and I am not as strong as I was, but that all will come back in due time.  I have about 1/4 of hair.

You can do this.  Just remember to be your own advocate, ask a lot of questions, and don't let any medical professional blow you off.  This is your life.

Good luck.  Lisa

Lisa--That is amazing you were able to go back to work so quickly.  My PS wouldn't allow me raise my arms--even the wall crawl for almost 10 weeks, wasn't allowed to carry things, I was pretty restricted.  I couldn't drive my clutch for more than 4 weeks because I couldn't get it into 1st, or reverse! I also was in no shape to deal with work, especially a week after surgery.  You are Wonder Woman!!!!!

Also, Bettina, because of my Mom's history--I've gotten used telling myself all the things Laura mentioned above, but my mantra is "I am not my Mother and my breast cancer is not my Mother's"  I use that when I head down the slippery slope of family history.

Karen

No Karen, I am not Wonder Woman, I am just determined.  I drive a very large truck (4-door F-350 dually).  The first time I drove it was a little uncomfortable.  I did have to stay off my horse for 6 weeks and I was careful about not lifting too much.  When I went back to work, my students would meet me in the parking lot and carry my things in for me.  And I teach adult, vocational education, so I did not have a bunch of kids to deal with, I had adults that helped me out.

Lisa

Hi, Bettina ~ On the question of missed work... I want to try to share a bit of advice on which I think many of us who have been through this will agree.  When you are first diagnosed, the amount of information and questions and research quickly becomes overwhelming.  So it's really helpful if you can learn to focus on the one issue or decision at hand.  I know it's easier said than done, but worrying now about how long you'll need to be off work when you don't even know what doctors you want or which surgery they will recommend or if you will even need chemo or radiation, is putting the cart before the horse.  Focus on finding the best doctors -- ones you really like and trust completely.  Then, after you have a treatment plan in place and know what surgery you're having, you can start to figure out how it will affect your job.  Otherwise, you may be worrying needlessly about things that aren't going to be a factor for you.  Trust me -- this journey can become overwhelming at times, and remembering to focus on the decision at hand can really help. 

Laura ~  As a total aside, how long have you lived in Edgewood?  I'm asking because my DH has some family there.  In fact, one of his aunts was one of the first realtors/r.e. developers in the area.   Small world!   Deanna

Deanna - PM me with your relative's name!  We've been in Edgewood for about 4 years, but my hubby and I are both Albuquerque locals and we know lots of people around here.  Paul manages all the outdoor operations at Sandia Peak Ski Area, so he's pretty well connected (though terrible with names so often doesn't realize he knows people...)

Bettina - you'll be obsessed with cancer for a while.  Warn your husband.  I was diagnosed six weeks ago and this was the first morning that I woke up thinking about something other than cancer (I woke up worrying about work - which was actually a relief!).  Given how our brains are wired for survival, and given that you're facing a life-threatening illness, an obsessive focus is normal.  I laughed when I saw your line about nonstop reading on the computer.... I'm like you - gather info, gather info, think, plan, get more info, change plan, gather info...  my husband is a "step at a time" kind of guy.  I think I drive him nuts.  But it's just a matter of style.  You'll each do things at your own pace, and as long as you recognize that you've each got your own coping style, you'll be fine.  Just be patient with each other.  A cancer diagnosis is a blanket that drapes itself over you, him, your family and friends, and everyone has to deal with it in their own way.  

One word of warning, though:  DO NOT SCARE YOURSELF WITH STATISTICS.  It's easy to jump to conclusions about risk of recurrence, prognosis, and to use this as a crystal ball for your future.  Don't do this.  There are a lot of very good reasons to be skeptical about the numbers you see and to question your own interpretation of those numbers in relation to your own life and outcomes. I'm not just saying this to make you feel better; I've worked with statisticians now for a long time so I've got some professional skepticism about all of this.   For one thing, the treatments are changing so fast that the risk models used to assess recurrence/prognosis are often somewhat out of date.  Secondly, clinical oncology is an elegant and subtle science in which patient characteristics, the quality of care, and socioeconomic factors weigh into outcomes in a not insignificant way. Thirdly, your case really is unique and it'll have its own story.  

Clinical trials, studies and such should be used as a guide to help you make treatment decisions; they're not a map of your future.  You really do have a lot of control over your cancer, even if you feel you don't.  Obsessive reading to better understand what the oncology community knows and what it doesn't know can be a good thing, as long as you're not looking for that crystal ball that will tell you exactly what to do and what will happen if you do it.  Don't jump to conclusions, and stay optimistic and happy about your outcomes. 

Like I said earlier, you're in a FABULOUS geographical area for treatment options.  Check out breastlink.org if you've not already - John Link's book was easily my favorite "bible" for dealing with my diagnosis! 

I think one of the keys to getting thru all this is trying to keep your life as normal as possible.  My biopsy was really rough.  I had a lot of pain and excessive bleeding.  I was still very swollen and sore when I went in for the bi-lat mast.  And then I started chemo less just 4 weeks after the mast.  So all in all, I did not get on a horse for almost three months.  The first ride was after my 2nd tx and I will admit that I was terrified.  By then I had lost a lot of muscle and I was feeling the effects of the 2 tx's.  For the first ride, I took with me a good friend that I knew I could depend on if something went wrong.  After that first ride, I was fine.  My tx's were 3 weeks apart, so I always rode on weeks 2 and 3.  I made sure I stayed in small groups with trusted friends that were willing to just just walk.  I am 15 weeks post chemo today and I am just now feeling like I could safely manage a short canter.

Those of you that have just been diagnosed are facing the roughest 9 months of your life.  Try really hard to not let cancer define or consume you.  This experience will change you, but in a positive way.

You just have keep living your life!

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This was taken just before BC.  I had hair!

This was taken 4 weeks post chemo

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Yes that is a beer in my hand!  And I always share with my horse!  That was a great day!

Lisa