2011 Sisters

blondelawyer

Twohobbies:  thanks for your insight.  I am sorry to hear about your son's chronic illness.  I know how difficult they can be deal with--obviously from the perspective of a spouse, but I've seen how hard it was on my mother-in-law.  My husband had cystic fibrosis.

 Tina and LifeLover:  Thanks for sharing your experiences.  

There is so much to consider and it really is kind of scary to hear all of the stories about people thinking that it was one thing and then when they have surgery they find out that there is much more.  Right now nothing else is showing up on the MRIs in either breasts, but all of this uncertainty makes me crazy with anxiety.

Also and this is vain on my part...but I truly do hate my large breasts.  I am a DD and they just get in the way of everything and cause back and shoulder pain.  So at the very least, I am hoping that I can get some reduction of both breasts along with a lumpectomy if that is the way I go.  Is that totally inappropriate on my part?  I guess I see it as if I have to go through this, I might has well have some advantage.  I would have eventually had a reduction I am sure, but this way insurance will pay and it will be part of a surgery that I am going to have to have any way, regardless of whether it is a lumpectomy or mastectomy.  I know that the reconstruction can be very difficult, but I'm here through no choice of my own and would rather come out feeling good about my body rather than disfigured and still having probably with the girls being too big. 

lifelover

Blondelawyer:  it isn't inappropriate at all to want smaller breasts.  A good friend of mine had a bilateral last year and also had a breast reduction at the same time.  She is so happy with her new breasts now.

mammalou

I'm going for a reduction also and looking forward to it.  Big breasts are over rated!

TwoHobbies

Blondelawyer, I felt a little weird at first wanting bilateral.  In fact I asked the surgeon if insurance will pay for it.  Mine was totally based on emotional response, not just based on the medical side.  When I got "here" I was relieved so many other women had chosen that too.  I didn't feel like such a freak.  That being said, I know women who have done lumpectomy, bilateral, a woman who opted for unilateral with lift and reduction on the other side, and I even know one who did unliateral with no reconstruction.  The point is, beyond the medical decision, it is up to you and its OK to choose something you may see as more advantageous.  If your surgeon is guiding you down one path without giving you the other options, speak up.. 

blondelawyer

Thanks for the encouragement.  I think that my BS will be support of my decisions and honestly if not, I'll go somewhere else in a heart beat! I am already considering a second opinion at the other big breast cancer center in town (luckily we have a lot of options in Seattle).  And then of course, there will be the look for a plastic surgeon.  And, there is a chance that the chemo won't shrink this thing enough to make a lumpectomy an option anyway.  

 How soon do you think that I should start really hounding the BSs?  I did 3 rounds of taxol and my tumor continued to grow, so we stopped that and I started AC yesterday.  We will either do 4 or 6 DD treatments and then probably another one.  My medical oncologist has been great and up front with my about the surgery stuff including second opinions, so I will probably ask him when he thinks that I should start really seeing the docs and making the decisions.

 Thanks for all of the support ladies!  You make me feel better about wanting to end up with nice boobs at the end of this! 

Jamie30

Hi.  My name is Jamie.  I was diagnosed on April 11 2011 with multifocal invasice ductal carcinoma stage 2 grade 2 ER/PR+ Her2-.  I had my BMX on May 26 2011 and started TE reconstruction. I have had one fill so far.  I am waiting on my oncotype test to come back in order to help with the chemo question because they found a .28mm in one lymphnode.  This has been a really rough journey so far.  I am 30 years old and have three boys ages 7, 10, and 12.  I have a wonderful hubby that has helped me more than words can explain.  I am really nervous about the unknown in the future and I am so glad to have found a place that people understand.

blondelawyer

Hi Jamie30:  Sorry that you are here, but glad that you found the group.  I was diagnosed only 2 days after you.  I'm doing chemo first because of the size of my tumor and my triple negative status.  I understand how emotional and difficult this road can be.  I hope that you find support and help here!

 Take care,

 Lisa 

Cathy_C

Hello like so many others this is my first time posting. But believe me I have been doing a lot of reading. My story is: I am 42 and I found the lump two days after my "normal" mammo. I was diagnosed on 5/13/11 with IDC, stage 1 (17mm), grade 3, Her2+. I choose a lumpectomy which was performed yesterday with two nodes removed. The surgeon told my husband the nodes were soft, could that be a good thing? Now I am playing the waiting game, with a lot of anxiety. I will have the results early next week and meet with the oncologist on the 27th. It appears that with grade 3 that chemo is the best route and I am sure like many others that was the one thing I did not want to have to do. But I guess I should be patient and let the specialist tell me the facts.   

TwoHobbies

Welcome Jamie and CathyC:  Jamie I'm sorry you have cancer at such a young age, but I wanted to let you know my cousin had cancer at 34 and is now 20+ years cancer free!  No recurrance ever.  Cathy I think having a "soft" lymph node is good, and I think she was saying she didn't think it had spread to the lymph nodes.  It's too bad they forget to translate for us, especially when our brains are worried and scrambled. 

lab44

Hi:

I'm new to 2011 Sisters forum. I just scheduled my BMX with TE's for next Thurs, June 30th. Now that the procedure is scheduled/more concrete, I am very stressed about it. I have DCIS and LCIS, have had 2 lumpectomies in 1 breast and my margins are still not clear.

Would love to hear from any of you that have already had your procedure done - what advice can you give me.

Many, many thanks! 

dogeyed

Lab,

I'm jumping in because I need to talk to somebody.  But I shall try to answer your question.  I have IDC and I had chemo before surgery, been having chemo since Feb, and my surgery one one breast is towards end of July, mastectomy.  I can tell you this, I wanted SO BAD for the docs to do my surgery first, before chemo, I hated that the cancer was in there and the protocol for me is to chemo it first and then remove breast.  So, if you'll look at it that way, that when the lumpectomy didn't work right, at least you'll get ridding yourself of cancer!  That is a huge plus in my book!

I am very nervous today, hoped someone would be in one of my forums I go to, this was only one with a recent post.  I have three chemos left, and normally you just go in and get it done and out you go.  But they called yesterday and want to stick in a pre-chemo normal doc type visit whre they take blood, examine you, an so forth.  But I feel worse and worse with side effects the longer all this goes on, and I DON'T WANT TO GO.  But I have to.  so, that's my issue.

I'm sorry the lumpectomy didn't work.  Are you going to get reconstruction?  I have decided not to, I'm 60 years old, so I guess it doesn't matter to me, plus I don't want to have to go back to hospital several times to get surgery again and again.  I do hear one piece of advice is that you will have trouble with the arm that is operated on that side, so have things ready in your house to get to stuff easily.  Of course, if I read your post correctly, you'll have both removed, so help is essential for a few days.  Recliners seem to be the chair of choice.  I've also heard you cannot get your medicine bottles open, stuff like that, so I'm going to open enough for three days before I go to hospital.

GG

dogeyed

Just jumping back in again, I am going to let this forum go for the day.  I will managed with my nerves over the change in my schedule and somehow get through it.  Maybe I'll go in my pajamas!  Ha!  Lab, I'm sure others here will jump in eventually and provide better advice than I have.  You could also visit another forum relating to surgery.  GG

baseballmom

I am newly diagnosed as of June 9, 2011.  I've been under close watch for about 6 years because of dense breasts.  3 years ago they all but said I had cancer, luckily then the lab said no.  However, it got me to thinking, so before my diagnoses it was already decided that I was going to have a BLMX.  I was tired of the MRIs, Mammos, biopsies, worry, etc.. all that stuff.  I was done with it.

blondelaywer - your comment about wanting reduction is ultimately why I decided on the BLMX.  Survival rates are no different but I cannot stand my B and C cup boobs.  And yes, they are that different and they are lumpy.  If anything I'm going to get a great new rack!!!!

 I felt like I didn't have a right to decide on a BLMX based on the fact that I could have a lumpectomy.  But the bottom line is, It's Our Choice.  It's a personal choice.  I'm not scheduled for surgery yet and the thought scares me to death but then I think of what I will look like a year from now....that keeps me going.

TinaT

lab44:  Hello and welcome!  Of course, when we don't know what to expect we usually expect the worst, right?  None of it is fun or easy, but many of us find that the beginning is the toughest part.  It does get a bit easier once you are on your way.

I had nipple-sparing BMX with TE placement in February and I'm currently undergoing expansions.  Things have gone slowly for me due to some healing problems, but I'm finally back to focusing on reconstruction.

Are you stressed about the cancer, the surgery, the reconstruction, or all of the above?   Anything in particular you have questions about?  Are you having nipple-sparing surgery or is that not an option for you?  Do you have access to a Breast Cancer Navigator in your health system?

If I can answer any specific questions I'll do my best or I can at least perhaps guide you to some other threads here.

Best wishes! 

lab44

GG:

Sorry to hear what you are going thru.I've heard how tough chemo can be but stay strong, it sounds like you are almost at the end of it. The more positive you can be, the easier it is. I know you will still have some after effects from it but will be feeling better in the near future.

I will thankfully have help when I get home between my DH, my mom, & my sister for my 18 mos old twins and me. But know it will be painful and uncomfortable, and having to deal with the guilt that I can't pick up my children. They've been great at understanding my limitations during my lumpectomies but this healing time is a lot longer.

Since I'm in my early 40's, I have decided to have immediate reconstruction w/TE's. And know it will be many, many months until the entire process is done. I'm trying to be as positive as possible, setting this as a time to get rid of "bad habits" and when I can be as healthy as possible.

Best of luck with your upcoming treatments, tests, and surgery.

lab44

Tina T.

I'm stressed about the surgery - BMX and reconstruction with TE's. I, unfortunately, cannot have a nipple sparing mastectomy.

• How I'm going to feel about how I look right after surgery
• the pain level
• healing quickly to get back on my feet asap since I have toddlers

I've spoken with a nurse navigator but am finding that if the person only knows info from the medical side of things and has not personally experienced what we go thru, the info I hear is missing something tangible that I'm seeking.

Merlinda

So my Oncotype DX results came back today and I scored a 35.  Doc says I need chemo, radiation and anti-hormonals.  First chemo is in two weeks, I am really scared and not looking forward to this at all.  Is anybody listening?  My first post went without comment or notice.

TinaT

lab44: I was stressed about the surgery prior to as well; I'm sure 99% of us are so that's pretty normal!  Everyone seems to have a different experience.  I'm sorry you aren't a candidate for nipple-sparing surgery.  I'm glad you at least were informed; seems there are still lots of women out there who don't find out about it until after their MX.

Because I woke up with my nipples and partially filled TEs I did very well after my surgery.  However, from what I read from others who had to lose their nipples even having those TEs partially expanded should go a very long way to help in dealing with the change in your body.  I'm not saying it's easy, but each step along the way for me has been easier than I anticipated.

You will also have drains; I had two, but some have four.  I think that depend on your surgeon, your breast size, etc.  The drains are definitely a pain in the butt and can be uncomfortable.  One of mine was not painful at all, the other was very sensitive at the exit spot, like it was close to a nerve.  I purchased a velcro belt with stick-on drain pockets from TLC and it worked great.  

My incisions healed quickly.  For me, the TEs were more of a pain issue than the incisions.  I had quite a bit of fluid (350cc) put in at surgery.  It felt like someone wrapped my chest in duct tape while I was slumped over, making it hard to take in a good breath or to stand up straight.  I slept in a recliner for about a week, then on the couch for another week or so with my legs propped up on pillow.  The narrowness of the couch seemed to make it easier to get up and down without using my arms.  I did stay on top of the pain with the pain meds so I never was in great pain. 

If you were having a mastectomy without immediate reconstruction your healing time would be easier.  Each plastic surgeon seems to have different rules, but typically you are pretty restricted until the drains come out (1-3 weeks), then you will be limited in how much you can reach, lift, etc.  Lifting restriction is usually 5 pounds.  I was told I could drive when I was off pain meds and when I felt I could react quickly so that took a while.

Please expect there to be bumps in the road.  It rarely goes according to plan.  If you try to push too hard or rush it you're more apt to undo some healing and set yourself back.  It must be so hard with two little ones.  I've heard others say that if they just need to be reminded that "mommy has an owie" if they understand what that means. 

Drink lots of water, take walks when you can, and eat lots of protein and other good foods to help the healing.

Both of the breast navigators that I deal with have gone through all of this so they really do understand what I've been going through.

In case you haven't already checked these threads out you might find them helpful.  One is a tissue expanders thread (very active) and the other is a June 2011 Mastectomy thread.  It seems especially helpful to chat with others going through it all at the same time so each month has its own thread.

http://community.breastcancer.org/forum/91/topic/768908?page=8#post_2465935
http://community.breastcancer.org/forum/44/topic/760476?page=66#idx_1956

Best of luck!  Sorry for the very lengthy entry, but you sound hungry for any info you can get.

TinaT

Merlinda:  Welcome!  Sorry you didn't get a response to your first post.  You're having radiation so you had or are going to have a lumpectomy???  Looks like your Oncotype DX is definitely in the chemo range.  My score was at the lower limit of the intermediate range, but I've decided that 2% increase in protection over hormonal tx alone isn't enough to convince me to do it.

I have read posts from many women going through chemo who report that it's not a walk in the park, but it has definitely improved over years past.  I'm sorry I can't help you with any specific questions about chemo or radiation.  There are threads on those topics as well as hormone therapy so perhaps you can find more specific answers there.

Hang in there!!!

chrissyb

Merlinda, I don't usually post here as I am way further down the track but I do read and I have noticed your plea.  I am sorry that you need to have chemo and even though it's a difficult thing to go through, you will manage to do it with help from your family, friends and people here on the boards.  One very good tip I can give you is make sure you drink a huge amount of water before, during and after your infusions.  This helps to flush your system of the toxins and so can help to reduce the side effects.  Also, if you can manage it, eat a good amount of protien as it helps the liver repair from the damage from the chemo.  If you would like to PM me, feel free.

Love n hugs.  Chrissy

Merlinda

Chrissyb, I had a lumpectomy on 16 May, had to go back under the knife a week later to get cleaner margin.  Today is 24 June and I am still not in treatment.  Pins and needles is the only way I can describe the feeling I have waiting on test result after test result.  I begin chemo on 7 July.  I do have another question for anyone who wants to chime in, what is the "norm" for the amount of time begin the final chemo treatment and the onset of Radiation therapy? 

Thank you for your reply.

Merlinda

got to get thru this!

Merlinda

TinaT, I have already had a lumpectomy.  BEgining chemo on 7 July.  Thanks you for the reply

TinaT

Merlinda:  From diagnosis in December 2010 to my surgery in February my husband and I had a daily routine.  I would say, "I don't want to do this..." and he would give me a big hug and say, "...but you have to!"  After my surgery I would say, "Everything's gonna be OK, right?" and he'd respond, "Everything is already OK!"

We all have had days when it just seems impossible that we're actually going through this.  Some days are harder than others, but overall it has gotten better and easier for me even though I went through a very rough stretch of over 3 months where I wasn't healing.  It does get better.

You can do this!!!

Huskerkkc

Merlinda, I finished chemo June 3 and will start rads in July. You need at least 3-4 weeks for chemo to get out of system. I had my lumpectomy Feb 3 and didn't start chemo til March 17. A LOT of hurry up and wait.

chrissyb

Merlinda, the 'usual' time between end of chemo and beginning of rads is as Kristy said, 3-4 weeks but, it can be longer than that.  It depends on how well you bounce back after chemo and for some it may take a little longer.  Please don't stress yourself with all the waiting as it will make no difference to your final outcome it's just a bit of a pain while you are doing it.  Good luck with everything and I hope the chemo treats you gently.

Love n hugs.  Chrissy

LovesChristmas-Barb

I would like to join you ladies if I may. I'm 53 years old, married to my wonderful husband for almost 33 years and have 3 beautiful children through the miracle of adoption. I'm also a homeschooling mom. This coming schoolyear will be year 18 and my final year....my baby is going to be a senior in high school.

I had a lumpectomy and SNB on May 16th. My oncotype was 10 so I get to skip chemo and I start rads on Monday. I should be all finished with those just in time to start school...great timing. I also need to make a decision about the hormonal stuff. I've been reading and reading and reading some more....too many decisions!

TinaT

Barb58:  Welcome to the Class of 2011  !  So many decisions to make, but sounds like your basic plan is in place and you're on your way.  There are threads for Tamoxifen and Arimidex, etc. which might be helpful.  There is a Search function at the upper right of the screen to help you find them.

I had bilateral nipple sparing surgery in February and am in the midst of reconstruction.  No chemo or radiation for me, but I just started Arimidex in April.  So far, so good on that front.

Hope rads go smoothly for you.  Keep us posted!

vickilf

I'm a 62 year old, I was dianosed on June 15, IDC, I don't know much more then this. I will have a lumpectomy July 5, doc says it looks small and hasn't gone into ducts, but not sure until lumpectomy. I was also diagnosed with CLL chronic lymphocytic leukemia last yr. on March 3, 2010. I still haven't gotten use to having that cancer yet and now another cancer.  I keep saying pinch me, so I can wake up.  I'm sure we all feel that way.

In 1995 I was put on cholestrol medication for 7 long yrs, told I was going to have a heart attack or stroke, needed to be on them. Despite  getting that rare but serious side effect they say a few people get, I got just about every side effect from the Mevacor, Zocor and Lipitor including the muscle, tendon breakdown, nerve damage, severe breathing problems, high blood pressure, diabetic type 2..... and now two cancers, and the side-effects do not go away like they say.. This forum has already helped me a lot, with a lot of questions I had.

I felt a lump months ago, doc told me to go home nothing there, relax and quit worring, your fine. Sent myself for a mommogram, then had to come back, something odd, was told no cancer. I pushed for another mammogram 6 months later, and then needed a biopsy. Glad I pushed or it would have been another yr. before the next mammogram.  They all made me feel like nothing was wrong except the last doctor who gave me a biopsy

 Nice to meet everyone, but like the rest of u wish I wasn't here.

Vicki

I

TinaT

vickilf:  Hi!  Sorry you've had such a rough road these past few years.  Glad you listened to your body and got a jump on things.  Same for me - pushed for an MRI because of dense tissue and useless mammograms and found my 2 cancers early.  Hope it's the same for you.

Sending you positive vibes for the best possible results on July 5!!!

LovesChristmas-Barb

Thank you for the welcome TinaTand welcome to you Vickilf. I'm sorry to hear that things have been so bad for you Vicki. I'll be thinking of you on Tuesday and saying a prayer for you. My lumpectomy went much smoother than I expected...hopefully, yours will too.

On my third day of rads...so far so good but I know it's early.