cancer after breast reduction surgery

sjc

Thank you all so very much for your encouragement and support.  I am humbled to be part of this study and am so glad it worked out so well for me to be a part of it.  The clinical research coordinator at the hospital I am going to has been such an amazing professional in that she is so sensitive to the feelings of the cancer patient, before anything that has to do with the trial.  I am honored to be part of this and hope that it helps many breast cancer patients in the future.

 One thing that has struck me since the beginning of my cancer journey, is how very different everyone's story is.  There are no two that are the same.  Treating cancer on an individual basis is what will become the link in better, more successful treatments.  And the TailorX study is a big step in this direction.

I do not know yet which horomone therapy I will be on.  It is up to the doctor in this study.  I will meet with him again next week and let you know which drug it is.  I will also be starting radiation next week.   I will continue to post any information that may be of interest concerning the TailorX study when it becomes available.  I know my coordinator will keep me up to date on things I need to know.  BTW - they are also taking samples of blood and tissue.  I am donating blood to their studies.  Not sure exactly what they are doing with it, but it will become part of their study.  I was unable to donate tissue as there is only one "block" and I was strongly advised to not give that up, but to keep it local in case it is ever needed in the future.  (Boy do you learn alot about stuff you never knew anything about when you get in these situations).

So again, Happy New Year every one!  And here's to a healthier 2010.

cookiegal

I think that is a smart decision about the "block"...ick though I hate that term. You may need some sort of test in the future. I know someone in a bunch of trials and that did become an issue.

Kleenex

I'm totally boggled by the term "block." What does this refer to?

sjc - YAY on your bravery in participating in the study, and I'm so happy for you that you will have your wish and skip chemo and go directly to hormone therapy. I lucked out with an oncotype of 11 (after being unlucky and getting ILC in the first place), so chemo was not even offered. It's such a difficult choice when the possible benefits are relatively low and the side effect damage can be significant. I wish we could "know" the right answer, so I'm grateful to those like you who allow themselves to be randomized for the benefit of future patients.

I'm on board for a healthier 2010! Here, here!

Gitane

Hi Kleenex, I was told that for me the tumor "block" is just the slide that has my core biopsy cells on it embedded in paraffin.  I've seen it; it just looks like three lines (the stuff that they took out with the needle, three different stabs).

sjc

I have not seen my "block", but Gitane described it well.  My sister, who is in the medical field, said it would be important to keep that block at the hospital in case there is some type of advancement in treatment or cure in the next 10 years.  If you didn't have this original block, they would not be able to see if it would benefit you.  So my block is again safely back at the hospital where I am receiving treatment.  (I believe it has to be sent to the place that does the Oncotyping).  Isn't it amazing what you learn when you get thrown into these situations?

Gitane

When my Oncotype test was done the pathologist at my hospital sliced off the necessary tissue from my block and sent that tissue to Genomic.  My block never left the hospital.  Same for my FISH test, I think.

Bless

The way they described it to me is this...after your biopsy they take the tissue and preserve it in a "block" of paraffin (aka wax) Then they slice off tiny slivers on a micro-mini cold-cut slicing type of machine   I swear that was the way my humorous doctor explained it to me.  I could just picture the salami being sliced at the deli counter.  They take each sliver and make a slide out of it and save the "block" in case they need more for additional tests.

Kleenex

Love the image of the little mini cold-cut slicing machine. Wonder who has MY block? It is amazing what we need to learn in this new world. Some days I'm slightly impressed by all that I now know that I didn't know before. And then other days, I'm irritated that I had to learn it at all...

Kathy16

Sue - great news!  Of course, you know we would support whatever decision you felt comfortable with.  Since you are hormone positive, that will be great that there are these treatments for prevention.  Glad you are facing what looks like just a pill and not the chemo.  All the best.

Re: the block, my surgeon said the block is kept in their hospital for at least 7 years - recently I wanted a second opinion and yes, they "sliced" off slides to send to the major med center where I had the opinion. 

Here's hoping our collective 2010 will be a much better year!

sjc

Kathy16 - thanks for the words of support and encouragement.  I am, indeed, very comfortable with my "randomization" through the TailorX study. It is what I had hoped and prayed for.

Did you have the second opinion on the ILC diagnosis?  Have you gotten the results yet?  I can't even imagine being diagnosed twice in one year with BC. That sucks twice!!!!!

 Let us know how you are doing.   Sjc

Kathy16

Got the 2nd opinion, but b/c oncotype was so low it was a no brainer and almost unnecessary second opinion (but you have to book the top guys weeks in advance, so had I been intermediate oncotype, it would have been helpful).  I have a lot to be thankful for in 2010 - no more chemo needed for this one.  We never know the future with this disease, but I'm satisfied I've had state-of-the art treatment to give me good percentage odds of not seeing it again. 

PaulaLS

Had my mast and SNB on left side 1/4/10 - this was following breast reduction surgery for symmetry on the left side on 11/4/09 and that was following a mast with immediate implant on the right side in Feb. 2009, and an incision revision and new implant placement on the right in March, 2009.  Mammo was clear in Nov '09. 

Had to get an expander this time as there was not enough skin left to do the immediate implant.   Path from reduction showed IDC 8mm.  Margin was not clean.  I hadn't realized that the Sentinel node may not "map" or "light up" after a breast reduction so I was fortunate that the node was located and it was clear.  I had refused to have an axillary node dissection (which is what was recommended) if the node didn't map.  Since the cancer was small and the cells were early, I decided to take my chances with leaving all the nodes in rather than having them all removed.

I am feeling pretty good 5 days post-op.  Pain is much less this time around, fortunately.  Hopefully, I will get the path report from the mast next week.

Blessings to you and yours for a happy, healthy 2010!

Gitane

Good grief, Paula.  You have to have a PhD in breast surgery and reconstruction by now!  Hadn't thought about the SNB not mapping after surgery, but it makes sense.  Glad yours did.  May the path report bring good news.  G.

newchapter

Hello all-  I'm a new member to your 'not so private' club.  Hoping someone can assist me with some much needed info and knowledge.  I had a breast reduction on 3/10/10 and learned I had bc on 3/25/10 from my ps.  My appt with the bs and onc is on 4/8.  Of course to me, it seems like that's a long time to wait, but since I'm a new member, perhaps this is standard or very quick - I have no idea.  My path report says Invasive carcinoma in-situ, lobular carcinoma in-situ, atypical lobular hyperplasia, flat epithelial atypia and columnar cell changes and cysts (invasive carcinoma with both invasive lobular carcinoma and mucinous carcinoma components.  

Can someone tell me what this means to a newcomer?  From you lingo above, it's ILC - yes?  What's DCIS?  what's mucinous carcinoma components?  What tests come next?  THX 

balsie

Hi Newchapter~  So sorry you have to join this group, I remember when I was in your shoes.  I found out April 15th 2009 ... I had breast reduction surgery on April 9th.  Your path report sounds very much like mine did. I was told that ILC is very hard to detect and that it is often found by having a surgery.  Mine did not show up on the mamogram that I had not even a month before my reduction surgery, and they say that it often does not show up on a mamogram. Would you like to talk to me?  I would be willing to give you a call and tell you what I went through.  I have been out almost a year from my DX. Private message me with your # and I will give you a call.  I know how you feel and if i could just tell you I was as scared as you are right now....but it will be ok.  You will be ok..research has come so far. 

Take a deep breath and know that you will be ok and that there is a light at the end of the tunnel.  I am almost a year out and coming to the end of my treatment plan.

positively,

Balsie~

sweatyspice

Newchapter - are you sure it says "invasive carcinoma in situ"?  That seems to be a contradiction in terms.  Invasive carcinoma shouldn't be "in situ."  I'm confused, are you sure you typed it correctly?

DCIS is "Ductal Carcinoma in Situ" - is that what's on your path report?

LCIS is Lobular Carcinoma in Situ - that's often not treated surgically.  From what I understand, it's looked at as more of a precancer.  Those cells may develop into cancer or they may not.  It does seem to be looked as an an indication of increased risk for developing cancer, in either breast.

Atypical lobular hyperplasia is a precancerous condition, the cells are abnormal but not so abnormal as to be considered cancer.  It may develop into cancer or it may not.

Flat epithelial atypia - I'm not sure, but it seems like another precancerous change.  I'll defer to someone else who might know more about that one.

Columnar cell changes - seems like more abnormal but not yet cancerous cells.

Are you saying that you have cysts which contain invasive lobular carcinoma and mucinous carcinoma cells?  I didn't know cysts did annoying stuff like that, so if that IS what you mean, again, I'll have to defer to someone else who might know more.

The time frame is fairly normal, don't panic about that.

If you do have an invasive cancer in the stew, that will most likely trump all the precancerous changes and you'll be treated based on the invasive component.

I had DCIS, LCIS and ALH, so those are the parts I know the most about.  None of those are invasive, so I can't help much in that regard.  DCIS is considered the most serious of those three, and it was surgically removed.  My breast apparently still contains LCIS and ALH, which will not be removed - just monitored.  (And I'll take an antihormonal drug, because my DCIS was hormone sensitive - but that's getting a bit ahead of things.)

Best of luck!   

newchapter

Balsie - Thank you so much for offering to talk to me.  I'd like to get to the first meeting with the bs and the oncologist and then I might take you up on your offer.  For now, I'd like to get an understanding of 'invasive carcinoma'.  I had a mammogram last May and just like you, nothing was detected.  Without any other tests thus far and lump, is it more likely that this was caught early or do I have to wait until more tests to really know where I stand in terms of what stage it's at?  What are the typical tests?  Breast MRI, etc?  I want to go into the meeting with a list of tests, questions etc so any help on that is much appreciated.  THX

Sweatyspice- Thanks for the info. OK - in my haste and complete ignorance on the subject, I did type it wrong.  My path says: Invasive carcinoma with infiltrating lobular carcinoma and mucinous carcinoma components.  In the synoptic report it says DCIS is absent.  Whatever you can offer in terms of tests I should expect, etc is much appreciated.  THX

balsie

newchapter~ I was diagnosed with invasive infiltrating lobular carcinoma ER/PR positive Her - 2 negative. have they told you any of those results yet?  Invasive means it has broken into the tissue.  They should be able to tell you what stage you are at.  Ask them for your pathology report.  I did have to have an MRI .  With all the results of mine and after meeting with the ongologist I decided to have a bilateral mastectomy with tissue expanders put in right away.  I did have to have Chemo and I am now on a five year drug called arimidex, it helps to stop the cancer from coming back. Mine was caught early too.   They found this in my right breast but found atypical things going on in the other side .  I just wanted to throw everything at this cancer and get rid of it.  They did also tell me that I may have very well had it all taken out during the breast reduction surgery but then they did a axillary node dissection and came back that 2 of 14 lymph nodes had micro pieces of cancer in them, that is why my oncologist suggested chemo for me.

Did they find cancer in one or both sides?

I remember going into the first meeting being very confused....ask them if you are ER /PR negative or positive and ask them your Her - 2 status.  what size in the tumor.  Ask them if they are doing a axillary node dissection. You want to know if any lymph nodes are involved. Most of all ask for copies of all your reports.  They can send you your pathology report before your next appt.  at least then you can do some research. 

Seriously I did personal message you with my number give a call if you like.  I can probably tell you more than writing it all out.. 

This is a great site to get information from...dig around you will find very helpful ladies here. 

Warmly,

Balsie

Anonymous

     One of my very best freinds was diagnosed just last week with invasive infiltrating lobular carcinoma.  She saw the surgeon again this past Tues and she recommended a few oncologists and told my friend that she most likely will be looking at 4 months of chemo and a double mastectomy since there is a good chance it will show up in the other breast.  Someone on here said theirs was found in a mammogram.  The surgeon told my friend that this type does not show up in mammograms or sonograms and she had been faithful with mammograms and several times had to go for repeats since her gyno kept feeling something he was suspicious of.  Finally he told her she needed to go for a biopsy and that is how they determined it was cancer.  So I am confused....Does it show up in mammograms or not?  The surgeon told her she doesn't see too many of these, that most breast cancers she removes are ductal.  Needless to say, she is a wreck and keeps asking me questions, but since this is different from my cancer and I didn't have chemo until just last year, I can't give her a lot of answers since I am sure she will be getting a different chemo.  I did read that the success rate in curing this type is good.  So you who had lobular carcinoma, are you doing fine?   What was the chemo frequency and type they used on you?  I may tell her to go to the message boards herself later, but right now she is just too overwhelmed with her diagnosis.  They have an 8 yr old and she is worried about what to tell him....doesn't want to scare him with the big C word, but is afraid someone else will say something to him. She is ER,PR+ and borderline on Her2Nu.  She did not say anything about size, but said it is Stage l.  

sjc

I have watched this board faithfully for many months and now unfortunately another has joined us.  I am sad that you have joined us, but joyous that you have found your ILC so early.  My story is documented through this thread, but like you, Newchapter, found out about my ILC after having my much anticipated breast reduction.  I now chuckle when I recall the plastic surgeon referring to my bc as a "serendipitous finding." I had my reduction on 10/22 and the night of 10/26, I got that fateful phone call from the ps, asking is your husband home?  can he come to the phone with you?  When you hear that you know it is never good news.  I too had a mammogram 2 months before my reduction and have faithfully had them for 30+ years.  This stuff is sneaky and hard to find, which is why I thank God every day for my decision to have my breast reduction. 

 At the time of diagnosis you could have knocked me over with a feather.  This wasn't suppose to happen to me.  Well you quickly realize that it has happened and you need to do everything you can and gather all the information you can.  My ps was a wonderful, wonderful help through this.  He saw me 2 days later, first as a followup to my surgery and to also talk a little more.  He immediately referred me to a surgeon who would do the lymph node biopsy and I saw him on 11/3. At this same time I met with a "nurse navigator" from the medical complex that I have had my treatment at.  They are absolute angels.  They helped me setting up appointments, and were willing to talk at any time, especially when you are waiting for results.     I had a breast MRI on both breast to determine if there was any remaining cancer on 11/6 and thankfully it was clean.  The biopsy was 11/25 (had to wait because of reduction surgery).  Waiting for the result was the most stressful, cuz you don't have the answers yet.  Once you know what you are fighting, it is easier.  

So I think your timetable is pretty good, but I would suggest you keep on top of them.  I hope that you are offered the services of nurse navigators.  I am through my radiation and now on hormone therapy but need to get a followup MRI.  The nurse navigator just contacted me this week to help set up the appointment.  They are wonderful.

 Newchapter, you have begun a journey you don't want to take, but know many have traveled before you and you will be fine.  If you have any further questions, please let me know, I too would love to talk with you and offer all the encouragment needed during these darker days.  Trust me.....there is a light at the end of the tunnel, and there are many wonderful sisters here to help you toward the brighter side of this journey.

Please keep us updated and feel free to throw out any more questions or concerns you have.  I will stay tuned.

  

sweatyspice

Newchapter -

Just wanted to say that after reading your update, I know you'll get better info from others than I can give you.  I (very luckily) didn't yet have invasive disease, so although I needed surgery and am still looking forward to radiation and drugs, my treatment was/is very different and my experience and areas of knowledge won't be that helpful to you.

I'll defer to the ladies who have walked a similar path to yours, knowing you're in good hands. 

Exploring

Hi, I don't know if others are still posting on this topic. I was diagnosed with ILC in my left breast after breast reduction. Had a mastectomy 2 weeks later, 6 wks ago. Have had much good news in this. Due to the cancer diagnosis as a result of surgery, had to have axillary node dissection, and fortunately all nodes were clear. All markers have been good and I have been placed on hormone suppressant therapy for the next 5 years. 2 questions, my oncologist states that research doesn't support having MRI's rather than mammograms for my remaining breast, yet I had a clear mammogram 7 months prior to surgery, so if I don't have MRI's won't I be at high risk of this going undetected if it occurs in my right breast? Secondly, I asked my surgeon who did the reduction if cells can be transferred from one breast to the other during the reduction and he affirmed they can be. Does this mean the cancer cells could have been transferred to the breast that did not receive the diagnosis during the pathology report? Thanks for any info.

Moderators

Hi Exploring, and welcome! You have joined a group of kind and knowledgeable individuals here at BCO.

As you noticed this thread has not been active since 2010 and that may impact your receiving responses. If you want, you can start your own topic under this same forum and post your question. It's easy, you have to click on the title of the ILC (Invasive Lobular Carcinoma) Forum (this forum where we are now). Then, click the "Start a new Topic" button, add your title, write your post and when you are ready to post your new Topic, click "Submit".

We hope this helps! Let us know how your doing.

The Mods