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Topic: Just Diagnosed, Trying to Understand...

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Mar 3, 2008 07:05AM

Sheri14 wrote:

Hello, my name is Lisa and I have a little different situation because I am here for my friend Sheri. Sheri is a bit nervous to jump into this support group. Sheri was diagnosed one week ago with ILC. She is still very shocked and scared. She asked me to facilitate this message board for her as she is afraid she would not know how to do it. ( I am also wondering if she wants me to be a filter for anything she is not ready to hear.) I hope this will be ok for everyone.

I have a copy of her pathology report and from doing as much research as I have done to this point, I will list out what we know. I apologize in advance if I do not understand some things properly yet.

HER2 Gene amplified (4.3)

The HER2/CEP17 ratio is 2.9 (not sure what this is at all)

She is a nuclear grade 3 (is this the same as Stage 3?)

The tumor is 5+cm

Estrogen Receptor: Negative

Progesterone Receptor: Negative

(From what she understands this rules out tomoxafin as a treatment)

They have tested one lymph and it was negative but it is not the one they want to test, they can not get to the one they want to see without surgery.

She is scheduled for a mastectomy and reconstruction April 2, chemo and radiation are in the plans. Chemo may start before surgery.

I apologize if I mispelled anything, this is all new to me. Sheri has been to the doctors by herself (divorced) and I am hoping she is understanding everything, but I will be going with her now to at least give her another set of ears. Can anyone decifer any of her findings for me? I know once Sheri sits with me and sees how easy this board is, she will take over for me here, but in the mean time I will print out every response for her and give it to her.

Thank you very much in advance for all of your advise

Lisa & Sheri

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Mar 3, 2008 10:54AM MinAZ wrote:

Lisa and Sheri -

I'm a BC survivor, but am keeping an eye on this topic for my friend who has just been diagnosed. She'll have surgery later but starts chemo today - tomorrow is her birthday  ;-(   I can't explain everything in your report as it's quite different from mine, but I do know that nuclear grade is not the same as stage. I'm sure some of the more knowledgeable ladies will give you more information soon. There is information elsewhere here about the pathology report, so maybe that would be useful as background information: http://www.breastcancer.org/symptoms/path_report/index.jsp

Best of luck to you, Lisa - and thanks for being such a good friend to one of 'us', Sheri!

Minz 

Dx 10/15/2006, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Mar 3, 2008 11:37AM - edited Mar 3, 2008 11:37AM by nash

Hi, Sheri and Minz. First off, let me say that you both are a phenomenal--your respective friends are both very fortunate to have you.

Sheri, regarding Lisa's path report--from her hormone and HER2 receptors, first off, it sounds like she has a very unusual presentation of ILC. ILC tumors are generally ER+/PR+ HER2-. Occasionally they are triple positive or triple negative, but this is the first one I've heard of that's ER-/PR- HER2+.

Second, yes, since she is ER-/PR-, she cannot take hormonal therapy like Tamoxifen or armotase inhibitors like Faslodex or Arimidex. The tumor is not hormone driven.

Since she is HER2 +, she will be put on Herceptin, which is a targeted therapy specifically designed to block the HER2 protein overexpression.

Grade 3 is different that stage. There are 3 grades of tumor, with grade 3 being the most aggressive.

So, the bad news is that she has a large tumor, high grade, hormone negative, HER2 positive. The good news is that the very aggressive tumors respond the best to chemo.

After surgery, she can be staged. Her lymph node status will be important. If she decides on chemo before surgery, it will be difficult to know what her lymph node status truly was going into all this. Something to consider when considering the neoadjuvant chemo route. I would encourage her to get several medical opinions before proceding.

I would also suggest you also check out www.her2support.org. My late mother was HER2 positive, and everything I learned about her disease I learned from that site.

Then I was diagnosed, and proceded to learn everything  I needed to know about my disease from this site. The women here are fantastic. I hope that Sheri decides to join us, if nothing else just to read the posts. That's the beauty of this site--one can participate as much or as little as one wants. Sometimes just lurking is all one needs.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Mar 3, 2008 05:43PM Sheri14 wrote:

Thank you Nash, I will check out that site. I am also confused about her diagnosis of the cancer type. The doc told her ILC, but the pathology report says IDC. The doc even circled the lobules in a little pamphlet for her, so I am not sure which one it is now. Sheri is sure what the doc said is correct but I do not know why it would be different on the pathology report.

Thanks again

Minz, Thanks for the help also, I did read over that section and it did help. Good luck to your friend.

Lisa

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Mar 3, 2008 06:04PM nash wrote:

Lisa, my guess is that the onc mispoke about the ILC, just based on her receptors. As far as treatment goes, it won't matter if it's ILC or IDC--she'll be on chemo and Herceptin. But personally I like to know exactly what my diagnosis is, and I would press to get the discrepancy cleared up.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Mar 3, 2008 06:40PM Sheri14 wrote:

Will do Nash, thanks

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Mar 3, 2008 07:16PM LauraGTO wrote:

Lisa & Sheri - I wish you the very best...keep us posted and we'll help you throug this. Hang in there.

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Mar 3, 2008 11:51PM Gitane wrote:

Hi Sheri and Lisa,
You have come to a great place for info. These ladies know a lot and are the best about helping and sharing. I agree with those who've already said so, this doesn't sound like a lobular, it sounds more like ductal, so it would be important to clear that up. You could actually call the pathologist and ask for them to check for you just to be sure. I also recommend asking about having a sentinel node biopsy, a smaller surgery to look at the lymph nodes, before you begin chemotherapy. Other opinions are very important, as are the staging tests before chemo like MRI, PET/CT scans, etc. The surgeon(s) and/or oncologist(s) you may talk to can tell you more about all this. It looks like you are planning well and asking questions, that's important. It's good that you are working together on this. It helps to have someone else listening.

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Mar 4, 2008 07:41AM Sheri14 wrote:

Thanks Gitane,

She has has one lymph biopsy (under the arm) this was negative. They told her they want to test the lymphs around the tumor but I think this has to wait until surgery, if I understand correctly.

Lisa

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Mar 4, 2008 08:12AM Sheri14 wrote:

I just got off the phone with Sheri, she just talked to the doc and they are scheduling the sentinel node biopsy as we speak. Hopefully it will be next week. The waiting stinks. They will decide on the chemo before or after surgery after this biopsy. It was weird reading all of the comments and then hearing it happen right after you have all said it. Thank you for the information we can't tell you how much it means to us. I read Sheri all of the comments so far and she is so gratefull to all of you and looks forward to continuing. I talked to her again about the diagnosis and she said she definitely could be wrong on the ductal vs. lobal. I think the doc gave her so much info at one time she may have mixed it up. Since this is a board for ILC should we switch? or does anyone mind us hanging out here? I guess I could go to both as well. Let me know.

Lisa & Sheri

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Mar 4, 2008 08:19AM LauraGTO wrote:

It could be IDC with lobular features or it could be ILC with ductal features...perhaps that's the cause of the confusion.
With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Mar 4, 2008 08:50AM nash wrote:

Good point on the mixed features, Laura. And Gitane's right, it's very important for Sheri to have her scans before chemo.

And even if it's straight IDC, of course you girls can still hang out with us! Smile There is also a board here for HER2+ which would be helpful, as well as an IDC board, a surgery board and a reconstruction board, just to name a few. You can just wander around the boards and post wherever you like. Everyone here is wonderful.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Mar 4, 2008 11:01PM Gitane wrote:

Lisa and Sheri,
Just a thought I want to share. If you can get your PET scan before the sentinel node biopsy, and the MRI, too, for that matter, they will also give you information about the lymph node status before the surgery messes things up in the under arm area. It just helps to not have anything confusing the issue on the scans.

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Mar 6, 2008 06:43PM LauraGTO wrote:

Just wanted to pop in and say: Hope all is on track and you have a plan in motion...best wishes to you!

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Mar 11, 2008 06:51PM LauraGTO wrote:

Of course you can stay here if you want!

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Mar 12, 2008 09:59AM Sheri14 wrote:

Hi everyone,

I just got home from Sheri's Sentinel Node Biopsy. The surgery went well. The surgeon said they took 2 nodes and they both look good. They were good size and looked healthy. They will not have all the results until next week but it looks good now. I would assume, and correct me if I am wrong, the surgeon would not talk like that unless she is pretty certain. We feel really good about this news. I told Sheri, this was the big one, we know about the tumor, what we didn't know was how far it had spread. Now we have a good idea and can get going on the tumor. I hope I am right about this part. She has 2 appts on Tuesday, the first with the surgeon for post op check and then with the oncologist to plan the future. Any comments would be appreciated, we feel really good right now but I don't want to jump the gun if I should be worried about other things going wrong.

Lisa & Sheri

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Mar 12, 2008 10:14AM wallycat wrote:

I would stay cautiously optimistic as visual looking is not the same as a pathology report.

My doctor looked at my breast MRI before going in for the biopsy and said NO WAY this could be cancer....and here I am.  We just don't know anything for sure till it is on a path report.

Having said that, many docs ARE good at looking and telling and I hope in this case, that is so.

I would encourage your friend to get an oncotypeDX (exam of the tumor) to determine chemo status, etc.

All this finding out stuff is very hard to wait for, but necessary.

I wish you both well!! 

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Mar 12, 2008 10:30AM Sheri14 wrote:

Thank you, we will remain cautiously optimistic. I am not sure what tests they will be running so I will ask about the oncotypeDX. I know they are waiting for the results to start chemo. I will write down the name of the test and ask on Tuesday.

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Mar 12, 2008 10:40AM jpann39 wrote:

Sheri

Im not sure they can do the oncotypedx test for your friend...my understanding of that is the tumor needs to be er/pr+....but most certainly keep it on your list of ???'s to ask the onco at the next appt.....

Best wishes to you and your friend.

Hugs

Jule

PS-you are a wonderful friend!!!! she is very fortunate to have you....

'Gain strength by the positive and don't be sapped by the negative" Dx 11/4/2006, IDC, 2cm, Stage II, Grade 1, 0/9 nodes, ER+/PR+, HER2-
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Mar 12, 2008 01:55PM nash wrote:

Jule is right--you need to be hormone positive to have Oncotype Dx done.

With a 5+ cm grade 3 tumor, hormone neg, HER2 positive, I can't imagine the onc not recommending chemo (and Herceptin) regardless of lymph node status.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Mar 12, 2008 05:03PM Sheri14 wrote:

Nash you are right about the Chemo, we know this is the plan. I believe Tuesday's appointment is where we will learn the starting date. Chemo is starting before the masectomy we do know that. I am going to ask obout the Herceptin, but I am pretty sure it will be part of the plan.

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Mar 12, 2008 06:23PM LauraGTO wrote:

Lisa & Sherri - Don't want to burst your bubble...but...during my Mast. the surgeon looked at my Sent Lymph Node...went out to the visitors surgical room...and told my dh and my Mom that it looked "clean". They both jumped for joy. THEN...3 DAYS later...she called and said that the path came in that one of my nodes was positive! We were truly devastated at the time. But now...based on what I know now...1 node positive isn't that bad. At the time...we thought that EVEN 1 node positive was a death sentence...So....just remember...there's many sides to this dx...and in time, nothing will surprise you. Hang in there....I wish you the very best...

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Mar 12, 2008 07:03PM nash wrote:

Lisa, that's right, you had mentioned neo-adjuvant chemo. I remember now. Anyhow, I wanted to say that it sounds like Sheri's team is totally on the ball--it's great that they did the SNB before the neoadjuvant chemo so they could get a better handle on staging. That wasn't offered as an option to me when I had the neoadjuvant vs. adjuvant chemo discussion.

Sheri absolutely needs Herceptin. I'm sure they will suggest that.

And don't worry too much one way or the other about the nodes. Many women with positive nodes go on to never get mets, and some women with negative nodes end up with mets, so it's a bit of a crap shoot, and it's best not to hang one's hat on any one prognositic indicator.

Good luck on Tuesday, and keep us posted. 

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Mar 18, 2008 05:43PM - edited Mar 18, 2008 05:45PM by Sheri14

Hi everyone! I just wanted to report that Sheri's Sentinal Node is CLEAN! Great news, she is very happy about this one. We met with the surgeon and the oncologist today and found out the course of action. I was also able to clear up a few matters that Sheri was unclear of. She definately has IDC, the tumor is 4.7cm and she is stage 2. She is going to complete chemo prior to surgery. It will be 16 weeks total. One treatment every other week. 2 medications with the first set of 4 treatments and another 2 added to the last 4 treatments. The gene test she had is not back yet, this tested BRC 1 or 2. I am unclear about this test because I have not done any research yet, but this test if positive will definately demand a bi-lateral mas. if negative she has a choice, but with the type of cancer the choice is still pretty clear to us anyway, she will still go bi-lateral. Radiation will be determined through the results of the chemo treatments. The oncologist seems to think they will have to do it, but cannot say for sure yet. If radiation is to follow surgery, they will wait for reconstruction until after it is done, so she will have 2 surgeries instead of one. The drugs involved in her chemo are: Doxorubicin (Adriamyein or Rubex), Cyclophosphamide (CTX), Paclitaxel, Herceptin. He said 4 drugs total, he wrote on the info sheets Doxorubicin is in the first 4 doses and Paclitaxel is in the second 4 doses, but I am not sure which other drugs are involved in which treatments. Any info from anyone would be appreciated. I think I will hop over to some of the other boards and read up on what I can find as well.

Thanks!

Lisa & Sheri

P.S. Sheri is reading every post and just loves all of you!

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Mar 18, 2008 06:21PM LauraGTO wrote:

Lisa & Sheri - You have a plan of attack! All good warriors do! You are taking some more steps through this chapter...but don't loose sight of the next chapter...it will be a much better one. Based on the size of her tumor...it's awesome that there's no node involvement ...and if she's having Herceptin...the her2neu status is probably positive. Herceptin works wonders. I have read many posts by girls who have had great results with neo-adjuvent chemo. Perhaps you should check into the chemo forum... you can communicate with girls who are all going through it at the same time: side effects, moans, groans, questions, etc.

Best wishes to you! You will do fine...remember fight makes right!

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Mar 18, 2008 07:04PM nash wrote:

Hello, ladies. Good news on the nodes!

RE: chemo. The shorthand on the chemo boards for Sheri's chemo will be DD (dose dense) ACx4, followed by 4 Taxol with Herceptin. The Herceptin won't be given with the AC rounds b/c of the potential heart toxicity of the Adriamycin and Herceptin, but once it's started, it's usually given for a year.

Definately post on the chemo boards, but with the AC, Sheri can expect nausea and hair loss, and with the Taxol, bone aches and neuropathy (as general rules). Herceptin is usually well tolerated--mainly headaches and allergy type rhinitis symptoms (my mom used to call it "Herceptin schnoz")

RE: BRCA1 and BRCA2 testing--these BRCA genes are considered the most common "breast cancer" genetic mutations, although if one carries them, one is at risk for other primary cancers, most notably ovarian (BRCA1). There is tons of info on this on-line, but don't worry too much about it unless she comes back positive for a mutation. Only a small fraction of bc are BRCA bc.  

RE: radiation and reconstruction. It might be worth meeting with a PS now, b/c reconstruction options may be limited by radiation. Many PS won't put implants and expanders in on a radiated side b/c of the high fail rate with radiated skin. Worth some consideration and deliberation now, so there are no surprises later. Reconstruction is very involved--there are a lot of gals over on the reconstruction board who are more knowledgable than I on the subject, so you might want to check in with them over there, too.

Glad Sheri has a game plan! Hugs to both of you. 

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Mar 18, 2008 07:25PM Sheri14 wrote:

Nash, Thanks for the lingo. I would have never figured that out. I am not sure if she has met with a PS or not. I will ask. I know that she is planning on using her own tissue from her belly. The doc said non of this can be done until after radiation, if necessary. Does this differ from implants or expanders? I will check the other board as well, thank you!

Thanks Laura!

Lisa & Sheri

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Mar 19, 2008 09:24AM - edited Mar 19, 2008 09:25AM by nash

Hi, Lisa. Yes, reconstruction using one's own tissue is different than implants and/or expanders (unless one is doing a lat flap with implants, but that's not what Sheri's planning).

There are two types of reconstruction using stomach tissue--TRAM and DIEP. TRAM is more common, and they use abdominal muscle in the process. DIEP uses only tissue, not muscle with a blood supply, and therefore is microsurgery and thus more complicated. Not as many surgeons perform DIEP.

Make sure Sheri knows what she's getting into with the TRAM or DIEP--they are very long surgeries (10 hours) with often painful recovery times, and the patient needs to be motivated and committed to the process. So I'd encourage you to do a lot of research on the reconstruction end of things from the get-go, so Sheri is clear on what she'll be going through and what the probable cosmetic result will be. I know the girls on the reconstruction board will be able to give you lots of info.

There's also a private photo section of the board of reconstruction surgery that you can access if you private message TimTam. She's in charge of the passwords for it.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain

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