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Topic: Surgery Quandary

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

Posted on: Aug 1, 2008 12:55PM

Kleenex wrote:

I'm newly registered here. Diagnosed about a month ago - it took a while to get a second surgical opinion and then through all sorts of tests and other appointments: breast MRI's, CT and bone scans, meeting with plastic surgeon, meeting with oncologist. Both surgeons' opinions are the same: we can try lumpectomy and it may work very well, but then again, it may not, because of the location of the tumor. It's 0.7 on the sonogram & sonogram-guided biopsy reports, but 2.02 cm per the MRI (after biopsy). 11 o'clock on left breast - isolated in an upper, inner-cleavage area where I haven't got much tissue at all. Gyn thought it was rib tissue (I found it - it's out of the field of mammos). If BCT doesn't work, they said I'd need mastectomy. I'm active, I like having breasts, so I would do bilateral mx with recon in that case. I'm 45, and although I'm not obsessively attached to them (if they're really evil, they have to go), I really have liked my breasts. They can usually still be scooped up with a bra into something that draws attention away from other areas I like less. Neither surgeon batted an eyelash at the idea of STARTING with bi-mx, especially the breast-specialist, who knew a lot about ILC. But the oncologist, when told of this idea, was shocked. "Not many people do that these days, and the tumor is so small," he said. He did eventually come around to admit that if we would worry constantly and intrusively, and if we could deal with faux breasts, then the decision was fine for us. But he started me thinking: I have had issues with my cervix (two LEEP procedures), but the only times I really think of it and worry are right before and after paps - I'm not up at night, and this is similar, in that they have to catch the right cells on a pap to know you've got a problem. It's just such a leap for me to go from this tiny lump (nothing else looked suspicious on the MRI, and my nodes seem unaffected, although until surgery we won't know) to a big, life and body changing surgery. I don't have enough extra tissue to make two new breasts out of my own body, so I'd do implants. BUT if I do lumpectomy with rads, then I've heard trying to fix things with a recurrence is a mess. Questions: (1) has anyone with ILC done the lumpectomy and rads route and waltzed off into the sunset? I hear a lot of people on here say they later wish they'd done bi-mx, because it came back, but are there any successes with the less invasive surgery? Doesn't the Tamoxifen and ovarian ablation minimize local recurrence/contralateral recurrence risk, too? (2) HOW do you find the right choice for yourself? I vacillate hourly. I want this out, but I want to do it right... I did briefly have a bi-mx surgery scheduled within four days of the plastic surgeon's visit by the very eager scheduler there, but I had a total freak-out and canceled. I couldn't have my life organized to operate without me for several weeks in just the two days I had to do it, and I started to have these "waaaaaah! I don't want surgery!" thoughts, which I suppose was just natural emotional stuff I'd been suppressing. Sorry this is so long - Help!

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 1, 2008 01:46PM bbmom wrote:

Kleenex,

Sorry about your dx. You have to do what makes you comfortable. You'll know what's right because you'll be at peace with your decison.

I was given a choice between having the lump removed and rads or a mast. After talking with my surgeon and my husband I chose to do the mast. For me losing a breast wasn't a big deal when I compared it to losing an arm or leg or even sight in one eye. It turned out to be the right decision since my cancer had spread to most of my lymphnodes.

By the time I finished with my treatments I had decided to have the other breast removed and reconstruction of both. I don't regret my decision, but I do wish I had researched my options when it came to the mast. At the time I didn't know anything about a skin sparing mast and that would have made such a difference in my recon.

Good luck to you.

God Bless!

"The Will of God will never take you where the Grace of God will not protect you." Dx 11/25/2009, ILC, Stage IV, Grade 2, 14/17 nodes, mets, ER+/PR+, HER2-
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Aug 1, 2008 04:46PM - edited Aug 1, 2008 04:47PM by nash

I'm an ILC gal who had lump/rads (and chemo/tamoxifen). I just finished radiation this past February, so I'm not sure about the waltzing off into the sunset part yet, but I do know I agonized for a long time over which surgery to have. The surgeon/onc/tumor board all said orginally that I needed bilat mast b/c of extensive pleomorphic LCIS left over in the breast after the ILC was removed. I pondered long and hard about what to do, and finally went with my gut, which was to just do the lumpectomy. I wasn't in a place in my life (I was taking care of my small children and Stage IV bc mom who died while I was in treatment) to contemplate major surgery. I just wanted to get the tumor out and get through chemo and rads. And after all my pondering, I realized that I just couldn't go through a double mast unless medically backed into a corner with it, so to speak.

My surgeon said her failure rate of implants on radiated skin is about 40%, and that I could do a lat flap on the radiated side if necessary. She also said that if I had a local recurrence, it would likely be in my chest wall b/c of the location of my tumor, so that factored into my decision.

After I made my surgery decision, the surgeon/onc/tumor board, who had all been very gung-ho on the bilat mast, then said, "Oh, the lump/rads will be fine". OK. Just goes to show that there really is no right answer sometimes.

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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Aug 1, 2008 05:34PM Kleenex wrote:

Nash - Where was your tumor? How did the likelihood of a recurrence in your chest wall influence your decision?

Alaina13 - What prompted you to decide to have the other breast removed? 

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 1, 2008 08:03PM nash wrote:

Kleenex, my tumor was right up to the chest wall. The MRI showed chest wall invasion, so the surgeon removed part of my pectoralis muscle, which ended up being a clean margin.

Although the surgeon said having implants would actually make a chest wall recurrence easier for her to feel (b/c the implant is put behind the muscle and pushes it up), I did not want to go through bilat mast/reconstruction, not being totally sold on it, only to have a chest wall recurrence that would happen whether I had the bliat or the lumpectomy. 

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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Aug 1, 2008 10:02PM bbmom wrote:

Kleenex,

There were several reasons that made me decide to have my other breast removed. The fact that my ILC doesn't always show up on a mammo. It had happened once and I didn't want to take a chance on that happening with the other breast. After researching recon and deciding on DIEP I knew that it was a one time shot. I talked to both my onc and surgeon about my decision and both felt it would be a good thing.

I know that there is no guarantee that I won't have a recurrance, but at the same time I know that I have done everything possible.

God Bless!

"The Will of God will never take you where the Grace of God will not protect you." Dx 11/25/2009, ILC, Stage IV, Grade 2, 14/17 nodes, mets, ER+/PR+, HER2-
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Aug 2, 2008 03:30PM Kleenex wrote:

Thank you both for sharing your stories with me. I am still ambivalent. I suppose I should just pick a date to decide by. Nash - I can't imagine dealing with this if my children were small AND my mom also had late-stage breast cancer. What an ordeal! I'm being a wimp about the bigger surgery, and I literally have nothing going on - other than being June Cleaver to my two girls (11 1/2 and 13) and my husband of 15 years, who has been awesome. My ILC is outside the field of mammography - although the tech, bless her heart, did her best to scrape the tissue up off my chest to get a view. It's on the MRI - but even the surgeon said, "you have to wonder if we'd have really seen that without knowing it was there." So I can perfectly understand Alaina13 opting to remove the second breast.

One option that's been mentioned is that I can "start with" lumpectomy. On the good side, that gets the cancer out, it's faster to schedule, we can learn what my body is really up to, and plan from there. If it can't be done with lumpectomy (dirty margins, multiple re-excisions), then there I am, backed medically into a corner. If one has to go, they're both going - I am set on that.

I am really finding that I'm scared to death of the actual surgery process itself. I've never had anything done, really. Childbirth with a few stitches, two fillings with numbing. My veins got messed up from the MRI's - I had one breast done on each of two consecutive days, and I think I had "extravasation" from the speedy infusion of the imaging solution. Eight inches of my wrists on each side were swollen and sensitive for over a week. And this is just a little screening procedure! It's probably a freak think and means nothing, but it's kind of a set-back as far as easing my mind about surgery. I do notice that mostly, no one says much about their surgery - so perhaps I'm being a big baby. I'd love it if someone could just knock me out right now and wake me back up three weeks post-op... 

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 2, 2008 05:14PM nash wrote:

Kleenex, you're not being wimpy at all. I was casual about the whole mast/recon thing until I started researching the reconstruction surgeries, which are major surgeries, and realized that I just couldn't go through with it unless I absolutely had to. If I weren't married, I'd probably gone with bilat mast, no recon. The circumstances with my mom and kids sort of made the decision easier for me to go with the lump/rads--I simply couldn't be laid up that long. But truth be told, I didn't want to be laid up that long, either.

I think starting with a lumpectomy, then going from there, is a totally reasonable approach. You can always do the mast/recon later. I wonder myself, if after a couple years of monitoring, if I'll get sick of the whole thing and opt for more surgery. But then my chest wall issue creeps into my mind, and I'm back at square one again. 

In general, I approach things with the most conservative approach first, then proceed from there. You'll find a lot of other women on the boards who can't imagine not having bilat mast right off the bat. The majority of the time the choice of surgery is totally a personal decision, with no right or wrong answer. 

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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Aug 2, 2008 05:16PM nash wrote:

Wanted to add--have you checked out the Surgery board and Reconstruction board here? You'll get a lot of info from the women there who are in the thick of things with their surgeries.

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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Aug 2, 2008 06:40PM nash wrote:

Kleenex--thought of something else--it's all sort of coming back to me now (the past year is sort of a blur!). The surgeon orginally pushed for lumpectomy for me, even with the ILC. It wasn't until we got the surgical path and saw that there was extensive pleomorphic ILC was in the breast, that she brought up the bilat mast. And even then, she said she was recommending that b/c the LCIS was pleomorphic, not classic LCIS. So, in my case, my surgeon was conservative. She is the head of the breast clinic at a major university teaching hospital.

Also, saw you found the surgery board! Interesting discussion over there about differences in countries in mast rates.

One other thing I'll mention, then I'll stop babbling, is that I've found many women, especially those who don't have bc, think that having a mast reduces your chance of a new primary by 100%. My surgeon told me the rate was 95%, which wasn't good enough for me, having had a 1% chance of getting bc at age 38, then getting a weird subtype that accounts for .5% of all bc. So, there's this notion that if you have a lump/rads, you're not doing enough to avoid a new primary. My take on it is, a new primary isn't going to kill me, but I might get mets from my current primary, and that's what concerns me more than a new primary tumor.  

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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Aug 3, 2008 12:54PM bbmom wrote:

Kleenex,

I agree with Nash, no such thing as wimpy when it comes to making these decisions. Maybe you've already made up your mind and are trying to justify doing more than you really want to. Go with your gut. No treatment is a sure thing and it certainly isn't a one size fits all.

I think one of the biggest things that made me decide on such drastic measures is that until my dx I really didn't know anyone that had survived. I lost a cousin at 40, a sister-in-law and my brother-in-law's mom all in a 2-3 year span before my dx. So initially I thought cancer was a death sentence. I know better now.

Good luck to you.

"The Will of God will never take you where the Grace of God will not protect you." Dx 11/25/2009, ILC, Stage IV, Grade 2, 14/17 nodes, mets, ER+/PR+, HER2-
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Aug 3, 2008 09:34PM awb wrote:

Kleenex----my mom was diagnosed with ILC (negative nodes on axillary node dissection)--had lumpectomy, radiation and tamoxifen; and while she hasn't exactly "waltzed off into the sunset", she has done very well.  She is now a survivor of over 21 years without a recurrence. So it is very possible to have a good outcome with lump/rads/tamox.

Anne

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Aug 4, 2008 01:02AM trigeek wrote:

Kleenex,

Sorry you had to join us but glad that you found this board which was(and still is an)amazing resource/support group.

I got bilateral mx, because the tumor had not shown up on yearly digital mammos and ultrasounds and they said it had been brewing up there for years. I only had realized a slight thickening the last 6 months.. nothing before that. I got spooked and said 'off with both'

Bilateral mx with reconstruction was no picnic however I am happy about my decision. I had small breasts to a lumpectomy would have taken out most of it anyways, and it turned out that there was multifocal involvement too(which did not show up on mri either).. so eventually Iwould have had to go with a mx at least.

The other breast was collateral damage nothing was wrong with it  ( oddly that is the one that needs some fixing now something went wrong with recon whereas the bc breast which got radiated after implant exchange is perfectly fine.. go figure !!!)

My gut feel for bilat mx was so strong that was the first word I told my surgeon when she told me that the biopsy results were not good.

Do your homework, follow your gut.. never look back.

Make this your motto through your journey and you will make the right choices !

Bilateral MX with Recon, DD AC/Taxol Rads,Tamoxifen, oopherectomy, femara, zometa "Live Deliberately !"www.aylin-yeahright.blogspot.com/ Surgery 9/1/2007 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 10/7/2007 AC + T (Taxol) Hormonal Therapy 1/4/2008 Femara (letrozole) Radiation Therapy 6/11/2008 Whole-breast: Breast
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Aug 4, 2008 03:12PM IllinoisNancy wrote:

Hi,

I'm an ILC gal who had a lumpectomy, rads and now tamoxifen.  I have been doing great and will be a 2 year survivor in October.  I had the OncotypeDX test done and I was a 9.  I wish you all the best in your fight with BC.

Nancy

Pleomorphic Invasive Breast cancer three times 2006, 2010 and 2016, IBrance and Femara, NET Cancer in stomach and liver 2015, Sandostatin
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Aug 5, 2008 01:59PM Kleenex wrote:

I suppose "waltz off into the sunset" was a bad choice of phrasing. I really was just wondering how many people were done with breast cancer for a nice long time after "just" lumpectomy/rads/tamoxifen. I do realize that these boards probably contain more people who have had ongoing issues than you'd find out there in the world at large. So I've read a lot about people who had a recurrence a year later, and not much from people who go on with their lives and think back just sometimes on that one big year they dealt with breast cancer (even if they're still dealing with tamoxifen).

IllinoisNancy, did you have chemo?

Nash - as I'm reading now more with an eye toward probable lumpectomy (as a start - it might not end up giving us good margins), I'm trying to pay more attention to the details of BOTH procedures. The chances for recurrence with both, and where that might happen and what that might mean. The details of reconstruction (is it more of a pain in the butt to keep having your own breasts screened and biopsied, or is it more of a pain to spend years and years with a 30% chance of needing revision surgeries on implants?) The difference between recurrence or new cancer versus mets of any of them.

A weird thing that crossed my mind at the mall a couple of days ago concerns reconstruction (implants) and bras. Looks like 99% of bras have underwire and varying degrees of push-up padding. I've been quite fond of those technologies with my 45 year old breasts - but I've read that after mastectomy, your nerves are not reliable and you could do damage with underwire or other pressure. In addition, if it's just a pair of implants under muscle and skin, can they even be "scooped" at all? So where do you get bras, or do people not wear them because they don't have to? Are the scars visible through fabric, or fairly flat? This is probably question for another discussion thread... 

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 5, 2008 04:53PM nash wrote:

This study looks at local and distant recurrence rates over 5 years by subtype of bc post-lumpectomy. It says that ER/PR+, HER2- has .8% chance of local recurrence after lump/rads.

http://www.ncbi.nlm.nih.gov/pubmed/18413639?ordinalpos=17&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

Here's another study about local recurrence post-lump with tamoxifen use. It says the stat for local recurrence is .8% for a new primary that's ER/PR+ (same as the other study), but 4.9% for a new ER/PR - primary.

http://jnci.oxfordjournals.org/cgi/content/abstract/93/13/1008

If mets are going to develop, they will develop no matter which surgery you opt for.  My surgeon also made it very clear to me that if I had a chest wall recurrence, that also would happen no matter what and was a sign of aggressive disease, not a function of how aggressive the surgery was.

Good point on the bras. I get a nice non-underwire, non-pushup one from Victoria's Secret that all the girls on www.her2support.org swear by. I think it's the IPEX wireless, but I'd have to double check. 

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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Aug 6, 2008 02:21PM IllinoisNancy wrote:

Hi,

No I did not have chemo.  My oncologist said that it was completely out of the question when my oncotypedx came back as a 9.  As far as knowing survivors who had lups and rads...yes there are quit a few in our small town alone.  I didn't know about them until I got it and they seemed to be everywhere.  Keep the faith and good luck.

Nancy

Pleomorphic Invasive Breast cancer three times 2006, 2010 and 2016, IBrance and Femara, NET Cancer in stomach and liver 2015, Sandostatin
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Aug 11, 2008 12:45AM Kleenex wrote:

nash - thank you for all of the great information! I need to read through those studies. What do you have done for follow-up? Do they do MRI's?

trigeek - love that sentiment: "do your homework, go with your gut, never look back."

Is there a tamoxifen thread on here somewhere? I have to look. I was looking at side effects of that and of ovarian ablation (chemical), and got a little freaked out. 

I have an appointment tomorrow afternoon with my breast surgeon to pick a surgical path. This thing has to come out. I'm thinking of starting with lumpectomy, unless she talks me out of it. As far as my gut goes: my gut churns at the idea of dealing with the bigger surgery at this point. If something comes up as a result of the lumpectomy - really bad margins or hidden surprises that the MRI didn't find - then I'll deal with that at that point. But I can't find a lot of research that clearly indicates that I'd be more "done" if I chose a bilateral mx at this point. It's the mets that get you, not lumps in breasts. The MRI shows only this discreet area, my bone and CT scans were clear, my mammograms were clear... all indications are that this is all I have going on. And I must say that the "informed consent" forms provided by the plastic surgeon certainly were eye-opening. I know that there are risks no matter what I do, though...

It's almost amusing: there I was, hating the augmented breasts at my country club pool and using birth control pills to avoid any perimenopausal or menopausal symptoms. What a difference a lump makes. NOW it's possible I'll NEED implants myself, and it's definite that I'll be in the thick of chemically induced menopause in a couple of months. Greeeeeeeeeeeeeeeeat. Sometimes I think all of this would be easier if I actually felt sick. I'm emotionally sick and stressed out about all of this, but physically, I just have a lump that feels like a large rib. It's so insane that this will cause me so much trouble and expense and that I'll feel so hideous dealing with this. And yet I may never feel much better emotionally, because the false sense of health security I operated under is gone for good now.

Thank God for my borderline ADD - I'll likely often forget about this stuff while lost in some goofy distraction. 

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 11, 2008 01:12AM - edited Aug 11, 2008 01:15AM by bbmom

Kleenex,

Good luck with your appt tomorrow. You'll feel better once you have a game plan. There is a tamoxifen thread here, it's under Hormonal Therapy:Before, During and After.
Dx 11/25/2005, ILC, , Stage IIIc, 14/17 nodes, ER+/PR+, HER2-

"The Will of God will never take you where the Grace of God will not protect you." Dx 11/25/2009, ILC, Stage IV, Grade 2, 14/17 nodes, mets, ER+/PR+, HER2-
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Aug 11, 2008 11:52PM Kleenex wrote:

Thank you. The appointment went well - I'm scheduled for a lumpectomy and snb next Wednesday, August 20th. Don't think I'll be canceling this one. I DO feel better, having a plan to get this evil globule out. I'm still freaking out about the idea of ANY surgery at all, but I feel good to be starting with something I can deal with. If we don't get clean margins, then I know I can get good support to go for more surgery. Right now, this feels like the thing to do. I just hope I can get through it okay. And I know my poor husband is freaking out - he probably prefers this procedure, but he's not a person who is good with medical stuff in general. But he's been great - though obviously stressed.

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 12, 2008 12:13AM bbmom wrote:

Congrats! That's the best you can do is to go with your gut. You'll do fine. Let us know how things go.

Good luck to you!

"The Will of God will never take you where the Grace of God will not protect you." Dx 11/25/2009, ILC, Stage IV, Grade 2, 14/17 nodes, mets, ER+/PR+, HER2-
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Aug 12, 2008 08:03AM hostanut wrote:

Kleenex,

        Glad you've finally made your decision and will proceed.  I had a lumpectomy, rads, and now Arimidex for 2 yrs.  All was "good" about the cancer, except when all was said and done, it was 2.5 cm.........double what they thought originally. They told me having chemo would only increase my survival rate a few %, so I didn't go ahead with it. (Our kids are grown, and though I don't want to die, I felt comfortable with the decision).  Well, it took me a yr. after the lumpectomy to decide to have implants (I was small to begin with).  Then came contracture on the side with rads., so now I'm having a mast. completion and DIEP flap.  I understand your waffling, as it's taken me 2 yrs. of reading and exploring options, to finally do what I probably should have done from the beginning.  It's so difficult when you have to process all that info and make a decision pronto.  Best of luck to you.        Nancy

DX 4/06, IDC, 2.5 cm.,stage IIa, grade 1, 0/3 nodes, ER+PR+, HER-2 neg.
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Aug 12, 2008 02:25PM Kleenex wrote:

Did you do just implants a year after the lumpectomy, or did you do a single or double mastectomy with implants at that point? Was your original diagnosis ILC? Do you wish you'd originally done more?

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 16, 2008 03:20PM - edited Aug 16, 2008 03:20PM by nash

Hi, girls. Just got back from vacation, so am catching up on the threads. I'm glad you've got a surgery date, Kleenex, and I'm glad you feel better now that you have a plan. You'll have so much more info after surgical path comes back that it will make forward planning even easier.

You'd asked what my followups are--right now it's annual MRIs and diagnostic digital mammos. Although when I saw my onc last month, she said that the insurance companies are starting to balk at annual MRI's if one is not BRCA + (even with a history of bc), and that we might have to push it out to every two years. I was not thrilled by that piece of news, and will pay out-of-pocket for the MRI's if necessary. 

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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Aug 17, 2008 03:15PM Kleenex wrote:

That would be a bummer - if MRI's weren't covered. The original hospital charge for my breast MRI's (done on two separate days - allegedly due to the capacity of the machine, the amount of imaging solution they can give you at one time, the length of time it lasts in your body) was $4,600. $3,900 after insurance. I don't know if having them each done on a different day added to that, or if that's typical. I had issues with my veins after the process - I think the speed of the infusion of the imaging solution was too fast, because I had what seemed to be "extravasation" in both arms. Painful swelling starting an inch or so down from the IV insertion point and continuing for about six inches to the middle of each arm. This lasted for about 7 - 10 days per side. It wasn't necessarily a direct reaction to the imaging solution itself, because that's supposedly more of a full-body thing. So I was a pain in the butt with the IV infusion of imaging stuff for the CT scan, and the technician slowed down the flow. No problems at all.

I'm hopeful we'll see improvements in imaging techniques. Hopefully short term... My ILC was outside the field of mammography, but clearly visible using ultrasound. Does anyone ever have follow-up sonograms? Or is that also prohibitively expensive? It seems that it would be reassuring to have a scan of the outer edges of my breasts - the area where this tumor is - along with whatever else they do. Not a whole breast scan - just the non-mammogrammable area.

Does Tamoxifen decrease breast density? I'm assuming I should have some decrease in a couple of years or so, just from stopping the BCP's that may have contributed to my cancer, but it seems that Tamoxifen would do that and perhaps that would make it easier to "see" things in breasts... 

Anyway - I'm still a bit uneasy about having surgery in general, but thrilled to have a plan and know it will be good to see what we're really dealing with.

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-

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