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Topic: possible mets to pelvic area or uterus?

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

Posted on: Mar 7, 2008 01:17AM

gandl wrote:

Hi, I had surgery for ILC in 6 locations 3 weeks ago.  I got the results of a CAT scan today indicating "enlarged heterogeneous irregular uterus with cystic and solid masses in region of adnexa.  May be eccentric fibroids .  Left adnexal fullness with several cystic lesions could be necrotic fibroids.  Adnexal neoplasm can not be excluded."  I see the gyn in a week and a half.  My last pelvic exam about a year ago was normal.  I've read that ILC is more likely to show up in the abdomen than other breast cancers.  Anybody know more about this than I do?  Thanks, gandl

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09 Dx 1/28/2008, LCIS/ILC, Right, <1cm, Stage IA, 1/6 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane)
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Mar 7, 2008 01:58AM nash wrote:

Well, it's true that ILC can spread to the ovaries, uterus and abdominal area. In your case, I think it's encouraging that what shows on the CT favors fibroids. Have you had heavy periods? Pain?

ILC is really hard to image, including when it's showing up as mets. It tends to present as a thickening, as opposed to a discrete mass. 

Please keep us posted on what the gyn says, and I'd be interested in what s/he suggests to do going forward. Without a biopsy, I don't think anyone can tell what's going on for sure.

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 7, 2008 05:19AM Gitane wrote:

gandl,
ILC can go just about anywhere. I don't understand what the CAT scan indicates so I really can't comment. That said, it seems like it's too early for you to know what you're dealing with here. The waiting is the difficult part. Hope you are O.K. Our thoughts are with you.

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Mar 9, 2008 07:42AM megatha wrote:

Hello

I was diagnosed with ILC in 1999. I have recently been diagnosd with secondaries in the ovaries and omentum. I have been told that ILC is more prone to go to the abdominal area...is there anyone out there who have same mets or similar.

Love megatha

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Mar 10, 2008 02:11PM lenarepp1 wrote:

Hi Megatha:  If you don't mind me asking, what size tumor did you have in 1999.  Did you have pain in your pelvic area and thats how you knew.  Did you receive yearly pelvic ultrasounds

Thanks

Sue

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Mar 10, 2008 02:19PM wallycat wrote:

Megatha,

I am so sorry to hear ....it is my worst fear.

I'm also curious how you were re-diagnosed?  Did you have symptoms or on casual follow-up?  What are you doing for treatment?

I hope and pray that every month that goes by, each and every one of us finds newer, better and easier treatments should the beast rear its ugly head again.

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 10, 2008 02:58PM paige-allyson wrote:

gandl- I am so sorry you are dealing with the stress of this mets question. I don't really have anything to offer other than what others here have already said. Please let us know how things are going. ILC is a rotten dx in that it is so sneaky but good in that it is usually hormone receptor + so there are more avenues of treatment.

Dx 5/18/2007, ILC, 3cm, Stage IIIA, Grade 2, 6/17 nodes, ER+/PR+, HER2-
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Mar 10, 2008 11:34PM gandl wrote:

Hi Nash, Regarding your question about symptoms, I've had irregular bleeding for a while, always bright red and fresh looking.  I don't know from one day to the next if I will have it.  My surgery for ILC was on day nine of a "period" which ultimately lasted for 14 days.  Then nine days later I had 3 more days on, off 2, on 1, off 2...

You get the idea.  I'm really uncertain when a period starts and stops anymore.

My other symptom is the feeling of heaviness and a little crampiness like right before a period, but it doesn't go away.  I've also had some sharp pains on the right side, almost like under my bladder.  But the CT says everything is on the left.  Maybe it's pushing stuff over.  My urine flow is also slower, kind of weird.

The original CT was done because of pain I was having in my leg.  The findings were on the lumbar spine images.  I also had a bone scan because of that pain which showed, "suggestive of osseous metastasis to posterior of sternum and 5th left rib".  The plain film of my sternum and ribs didn't confirm that, so the nurse told me that means there is no cancer there.  They will recheck the bone scan in 3 months.  The CT and bone scan showed my leg to be fine.  They found an L5 radiculopathy on an EMG, something like a pinched nerve.  I guess it's a good thing my leg hurt or they would not have done the other tests.  gandl

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09 Dx 1/28/2008, LCIS/ILC, Right, <1cm, Stage IA, 1/6 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane)
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Mar 11, 2008 02:03AM nash wrote:

Gandl--it does sound like you have fibroids, with all that bleeding and cramping going on. When is the gyn appt? 

With spots showing up on the bone scan, has anyone suggested a PET/CT for you in addition to the follow-up bone scan? Personally, I'd push for one.

Keep up 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 11, 2008 11:51AM megatha wrote:

Hello Lenarepp and wallycat

My original tumor was 11cm.

My new diagnosis was picked up after my tumor markers were elevated, they sent me for a CT scan and thats when they saw the new tumors. At first they believed them to be new primaries,but after draining the ascites from my pelvic cavity all they found were Breast cancer cells.I am having chemo at the moment(Taxotere) and have had 5 so far with the last one next week.I think they are giving me Arimidex after the chemo has finished.

Take care  Megatha x

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Mar 12, 2008 05:49AM Gitane wrote:

megatha,
I just wanted to pop in here and say I hope the Taxotere is doing its work to get rid of your tumors. Let us know how you are doing. Positive thoughts going your way each day.

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Mar 12, 2008 02:21PM megatha wrote:

Hello Gitane

Thanks for enquiring how I'm doing...I had a scan a few weeks ago which has shown that the Taxotere has stopped the tumors progression , but hadn't shrunk them at all.My Onc is pleased that it has stopped the progression so I think I should be too....Just hope that it continues..I will have another CT scan after the last Taxotere just to check the progress and then they are talking of Arimidex.

Hope you are doing well,and sending positive thoughts your way too.

Love Megatha x

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Mar 16, 2008 05:29PM gandl wrote:

Hi all,  I go to my gyn appointment tomorrow.  I'm nervous because I've never been to this doctor before.  But I'm glad to be getting on with this.

Megatha, so sorry to hear about your mets.  I hope your treatments are going well.  My prayers for you,  gandl 

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09 Dx 1/28/2008, LCIS/ILC, Right, <1cm, Stage IA, 1/6 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane)
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Mar 16, 2008 06:19PM megatha wrote:

Hello Gangl

Just wanted to let you know I will be thinking of you tomorrow and hope you get good news . Have popped you into my prayer box until its over.

Take Care

Megatha xx

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Mar 18, 2008 06:26PM nash wrote:

Gangl--how'd the appointment go? Thinking 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 19, 2008 06:47PM gandl wrote:

Hi Nash, Thanks for asking.  The new doctor seems quite competent. He ordered an FSH, LH, and estradiol (blood tests).  That should help indicate how close I'm getting to menopause.  He also ordered a pelvic sonogram and transvaginal sonogram.  While he was doing the pelvic exam he said he felt a 5cm fibroid.  He had a blushing medical student with him who also got to feel the fibroid. I  like to contribute to the education of our next generation of doctors. ; ) The med student amused me because I could see how embarrassed was, but intent on doing his best to learn.

Then while the gyn was in there he decided to do an endometrial biopsy. I found it to be quite a painful procedure. All I could see was the sheet  covering me.  The doctor said, "You still here?"  I didn't know who he was talking to because there were several people on the other side of the sheet.  Then he repeated, "You still here?"  I asked, "Do you mean me?" He said, "Yes." and I said, "Yes, can't you see me?" Sometimes I say funny things in that position .   Anyway, it amused me later.  The ultrasound tech said she saw several fibroids and only measured the larger ones.  I am quite hopeful that fibroids are my only problem.  I will go back in three weeks to "discuss my options".  If I had known I was having an endometrial biopsy I would have taken someone with me.  As it was, my walk on the way to the lab was a lot like Tim Conway's little old man on the Carol Burnett show.  If I tried to take a real step it just hurt too much.  Then when I got to the lab I found that the nurse had not put my name on the requisition.  So I had to make the long trek back to the 5th floor to have my requisition corrected.  It was an interesting day.  Compared to the breast stuff though, pretty easy, no long lasting pain.  gandl

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09 Dx 1/28/2008, LCIS/ILC, Right, <1cm, Stage IA, 1/6 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane)
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Mar 19, 2008 09:23PM nash wrote:

You cracked me up, gandl! Sorry you had to go through an endometrial biopsy unexpectedly, but it does sound like the doc is throrough and on top of things.

I just had my estadiol levels pulled and am awaiting results, too. That should be interesting, since I'm only 39, but am hot flashing away like there's no tomorrow. 

Anyhow, it does sound like fibroids will be the most likely diagnosis, and that's really good news.

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 22, 2008 03:36PM gandl wrote:

Hi all, I got the results of the ultrasound.  It said that I have fibroids throughout, the largest on the back being about 5cm every direction.  It looks like the adnexal fullness was only fibroids. : )  I don't have the endometrial biopsy or hormone levels back yet.  I haven't stopped bleeding since the biopsy 6 days ago, but I've only had six blood free days this month anyway.  Maybe I'll be through menopause soon and the fibroids will shrink.  I'm 54 with no menopausal symptoms. : (  Has anyone had the experience of having fibroids shrinking a lot after menopause? Or of having fibroids hide some other cancer?

Today is my 28th wedding anniversary.  Since my ILC was diagnosed on 1/28/08 he says that means that my cancer was found and cured this year. I hope he's right, but I'm not into numerology like he is.

Happy Easter everyone!  gandl 

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09 Dx 1/28/2008, LCIS/ILC, Right, <1cm, Stage IA, 1/6 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane)
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Mar 22, 2008 08:07PM PeggyDixon wrote:

Dear Gandl...that is such wonderful news. I am so happy for you and I can imagine the relief you are feeling right now. What a fabulous Anniversary and Easter present!!

Hugs from Canada.

Peggy

Peggy Dx 1/19/2006, ILC, Stage IIIC, ER+/PR+, HER2-
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Mar 22, 2008 08:50PM smerf wrote:

Glad that you learned it is fibroids, and wishing you good news with your other tests too. I know endometrial bx is not fun, but you cracked me up with your comment. I had all that done when I was in my early fifties too, and I had the bleeding and fibroid dx. Now I'm almost 63, and fibroids did shrink. Hoping the same for you.

Happy Anniversary!

Dx 2/13/2006, IDC, 2cm, Stage II, Grade 2, 0/3 nodes, ER-/PR-, HER2-
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Mar 23, 2008 06:00PM gandl wrote:

Smerf,  Thanks for the hope for menopause and shrinking fibroids.  I don't think I'd like to have another surgery unless it's really necessary.  My kids used to watch the Smurfs when they were little.  I hadn't thought about that lately until I saw your name here.

Peggy thanks for the good wishes.Hope your Easter is nice.  gandl 

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09 Dx 1/28/2008, LCIS/ILC, Right, <1cm, Stage IA, 1/6 nodes, ER+/PR+, HER2- Hormonal Therapy Arimidex (anastrozole), Aromasin (exemestane)
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Mar 24, 2008 06:44AM SLH wrote:

Hi gandl,

We have a lot in common.  I'm 54, with ILC stage 1, but no node involvement. I had a bilateral 3 years ago, and then a complete hysterectomy 7 months later.  My onc strongly recommended that because with BC there is an increased risk of ovarian and endometrial cancer, plus he wanted me into menopause to get rid of the estrogen, and to get me on Arimidex.  My mom has ovarian c, so that further increases my chances.

It seems like you would benefit from a hysterectomy.  With the fibroids causing you pain, it would be a relief!  It's a drag to have another surgery, but compared to my bilateral, it was easy!  And not having to worry about ovarian c also is a bonus.

Megatha, I hope the Arimidex works well for you.  I've been on it for 2 years, and haven't had many symptoms.  Hugs to you!

sally 

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Mar 26, 2008 02:00PM keepon wrote:

Hi Gandl, I  am so gald everything is coming back O.K.

Megatha, I just wanted to let you know, I also was diagnosed in 1999, with a stage 2B ILC. Then in Aug.2006 had mets to my abdomen,(all over inside). I had my ovaries out, as I was still getting regular periods. Now I am on Femara, and I have been feeling great. I plan on staying on just the Femara as long as it's doing the job. Hang in there.

Sue

Dx 5/26/1999, ILC, 2cm, Stage IV, 1/10 nodes, mets, ER+/PR+, HER2-
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Mar 27, 2008 06:45AM megatha wrote:

Hello Sue

And thanks for replying. I am pleased you are doing so well. I have asked about removal of my ovaries, but the onc has said no. I am to start on Arimidex in a couple of weeks so hopefully that will give me a similar result as Femera has done for you. The hardest part I find is not knowing anyone else with similar mets.

Love Megatha

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Mar 27, 2008 12:45PM paige-allyson wrote:

Gandl- Happy to hear that the news was good! It's nice to be reminded that we can have "normal" problems like fibroids and that not everything that goes wrong has to be cancer/mets.

Dx 5/18/2007, ILC, 3cm, Stage IIIA, Grade 2, 6/17 nodes, ER+/PR+, HER2-
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Apr 6, 2008 11:33PM willowweed wrote:

Hi, Megatha.  I'm new to this forum, but I caught your post on mets to your omentum.  I've got them, too.  I didn't even know I had an "omentum" until I developed fluid build-up.  I'm still not even sure what my omentum is other than my oncy said it's an abdominal fat apron and no one really knows the purpose of it except God.  Well, if that's the case, let's just get rid of it!!  Apparently, though, that's not an option Smile.  (Wouldn't it be great if liposuction were added to our bc toolbox?)  Anyway, I've got mets to lungs, bones, and omentum.  I've been receiving various tx for the past 4 years and am currently on Tamoxifen for round two (last time was from 1997-2001).  All appears to be stable for the time being.  Let me know if you have any other questions, but so far you're the only other person I've heard of that has omentum involvement.
Tracie - dx 1996; 7cm; er/pr+; neg. nodes; IIB; 6xCAF; 36 rads; tamox; bi-lat free trams; mets 2004
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Apr 7, 2008 01:56AM nash wrote:

Wanted to say welcome, willowweed. Sounds like your mets are slow growing--that really good news. What was your original tumor like (size, grade, etc)?

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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Apr 8, 2008 06:24PM willowweed wrote:

Thank you for the welcome, nash.  I was originally diagnosed in 1996; 7cm lobular; er+/pr+; low s phase; HER2-.  (They do so many different tests nowadays that I'm somewhat unfamiliar with the jargon in some of these posts I've been reading.)  Anyway, I had 6 rounds of CAF; 36 rads; 5 years of tamox; an oopherectomy; and a partridge in a pear tree; and was NED until June of 2004.  The cancer returned first in my hip; then lung and omentum involvement.  I was on Femara and then Aromosin until the lung involvement at which point I went through 10 months of taxol, xeloda, and zometa.  When we determined through tumor markers that the cancer was not "behaving", I switched to doxil for six months.  In December 2007 my tumor markers finally dropped into the normal range and we began Tamoxifen with the intent to use it for maintenance once I actually quit doxil.  My oncy wanted to hit the cancer with one more round of doxil in January just to be sure, but when January rolled around my tumor markers had climbed back to 76 (aaargh!) and we suspected that doxil wasn't doing the trick we thought it was.  So, we planned to start gemzar and avastin, however I had a month-long trip already planned for February.  I told them I'd start chemo upon my return but in the meantime I'd stay on the tamox.  In March my tumor markers had again dropped somewhat while I was only on the tamox so we took a "wait & see" approach.  In April the tumor markers haven't changed and a PET scan showed stability, so I'm still opting to wait and see what happens here.  I am reluctant to hop back into chemo until I know there is active progression of the disease.  Sorry for the long story, but it's been a long trailSmile
Tracie - dx 1996; 7cm; er/pr+; neg. nodes; IIB; 6xCAF; 36 rads; tamox; bi-lat free trams; mets 2004
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Apr 8, 2008 07:37PM nash wrote:

Phew, willowweed! You'd have thought that partridge would'a done the trick!Sealed

At any rate, has the onc dicussed switching to an AI (aromatase inhibitor) like Arimidex or Femara if the tamox stops working?  

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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Apr 10, 2008 03:55AM willowweed wrote:

Hi, Nash,

Nix the AI's.  I've already failed Femara and Aromasin.  Actually, I guess I wouldn't consider them as "failed" since I got two years on them before the lung mets reared their ugly head.  I'm just praying the Tamoxifen does the trick.  I can take these hot flashes for the next five years!!Smile

Tracie - dx 1996; 7cm; er/pr+; neg. nodes; IIB; 6xCAF; 36 rads; tamox; bi-lat free trams; mets 2004
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Apr 10, 2008 04:10AM megatha wrote:

Hello willowweed and thankyou for replying. I have not found anyone other than you who have the omentum mets. I have asked for ovaries and omentum to be removed but as you said its not an option. I have just finished Taxotere x6 and am awaiting scan results 30th April to see if any spread or if its no progression.If no prog I think they are going to put me on Arimidex. I had a good run on tamoxifen with my primary NED for 9 years Smile. Good luck with the Tamoxifen....

Love megatha x

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