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Topic: Wondering about my treatment plan

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

Posted on: Feb 29, 2020 07:58AM

dots74 wrote:

I was diagnosed on January 6th. Two days after my 46th Birthday. At the time, they were saying that I had a very small 1.4 cm tumor and maybe a couple of lymph nodes involved. They suggested a lumpectomy and radiation. I came home and after a lot of prayer decided on dmx nipple sparing procedure.

I live in a small rural area so I was sent to a larger city for surgery. I had the dmx with immediate expanders. The tumor they found was actually 5.2 cm. I had 2/9 lymph nodes positive for cancer. My k167 score was 5%

I went for a consult with oncologist yesterday, again in my small rural area, and he he advised 8 weeks of heavy chemo, 6 weeks of radiation, followed by ovary removal. I'm concerned. My onco type score isn't back yet, but he said it wasn't going to matter because the tumor was too large and lymph nodes were involved so chemo was a definite. He stated that I have a 50% chance of reoccurrence without chemo

I have read so many stories and articles that say chemo isn't as effective with lobular cancer. We don't have results back on any of the bloodwork or onco test. The cancer is slow growing according to path reports. Yet he wants a port placed and chemo to start within two weeks. I still have my drain tubes in. I'm thinking about getting a second opinion back at the larger city 2 hours away.

Am I overreacting? Is chemo necessary in my case? Is there a rush to get the chemo in there? Could I do radiation first? I'm hoping someone out there can guide me. Have any of you with bigger tumors and afew lymph nodes skipped chemo successfully?

Dx 1/6/2020, ILC, Right, 5cm, Stage IIIA, Grade 1, 2/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 7/27/2020 Femara (letrozole)
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Feb 29, 2020 08:14AM trinigirl50 wrote:

Definitely get a second opinion and even more definitely wait for your Oncotype results before you commit to chemo. A few weeks will not make a difference. Your ki67 score suggests it slow growing.


trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/14/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Feb 29, 2020 08:17AM dots74 wrote:

Thank you trinigirl50!

Dx 1/6/2020, ILC, Right, 5cm, Stage IIIA, Grade 1, 2/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 7/27/2020 Femara (letrozole)
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Feb 29, 2020 08:52AM BevJen wrote:

I agree with the second opinion, especially because your cancer is lobular. I think the verdict on chemo with lobular is still out but I had both chemo and radiation with my original diagnosis at age 51. At that time (2003-2004), I don't think they did Ki scores, but my cancer has always been determined to be slow growing. I don't think that's unusual for lobular.

I don't think they normally do radiation first once you've had surgery, so I'd be surprised if someone tells you that.

Try to get your opinion at a large teaching hospital that's got an NCI status. I believe that there are only 50 in the US. It's worth it for your peace of mind to go to one.

Good luck.


Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Feb 29, 2020 08:58AM dots74 wrote:

Thank you so much BevJen. I see my surgeon on Monday so this is really going to arm me with some good information.

Dx 1/6/2020, ILC, Right, 5cm, Stage IIIA, Grade 1, 2/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 7/27/2020 Femara (letrozole)
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Feb 29, 2020 11:45AM Yogatyme wrote:

The travel will be worth it if you have more confidence in the larger center. There is a cancer center in my hometown but infection rates are high in that center so I chose to travel 1 1/2 hrs away to a teaching university center that has a stellar reputation and would make the same decision again. At the very least, get a second opinion. Hoping for the best for you!

Yogatyme Surgery 3/2/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Feb 29, 2020 12:36PM - edited Mar 1, 2020 08:11PM by M_and_G

Dots74

I had a 5 cm IDC tumor with two nodes involved, due to very dense breast tissue imagining showed two small tumors with clear nodes. My tumor was Er+100% Pr+ 50% Ki 67 was 2. I participated in a trial and received Ibrance/Letrozole for 6 months prior to surgery. Pathology report states 95 percent of the cancer cells were killed using this treatment. I am still extremely nervous bypassing standard chemotherapy but my oncologist believes I have been treated appropriately. My tumor was sent for MammaPrint testing and results are low risk with less than a 10% distant recurrence rate in 10 years without additional treatment. I am currently taking Letrozole and will be for 5 or 10 years which should reduce my 10 year recurrence rate even more. After radiation, my plan is to take Ibrance/Letrozole for another 6 months. Hopefully, mastectomy, ALND, radiation, and 12 months of Ibrance/Letrozole will eliminate this beast. I wish you well in your treatment decisions. Unfortunately, there are no guarantees with any of the treatments.

I should also mention that I was 54 and postmenopausal at dx.

Michelle


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Feb 29, 2020 01:39PM dots74 wrote:

MandG thank you so much for your response. It’s definitely going into my pocket for upcoming appointments! Best of luck to you as well.

Dx 1/6/2020, ILC, Right, 5cm, Stage IIIA, Grade 1, 2/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 7/27/2020 Femara (letrozole)
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Mar 1, 2020 12:04AM Dani444 wrote:

I agree that you should think about getting a second opinion. You should have confidence in what your MO is recommending. As you can see in my signature I was diagnosed at 46 with ILC. My tumor was 4.8 cm with two positive nodes. One node had extranodal extension. My MO ordered the mammaprint test which came back low risk. So he said no chemo was needed. I went for a follow up to talk to him about some tamoxifen SE’s and he made a statement that stopped me in my tracks. He was speaking to the point of me possibly stopping tamoxifen. He said that some would argue that at 5 cm I should have had chemo despite my mammaprint results ( combined with my age and node status). I feel that he was trying to convince me how important he felt the tamoxifen is for my treatment, but it pissed me off that wasn’t brought up when the chemo decision was being made. So I guess I share this to say find an MO you completely trust and you will make the best decision for yourself. I am so sorry any of us have to deal with these sucky decisions

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 1, 2020 07:43AM dots74 wrote:

Dani444 thank you so much for your reply. I’m confused though, are you wishing you had done chemo?

Dx 1/6/2020, ILC, Right, 5cm, Stage IIIA, Grade 1, 2/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 7/27/2020 Femara (letrozole)
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Mar 1, 2020 08:19AM - edited Mar 1, 2020 08:19AM by claireinaz

At the time I was dx, the protocol was to recommend chemo with + nodes. Since I had 6 positive out of 11, I wanted every bit of tx I could get the first time around, actually--didn't want to leave anything to chance and wanted no regrets later, if I have a recurrence. I knew I could handle chemo (and I did), and didn't feel I was being overtreated. I did get a second opinion at MD Anderson, and drove 3 hours one way for it, so I felt confident when I was told that the protocol recommended by my own MO was the same as what a big cancer center would recommend.

ILC hides from mammos regularly because of the way it grows, and often problems will be revealed to be larger when more investigation is done, after the initial sizing of a tumor. It's the nature of ILC which also seems to be slower growing ,but also has a bit higher incidence of later recurrence, compared to IDC. I also had dense breast tissue, which also lets ILC hide even more. Hence, the BMX and recon a year after my rads were done.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Mar 1, 2020 08:37AM dots74 wrote:

Claireinaz thank you so much for your response. I had a DMX because I wanted to be as aggressive as I could. I have just read so many studies that say chemo could possibly do more harm than good with ILC, even with positive nodes. My major problem with the plan my oncologist decided on is that he was in a huge rush to get my port placed and start chemo right away. I just had surgery two weeks ago. I still don’t feel like I’ve bounced back from surgery yet. Do you feel like there should be a rush to chemo? Taking time for a second opinion wouldn’t put me at a higher risk?

Dx 1/6/2020, ILC, Right, 5cm, Stage IIIA, Grade 1, 2/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 7/27/2020 Femara (letrozole)
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Mar 1, 2020 08:46AM BevJen wrote:

Dots74,

Question regarding waiting for a second opinion -- I had my bilateral mastectomy in early December of 2003. I was supposed to start chemo as soon as possible, once I had healed. My recollection was that my docs wanted to wait for about 6 weeks so that I could heal, get drains out, etc. Lo and behold, I got a nasty infection in one side. Had to go and see an infectious disease specialist when my breast surgeon couldn't figure it out, even after going back in. Finally started chemo in mid-February. I think it was at least 8 weeks after my surgery, if not 9. At that time, I remember that I got information from both the BS and the MO that there were some studies saying I was still in the range of acceptability for timing of start of chemo.

You can check with your MO and see or do some research on this (I think I did research it at the time) and that may put your mind at rest about seeking out a second opinion. Even if it's the same recommendation, you will have the peace of mind that you checked into it. And I agree with you -- it's probably crazy that your MO wants you to start chemo, get a port, etc., while you still have drains in.

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Mar 1, 2020 08:55AM dots74 wrote:

Thank you BevJen. Because of your first response I am asking the surgeon to refer me to Cleveland clinic. It’s about 5 hours from here, but we have family there, so that helps. You have been more helpful than you know. I know it’s going to be expensive, but I want the best.

Dx 1/6/2020, ILC, Right, 5cm, Stage IIIA, Grade 1, 2/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 7/27/2020 Femara (letrozole)
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Mar 1, 2020 03:10PM BevJen wrote:

Dots74,

Glad that I could help someone else out. Cleveland Clinic is an excellent choice! And it's great that you have family there. Good luck getting that second opinion and hope it gives you some peace of mind.

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/4/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Mar 1, 2020 03:45PM Dani444 wrote:

Ugg, sorry that came off confusing. What I regret is not knowing that at 2mm more chemo would have been on the table. That was not even mentioned at my appointment to decide on chemo. I regret not getting a second opinion to be sure, but at the time my head was still trying to wrap around the fact that I had positive nodes. Going in we thought they all looked good on imaging. I don’t necessarily wish I had done chemo, I just wish I would have felt more informed and part of the decision.

DX @ 46, premenopausal, mammaprint low risk Dx 8/21/2018, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 2/3 nodes, ER+/PR+, HER2- (IHC) Surgery 10/25/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Silicone implant Radiation Therapy 12/6/2018 Lymph nodes, Chest wall Surgery 8/20/2020 Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 1, 2020 04:32PM dots74 wrote:

danni44 I sooooo get that. I want all my information and I help make the decision. Good thing is, most research is pointing to exactly what you did.

Dx 1/6/2020, ILC, Right, 5cm, Stage IIIA, Grade 1, 2/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 7/27/2020 Femara (letrozole)
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Mar 1, 2020 05:30PM JRNJ wrote:

Dots74, I think you need a second opinion for peace of mind. I've been told with lobular, a few weeks won't make a difference. I went for 3 opinions because I wasn't happy with the first two. But in my case I was fighting for chemo. I had 2 positive nodes, LVI and extracapular extension. KI67 of 18%, Oncotype=15. But my ILC tumor was smaller than yours, but pleomorphic. I had a huge LCIS. First Dr. said I don't know what to do with you and sent me for another opinion. Second at an NCI facility said NO CHEMO for estrogen positive cancer and low miotic rate, because hormone therapy will take care of it, regardless of node status. I think she was biased due to involvement in ongoing, not finished yet trial for node positive cancer. Third opinion from Sloan said YES CHEMO. But recommended 8 treatments of CMF biweekly, a less toxic blend. I think it is a good middle ground, if you really don't want to do the harsher chemos. Althought I still second guess every decision, if I am going to suffer chemo side effects anyway, maybe I should have done the stronger one? I started chemo 10 weeks after surgery. I have one treatment left. The old CMF regime was every 3 weeks. The Dr. was right to due dose dense. The first week has been a little rough, but I usually feel ok the second week. No nausea or neuropathy, but other side effects from chemo and neulasta. Standard protocol is chemo before radiation. I don't know why. I'm doing radiation after chemo. Chemo can be "less" effective for lobular, but it can still be effective. I also read tamoxifen may be less effective for lobular. NCI recommended a few years on tamoxifen than AIs (I am premenopausal at 54). Sloan recommended straight to AIs, as they have been shown to be more effective than Tamoxifen, with Lupron to suppress ovaries. I am actually planning on getting ovaries removed, don't want to be on another medication that might not work. And ditto what Claire said about ILC being sneaky and hard to detect... That is also why I went with bmx. They also didn't see my node involvement until after surgery, 3 mm and 2mm. ILC spreads in a sneaky way, that worries me. I am skeptical of Oncotype for node positive, the trials are still ongoing that is why they don't use numerical recommendation like they do for node negative. "No apparent benefit". Sloan Dr. agreed. I don't think it should be all based on Oncotype, which seems to be what's happening, but I do think it will help in the decision process and maybe on which type of chemo. Especially if they are recommending ACT for you.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/2/2019 CMF Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/4/2020 Aromasin (exemestane) Hormonal Therapy 8/6/2020 Arimidex (anastrozole) Surgery 8/25/2020 Prophylactic ovary removal
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Mar 1, 2020 11:44PM lisa137 wrote:

I tried to reply to your message, but it said you weren't accepting private messages, so I'll just reply here:

Oncologists seem to always start chemo as soon after surgery as they can; I gather that there is a window of opportunity and the longer you wait, the less effective the chemo is. You should certainly have time to get a second opinion though, assuming you can get an appointment promptly.

The reason that I personally would go ahead with chemo, knowing what I know, is the combination of these two things:


First, a lady who had chemo at the same time I did, and who also had ILC, had a really large tumor. Larger than mine. She had neoadjuvant chemo, and although it did not disappear the tumor entirely, it did get it down small enough that she was able to have a lumpectomy rather than a mastectomy. So, in at least some cases, chemo IS quite effective on ILC. She's living proof of that.

Second, once you've had surgery and already know that at least one lymph node was involved, the chances are there that cancer cells are floating around in your body, having gotten out of the area via the lymph system. The reason for having chemo is to mop up those cells so that they can't settle down any place and start a new tumor. (This is also, I think, why oncologists are in a bit of a hurry to get chemo started.)

So, knowing these two things: That chemo absolutely can be effective against ILC, and that the job of chemo is to kill off cancer cells that escaped the breast area via the lymph system, I personally would know that I wanted chemo. Granted, I had more positive nodes than you, and at least one of my nodes had been completely replaced by cancer, but, even if I had only had one positive node, I personally would want chemo simply because, later on down the road, if the cancer came back, i would not want to agonize myself by wondering "If I had gone ahead with chemo, would the cancer have come back?"

My personal attitude towards breast cancer and whether or not it will come back is this: If it ever does come back, I want to know that *I* did everything I could do to prevent it. No regrets.

Everyone is different though, and you must do whatever feels right for you. All any of us can do is tell you what feels right for us.

I'm a drive-by poster, so if you want to respond to me, or ask a question, send me a PM! Dx 9/26/2013, ILC, Left, 5cm, Stage IIIC, Grade 2, 11/22 nodes, ER+/PR+, HER2- Surgery 10/13/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 5/6/2014 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/24/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 9/22/2014 Femara (letrozole)
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Mar 2, 2020 06:21AM dots74 wrote:

thank you JRNJ and Lisa137. I will take what each of you have said and arm myself to go into my post-surgery appointment today. I am only16 days out from my mastectomy and really feel as though I have time for a second opinion at a larger center. ILC is slow growing and I do want to have the time to weigh some options. I have so little control in this whole situation, so I want to use the part I do have.

Dx 1/6/2020, ILC, Right, 5cm, Stage IIIA, Grade 1, 2/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 7/27/2020 Femara (letrozole)
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Mar 3, 2020 08:34AM 10110101 wrote:

my current onco and several large studies show chemo is much less effective for ilc (2% complete remission) vs idc (15% complete recovery). if i could do my treatment over i would have mastectomy and aromatase inhibitors only. i did chemo 5 years ago and have not recovered from yet and it was not effective because i got a second cancer (bilateral) after chemo. i warn caution, but who know if there was a benefit to chemo that i do not understand.

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Mar 3, 2020 08:42AM - edited Mar 3, 2020 08:45AM by claireinaz

Taking time for a second opinion will not put you at risk for anything. I was dx 9/29, and didn't begin chemo till November 3. I figured that the excisional biopsy got out all the c. anyway, and chemo was the clean-up. Again, + lymph nodes were a game-changer for me. I had 6, and that merited chemo. Get that second opinion! <3


Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Mar 3, 2020 08:51AM dots74 wrote:

I want to thank each and every one of you for helping me here. I’m getting a second opinion at Cleveland Clinic. I feel good about going to a larger cancer center with more specialized care. If they agree with the treatment plan, then that’s what I’ll do. My surgeon did think a second opinion was warranted in my situation.

Dx 1/6/2020, ILC, Right, 5cm, Stage IIIA, Grade 1, 2/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 7/27/2020 Femara (letrozole)
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Mar 3, 2020 02:27PM JRNJ wrote:

Dots74 good luck. I know how hard it is to make these decisions.

101, I think a cancer in the other breast is considered a new primary and not from the original. and Sloan recommended cmf for me due to ilc because it has less permanent side effects. But I’ll never really know if I needed it or if I should have done stronger chemo. Sorry about Your side effects and recurrence.We’re you on AIs?

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/2/2019 CMF Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/4/2020 Aromasin (exemestane) Hormonal Therapy 8/6/2020 Arimidex (anastrozole) Surgery 8/25/2020 Prophylactic ovary removal
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Mar 8, 2020 11:09PM OnTarget wrote:

They weren't going to give me chemo at first, but after a second opinion and a lot of talking, I ended up doing 4 rounds of TC. My KI67 was 40% though, and my oncotype was 16. I feel that the high KI67 made it more likely that chemo would have a useful impact on my cancer, and my age and risk level had me at about a 7% risk reduction benefit from chemo, so I was like "sign me up"!

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/5/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 9, 2020 06:43AM dots74 wrote:

I have my follow up in Cleveland on Friday. I appreciate everyone’s feedback so much. I will let you guys know what I find out.

Dx 1/6/2020, ILC, Right, 5cm, Stage IIIA, Grade 1, 2/9 nodes, ER+/PR+, HER2- (IHC) Surgery 2/13/2020 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 7/27/2020 Femara (letrozole)

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