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Topic: Looking for info after worse surgical pathology than expected

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

Posted on: Oct 30, 2021 06:30PM - edited Oct 30, 2021 06:34PM by Jen2957

Jen2957 wrote:

I'm feeling so defeated and overwhelmed today. I was given my surgical pathology from the unilateral skin and nipple sparing mastectomy at my one week surgical post-op appointment on Thursday, and I am still reeling from the results. I am just looking for information on how all of the new characteristics of my cancer work together to affect my overall survival and recurrence risks. I am REALLY struggling emotionally right now and am trying to make sense of the new information as I wait to see my oncologist 9 long days from now.

Background: Clear 3D mammogram on October 30, 2020 (actually one year ago today). I began to see an odd indentation on my breast with a lump above it sometime in late spring. Waited a bit to see my doctor because I thought it may have been an injury from carrying metal fence panels that hit that same spot as I carried them. Ultimately, saw my doctor Aug 6, and got a diagnostic mammogram with ultrasound Sept 2. Four Core Needle Biopsies on Sept 16.

Original Pathology from Biopsies:
Ultrasound-assisted CNBs showed two tumors: one 7mm and one 10mm of grade 2 IDC surrounded by intermediate grade DCIS.
ER/PR+ >90%; HER2-; Grade 2 IDC with intermediate DCIS.
Lymph nodes appeared normal.

MRI prior to surgery this month showed one 15 mm tumor with extensive enhancement around it and normal-appearing lymph nodes. The extensive enhancement was thought to likely be DCIS. While I fully understood that things could change once the surgical pathology was completed, I was not prepared for the extent of my disease. I went from expected Stage 1 (maybe 2a) to a Stage 3a. Kind of a gut punch.

Surgical Pathology:

-The IDC tumor was absolutely huge! It turned out to be a 55 mm tumor with an additional 55 mm area of DCIS. -1/3 sentinel nodes had 2.2 mm of macroinvasion.
-No Extracapsular Extension.
-Lymphovascular invasion present.

Margins were not completely clear- they said they took as much tissue as they could take during surgery, but bc the diseased area was so large and I am thin with smaller breasts and less breast tissue to spare, the margins ended up not being fully clear:
-unifocal IDC anterior-inferior margins involved over a span of 3mm (other margins were posterior @2.1mm, anterior-superior @1.5mm, nipple @10mm)
-unifocal DCIS anterior-inferior margins involved over a span of 3mm (other margins anterior-superior @1.8, nipple base 0.3mm over 4mm span). Comment on final DCIS margins: in addition to the positive focus for in situ and IDC, DCIS extends to within 2mm of anterior-inferior margin over a 40 mm span.

The tumor's features (some changed from biopsy to surgical pathology):
-55mm IDC with cribriform features.
-Grade 1 (down from Grade 2 on biopsy)
-ER+/PR+ >95%; HER2-; Ki67 5%
-55mm DCIS mixed with IDC throughout. Cribriform and solid.
-DCIS is negative for extensive intraductal component (EIC).
-DCIS grade 2; necrosis present, central (expansive comedo necrosis).
-DCIS = 50%.
-Allred Score 8


“Enjoy the little things in life because one day you`ll look back and realize they were the big things.” ― Kurt Vonnegut Surgery 10/21/2021 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 10/28/2021, DCIS/IDC, Right, 5cm, Stage IB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery Radiation Therapy Hormonal Therapy Aromasin (exemestane)
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Oct 30, 2021 06:43PM ElaineTherese wrote:

Hi!

Why don't you use the Predict tool?

https://breast.predict.nhs.uk/tool

The positive node might mean radiation, but overall, your prognosis probably won't change that much. ((Hugs)) It's always hard to find out that things were worse than expected.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Oct 30, 2021 07:39PM Beesie wrote:

Jen, I'm so sorry you've had this shock.

Did your surgeon confirm the size of the IDC component? I ask because I find the pathology report to be unclear.

As I read it, it's possible that you have a 55mm IDC tumor and a 55mm DCIS tumor.

Alternately, it's possible that you have a single 55mm tumor, which is 50% IDC and 50% DCIS. What leads me to this second possibility are the statements "Negative for extensive intraductal component" (suggesting that there isn't a separate area of DCIS), "% of DCIS: 50%" and "DCIS is admixed with invasive ductal in all areas".

If the amount of IDC is only 1/2 of the 55mm tumor, then your pathologic prognostic stage could be Stage IA, or possibly IB, if the grade is counted as grade 2 because of the biopsy.



But even if your invasive tumor is 55mm, because of the favourable ER, PR, HER2 and grade, the pathologic prognostic stage is Stage IB, whether the tumor is assessed to be grade 1 or grade 2.



The reason this alternate methodology of staging was introduced in 2018 is because tumor size and nodal status, while important, don't give the whole picture. This new staging aims to provide more a accurate prognosis by also incorporating grade and hormone status. By adding these elements, the prognosis of your Stage IIIA cancer, based on TNM staging, becomes more like a Stage IA or IB cancer.

Hope that helps!

Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Oct 31, 2021 01:52AM Rah2464 wrote:

Jen sorry to hear you received such a difficult change in pathology upon surgical excision. It is so difficult to face different information when you have somewhat processed a direction in your mind. I am with Beesie, your path report is a little confusing for the layperson to muddle through. It appears to read to me that you have a tumor that is 50% DCIS/50% IDC . I am so glad you reached out to this forum, thank goodness we have a resource on here like Beesie who can put things into a different perspective. ((Hugs))

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 31, 2021 06:27AM Jen2957 wrote:

ElaineTherese- thank you! I have definitely run the Predict calculator and a couple of others (CancerMath, CTS5, and the Tuft’s radiation calculator). They definitely provide some good information to add to the whole picture.

Beesie and Rah2464- Thank you so much! I, too, have been unclear on the IDC/DCIS amounts. The designation of pT3 tumor, unfortunately, does nothing to clarify since it fits that descriptor in either scenario, I’ve been operating on the assumption of the 55mm + 55mm scenario just because I would rather overestimate than underestimate. Beesie, thank you so much for posting the 2018 Prognostic Staging chart. It’s funny, I’ve seen you post that several times and even told a friend about it, but I guess I was so blind-sided by the new pathology results that I lost my ability to think rationally. It brought me such a sense of hope last night when I read your post, Beesie. Can you help me understand the significance of the positive margins, lymphovascular invasion, and low Ki-67 value of 5%? I am under the impression that the first two are very bad prognostic indicators, but the Ki-67 - though not perfect- is a positive prognostic factor when it is significantly low like mine. What I can’t seem to find is a way to synthesize the individual studies that investigate the impact of each of the factors so that I can understand how they balance one another’s positive and negative effects. I guess that is the purpose of the new staging system and existing calculators, but they don’t seem to reflect margin status and lymphovascular invasion in particular.

I find great comfort in data and research; it is really the only thing that seems to give me any sense of control right now, so I am so thankful to have such wonderful resources like you to help me process and just try to maintain my sanity

“Enjoy the little things in life because one day you`ll look back and realize they were the big things.” ― Kurt Vonnegut Surgery 10/21/2021 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 10/28/2021, DCIS/IDC, Right, 5cm, Stage IB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery Radiation Therapy Hormonal Therapy Aromasin (exemestane)
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Oct 31, 2021 07:23AM MSWife wrote:

sorry you find yourself here! You and my husband have similar tumor characteristics.

In terms of your questions above, it does appear you have one positive margin, but your path report is actually a bit confusing. Perhaps they might go back and take a bit more tissue?

Lymphovasc invasion significance is a tough call - I can’t seem to find any consistency in terms of good vs bad prognosis. I think the general consensus is that it is a poorer prognostic sign, but there isn’t even a clear understanding of how mets and recurrence occur, and there certainly seem to be peopleout there that have unfortunately had recurrent disease despite a very ‘favourable’ initial diagnosis (small tumor, no LVI etc).

Ki 67 is a marker of cell proliferation but hasn’t quite made it to prime time yet in terms of its prognostic power. A lower number is in line with your overall tumor grade of 1, which is favorable (slower growing, more indolent tumor). Bad news about lower grade, highly hormone receptor positive is that they tend to not respond as well to chemo. Good news is they are often less aggressive and hormone treatments are the bigger gun anyways.

Let me know if you have any questions!

A member to gather info for my husband ❤️ Dx 3/16/2021, IDC, Left, 2cm, Stage IIIA, Grade 1, 18/20 nodes, ER+/PR+, HER2- (IHC) Surgery 3/25/2021 Lymph node removal: Left, Sentinel; Mastectomy: Left Chemotherapy 4/26/2021 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/19/2021 Lymph node removal: Underarm/Axillary Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Oct 31, 2021 09:56AM - edited Oct 31, 2021 09:57AM by wondering44

Jen2957

I had the same thing happen with my dx. It was small in the beginning and much more after the surgical path results. I too did the nipple sparing mastectomy. The original dx was overwhelming and scary. The surgical path was more than that on me. Honestly, I didn't cry until my last visit with my MO.

biopsy results - 2.2 cm, 1.1 cm, and .5 cm IDC (3 tumors) with 1 cm DCIS.

Surgical path results - 8.5 cm DCIS "positive for extensive intraductal component" and 8.5 cm IDC (one tumor). Clear margins less than 1 cm. Microcalcifications found in the benign breast epithelium.

My MO explained that, more than likely, I won't respond well to chemo due to my Oncotype score of 8. She explained that no chemo is better for the body long term, and if it can be avoided, it should be. Talk to your MO about recurrence. I discussed it with mine on my last visit. She helped me understand why she was adamant about radiation and hormone treatment with my path results (I've been a challenge as a patient on following all recommended treatments). Beesie has some great posts/info. on this too.

The cancer dx is a process of learning and getting educated every day. It feels like it changes at each appointment. If I have a bad day, I come here to read the boards. I have found the people who understand the rollercoaster best are right here riding on that cancer rollercoaster too.

"I don't get to control my cancer. I do get to control how I choose to live each day with cancer." - Me Dx 7/8/2021, DCIS, Right, 1cm, Stage 0, Grade 3 Dx 7/8/2021, IDC, Right, 2cm, Stage IB, Grade 2, ER+/PR+, HER2- (FISH) Surgery 8/18/2021 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/23/2021, IDC, Right, 6cm+, Stage IIB, Grade 3, 0/4 nodes, ER+/PR+ Dx 8/23/2021, DCIS, Right, 6cm+, Stage 0, Grade 3, 0/4 nodes Radiation Therapy Whole-breast: Breast, Lymph nodes
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Oct 31, 2021 12:03PM Jen2957 wrote:

Wow! You guys are absolutely fantastic. I have been in such a gloom and doom mode for the past several days, and this has been a wonderful way to refocus my attention to being proactive in treating this thing. I feel like I’m waiting for someone to tell me, in the words of Monty Python, “I’m not dead yet.”

I just finished reading the Rxponder Trial data a moment ago; I was searching for some clarity on the indication of endocrine therapy only. I am almost 51, but premenopausal, so I’m on the cusp of the age cut score for many of the trials and the research out there. I do only have one ovary due to an ovarian torsion about 8 years ago. They did not take the other ovary bc I had an ischemic stroke in 2007, so there was concern about throwing me into early menopause at that time. The history of ischemic stroke has been a big concern for me when it comes to both chemo and endocrine therapy. The idea of having to subject my body to both is frightening for me, though I would certainly be willing to do so if the benefits outweigh the risks! I need to go poke around in the comorbidities group to see if there is anyone else out there with a similar issue.

Wondering44- I’m so sorry you had to take that same gut punch by hearing those results after going in with what you thought was a pretty good handle on what the potential surprises could be (if any), only to be blindsided by something completely different? I’m learning very quickly to expect the unexpected. So did your pathology report look like mine as far as how the IDC and DCIS amounts were reported? I don’t my oncotypedx score yet, but am eager to get that info. I am certain that I will receive radiation and will see the radiology oncologist two days after I see my MO. If chemo will not be of benefit, I certainly don’t want to subject myself to it since I have a history of stroke. However, I know that comes at a trade off as well.

MSWife- I am so sorry that you are having to experience breast cancer from the partner’s perspective. One of the first reactions I had to my diagnosis was an overwhelming sense of sadness for my husband, daughter, and parents who have to bear witness to this whole process. I witnessed my very healthy, nurse practitioner stepmother succumb to a very rare type of cancer shears ago and it is such a helpless feeling. Thankfully, we have many more treatment options available for this beast, but it still takes such a toll. As for the taking extra tissue, my surgeon said they took everything they could take without taking the skin as well. I believe that the referral to radiology is what they feel will be the best management option. That Ki-67 component is definitely a conundrum of sorts. I did read that it is most reliable when reported as 5% or below and 30% or higher; apparently, these values are reached more reliably and are more consistent among testing facilities. I’m curious, if you don’t mind sharing, if your husband was given chemotherapy due to the extent of nodal involvement he had? Since we are definitely quite similar in our tumor characteristics, I just wondered what the treatment decision was based on. Did he have an oncotypedx or similar test done on his tumor? I will be cheering you both on as you move forward in his treatment!





“Enjoy the little things in life because one day you`ll look back and realize they were the big things.” ― Kurt Vonnegut Surgery 10/21/2021 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 10/28/2021, DCIS/IDC, Right, 5cm, Stage IB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery Radiation Therapy Hormonal Therapy Aromasin (exemestane)
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Oct 31, 2021 12:48PM MSWife wrote:

we’re in Canada, so we don’t get quite the same work up that people seems to get in the US system.

No Oncotype because of the large number of lymph nodes that were positive. He didn’t have a Ki 67 either as they didn’t think it would change management.

He had a mastectomy and sentinel lymph node biopsy, then had chemo, and then went back for a full axillary lymph node dissection. The chemo had very minimal effect. I suspect his ki 67 would be low based on the tumor grade and chemo effect, but the involvement of the lymph nodes is of course a bit concerning, because it doesn’t seem to fit to me (low grade but lots of positive LNs). I will say that he unfortunately had a lump for quite some time (at least 18 months) before he got it checked out.

The predict tool is very helpful to try and determine the benefit from chemo based on your stats - it looks like based on the current info you have, chemo might add ~5% benefit over 15 years.

I’ll keep you updated on how things go for him!

A member to gather info for my husband ❤️ Dx 3/16/2021, IDC, Left, 2cm, Stage IIIA, Grade 1, 18/20 nodes, ER+/PR+, HER2- (IHC) Surgery 3/25/2021 Lymph node removal: Left, Sentinel; Mastectomy: Left Chemotherapy 4/26/2021 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/19/2021 Lymph node removal: Underarm/Axillary Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Oct 31, 2021 01:32PM Beesie wrote:

Jen, A couple of things.

As you probably know, the anterior inferior margin is the margin by the skin near the bottom of your breast. So as your surgeon said, the only way to better clear that margin would be to remove the skin. But rads is a good option so I suspect you are right that rads will be recommended. As close margins go, my thought is that having a close margin by the skin (I had 1mm margins by the skin with both my MXs) is probably the best close margin to have, because a recurrence right up against the skin will be very easy to catch while it's tiny. Skin is smooth and even the tiniest nodule can be felt when you run your hand over the skin. Of course hopefully you won't have to deal with a recurrence.

Ki-67... some hospitals report it on the pathology report and others don't. On it's own, it generally does not play into treatment decisions. But Ki-67 is part of the Oncotype assessment. Therefore your low Ki-67 will help drive your Oncotype score down, as will your very high ER% and PR%. There are lots of other factors that go into the Oncotype score so anything is possible, but 3 strongly favourable factors are a good sign. FYI, this is the Oncotype formula:



LVI... I too have seen studies that suggest that the presence of LVI may have a negative impact on prognosis but I found it really interesting that when Pathological Staging was introduced in 2018, after years of work and debate and discussion, LVI was not included as a factor that affects prognostic stage. I also found a study that separated LVI into lymphatic invasion and vascular invasion. By my interpretation, this article found that while lymphatic invasion is associated with nodal involvement, it's vascular invasion that has a negative prognostic value. Unfortunately on pathology reports LVI is not separated between "L" and "V" but since you have the one positive node, it's not illogical to think that your LVI might be lymphatic, with no way of knowing if there is also vascular invasion or not. https://ar.iiarjournals.org/content/34/3/1255


Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Oct 31, 2021 08:24PM wondering44 wrote:

Jen2957

My path report was different.

I had two IDC masses identified. The tissue between the masses contained IDC and DCIS, making it a single tumor measuring 8.5 cm in greatest extent (greatest dimension of largest invasive focus 8.5 cm). DCIS was a major component within the IDC and present in the surrounding breast tissue/this is indicative of EIC. EIC was identified as positive further down the report. Microcalcifications in benign breast tissue. Ki-67 - Unfavorable. Negative for lymphovascular invasion. Negative for perineurial invasion. Margins negative for DCIS and IDC. No node involvement. I consider myself lucky that cancer to date has been diagnosed as staying put in the breast—another reason why no chemo for me. I start six weeks of radiation tomorrow.

I had a whole-body bone scan and a CT with contrast for the chest, abdomen, and pelvis. The scans found no evidence of metastatic or distant metastatic disease. I asked my MO for the scans. These were not offered at diagnosis. I was glad to have them done. It took away a lot of the stress and fear from wondering about the "unknowns" that come with the diagnosis.

Take time with your doctors to get each question you have answered. You will more than likely have a new list of questions within a few hours after your appointments (more wondering and waiting). I met with two of everyone before starting treatment Two Breast Cancer Surgeons, two Medical Oncologists, and two Radiation Oncologists. I scheduled an appointment with the recommended plastic surgeon that I canceled. I contacted my Plastic Surgeon and talked with him about reconstruction. I know his work, and he tells me no. That was one of the "NOs" he sent my way. No reconstruction until I have completed surgery, radiation and have fully healed from it. He postponed my reconstruction until next year after we talked about doing it in November of this year. He was in my mastectomy surgery and made that call while I was on the table. I understand now why he decided that. Getting two medical opinions for each part of the treatment helped me know that I was with the right doctor or each step of the process, which helped to relieve stress from wondering too.

You will find your way through the wondering and waiting. Many warm thoughts your way during your treatment.


"I don't get to control my cancer. I do get to control how I choose to live each day with cancer." - Me Dx 7/8/2021, DCIS, Right, 1cm, Stage 0, Grade 3 Dx 7/8/2021, IDC, Right, 2cm, Stage IB, Grade 2, ER+/PR+, HER2- (FISH) Surgery 8/18/2021 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/23/2021, IDC, Right, 6cm+, Stage IIB, Grade 3, 0/4 nodes, ER+/PR+ Dx 8/23/2021, DCIS, Right, 6cm+, Stage 0, Grade 3, 0/4 nodes Radiation Therapy Whole-breast: Breast, Lymph nodes
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Nov 1, 2021 02:42AM Rah2464 wrote:

Jen I hope your Oncotype score comes back really low as well. I thought I would suggest if you are interested in getting a second opinion on things, UC in Cincinnati is a well recognized treatment center and just a shortish drive away. In particular, Dr Elyse Lower (pronounced as though you are saying "ow") is a passionate oncologist who treats a lot of my friends with complex cases. There is also the James in Columbus, but that would be a bit of a hike to get up there.


Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 1, 2021 08:49AM Jen2957 wrote:

MSWife- Please definitely do keep the updates coming! Ah- that makes sense for the chemo decision; I’m sure finding out it had little effect was very frustrating. One of the things I’ve mentioned being of concern is my history of stroke and ongoing hypertension issues (everything started with severe preeclampsia and HELLP Syndrome and things just stuck around after that). I know I will receive endocrine therapy and that has its own cardiovascular risk factors, so adding chemo and it’s additional risk factors concerns me IF the effect will be minimal. I agree on the positive lymph nodes- seems very incongruent. I can imagine that breast cancer was likely not really on the radar for him; women are reminded to look for BC signs and symptoms constantly, but men only hear a passing mention of it being a “rare” possibility.

Wondering- It really is amazing how much the independent characteristics vary from one person to the next within the same general diagnosis umbrella! I’m very glad your cancer has remained local- definitely a win! My positive node is one thing I really wish I didn’t have. It sounds like you have more checks in the win column, even after the shock of the increased tumor size. I have no doubt getting the scans done and seeing that they are clear was a huge relief. I can imagine the wondering would have driven you crazy and the waiting for results probably DID drive you crazy. I didn’t have second opinions for each doctor, but did get second opinions. It really helped to make me feel like I not only had some control in a helpless feeling situation, but that I could confidently put my trust in the team I am being treated by and not have to second guess myself down the road. As for reconstruction, Hopefully the wait will eventually be completely worth it and your results will be even better than you could have imagined. I have this tissue expander now (10 days post-op) and see my PS Thursday. I suspect everything will be put on hold for me for now as well. For now, I’m just super excited to get the stupid drain out!!! Lol

Rah- Thank you for the recommendations! I did get two opinions - one from University of Ky and one from Norton in Louisville (where I have chosen to go). My MO, Dr. Hargis, came highly recommended and is amazing, so I was very lucky to have the opportunity to see him. I still think it is very helpful to have additional recommendations- esp so close by- in case I feel like I need another look as well! I appreciate it very much and will add Dr. Lower to my notes.

Beesie- Excellent point about the location of the positive margin- I hadn’t really thought about that being the case, so thanks for pointing that out. I am under the impression that Grade 1 tumors are most often correlated to low Oncotype scores as well, is that something you would agree with? And if the Oncotype does come back with a low RS, then with my other characteristics, chemo would likely not be strongly recommended bc of its lack of expected efficacy?
To clarify, because it seems almost too good to be true even though it’s obviously exactly the point of the creation of a Prognostic Staging System, I can now look at the DFS and OS for Stage1B tumors instead of Stage 3A to get the more accurate idea of what to expect from my disease. I’m hesitant to allow myself to do so after I was so shell-shocked by the revelation of the size, lymph node involvement, and LVI; the possibility of this not being a more advanced stage and therefore worse prognosis is difficult to wrap my head around- in a good way in this case- and I don’t want to set myself up for further disappointment.




“Enjoy the little things in life because one day you`ll look back and realize they were the big things.” ― Kurt Vonnegut Surgery 10/21/2021 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 10/28/2021, DCIS/IDC, Right, 5cm, Stage IB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery Radiation Therapy Hormonal Therapy Aromasin (exemestane)
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Nov 1, 2021 09:42AM Waves2Stars wrote:

Jen, I had lymphovascular, perineural invasion, and highish ki-67. Both my MO and incredible RO said Oncotype trumps those things. RO said ki-67 closely aligns to Oncotype. My ki-67 was lower in the surgical path, which was one point off from my Oncotype! Correlations are pretty cool, but still no guarantee. MO did say it would be important for me to stay on endocrine therapy to stave off the possibility of mets because of the invasions. I assume you will probably have radiation to clean up the dirty margins and node Your oncologist should have a plan that would be safe for your heart issues, and has probably treated many women with history and/or risk of stroke. It is hard not to jump to the worst case scenarios when you've had tough health experiences, like you have! I hope you have a little peace this week!

DX @ 47. IDC 2.1 cm, DCIS 2.8 cm, Luminal B Dx 7/19/2021, IDC, Left, 2cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 9/2021, DCIS, Left, 2cm, Stage 0, Grade 2, ER+ Surgery 9/1/2021 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Stacked DIEP flap Hormonal Therapy 9/20/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 9, 2021 08:34AM Jen2957 wrote:

I had my post-op follow-up with my MO yesterday.

Waves2stars- you were absolutely correct and my MO echoed what your MO and RO said about LVI. He was wonderful about acknowledging and validating my concerns about stroke risk and used the phrase “if we choose” each time he explained an option.

Beesie- He confirmed that my official stage is kind of both a 3A and 1B…his written plan actually includes both stages: Anatomically, it is a stage 3A tumor because of its larger size of 5.5 cm, one positive sentinel node, and no expected distant metastasis; HOWEVER, because it has so many favorable characteristics, it is, as you pointed out, a Prognostic stage 1B. He confirmed that my 5 year and 10 year prognosis are based on Stage1B, not 3A! He also clarified that the tumor was one 55mm area that was equally mixed with IDC and DCIS. It is still considered pT3 be of there being IDC throughout. He was not concerned with the LVI and said that in my pathology report, it was determined by a five minute assessment by one pathologist and could vary if reevaluated. He had even called the pathologist that morning to further discuss this findings.

As far as a treatment plan, we discussed several options and the pros and cons of each. As suspected, due to the fact that there was evidence of positive margins left after surgery and that my tumor ended up being much larger than expected, I’ll definitely be receiving radiation therapy to eliminate any cancer cells that may have remained after surgery. I meet with the the radiation oncologist tomorrow. My plastic surgeon works with my RO frequently and said the plan will be to complete my tissue expansion and reconstruction first, then start radiation. Has anyone else had this kind of reconstruction before radiation?

As for chemo- I fall in a bit of a gray area due to the mixed characteristics of my cancer- favorable hormone status, Grade 1, and low proliferation rate BUT I’m premenopausal (will be 51 in a few weeks, so come on already!), have a 55mm tumor, one positive sentinel node, and a positive margin. The chemo itself, as well as the port, increases the risk of stroke and chemo would require me to discontinue the medication I take to prevent another stroke, so we decided to avoid chemo if possible. He ordered MammaPrint and IF the markers indicate a low risk as he expects, I will not receive chemo. I will have my one remaining ovary removed as soon as possible (one was already removed 10 years ago due to torsion from a hemorrhagic cyst), then start exemestane and zoledronic acid. He believes that if I am low risk, this plan should strike the safest balance of risks and benefits. I know aromatase inhibitors are not particularly pleasant for many women, but I suspect the side effects beat the hell out of cancer recurrence or metastasis. I’m going to be optimistic and hope my SE’s are minimal.

As we await the results of MammaPrint, I’ll have a full CT and bone scan to check for distant metastasis. If anything is found there, the plan will obviously change. I definitely don’t look forward to that fun wait between tests and results, but I’m glad he is being thorough.

I’m cautiously optimistic and absolutely feel the most relieved I've felt since this began. I'm still terrified to think about having to wait for more test results- especially regarding distant metastasis, but I feel comfortable taking a little break and just recovering from my mastectomy (18 days ago) and trying to enjoy everything I can with these annoying restrictions that restart every time I get my tissue expander "fluffed.”



“Enjoy the little things in life because one day you`ll look back and realize they were the big things.” ― Kurt Vonnegut Surgery 10/21/2021 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 10/28/2021, DCIS/IDC, Right, 5cm, Stage IB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery Radiation Therapy Hormonal Therapy Aromasin (exemestane)
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Nov 10, 2021 04:21PM REFLECTION77 wrote:

Hi Jen, I am happy that you have such a knowledgable and caring MD.. I

think that the fact you can communicate so well with him, (and he sounds so respectful)

is a major factor in your overall well being. Reading your posts is truly

an education for us all... You know what's going on and I understand why

you don't want a treatment that could be worse than the disease itself !!

Wishing you all the best in your treatment and recovery.

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Nov 10, 2021 06:50PM Beesie wrote:

Jen, I'm glad your appointment with the MO went well. And even more glad that you are relieved and feeling cautiously optimistic.

Nerdy

Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Nov 10, 2021 07:45PM Jen2957 wrote:

Thanks, all! I met my radiation oncologist this morning at my 7:15 appointment (7:15!!!!). He is a delight- just the most genuinely caring person who took time to go through piece by piece what the features of my cancer are and what tumor board discussed. He frequently asked if we had any questions and made me feel like a valued patient, not a case #.

Reflection77- I have genuinely been blessed by a connection that brought me to my highly sought after, research immersed oncologist, and the oncologist then helped connect me fill in the rest of the team with his first choice of who he deems to be the strongest in their fields. All of them have welcomed a collaborative, partnership decision making model, but they have also been very forthright with their recommendations for treatment options.

I will be getting whole breast radiation 5/week for 5-6 weeks, but the timeline is a bit fluid. I have bone and CT scans Monday the 15th- this will be my first full body scan for Mets, so it will likely be an anxiety-filled couple of days. Those results and the MammaPrint will determine once and for all of I need chemo. If not, then plastics will decide if I get fully completed reconstruction, then radiation or fully filled TE, then radiation, then implant placement. Either way seems reasonable, so I am on board with whichever they decide. The radiation schedule will be a bit intense, but he said he wanted to do the longer, slower pace with me to help preserve the best reconstruction outcomes. I look at it as trading 30 days of inconvenience for a lifetime of freedom from disease. Since the radiation is given M-F, I’m just going to think of it as a full-time job with crap pay, but the shortest work day ever! 😊

Beesie- you did such a nice job laying out OncotypeDX, I thought I would ask if there is a reliable source for MammaPrint info out there. Do low risk MammaPrint cancers typically share the same pathological features, or is it a much more elegant analysis of the 70+ genes? My tumor size and nodal status puts me in high clinical risk, but my MO expects my risk to be low. I just keep picturing my big ole 55mm tumor as a fat, lazy guy lounging around in my breast with only a little motivation to leave the “couch.” I will name him as soon as I think of something appropriate. And maybe after I find out he hasn’t been sneaking out and setting up shop in other parts of my body! Win

“Enjoy the little things in life because one day you`ll look back and realize they were the big things.” ― Kurt Vonnegut Surgery 10/21/2021 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 10/28/2021, DCIS/IDC, Right, 5cm, Stage IB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery Radiation Therapy Hormonal Therapy Aromasin (exemestane)
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Nov 11, 2021 07:11AM Beesie wrote:

Jen, I don't have much information on Mammaprint but here is what I believe to be the primary study on Mammaprint:

70-Gene Signature as an Aid to Treatment Decisions in Early-Stage Breast Cancer


In this study, "A total of 1550 patients (23.2%) were deemed to be at high clinical risk and low genomic risk. At 5 years, the rate of survival without distant metastasis in this group was 94.7% (95% confidence interval, 92.5 to 96.2) among those not receiving chemotherapy. The absolute difference in this survival rate between these patients and those who received chemotherapy was 1.5 percentage points, with the rate being lower without chemotherapy. Similar rates of survival without distant metastasis were reported in the subgroup of patients who had estrogen-receptor–positive, human epidermal growth factor receptor 2–negative, and either node-negative or node-positive disease."

Here is the chart that breaks down clinical risk vs. genomic risk by pathological features. I have highlighted the discordant group that have high clinical risk (as you do) but had low Mammaprint genomic risk:




Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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Nov 21, 2021 06:39PM Jen2957 wrote:

Well, isn’t this cancer thing a winding road with a scenic route of hell? Where to start? On Monday, I had a contrast-enhanced CT and bone scan just to check everything (since I had a large tumor and one positive node) while waiting for the MammaPrint. The CT showed a sub-centimeter sclerotic focus onT9, but bone scan ruled out any issue. The CT also showed a 4mm indeterminate lung nodule and a 28 mm heterogeneous, hypodense lesion in the liver. And down the rabbit hole of worry I went. The tests were ordered by my facility at a different one nearby so I could get in more quickly. I faxed the results to my onc’s office as soon as I received them and requested a disk that I will drop off Tuesday (all just to be sure he gets the info in a timely manner). I finally had decided to do everything in my power to allow myself to live in blissful ignorance for the holiday week and wait for my Dec 1 oncology appointment before returning to complete freak out mode, then…

This weekend, my breast surgeon called and said the tumor board discussed my case and they want me to go back for a quick surgery to remove the one positive margin left from surgery- about a half dollar size. My kind surgeon did tell me not to stress over the CT findings and that lung nodules are common in the Ohio Valley where we live and that there are also common benign liver lesions that my indeterminate lesion could be (as if I hadn’t researched every possibility like we all do). I am choosing to cling to that hope for now.

I am actually totally fine with the additional surgery bc they initially said they didn’t think they could do it, but -though certainly not important in the grand scheme of things- I am bummed bc my breast is finally looking very normal and almost healed from mastectomy and TE placement. Aside from TE fills, I was starting to feel a bit more like myself physically. I guess I will have surgery for my 51st birthday in a couple of weeks. Grrr…

If anyone needs me - I’ll be the wild-eyed, hot mess pacing along the ledge with a handful of turkey in her hand, trying to talk herself down. 😉


“Enjoy the little things in life because one day you`ll look back and realize they were the big things.” ― Kurt Vonnegut Surgery 10/21/2021 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 10/28/2021, DCIS/IDC, Right, 5cm, Stage IB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery Radiation Therapy Hormonal Therapy Aromasin (exemestane)
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Nov 21, 2021 09:51PM AliceBastable wrote:

Lung nodules here! My MO says until we start getting scanned, we don't know what kind of crud we've accumulated over the years - and the more years, the more crud. As long as they stay the same size over time, I just think of mine as barnacles I've picked up. I also have things show up on my liver, my spleen, and a few other places. Interior age spots. My liver is due to it being a fatty one. Good luck with your results, may they all be barnacles!

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Nov 22, 2021 02:37AM Rah2464 wrote:

Oh Jen hang in there! Lung nodules here, too - a bonus from living in Kentucky most of my life. I vote with AliceB that all are just barnacles. Glad to hear that the surgeon thinks they can go back in, sorry this has been such a rollercoaster ride.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 22, 2021 02:57AM gb2115 wrote:

What is it about Kentucky and the Ohio Valley that causes lung nodules?

Dx IDC in Oct 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes, Lumpectomy + rads + tam. Age 38. 5/21 Dx IDC. 1.6 cm ER/PR+, Her2 -. Gr 2. 2/2 nodes positive. AC/T. Age 42
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Nov 22, 2021 05:59AM - edited Nov 22, 2021 06:27AM by Jen2957

Alice- I love it! I will call them barnacles from here on. It really is encouraging to hear that “incidentalomas" really do happen and really can be benign. I'm at the point right now where I feel like every time I get a handle on things and have a plan set, something just takes my feet out from under me. I know that is something we all deal with, but I'm ready for a breather for a minute.

Rah- It is an absolutely beautiful place to live, but those seasons and gorgeous trees have their cost, huh? It's funny, my mom, daughter, and I have a little allergy check text group that we all share any allergy like symptoms we may be having; if more than one of us have similar symptoms, we know it's allergies and nothing to probably worry about cold, flu, or otherwise. 😂. Which region are you in? My husband is from western Ky, and I am from central Ky where we live.

GB2115- Apparently, as I have learned through this last little adventure, lung nodules can be caused by infections such as bronchitis, pneumonia, etc. They can remain as artifacts of those conditions as well. In the Ohio Valley, we have conditions that are perfect allergy-inducers: beautiful, but sneeze-inducing. In Kentucky specifically, we also have bluegrass and lots of ragweed- which equals lots of pollen. Louisville, near where I live, makes the top 5 worst allergy cities in the nation every year, I think. On the upside, we do have gorgeous trees, beautiful horses, and more barrels of bourbon than people (the vast majority of bourbon in the world is made here)! 😊

“Enjoy the little things in life because one day you`ll look back and realize they were the big things.” ― Kurt Vonnegut Surgery 10/21/2021 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Dx 10/28/2021, DCIS/IDC, Right, 5cm, Stage IB, Grade 1, 1/3 nodes, ER+/PR+, HER2- (IHC) Surgery Radiation Therapy Hormonal Therapy Aromasin (exemestane)
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Nov 23, 2021 02:11AM Rah2464 wrote:

Jen I am originally from south central Kentucky (close to Dale Hollow Lake) but now reside close to Cincinnati. I am in Frankfort often as my DH grew up there.

Wishing you all the best as you slog through this stuff.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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