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Topic: Recurrence while on Tamoxifen

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Sep 12, 2020 08:32AM

barbaraprevost4 wrote:

Hi, do you know if is possible to have a BCrecurrence while you are on Tamoxifen ? After 2 lumpectomies for DCIS I underwent a BMX on Aug 13/20 for DCIS. They found a 4mm IDC grade 1,missed by 2 ultradounds, 1 mammogram and 1 MRI. They also found 0.3 mm micromets in 1/7 nodes and lymphovascular invasion. ER + 95%. PR + 90%, HER -. The oncotype was not done as my MO told me the tumor is <5 mm. She also told me that in my case I don't need chemo and she prescribed Tamoxifen. I don't know if I need radiation yet. Thanks !

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Sep 12, 2020 10:38AM Sunshine99 wrote:

Wow, Barbara, that sounds kind of scary. I don't have an answer, but I just wanted to say that I hope you get some answers soon.

(((hugs)))

Cancer has progressed to my bones. I pray that it never enters my soul. Dx 11/2/2007, IDC, 3cm, Stage IIA, 0/3 nodes, ER+/PR+, HER2- Dx 3/26/2020, ILC/IDC, Stage IV, metastasized to bone, ER+/PR-, HER2- (FISH) Hormonal Therapy 4/22/2020 Arimidex (anastrozole) Radiation Therapy 5/5/2020 External: Bone Radiation Therapy 5/12/2020 External: Bone Targeted Therapy 6/10/2020 Ibrance (palbociclib)
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Sep 12, 2020 10:46AM Tmh0921 wrote:

Barbara

Unfortunately recurrences while on Tamoxifen do happen. My most recent diagnosis, while considered to be a new BC, occurred while on Tamoxifen. Tamoxifen reduces the chances of recurrence, but it can happen.

If you are uncomfortable with your oncologist’s treatment recommendations please get a second opinion.

Tracy

First Dx at 27 years old in 1999, 2nd Dx 2018, 3rd Dx 2019... Current Oncotype: 26 Dx 12/7/1999, IDC, Left, 1cm, Stage IB, Grade 2, 0/15 nodes, ER+/PR+ Surgery 12/22/1999 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 1/30/2000 Whole-breast: Breast, Lymph nodes Hormonal Therapy 2/1/2000 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 8/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/4/2018 Lumpectomy: Left Dx 9/7/2018, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 5/31/2019, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Surgery 8/5/2019 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/4/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/2/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Hormonal Therapy 3/24/2020 Femara (letrozole), Zoladex (goserelin) Surgery 7/15/2020 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 12, 2020 12:18PM barbaraprevost4 wrote:

Thank you Tracy and Sunshine99

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Sep 12, 2020 01:00PM Spookiesmom wrote:

Unfortunately it can happen. I’m stage 4 now, on Ibrance. My MO told me I could have reoccurrence on THAT! So far, after a year on it, I’m NED, but it still can come back.

Best wishes.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Sep 12, 2020 03:17PM MinusTwo wrote:

I would definitely get a second opinion since this is your third surgery. And I would talk to an oncologist about the chemo. Surgeon's cut - that's what they do. Oncologists treat the whole system.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Sep 12, 2020 03:52PM barbaraprevost4 wrote:

Thanks for your answers Spookiesmom and MinusTwo. The Tamoxifen was prescribed by the oncologist. During the meeting she also asked the senior oncologist's opinion. It has been difficult for me with the 2 previous surgeries for DCIS. I ended up with a BMX and IDC. I cannot understand how the radiologist did not see the tumor on the MRI done before the second surgery.

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Sep 12, 2020 03:54PM MinusTwo wrote:

Barbara - truly at this point I'd find a different oncologist for a second opinion.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Sep 12, 2020 05:23PM Beesie wrote:

"I cannot understand how the radiologist did not see the tumor on the MRI done before the second surgery."

Barbara, unfortunately a tumor as small as 4mm tumor often cannot be detected on imaging, even on an MRI. The diagnostic tools available to us today are far from perfect, and they usually cannot detect very small tumors.

As for having a recurrence while on Tamoxifen, unfortunately, as others have commented, it can happen. Tamoxifen reduces risk, it does not eliminate risk.

The issue with the Oncotype test is that it was not verified on patients with tumors smaller than 5mm - precisely because there aren't many patients with tumors this small, unless the tumor was an incidental finding along with a larger amount of DCIS - just as happened in your case. But let's say you had the Oncotype test done and came up with a score of 10. Below is a sample report I found on the Genomic Health site. It's for node positive; with micromets I think your Oncotype score would be assessed against the node positve scale, not the node negative scale, but I'm not sure because the NCCN Guidelines indicate that the Oncotype node positive results are not proven for those with micromets. And your micromet is only 0.1mm larger than ITC (which is node negative), so it's the smallest possible definition of being node positive. Confusing for sure.

For the average node positive patient with an Oncotype 10 score, the 9 year distant recurrence risk is 12%. But the "average" tumor size for a node positive patient was ~2cm, five times the size of your tumor. And the "average" node positive patient certainly had more nodal involvement than micromets. So with a 10 score but a pathology so different than the average (and with no one like you - with a tumor this small and with micromets only - in the study at all), is your risk also 12%? Or is it considerably less?

And if your Onctoype score was higher and for the "average" patient indicated a benefit from chemo, would that assessment apply to you too, with such a different diagnosis than anyone in the study? Almost certainly your risk would be significantly different.



I understand the frustration of not getting an Oncotype score, but I also understand why your MO didn't send for one. Given how different your pathology is versus the average in the Oncotype research, an Oncotype result might mislead rather than assist. So your MO has gone back to what MOs do for any tumor that doesn't meet the Oncotype criteria, and what they have done forever (since before the Oncotype test, which came into common use well after my diagnosis in 2005), which is to make a recommendation based on your pathology, established treatment guidelines, and experience.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 13, 2020 11:34AM Beesie wrote:

Barbara,

Although this doesn't substitute for the information from your doctors, the following two breast cancer treatment/survival models might be helpful to you. My MO actually uses the PREDICT UK model, so I trust that it is quite reliable.

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

http://www.lifemath.net/cancer/breastcancer/therap...

  • The PREDICT model requires an input for Ki-67, which is info you may not have (many of us don't get this on our pathology reports). To be conservative, you can input Ki-67 in as "positive" although with a grade 1 invasive cancer, it's more likely that your Ki-67 is negative (negative is more favorable). The advantage of the PREDICT model is that you can specify micromets to the nodes rather than having to input that you are node positive. In your case might be significant given that your micromet is so close to being ITC (and therefore being classified as node negative).


  • The LifeMath model doesn't require the Ki-67 input, but also doesn't give you the option of specifying micromets, so it might over-estimate your risk.


  • Both models provide a 15 year breast cancer mortality rate, based on your inputs. With the PREDICT model you can look at 5 years and 10 years as well. You can use both models to calculate the mortality rate with no additional treatment. Then you can add in Tamoxifen to see the risk reduction benefit of taking Tamoxifen. Then you can add in chemo, to see what additional risk reduction benefit you would get from chemo. Obviously this is not as precise as a genetic analysis of your tumor, which is what the Oncotype test does, but in my previous post I highlighted the issues with using the Oncotype test in your situation, with a much smaller than average tumor size and such tiny micromets.


  • In looking at the results, note that the LifeMath model shows breast cancer mortality but PREDICT shows overall mortality. In PREDICT you need to look at the words below to separate out breast cancer mortality from all cause mortality. For example, if the 15 year "Overall Survival %" is 89% and below it says "If death from breast cancer were excluded, 94% would survive at least 15 years, and 6% would die of other causes.", this means that the breast cancer mortality rate is 5%, i.e. 94% - 89%.

.

The big question is always "what risk reduction benefit from chemo makes chemo worthwhile?" Some patients will want to take chemo for just a 1% risk reduction. Given the short and long term health risks from chemo itself, most patients (and doctors) would want a greater benefit. The risk of very serious side effects from chemo isn't high, but it's real and is an important consideration. My MO's area of research specialty happens to be the side effects of cancer treatment. From discussions with him, I believe that he would not recommend chemo to a patient unless there is at least a 3% mortality risk reduction benefit.

As I mentioned, my MO actually uses PREDICT. The other model available to MOs is Adjuvant Online. You should be able to talk to your MO and ask her for her assessment of your risk with Tamoxifen alone, and how much chemo would reduce this risk. I'm sure that your MO has already looked at this for herself, which is why she is not recommending chemo. She should provide you with this information so that you understand the basis for her recommendation and can discuss it with her.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 13, 2020 12:24PM buttonsmachine wrote:

I recurred the first time on Tamoxifen. Unfortunately recurrences can happen on any therapy, because cancers can learn to outsmart the treatments over time.

My advice would be to ask your MO or surgeon if there are ANY additional tests you can do on the tumor specimen to have a better idea of how aggressive it actually is. If Oncotype is not an option, maybe try something else? That is very important information to have for early stage people, because aggressive cancers behave very differently from more chilled out cancers.

My cancer was "caught early" but was so aggressive that it's been a huge problem despite active treatment. In your case the lymphovascular invasion and micromets are a bit of a red flag, and I would want more information for you. Best wishes.

Diagnosed at 32. Local recurrences in skin one year later due to needle seeding at initial biopsy. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2-
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Sep 13, 2020 02:52PM barbaraprevost4 wrote:

Thank you so much Beesie for sharing your knowlegde. Your contribution to this community is invaluable. Thank you for your answer Buttonsmachine too ! Enjoy the rest of the weekend!

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