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Topic: Adjuvant treatment decisions for low grade tubular cancer

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Jun 8, 2021 07:57AM

Bonanza wrote:

Hello,

I have recently been diagnosed with a very small, low grade NST/Tubular carcinoma. 1mm -2mm was found during a core biopsy but nothing was found during surgery. Now my surgeon is suggesting radiation and/or hormone therapy, which surprised me given he described me as "cured". He said it was too risky to do nothing. Hoping some of you can give me some confidence to challenge the process and avoid being over treated.

Bonanza

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Jun 8, 2021 12:16PM Lizard123 wrote:

I would do the recommended treatment. I am in a similar situation to you. I had cancer found in biopsy only, nothing in lumpectomy in 2019. In 2020 my cancer reoccurred in lymph nodes. Radiation was not recommended in 2019. If I had done the radiation, I may not have had the recurrence. Due to the recurrence, I have had very extensive lymph node surgery and chemo. Both have not been easy. My cancer was also originally considered low grade in 2019. I am not trying to scare you, but even low grade cancer can reoccur

Dx 9/15/2019, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- Dx 12/29/2020, IDC, Right, <1cm, Stage IIB, Grade 2, 1/15 nodes, ER+/PR+, HER2- (IHC) Surgery Lumpectomy: Right
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Jun 9, 2021 01:21AM Bonanza wrote:

Thanks Lizard. I had read of your sad situation and it certainly made me think. I'm not looking to be reckless - just trying to get the best possible outcome for myself, particularly as there is heart disease in my family and I know there are some long term risks with radiation therapy. I spoke of my concerns to the radiation oncologist today who basically said I could have radiation or hormone treatment - that in fact I would be a suitable candidate for the current worldwide trial if only they had a bigger sample of my cancer. So I have some decision making to do. Seeing the hormone oncologist in a few days to speak with her, which I hope helps.

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Jun 9, 2021 07:14AM Lizard123 wrote:

My sample from the original cancer was not large enough for the OncoDx test. This time around they sent my sample to mamma print, which is also a good test. I think the sample requirement is smaller. Yo can ask your oncologist about it. It may give you some peace of mind.


Dx 9/15/2019, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- Dx 12/29/2020, IDC, Right, <1cm, Stage IIB, Grade 2, 1/15 nodes, ER+/PR+, HER2- (IHC) Surgery Lumpectomy: Right
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Jun 9, 2021 09:34AM Salamandra wrote:

I believe newer studies indicate that hormonal treatment can also have cardiovascular impacts, so I can see why you're in a tough situation.

Given the heart disease concern, I wonder if your oncologists might be willing to consult with a cardio specialist to help figure out what is your overall best risk mitigation strategy. I imagine this could depend a lot on your age and other risk factors as well.

Another factor is that some women who plan to take hormone therapy end up not tolerating it. It's different for everybody and no issue at all for many, but if a woman skipped radiation with the plan of doing hormone therapy and then was one of the unlucky ones with very difficult side effects, she would be in a pretty rough spot.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
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Jun 10, 2021 07:18AM Bonanza wrote:

Thanks for both your responses. I'm from Australia and not heard of the tests you mention Lizard - not sure if they're offered. I did have an MRI before surgery and no other cancer was detected, so I take some comfort from that, though I know it can't detect microscopic cancers.

I appreciate your concerns too Salamandra, as the side effects of hormone treatment do sound quite debilitating. I'm 60 - need to be 80 for no treatment to be recommended I was told. I'm off to chat to the hormone oncologist tomorrow to see what she recommends.

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Jun 10, 2021 11:28AM Salamandra wrote:

Bonanza,

Just to be clear, there are many women who don't have debilitating side effects from the hormonal therapy. Of the women who do, many are able to mitigate/relieve them with complementary treatment or changing drugs. But if you aren't lucky the first time, it can be a process that definitely requires motivation and willingness to deal with some suffering, and there is a subset of women who end up weighing their risks and either giving up on that process or trying everything and really find they can't tolerate any of it.

I don't know how large that subset is because there aren't good studies on it. We definitely get a skewed view here on the boards because women who do have issues with the drugs are much more likely to write about them. So I wouldn't assume that you will have issues, but I also guess I wouldn't assume you won't. You have to do your own risk assessment, but I wouldn't forego radiation on the basis that you'll get the benefit of hormone therapy. Just realize that you may end up without the protection of either.

Do you have a cardiologist who can help you understand your family-related heart risks?

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
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Jun 10, 2021 09:50PM Teddy88 wrote:

Hi Bonanza: Tubular here as well - 5 mm. Did whole breast radiation with Silvia Formenti in NY in prone (on stomach / radiated from below) position to lessen impact on heart and lungs. Heart issues and heavy arthritis in family so did not take AI or tamoxifen. Keep us posted and wishing you the best of health. Love, Belle x

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Jun 11, 2021 06:45AM Bonanza wrote:

Thanks Belle, that's very interesting to hear. Glad to hear you're doing well despite other complicating factors.

I'm not sure that option is available to me though. I can't even get half breast radiation, despite my tiny tumour, because my hospital don't offer it. Beginning to think I should get a second opinion.

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