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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 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 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 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 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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Jun 19, 2021 06:20PM Benaya wrote:

Hi Bonanza,

Curious as to whether you read my posts in the other, general Tubular section (just saw this section on adjuvant therapy today)? If not, check it out. I describe my experience/decisions (no treatment other than lumpectomy), and cite some of the most recent research (at that time) done on tubular subtype which helped inform my decisions.

Let me know if you have any questions.


Dx 11/22/2017, IDC: Tubular, Left, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- (IHC) Surgery 4/3/2018 Lumpectomy: Left
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Jun 19, 2021 09:21PM exbrnxgrl wrote:

hi bonanza,

I do not have tubular carcinoma but I wanted to comment on aromatase inhibitors. As salamandra noted a forum like bco tends to have far more folks posting who are having problems or concerns about their treatments than those who get treatment and move on. Nothing odd about that but you should be aware of this slant.

I have been on Aromatase inhibitors for almost 10 years and because I’m stage IV I will stay on them until I progress and then I’ll move on to a different tx. Clearly I have a major motivation to stay on them but I also have not had debilitating side effects. Yes, I have joint aches and an overall feeling of stiffness if I don’t move enough but it’s manageable. During most of the 10 years I worked full time as an elementary school teacher (I just retired!) so I was always on my feet and moving. I have tried all three AI’s hoping to lessen the joint pain, again not debilitating but who wants any pain? OTC painkillers like Ibuprofen or naproxen sodium work. It hasn’t changed my QOL. I had no idea how I would do with these drugs until I took them but I knew that I couldn’t base my decision on how other people reacted. BTW, I will soon be 65. Take care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jun 21, 2021 03:34AM Bonanza wrote:

Hi Benaya,

I certainly have read your posts (some more than once). They have given me the courage to say, "Enough!" After two biopsies (the first was inconclusive), lumpectomy and removal of the sentinel node (when my tiny, indolent cancer had already been excised) I was feeling more fearful of over-treatment than the cancer itself. I know I'm lucky to be in this position, and my decision is not without risk, but as is clear from this site all options have risks. So, I'm adopting a wait and see approach. My surgeon didn't approve but the oncologist told me it had to be the right decision for me, and this feels right.

I hope you continue to be well - you are my inspiration!

Bonanza

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Jun 21, 2021 03:42AM Bonanza wrote:

Thanks Exbrnxgrl,

As indicated above I don't intend trying hormone treatment yet, though I did accept a script, so your advice is very welcome. You seems to have had a very hard time of this - diagnosed with Stage I which was then upgraded to Stage IV! How did that happen?

It's good to know you're coping well with the side effects though, especially given you have worked in a very demanding job - I know, because I'm a teacher too, but this scare is making me seriously think about retiring next year. I was diagnosed the week of my 60th birthday - not much of a present!

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Jun 21, 2021 11:59AM exbrnxgrl wrote:

Bonanza,

I was never dx’ed as stage I. That was just the interpretation after the biopsy, which is not the final word on staging as the post surgical staging from the pathology report is what counts (Yes, it can differ from biopsy reports). Post surgical pathology indicated IIB. Six weeks after my bmx, a single bone met was found on an unrelated PET which then made me stage IV. It didn’t “happen” but was there all along. There was no reason to suspect it. I should emphasize that my case is unusual and this does not commonly happen. However, I have not had a hard time as you put it. I have never had chemo and after rads to the bone met I have been NEAD for ten years. I continued working full time and just recently retired. We joke that I have stage IV “lite” but the actual term is oligometastases. I am a unicorn in many respects when it comes to bc. Take care

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Jun 24, 2021 03:23PM Benaya wrote:

Hello Bonanza,

I'm so glad to hear that describing my experience, process and choices, may have helped in your difficult decision-making process!! I am close to my four year mark without recurrence or regrets. I still believe that in my case, the treatment effects would have done more harm than the very small, non-aggressive mass would have done. And, if by some chance I do have a recurrence, I will still have no regrets.

I'm happy to hear that you're taking a wise "wait and see" approach. I may have said this before, but my oncologist (only saw once) and surgeon, both recommended hormone therapy (though not radiation), and like you, I declined. I just didn't want to deal with the associated health problems.

Anyway, I hope you will continue to be well and follow your (healthy) heart.

Dx 11/22/2017, IDC: Tubular, Left, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- (IHC) Surgery 4/3/2018 Lumpectomy: Left
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Jun 25, 2021 08:13AM Bonanza wrote:

Hi Benaya,

Thanks - I really appreciate your words of support, as I felt exactly the same about my situation.

Your doctor seems to have offered you more individualised treatment than mine who was quite dismissive of the 'wait and see' option. How often are you being tested now? Have you learned to relax when the next test comes around, or does it make you anxious? Not that it affects the outcome of course - I wasn't in the least worried about my recent callback, until they told me they wanted to biopsy me.

Thought you might be interested in this Italian study if you haven't yet seen it: https://www.frontiersin.org/articles/10.3389/fonc....

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