Topic: Just diagnosed with Triple-Negative--so many questions...

Forum: Triple-Negative Breast Cancer — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Jul 10, 2021 08:19PM

Posted on: Jul 10, 2021 08:19PM

chirodani wrote:

Hello everyone,

So I had a stereotactic core biopsy of the left on 7/1/2021. Results: Benign breast tissue showing fibrocystic change and focal fibroadenomatous changes.

On the same day, 7/1/21, I had sonogram guided core biopsies of two locations on the right. Well, both locations on the right side are Invasive ductal carcinoma with apocrine features (huh?) and ER, PR and HER2 negative. Ugh, the triple negative! Also says moderately differentiated (a grade 2 I think) with perineural invasion of one of the locations (which I think means more aggressive?). I see the surgeon on Tuesday, 7/14/21, and the Oncologist on the 21st.

Am I correct that moderately differentiated is grade 2? Is the perineural invasion really bad? What are apocrine features? Is it weird they didn't biopsy a lymph node (especially since the original US showed cortex calcification on a non-palpable axillary lymph node)? Is this going to be a lifetime of fighting and treatment? Is there a chance at a somewhat lengthy lifetime? Since I have daughters should I insist of testing for the BRCA mutations?

What are some good questions I should ask my surgeon?

Sorry for all of the questions and thank you for any guidance you can give!!

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Jul 14, 2021 12:35PM aram wrote:

No, I am still going through chemo. I have 6 weeks left for chemo. My surgery is most probably in September so I still have a couple of weeks to think. I totally understand the struggle. Good luck with your decision. I think because you are triple negative you are going to have chemo before surgery. So you might not need to decide right away as well. Do you know which chemo you are going to get?

Dx at 40, BRCA1 Dx 2/5/2021, IDC, Left, 1cm, Grade 3, ER-/PR-, HER2- Dx 2/5/2021, IDC, Left, 3cm, Grade 3, ER-/PR-, HER2- Chemotherapy 3/9/2021 AC + T (Taxol) Targeted Therapy 6/2/2021 Perjeta (pertuzumab) Targeted Therapy 6/2/2021 Herceptin (trastuzumab)
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Jul 15, 2021 09:24AM salamandra wrote:

Hey Chirodani,

This was not my personal situation so my two cents are probably worth less than two cents, but in case it's helpful this is my thinking when I was making a decision...

Local recurrence doesn't kill you but the longer it takes to detect, the greater chance of it not being local anymore. I think anything that would make it harder to detect local recurrence would be less preferable.

Local recurrence can often be detected after no-reconstruction mastectomy with regular manual exams (by you and by docs) and after lumpectomy with manual exams/mammograms/MRIs (for high risk women). My impression, from my last reading about this but I am not an expert, is that certain types of reconstruction might make it harder to catch a recurrence early. I think this would be even more important if you turned out to have the genetic predisposition. In addition, I think screening would then again require imaging in addition to manual exams, and that undermines what many women find to be a huge benefit of mastectomy.

In your shoes, I'd definitely try to figure out what kind of same day reconstruction they are offering you and how it will impact screening.

To be honest for me this was an emotional decision. As soon as I learned that lumpectomy+radiation was not less protective for me long term, I had a very clear and strong wanting to keep my breasts.

If there is an evidence-based medical advantage to a certain path, your doctors should make that clear to you and of course that should be guiding. But when it comes to options... everyone has a different relationship with their breasts (whether natural, augmented, or reconstrcted), and I think the most important thing is to listen carefully to your inner voice and do what feels congruous and what you think you will feel good with. Despite what I wrote above, wanting reconstruction is a good enough reason to have reconstruction, even if it does introduce some extra potential complications. Quality of life and feeling good in your body - whatever that means to you personally - is super important.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/17/2018 Lumpectomy; Lymph node removal Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Jul 17, 2021 02:07AM chirodani wrote:

Thank you so much for such a thoughtful message! I do admit that I am nervous about having anything in my body that would delay or miss a recurrence! I'm also not sure I'm willing to risk even the slightest chance that a lumpectomy doesn't get everything (and I really don't want to get radiation on top of chemo). I've really never liked my boobs so part of me is like "cut them off now" but I'm not sure I'm ready to have no boobs.

Sigh, it really is more complex than I imagined! Right now I am trying to find a little quiet to really tap in to what will help me lead a happy, lengthy (hopefully) life!

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Jul 29, 2021 08:10PM lilyanadaisy wrote:

I was diagnosed January last year with invasive carcinoma (triple negative) with apocrine differentiation. Androgen receptor positive.

5mm, no lymph node involvement. I had a lumpectomy and 6 weeks of radiation. I was also braca negative.

I was quite shocked when I was told that I wouldn't be having chemo. I just had it in my mind when diagnosed that chemo was my only option having been diagnosed with triple negative.

My surgeon and oncologist had conferences with other oncologists across numerous hospitals before they all came to the same decision that I didn't require chemo. Still to this day I question if my treatment plan was the right one, but I am always reassured from all my medical team that it was. Because it was apocrine with androgen receptor positive and I think some other things mentioned on my report, that the treatment option was different.

I have tried to do my own research, but I can't find much regarding apocrine breast cancer, the information is all different, some say prognosis of the apocrine is really bad and then others say its good so very mixed opinions and I haven't been able to find anyone else that I can really relate to.

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Jul 29, 2021 09:50PM moderators wrote:

Welcome, lilyanadaisy. It can be so hard not to second guess treatment decisions. We hope you are continuing to do well, and we're glad you've found our community!

The Mods

To send a PM to the Mods: community.breastcancer.org/my/...
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Jul 29, 2021 10:45PM exbrnxgrl wrote:

Chirodani,

For more detailed info, visit our reconstruction forums. There are quite a few options for recon but to be honest, almost all can be started at the time of mastectomy, but it’s not often “one and done”. Implants are generally started with tissue expanders that are gradually filled until the desired size is reached. You then have another surgery to place the permanent implants. I believe that the reconstructions that use your own body tissue, such as DIEP, TUG, Lat Dorsi, etc. often have a stage 2 surgery some time after the initial surgery.

However, there is something called a one step implant surgery. They literally put your permanent implant right after the mastectomy. This works only in specific circumstances. In general, you need to have a skin sparing mastectomy and remain roughly the same size. There don’t seem to be too many who have had this done, though not sure why. I am actually someone who had this done ten years ago. I’m quite happy with it and I always knew I wanted recon. So do check out the recon threads as there is a lot of info on all possibilities. Take care.

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2- Dx DCIS/IDC, Left, 4cm, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Jul 29, 2021 10:55PM chirodani wrote:

Oh wow, I'll look into that! Thank you!

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Aug 7, 2021 07:26PM - edited Aug 7, 2021 07:26PM by Beaglemama

Btw, radiation is not as bad as many make it out to be. There are many, many reasons to have a full mastectomy, but fear of radiation shouldn't be one of them. Hugs to you, my friend 💓

Age 45 at diagnosis Dx 6/24/2016, LCIS/DCIS/IDC, Right, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 8/19/2016 Lumpectomy; Lymph node removal: Sentinel Surgery 9/12/2016 Lumpectomy Radiation Therapy 10/25/2016 Whole breast: Breast Hormonal Therapy 1/3/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 8, 2021 12:02AM chirodani wrote:

Thank you! I'm not afraid of the radiation I'm just under the gun to get back to work and also want to be done worrying about this darn cancer! I really appreciate your response and kindness!

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Aug 8, 2021 05:49AM melbo wrote:

I know you have a ton of options already and the decision is already tough, but just to throw more info at you — during a lumpectomy a plastic surgeon can also do a bilateral lift and reduction on both breats so they match and are perkier/shapelier than before. So keep your breasts, but have them improved. I did this and went from a full c cup to a full b cup.

Of course that means radiation after, which had its own sucky features, but it’s not horrible. Radiation generally doesn’t take that much time per day — drive to and from center, plus 20-30 minutes to change and get treatment as long as your center runs on time. The bad parts is that it’s 5 days a week for as long as you need (anywhere from a couple of weeks to 6 weeks generally). you can get some unpleasant skin reactions and fatigue, although those are generally livable and almost everyone works through them. And for me — I had a co pay for every session, which made radiation the most expensive out of pocket expense of my cancer so far —$55 copay (depends on your insurance) x 33 sessions = $1,800.) every insurance seems to be different, but it’s worth asking about to make sure you’re aware of what’s coming.

good luck with your decision

Diagnosed right before my 42nd birthday. One husband, two dogs, one cat and no kids. Dx 7/16/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+ Targeted Therapy 8/7/2020 Herceptin (trastuzumab) Targeted Therapy 8/7/2020 Perjeta (pertuzumab) Chemotherapy 8/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/20/2020 Lumpectomy; Lumpectomy (Left); Lymph node removal; Reconstruction (Left); Reconstruction (Right) Radiation Therapy 1/31/2021 Whole breast: Breast, Lymph nodes

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