Just diagnosed with Triple-Negative--so many questions...
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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Hi Chirodani, about BRCA testing, it depends on your age and your family history. If you are under 50 (some places under 45), brca testing is recommended. If you are over 50, it is based on family history.
For the rest of your questions I am sure more knowledgeable members will chime in.
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Got it! Thank you! I'm 51 and only know of my paternal grandma having it. It was found when she was well into her 80s.
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Yes, "moderately differentiated" is Grade 2.
"Is this going to be a lifetime of fighting and treatment? Is there a chance at a somewhat lengthy lifetime?" -- Assuming that you are early stage now, your doctors will be treating you with curative intent. That is to say, they are going to recommend surgery, chemo, and radiation with the hopes of getting rid of your cancer for good. Yes, there's a very good chance of you enjoying a lengthy lifetime. You'll have to be monitored, of course, for recurrence. Triple negatives tend to recur (if they do) within three years. But, once they are past that, their recurrence rates become very low.
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Apocrine TNBC is one of 6 subtypes. Thought to respond well to treatment. Are you AR+? (Androgen receptor) That seems to be common with Apocrine.
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Elaine Therese--thank you so much for answering my questions! I am just made of questions right now. I don't know what stage I am yet, but I'm hopeful we found it early!
Santabarbarian--I don't know if I'm AR+ but that will definitely be a question I ask on Tuesday!! That would be great if I have that little bit of extra fighting edge!
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Regarding genetic testing for BRCA mutations, there is a move to offer genetic testing to more patients and older patients, since the cost of testing has gone down and more has been learned. It turns out that the number postmenopausal women who test positive is high enough to justify testing. I know my older relative had routine BRCA testing upon bc diagnosis, even though we knew I (as the family history) have no BRCA mutation. See this BCO article:
https://www.breastcancer.org/research-news/brca-mutations-more-common-in-older-dx-women
Also as part of expanding genetic testing, there is talk that all premenopausal bc patients should receive genetic testing. Are you premenopausal at 51? I think that age 50 is just a stand-in for pre vs post menopausal.
Finally, know that there are mutations other than BRCA that raise one's risk of breast cancer. If you meet with a cancer genetics counselor, they can advise you whether a broader panel would be appropriate.
As far as knowing if your biopsy showed AR+, please get a copy of your pathology report to keep in your bc folder, unless you have access to it through a patient portal and prefer to keep your records that way.
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Shetland Pony, Thank you for so much helpful information! I'm 51 and, I think, considered perimenopausal. I haven't had a period in 6 months, lots of fun hot flashes. You've given me some good questions to ask my doctors tomorrow and I will read the article for sure.
I have my pathology report via my online portal but there is no mention of AR+ or AR-. There was only the mention of "apocrine features". I will ask if that test was done. I've printed out all of my studies and results so far and created a folder with it all. I want all of my information in one spot!!
Thank you again! Hoping to have more answers after I meet with my surgeon tomorrow!! I'll keep you all posted!
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Sorry to keep everyone hanging but yesterday was exhausting. I had some great news though! The cancer in my right breast is a clinical stage 1A! That's good, right?
She says the slight calcification in the lymph nodes was probably nothing but they will, of course, do a sentinel node biopsy. She immediately took blood so that we could test for the whole gamut of genetic mutations. That will traje two weeks. In the meantime I will meet with the oncologist and the plastic surgeon (in case I do mammogram with reconstruction).
So my options are: If genetic tests are negative-- right breast lumpectomy+chemo+radiation OR right breast mastectomy+chemo. Then, of course, I can decide on reconstruction. If the genetic tests are positive I have the above choices and/or I can have a mastectomy of the left breast.
If my genetic tests are positive I am leaving towards a double mastectomy. I was also leaning towards no reconstruction but now I'm thinking I may go through with that (since they said they can do it the same day).
Any thoughts on reconstruction? Positive, negative? Also, they said because we caught it si early I don't need any scans (unless it shows up in the lymph glands) does that sound ok?
So, lots of procedures coming up but at least I know the plan!! Sounds like I should be in surgery by mid to late August!
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Chirodni, great to hear about it being early stage. About mastectomy vs lumpectomy, if your genetic test is positive, that is the recommendation usually. About reconstruction, I asked the same question in another thread and almost everyone that answered are happy with their reconstruction experience.
https://community.breastcancer.org/forum/44/topics/879972?page=1#idx_12
I am still leaning toward no reconstruction because of the small cancer risk implants have but I haven't seen anyone on BCO having that issue. It is not an easy question to answer for me. I am not sure if I am going to regret later either way I choose now.
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Thank you for the link and the info!
Glad to hear people are happy with their reconstruction! I'm also torn! I just want the cancer gone and have never really liked my boobs anyway--- so take them!😂 But I'm not sure I'm ready to go flat. I was really against the reconstructing when I thought it meant coming back for more surgery-- I'm more interested now that it can be done at the same time. So much to think about!! Do you have a surgery date?
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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?
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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.
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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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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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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
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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.
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Oh wow, I'll look into that! Thank you!
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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 💓
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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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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
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