Ductal carcinoma in situ in one breast, lobular hyperplasia in other

Thank you for your input.

Diagnosed with Atypical hyperplasia (both tubular and ductal) on right breast.

Anyone here dealing with this dx and tamoxifen side effects?

Welcome, Heidi. While it's not common to be diagnosed both ductal and tubular hyperplasia, @varalax @boathouse and @kk57 had a very similar diagnosis with ductal carcinoma in situ (stage 0) and lobular hyperplasia. I moved your question here so that you could connect with them and others.

Since you were specifically asking about tamoxifen side effects, you may also want to see this related discussion:
- Tamoxifen https://connect.mayoclinic.org/discussion/tamoxifin/

There are other discussions about tamoxifen that I can direct you to and introduce you to other members. What side effects of tamoxifen are you experiencing?

Thank you Colleen! I really appreciate it! I’m new to this sort of forum and didn’t know exactly how to start and where to post. Yes, uncommon, but here I am, scared and worried about my risk of progression.

In January I complete year 1 of tamoxifen. I’ve had most common side effects but have been able to manage (even the night sweats, hot flashes, and amenorrhea). However, the not so common side effects are bringing me down hard. Ever since I started the drug, I live in a world of complete mind fog, memory loss, short attention span, and basically mild cognitive impairment. Doctors tell me that Tamoxifen doesn’t really affect the brain like that - I defer.

Anyway, I was wandering whether there where others having similar issues and how the handled them. Thank you so much!

I’m in the same situation now and I’m wondering, what did you end up deciding to do?

What is the calming down technique?

Hello KK57,
Your info was reposted from last year to help those of us new to diagnosis.
I find your story very compelling and extremely helpful. Thank you!

If I might ask you, in your process of mri/mammogram & second opinions, were lumpectomies required to fully test the areas in question? Or did you make your decision based on a biopsy result? It sounds like family history was a big factor too?

Before my father passed from prostate cancer, he made me promise to be diligent tracking my health.
So for my 50th bday last year, I did genetic testing expecting to find BRCA (my grandmother died of ovarian cancer). Genetic testing revealed surprisingly negative for BRCA gene, but instead showed I was check 2 positive for gene markers for breast cancer, kidney cancer & colon cancer. I felt lucky to be able to get baseline MRI’s and CT scans for areas of question and begin careful and frequent monitoring with a breast specialist.
Then a year and a half later (few weeks ago) , after a 3D mammo suspicious area of asymmetry, they called me back in and did more 3D and ultrasound and then scheduled me for biopsy. A few days before Christmas, I got biopsy results & found out a few days ago my diagnosis. ATYPICAL LOBULAR HYPERPLASIA BORDERING ON LOBULAR CARCINOMA IN SITU.
Because of my genetic markers and the ALH/LCIS discovery, my breast surgeon wants to do lumpectomy right away. I have several questions:
Because I have now had a biopsy that pierced the area capsule of concern, are those atypical cells now floating around NOT IN Situ? I am happy to know via biopsy what is going on, but feel uneasy about weird atypical cells the opportunity to have made a great escape! I feel like I should skip the lumpectomy and go straight for prophylactic double mastectomy to cut this lifelong worry and careful monitoring off at the pass!! Plus, honestly, I am not crazy about all the radiation exposure 2x a year (possibly multiple follow ups and biopsies recurring year after year). I don’t want to be over reactive, but to your experience point exactly, mri sees one thing mammo sees another & its this unique opportunity to take control and end all questions with mastectomies. Do I want to do this? Hell no!! But I don’t want to hang around and let something start brewing angrier and worse that what I have started at this point and time? No. Friends and some family might think I’m crazy. It’s scary, but seems so rational. Did you have double mastectomy and reconstruction simultaneously? To remove all risk, do they need to remove nipples too? How long is the process? Did you have to fight with insurance to cover the surgery? Do you have any further protocol following the reconstruction to need mama and MRI’s or do you leave that all behind when you go for mastectomy? These are the burning questions that are keeping me up at night? This is all so fast and furious. I feel scared but empowered all in one. I don’t feel like I have a choice? It seems obvious that I should do mastectomies. It is nice to hear you are 1 year out and say you are very happy with your new breasts. Did you even consider not having reconstructive surgery? It seems like advancements these days in reconstruction have allowed women to still feel whole. I think I’d want to do what you did. I thank you for sharing your story and for answering questions.

@varalax What did you decide to do? I’m reading this re-post from a year ago. I’m new to diagnosis.