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Ductal carcinoma in situ in one breast, lobular hyperplasia in other
Breast Cancer | Last Active: Dec 27, 2022 | Replies (38)Comment receiving replies
Greetings @varalax. I totally empathize with your feelings about your diagnosis. I was totally in shock and I got mine. It’s a very hard decision, and one you just have to make. No one can tell you what to do. However, I will share my story, lest it shed some light for you.
Last February, per a routine mammogram, I was diagnosed with ductal carcinoma in situ (DCIS) in the left breast. Frequently a good case for lumpectomy, which when paired with radiation has same outcome predictions. Several years ago, I had an atypical lobular hyperplasia (ALH) in my right breast. Thus, increased risk of future cancer. So similar to your situation.
DCIS is stage 0, almost considered a pre-cancer. However, my cancer did have ‘aggressive’ indicators. I was triple negative (Estrogen, progesterone, HER2) and grade 3.
They also have a strong family history of breast cancer. Four incidences, three of which died. I was negative for the BRCA gene, however, was positive for STK – 11, of which little is known to date.
I was right where you are as far as lumpectomy versus mastectomy. Also single mastectomy versus double mastectomy.
My hesitation with lumpectomy was:
- not wanting to do radiation (can damage heart, lungs, skin, etc)
- risk of future cancer
Subsequently, I went to Mayo clinic for a second opinion and they did an MRI. I learned an important thing. My DCIS showed up on the original mammogram. When they did the MRI, they also saw a second cancer… And invasive cancer… luckily Stage 1A.
- The DCIS showed up on the mammogram but not on the MRI.
- The Invasive showed up on the MRI, but not on the Mammogram.
Evidently, per Mayo, this is not uncommon. Have you had an MRI, as well as a mammogram?
This was devastating news, but made the decision easy for me. I ended up having a double mastectomy at him in the process of reconstruction. I’m a very active 64-year-old.
I wish you the best of luck in your decision. I’m very happy with my new breast they’re very pretty and have had little to no impact on our sex life. Prayers going out.
Replies to "Greetings @varalax. I totally empathize with your feelings about your diagnosis. I was totally in shock..."
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.
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Thank you dear for your detail reply. Our case is quite similar. Glad you are doing great! Got some pointers for our decision from your story. Thank you again.