CHEK 2 and precancerous microcalcifications

Anonymous

CHEK 2 and precancerous microcalcifications

Jodi5634

Hi my name is Jodi. I’m new to this online community.

I am 45 and recently learned that I have precancerous microcalcifications in my breast and tested positive for CHEK 2 genetic mutation . One doctor I went to wants to take the cells out and for me to consider a double mastectomy to reduce my risk. Another doctor I went to this past week said leave them in and watch me every 6 months . The second doctor did not appear to have as much knowledge as I had hoped with regard to this mutation. I was told by my genetic counselor and the first doctor that my risk of getting breast cancer is around 37%. (My paternal aunt died of breast cancer , no known knowledge of my birth mother).

I have an appointment with a 3rd breast specialist, hoping he will lean towards either doctor so that I can make a decision. I'm Sorry I just spilled my whole story. I'm so confused, scared , and don't know who to listen to . I joined your group with the hopes of educating myself as much as possible so I can make an informed decision.

Any advice, words of wisdom, or personal experience would be greatly appreciated

Beesie

When you say " precancerous calcifications", do you mean ADH or ALH, i.e. a condition with atypia?

And how was this diagnosed? With a stereotactic / core needle biopsy?

Without even considering the CHEK2 mutation, normally when atypical cells are found through a needle biopsy, an excisional (surgical) biopsy will be recommended to remove the entire suspicious area for further examination. This is done because in approx. 20% of cases, either DCIS (pre-invasive cancer) or invasive cancer will be found mixed in with the ADH or ALH.

Did either doctor discuss the option of you taking endocrine (anti-hormone) therapy to reduce your risk? This is often considered for high risk / precancerous conditions, again separate from the CHEK2 concern.

LillyIsHere

Jodi, do you live in NY? You have No. 2 best cancer center in the World: Memorial Sloan Kettering Cancer Center. I would go there for another opinion. On the other hand, I would get influenced to make the decision based on your personality and how well you'll handle any future breast changes, scans, etc. I removed both my breasts even though MRI showed cancer in one just because I know myself how much I would worry especially having very dense breast.

Jodi5634

Hi Bessie,

Yes. I had a core needle biopsy in July. They are saying it’s flat epithial atypia.

Doctor 1 said it should come out. Brought up my 3 options after it’s removed : careful watching every 6 months alternating mri and mammo, tamoxifen, or double mastectomy to reduce my risk. I’m not too thrilled with any of my options and I feel there are pros and cons to each. I just dk how I determine the best, safest option. I have 2 young children and I constantly think about the stress of every 6 months. It’s taken a toll on my emotions these past few months already

Jodi5634

Hi Lily,

I actually did see a doctor at Sloan just last week. To my surprise, she wasn’t super knowledgeable about my risks. She suggested not taking the cells out now and high risk surveillance every 6 months. No matter precancerous or not, I want it out for my own piece of mind. I have a terrible fear that something may get missed if it’s not taken out. I too have extremely dense breasts. That weighs on my mind, in addition to my young children that I want to live long for, and the emotional stress this has caused over the last 3 months. Initially I thought no way to double mastectomy but honestly , I’m having second thoughts.

Beesie

Ah, you have FEA. That's different. Unlike ADH and ALH, there are questions as to whether FEA confers increased risk and should be defined as a pre-cancerous condition. From most recent studies, it is recommended that FEA be excised only when it's found in conjunction with ADH or ALH (and it's really the ADH or ALH that is presenting the risk).

Majority of flat epithelial atypia diagnosed on biopsy do not require surgical excision https://www.thebreastonline.com/article/S0960-9776(17)30584-2/fulltext

"Histological upgrade to malignancy was uncommon in lesions found on biopsy to be FEA. Non-operative management of biopsy-proven FEA can be considered in the absence of ADH and radiology-pathology discordance."

Flat Epithelial Atypia and Risk of Breast Cancer: A Mayo Cohort Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC44241...

"Our 35-year cohort has been followed for a median of 16.8 years. FEA appeared to have no independent impact on BC risk: subsequent breast cancer events in women with FEA were associated with the major categories of AH and PDWA, and the coexistence of FEA did not change risk within AH and PDWA subgroups."

Two thoughts. First, given that you have the CHEK2 mutation, although an excisional biopsy is not always recommended for FEA alone, it might make sense to (at minimum) have the entire area of calcifications removed, just to be sure that there is no ADH, since it is quite common to find the two conditions together. ADH, if present, could present a higher risk, and would possibly drive different decisions than the FEA alone.

Second, I think you have to decide what you want to do to manage your risk from CHEK2, separate from the FEA. That is the higher risk that you face. Then you can layer the FEA on top of that to see if it would change your decision.

Jodi5634

Bessie,

Thank you so much! No one has explained it to me like you. Simple terminology and explanation. Too bad you aren’t my doctor-lol ( only half joking).

I tentatively scheduled surgery with Doctor 1 for the beginning of November. The only reason why I pushed it for November was two fold-

1-I’m meeting with Doctor 3 next week hoping his opinion will coincide with either doctor

2- If doctor 3 feels it doesn’t need to be removed, I wanted to secure a surgery with doctor 1.

Super confusing I know. :-(

I agree with you. I feel perhaps when it’s removed it may drive my decision either way. To me, piece of mind is everything.

I truly cannot thank you enough. Can I reach out to you after Doctor 3 appointment next week

Nottodaycancer2020

it such a personal choice to make but if I could go back and make a decision which would prevent my breast cancer I would. I also have 2 young kids and it’s been a rough few months going through this.

I have the chek2 mutation and I am doing chemo currently and have a double mastectomy scheduled for 12/1.

Let me know if you have questions

Jodi5634

Thank you so much for the encouraging words. I had a lumpectomy a week ago. Everything is clean and no status change on pathology ( so just precancerous as opposed to worse). I met with a surgeon on Monday. After much MUCH thought, I decided to go forward with a prophylactic bilateral mastectomy using TUG Flap. I’m scared as hell but I am more scared of not being around for my children. 🤗