Lobular Breast Cancer: Let's share and support each other

Thanks so much for the input. It is good to be able to connect with someone who has gone through the experience of having LCIS. My surgeon seems to leave the decision of double mastectomy to me and sometimes I don’t know if my decision to go with it stems from fear or rational thinking. I know that this route is discouraged these days since there is medications, tamoxifen for example, that they say is just as effective. I am a worry wort by nature and taking a medicine that increases risk of uterine cancer will add on to my worries. Also, reading about your experience and others with lobular cancer gives me the sense that this cancer can be tricky unless it is taken care of early. Most people think I am being too aggressive going the route of double mastectomy for just LCIS. What do you think? Thanks any input you can give me.

@mayo101

First, who are 'most people'? It's good to talk this out with people you love, people you respect, doctors, family, etc. but the decision still has to be the one that will give you the most peace. Unfortunately, that means you are still stuck with this very hard decision. On the plus side....the double mastectomy means a lesser chance of cancer recurring BUT on the negative side....it's a major surgery and there can be downsides there too. When I was struggling with lymphadema (due to the surgery) my physical therapist was a young woman who had been diagnosed with Stage 0 ductal cancer and she had a bi lateral mastectomy. That seemed extreme to me but then she shared that she had seen so many women struggle with lymphadema from the node biopsy she decided to remove her breasts so she wouldn't have to do that part of the procedure and so she'd never have to worry about cancer. That's really aggressive. My point in telling her story to you......everyone is different and no matter what course you take, there are ups and downs. I might suggest you visit the part of Mayo Connect where they discuss the use of the aromatase inhibitors like Tamoxifen. They are not without side effects during use and after use. I personally couldn't tolerate any of them and luckily have not needed them (as far as I know). It might help you to see what other woman have experienced with those. And p.s. even women who have bi lateral mastectomies are recommended to use the estrogen inhibiting drugs. Please stay in touch and reach out anytime if you need to share or even 'vent'. Hugs to you...

Hello all and hugs! Im 63. I was diagnosed in August with left breast, stage 2 ,positive neg neg lobular through annual mammo and ABUS, and then stereographic biopsy. I instinctively wanted a bi lateral mastectomy, but my breast surgeon was not interested in this and said it was an "emotional reaction". He performed a lumpectomy 10 days following the biopsy, and the nodes were fortunately clear. But he didnt get all of the margins either. and wanted another surgery. I was not interested in chipping away at the issue and networked through women I new. I was lucky to find a great surgeon who respected my surgical option. Had the bilateral mastectomy 6 weeks ago and (other than not being able to pick up anything over 5 lbs for a few weeks and the nuisance of the drains for a bit) the surgery was not such a big deal! One night in the hospital and I stopped taking the pain meds after 4 days with no issue. I have no plans on reconstructive, will get prosthetics later but even that isnt important. I met with a great oncologist last week, and took my first anastrozole this morning. No chemo, no radiation. I am working with genetic testing. I usually try to follow my instincts when making major decisions, after gaining as much information as possible, and feel this was a right decision for my personality and lifestyle. I dont want the sword of Damocles hanging over me wondering when the cancer will come back, if it will jump to the right breast (20% shot) or worse, metastasis throughout my body. Better for me to nip it in the bud and move on with my life. I am very, very grateful and feel so lucky. Hoping the drug therapy wont have terrible side effects, but frankly having the cancer surgically removed is empowering. Also, my back feels fantastic! I hope this helps anyone wrestling with the decision of having a bilateral mastectomy or not. My surgery was NOT a big deal.

Anyone with recent LCIS diagnosis? What did your dr suggest you do? There appear to be two theories- surgery or watch with mammograms every 6 months.

Hello @southgawalker and welcome to Mayo Connect. I would encourage you to post this question on Connect's Breast Cancer discussion group. Here is the link to that group.

--Breast Cancer
https://connect.mayoclinic.org/group/breast-cancer/
I am tagging @trixie1313 and @auntieoakley to join this discussion.

On Mayo Clinic's website there is some information that you might find helpful. Here is the link
https://www.mayoclinic.org/diseases-conditions/lobular-carcinoma-in-situ/diagnosis-treatment/drc-20374535
@southgawalker,
Have you already had a biopsy? If so, what were your doctor's recommendations?

Hello @southgawalker , I am going to go out on a limb and guess that LCIS is lobular carcinoma in situ? There are several conversations about lobular cancer in the breast cancer group. I would encourage you to ask this question on the page; lobular cancer, let’s support each other. It is so frightening to hear the word cancer, there are a bunch of folks there who have been there and done that. Here is a link.
https://connect.mayoclinic.org/discussion/lobular-breast-cancer/
Since you must have had a biopsy to get this diagnosis, did your doctor give you those choices? Have you thought about a second opinion to look for a consensus?

LCIS was diagnosed through core needle biopsy in 2021. Watch every 6 months.
was surgeon’s suggestion in. April. No other options mentioned.
Yesterday the radiologist came out to talk to me after the mammogram and said her training indicates Surgery and then tamoxifen as the way to go.
Mayo is the best so I am looking for answers.

I am glad you are looking for more information! If there is one thing I can really support it is getting informed. I am terrible at keeping track of links these days, but if you are thinking you would like a second opinion at Mayo there is a link for a request for appointment that I am sure another mentor could provide. @hopeful33250 or @johnbishop probably have it quite handy. They are amazing. Advocating for yourself is so important, especially when you are talking about cancer.
If not Mayo, are you close to a large center or teaching hospital?

@southgawalker, I'd like to add my welcome. I moved your posts to this existing discussion in the Breast Cancer support group.
- Lobular Breast Cancer: Let's share and support each other https://connect.mayoclinic.org/discussion/lobular-breast-cancer/

I did this so you can read previous posts and connect with other post-menopausal women who have LCIS who can share their treatment experiences.

This discussion will also be of interest to you I think:
- LCIS: What treatment(s) did you choose? https://connect.mayoclinic.org/discussion/lcis-and-double-mastectomy/

Have you considered getting a second opinion?

Thank you. I will reach out.