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

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?

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?

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 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.

@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...

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.

@kware75 First and foremost.......big hugs! So sorry you're going through this. The first year for me was scary and stressful but on a positive note - they are so much better at breast cancer diagnosis and treatment now. Do as much research as you can and also get a second or even third opinion if you can. The metastasis is the greatest concern. If they can remove the cancer with lumpectomy that is an option but mastectomy might be a good choice as well...to completely remove the tissue in case there is more cancer starting. The choice about chemo and radiation is a difficult one. I was lucky that it wasn't recommended for me (no metastasis) and also I chose mastectomy to avoid those treatments BUT...my husband's cancer responded very well to just a handful of chemo treatments and radiation. It was a rough couple of years for him but he has no evidence of disease now and they don't even know the type of cancer he has and was considered terminal at diagnosis and that was 7 years ago. Get as much information and as many opinions as you need to feel you're making the right choice and know that you can quit any treatment at any time and there are statistics you can work with to determine possible outcomes. Since you are pretty young they are concerned about your estrogen levels and hence the ovary removal BUT....make them do blood tests to see how much estrogen you really have as well. When I requested that I found that I had NO estrogen (I had 95% estrogen positive breast cancer). I was able to skip the endocrine therapy as well. I was however about 6 years older than you at diagnosis and post menopause but the hormones were non existent at diagnosis...the damage was already done I guess. I do hope this helps because I know how frightened and overwhelmed you are feeling. I am sending the most positive thoughts I can to you today.

@mayo101 Hello!
My screening procedure post mastectomy has been primarily physical doctor exams looking for any lumps (which is ironic because lobular tends to grow in lines, not lumps) but....my current oncologist, who I trust says any new cancer is pretty obvious post mastectomy.....a very clear bump on top of the skin. I did have an ultrasound about 4 years ago because I had a swelling near my armpit and that turned out to be a typical swelling due to a virus. I am going to ask for an MRI however at 10 years and force my insurance to cover it. I too have been with an HMO and they don't like spending any more money on me than they have to (sigh) but I will get Medicare at the end of this year and I will request an MRI just to put my mind at ease if my oncologist feels it is advised. There is really no better way to find any sneaky cancer early than an MRI. Hugs to you!

I was wondering why your doctor feels you are not a candidate for an MRI? Do you mean it’s not covered by your insurance?

Hello, your decision making process for getting a double mastectomy further reinforce my decision for this procedure as well. I have recently been diagnosed with LCIS in my right breasts and after reading much about it, I have learned that it can be multifocal and hard to detect on mammograms. My surgeon does not feel I am a candidate for MRI’s, which is more effective in detecting lobular cancers. I belong to an HMO that have guidelines for who gets MRIs. My question to you is what is the monitoring method for you after a double mastectomy since this procedure does not remove 100%of breast tissue?