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

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

zephyr2309 | @zephyr2309 | Aug 3 12:20pm

I agree. While it's not as rare as initially thought, I have encountered an incredible amount of lack of knowledge about it from healthcare providers. And definitely more research is needed. I've looked to the LBCA for information (Lobular B C Alliance).

lifetraveler | @lifetraveler | Aug 2 7:56am

In reply to @otas "Hello friends, I am 76 years old and was diagnosed with LBCB stage 2, oestrogen positive,..." + (show)

Hi! @otas:

I am so sorry for what you've been through, and my heart and prayers go out for you upon reading your post!

Thanks for this valuable information and for posting this important question! Unfortunately I am not a medical professional, but I am aware of the fact that E-cadherin is a protein essential for maintaining cell-cell adhesion and the overall integrity of epithelial tissues. It acts as a tumor suppressor, preventing cells from growing and dividing too rapidly. Please bring up this issue with your care team, because lacking of this protein can cause serious implications in cancer treatment plans. If your current care team can not (or will not) address this issue, please seek out a 2nd opinion for your best treatment plan.

Best wishes on the journey ahead, for our prayers are with you along the way!

otas | @otas | Aug 1 6:10pm

Hello friends,
I am 76 years old and was diagnosed with LBCB stage 2, oestrogen positive, 2 years ago. I had lumpectomy and 5 sessions of radiation. No metastasis to lymph nodes.. what Im interested to know
If anyone’s pathology results also showed 0- E Cadherin.
No one in my heath team raised this issue but according to my ‘research’ in various medical reports says that lack of this protein (e-Cadherin) is a major issue with LBC..
It’s so good that all of us are doing our own research and asking question.

janetnd | @janetnd | Aug 1 12:10pm

In reply to @irisheyes7 "Hello all and hugs! Im 63. I was diagnosed in August with left breast, stage 2..." + (show)

@irisheyes7

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.

Jump to this post

@irisheyes7 I was diagnosed with this lobular breast cancer about two weeks ago so I haven’t had my meetings with the big team yet, so I don’t know what all my options are, but your comment here really helped calm my nerves. Thank you so much for taking time to respond to the OP.

cog81 | @cog81 | Jul 31 2:57pm

In reply to @cog81 "@lifetravler Thank You for the hug. I send You a hug as well COG81" + (show)

After 2 lumpectomies I have had a 3rd surgery for right breast and muscle mastectomy.

dolphina3 | @dolphina3 | Jul 31 3:59am

In reply to @olivia7850 "Hello Dolphin3: Yes, I still have chemo but at stage 4 (metastatic) it is considered palliative,..." + (show)

Hi olivia7850,
I am sorry you are going thru this and am glad you have the best chemo they have to date. Just a thought
You tube has some interesting women and there cancer treatments, one in particular had stage 4 she says what things she tried and her results.
I hope you know you are not alone and that I, we on this great support site are thinking of you.
Hugs

dolphina3 | @dolphina3 | Jul 31 3:36am

In reply to @mjorskir "Thank you so much for the reply. This is happening so fast. Mammogram the middle of..." + (show)

Hi mjorskir,
I decided to do masectomy without reconstruction because at 67 I didn't want more surgery my oncologist explained what would be involved and I didn't want to go thru more surgeries. They said I could have lumpectomy but my thoughts were since they don't know alot about tnbc and Ilbc I want to give myself the best chance. I only had the cancer breast removed and I am glad I did but it is an adjustment. Finding bras and looking in the mirror at first is an adjustment. Look at pictures of reconstruction and masectomy without reconstruction. From what I learned large tumors and cancer in lymph nodes requires chemo first
Ask the surgeon alot of questions. Ask the oncologist, nurses, all your questions. I made a list of questions because it does all happen fast in the beginning. I hope this helped and sending hugs for you thru out your research.

olivia7850 | @olivia7850 | Jul 30 9:47pm

In reply to @dolphina3 "Hi , I guess we can say we are really original. Have you completed treatment. Sending..." + (show)

Hello Dolphin3:
Yes, I still have chemo but at stage 4 (metastatic) it is considered palliative, not curative. The chemo I have is brand name Trodelvy, or sacituzumab govitecan. It is for metastatic triple negative cancer. It is definitely the best chemo to date. If I knew then what I know now, I would have begged for it first.
Take care and hugs back to you.

olivia7850 | @olivia7850 | Jul 30 9:32pm

In reply to @mjorskir "Thank you for the reply. I am/have? HR positive, HER negative and I am 64 years..." + (show)

Hello Mjorskir:
Thank you for sharing more info and wow! You have a lot going on.
First, for me and most people, the port install is not bad at all. Mine was under conscious sedation with a very cheerful surgeon. I'm sure it will go well.
Second, whenever my port is accessed (for chemo or regular blood test), I put on lidocaine/prilocaine cream. I put it on about 1 hour and 15 minutes before the scheduled port access. Your doctor or nurse can prescribe it for you. Use a generous nickel-size dollop o top of your port and then put a Tegaderm bandage over it. Your nurse can give you Tegaderms or you can order them online. Do not rub the cream in. Make sure your bra strap is moved down so the strap does not interfere with the cream. This cream will greatly reduce or eliminate any pain when the port needle is inserted.
Next, ask your doctor or nurse what your stage is. You can read online about what the TMN staging signifies.
Fourth, there is a good resource online with free educational videos on all aspects of breast cancer and treatment. It is Yerbba.com. The doctor in the videos is a breast cancer oncologist and a professor at University of Michigan medical school. Each video is fairly short and well done. You can go to that site and get a great deal of information that is current. She has a video or two that explains the TMN staging.
Fifth, the brand name for immunotherapy that you may receive is called Keytruda, the scientific name is pembrolizumab. The 'mab' at the end of any med means it is a monoclonal antibody. Again, you can read online about the many studies and also watch the Yerbba videos. If your doctor does not use Keytruda, ask about it, why or why not.
Sixth, I can imagine that your nurse navigator has a lot of great tips for you. She sounds like a great resource. The chemo nurses will also be super helpful and have many practical ideas and tips. You will get to know them and they will take excellent care of you. They will administer pre-meds before each chemo session prevent nasty side effects such as nausea and diarrhea. I never had any nausea during the neo-adjuvant (pre -mastectomy) state of chemo.
Seventh, use Mepitel Film for your radiation. It is a wound dressing that has proven highy effective in clinical trials to greatly reduce radiation dermatitis and moist desquamation. Ask your radiologist about it. If your radiation clinic does not provide it, ask them to tell you where you can buy it online. It will be worth it. Enlist your nurse navigator on this project. For info, Google 'mepitel film breast radiation'.
I can't comment on the order of your treatments as I am not a medical professional. But nothing sounds wrong about it.
You can do this! It's all overwhelming now, but you can handle it. Educate yourself and ask lots of questions. Write your questions down and take them with you to your appointments. If you are 2A you are at a very early stage and have every excellent chance of a full recovery. So go for it! You are just a young lady at age 64. You've got this. You have a lot more life to live!
Please accept my very best wishes for a successful treatment and great life afterwards!

mjorskir | @mjorskir | Jul 30 8:10pm

In reply to @jenyu "Is yours ++- (HR+, her2-) and what stage it is ? I diagnosed invasive lobular ++-..." + (show)

The chemo data is concerning and is the plan for me in the right order.
It is HR pos. and HER2 negative. Stage 2 A (in lymph nodes).
Thank you for the reply and caring!!

View More View Less

Please sign in or register to post a reply.

Neuropathy

17314

47 minutes ago

Osteoporosis & Bone Health

11312

50 minutes ago

Neuroendocrine Tumors (NETs)

2720

1 hour ago

Women's Health

11380

6 hours ago

Cancer

8743

13 hours ago