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Lobular Breast Cancer.. Chemo before surgery...Support please...

Posts: 2
Joined: Oct 2011

I was diagnosed with Lobular Carcinoma of my (L) Breast in August 2011. Started A & C Chemo treatment for (4) cycles every 2 weeks the end of August. To start Taxol next week for (4) cycles every two weeks. Last chemo really knocked me out. Just trying to deal with the awful side effects as best as I can.

Had Mamo in Jan 2011...all clear. Due for Sono in July 2011. Primary MD picked up abnormality during Physical exam in July 2011. Sono and biopsy done after which confirmed Lobular Cancer. This type of Breast Cancer is not as common and difficult to read on Mamography, so usually diagnosed at a later stage. Loved to hear from anyone for support, especially those with Lobular Breast Cancer.

New Flower
Posts: 4299
Joined: Aug 2009

WElcome to the board,
I have had 3 types of cancer in my left breast, including lobular. You are correct, typically lobular it is not showing on Mamo, my Mamo was not exception, showing a tumor size 1.2x1.6 cm, which after mastectomy appeared to be 6.5 cm. My post-mastectomy diagnosis was Stage IIIC . It was almost 3&1/2 years ago, in 2008.
I have had mastectomy first followed by 6 cycles of Chemo , 40 radiation treatments and currently on estrogen blockers. I know you are a little scared, and it is OK.
You have a long road in front of you, and will be fine by the end. Do not worry, follow your doctor's recommendations and enjoy your family and friends
New Flower

mamolady's picture
Posts: 796
Joined: May 2011

I was diagnosed with IDC, 3 masses and 5 lymph nodes. The mammo did not catch because I have very dense breasts. I too did the AC 4 cycles every 2 weeks, then 12 cycles of taxol. The AC sucks, the taxol is a little easier to deal with.
My mastectomy was after all the chemo. Then 30 rads! Crazy 9 months. I am only a year from diagnosis and starting to feel more like myself.
You will probably hear from more women that are farther out!

All the best,

Let people take care of you, they will appreciate it as much as you will.

carkris's picture
Posts: 4554
Joined: Aug 2009

I had IDC in 1994 and lobular in 2009, had the same chemo except taxol was for 12 weeks. the lobular was not found on mammo nor was the first one as I was 34 years old. I didnt do great on chemo, but the point is I did it and have hair and everything!!! new Flower is right. This is a great place for support.
Also I had surgery then chemo then radiation.

DianeBC's picture
Posts: 3886
Joined: Jun 2009

I didn't have this type of bc, but, wanted to welcome you to this site and to let you know that I will be praying for you.

Hugs, Diane

Posts: 265
Joined: Aug 2011

Very sorry to hear about your diagnosis. I also had Lobular carcinoma. I had the A/C chemo for 4 cycles, and then 4 cycles of taxotere. The taxotere was much easier than the a/c. I had my mastectomy after the 4 cycles of a/c. I also had radiation for 6 weeks after my chemo and then I had a year of Herceptin since I was Her2 positive. I was dx in 2004 with stage 3. Mine did not show up on a mamo either. The treatment was long for me but I am still here and only on tamoxifen right now. My advice, find a wonderful surgical oncologist and take one day at a time. It goes by fast and you will be on the road to recovery soon. I am living proof that the chemo works.
Sending prayers,

Kylez's picture
Posts: 3765
Joined: May 2009

I am so sorry for your diagnosis. I had IDC and had a lumpectomy with rads. I want you to know that you will be in my thoughts and prayers. Keep updating us as to how you are doing.

Hugs, Kylez

Angie2U's picture
Posts: 2992
Joined: Sep 2009

I wish I could give you advice on Lobular bc, but, I don't know much about it and I didn't have chemo, just rads after my lumpectomy.

I do want to let you know that I will be praying for you and I hope another pink sister can give you some advice and help.

Hugs, Angie

cahjah75's picture
Posts: 2631
Joined: Jun 2010

lobular carcinoma in right breast with a tumor 6.1cm and left breast had Lobular Carcinoma in situ. My gyn felt the lump in my annual exam and I was already scheduled for my mammo the next day. I had MRI, biopsy, stereostatic biopsy and then surgery. Since I'm the 5th in my family with breast cancer I had bilateral mastectomy followed by 6 rounds of TC and 28 rads. I'm now on Anastrozole for 5 years. I wish you well in your treatment.
{{hugs}} Char

Posts: 4376
Joined: Jun 2009

Just wishing you the best in your treatment and saying how sorry I am that you even have to go thru any treatment at all.



Posts: 2
Joined: Oct 2011

Thank you all so much for your replies. Appreciate hearing your stories and admire your bravery.
It is very encouraging. Thank you for your good wishes, support and prayers.

Saw the surgeon today as I am half-way through the Chemo treatment. Although she will be re-evaluating the disease after chemo with another MRI and has not ruled out lumpectomy, she is "gently" encouraging me to consider bilateral mastectomy with reconstruction (DIEP).I know logically that bi-lateral mastectomy is the right way to go, but I am still not ready to accept it. Chemo has been tough and the thought of going through this again, knowing what I know now, is just not something I want to face again. I want the best possible outcome with the lowest risk of re-occurrence. Lobular BC carries a much higher risk of occurring in the other breast and i already have Lobular Carcinoma in Situ( Pre-Cancer) in the (L) breast.

I know this is an emotional roller coaster and I have a long road ahead of me. Trying to get through the chemo first, then surgery, then radiation. Trying to remain positive, but tough when I don't feel good. Best coping strategies? How did you make a decision about what kind of surgery to have? Thanks again for all the responses...much appreciated!

lynn1950's picture
Posts: 2574
Joined: Jun 2008

Hi mandirae. I was diagnosed in 2007 with lobular carcinoma which had spread to my lymph nodes - Stage IIIa. My surgeon encouraged me to have a lumpectomy, but I chose to have a bilateral mastectomy. My surgery came first, then I had 4 rounds of A/C and four rounds of Taxotere; six weeks of radiation followed. I have just completed my third year on Arimidex and sometimes I think I would like to have reconstruction. It is a long haul - just take it one step at a time.

Some decisions, such as mine to have a bilateral w/o immediate reconstruction, come from the heart. I wanted to do everything to make sure that I would not have to go through surgery, chemo, and radiation more than once. I don't regret it.

BTW - after my surgery, my surgeon told me that I had made the right choice.

Use every bit of social, emotional, and medical support that is available to you to help you cope. I know you will find answers to questions and hope here on this site. xoxoxo Lynn

DebbyM's picture
Posts: 3293
Joined: Oct 2009

Mandirae, I was fortunate in the fact that I could have a lumpectomy, followed by rads. My tumor was small and the surgeon got clean margins.

Your oncologist and breast surgeon give you their opinion and you need to take that and educate yourself and do what is best for you.

I know it is hard to stay positive thru all of this, but, just know that there is light at the end of the tunnel and we will all be there with big, bright flashlights for you.

Hugs, Debby

Angie2U's picture
Posts: 2992
Joined: Sep 2009

First, congrats on reaching your halfway point with chemo! Try to do things and be with people that make you happy. Eat well, exercise and just take care of you!

Best of luck in what you decide,


Posts: 579
Joined: Dec 2010

Had this in one side 2 cm. Stage 2. I had a mastectomy on that side because an MRI showed another possible area of question. So had mastectomy and the second area turned out a false positive. BUT because I was a large size the plastic surgeon reduced my good side and the material he took out is automatically sent for lab work. They found ILC in its very early stages, quite a lot of cells and a small already active area. So, mastectomy the next month on the other side. This cancer in my opinion, knowing what I now know is best dealing with straight away and would have had bilateral, all done at once, healing together, drains at the same time, reconstruction at the same time making both sides even. And of course chemo, my chemo came after surgery, four sessions. No radiation. It took around 9 month to start feeling as well as before this happened. Just on Tamoxifen. Cancer estrogen positive and was premenopasal. Had mamos every year for 12 years and as you say this one isn't easily picked up, never spotted mine. No more mamos in the future just MRI if needed. Good luck please keep in touch. Hope this helped.

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I'm always here to support you and to encourage you. All of the pink sisters are. I am sending positive thoughts, cyber hugs and lots of prayers.

Hugs, Megan

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