CSN Login
Members Online: 19

Invasive Lobular Carcinoma

trsmith0104
Posts: 35
Joined: Jul 2012

I am new to cancer - I am 43 years old. I have yet to meet with a surgeon and it is inconclusive whether or not the cancer is in my lymphnodes. What sort of experiences have people had with this type of cancer? Is it treatable? Will I live? They are guessing stage 2 but will know for sure until they are able to verify the lymph nodes. Any feedback you have would be helpful. I am scared and lost......

Tonia

New Flower
Posts: 4097
Joined: Aug 2009

Hi
Please do not be scary I was diagnosed with lobular 4 years ago at 46.
Lobular is difficult to detect it doesn't shown on Mamo
Good luck with your appointment
Please come back and tell us what your treatment plan is
New Flower

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

My cancer was lobular; and was, as New Flower says, difficult to detect. I was first staged at 2, but after surgery that was changed to 3A. 4 1/2 years have passed since I was first diagnosed.

The cancer journey IS into unknown, scary territory, so take a deep breath and take it one step at a time. The stages are treatable and there are many of us here to help you along the way. Please keep coming and asking questions. xoxoxox Lynn

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

At first my surgeon was recommending a lumpectomy. I responded from an emotional part of me that pushed extremely loud and incredibly clear for a bilateral mastectomy. My sentinel node biopsy was at the same time as my mastectomies and it turned out that 7 of 14 nodes tested positive (hence Stage 3 instead of Stage 2). I am so glad that I had both breasts removed at the same time, even though there was no evidence of cancer in my right breast. My treatments included dose dense chemotherapy (adriamycin, cytoxin, and then paclitaxel, followed by radiation. I won't lie - it was a tough six months - but then it was ONLY six months. Now I have one more year of Arimidex.

By the way, afterward my surgeon told me that I had made the right decision.

Clementine_P's picture
Clementine_P
Posts: 390
Joined: Feb 2011

and it was staged at 2A - it has just begun to spread into my nodes. I was 40 when diagnosed. For me the waiting to find out what kind of treatment I would need was the scariest part of this whole experience. It was just so stressful not knowing. Once I met with my surgeon and he discussed the surgery and I had the surgery I felt somewhat better. Just to let you know, that treatment is doable. You will be okay. My best advice to you now is to try not to let things get to you too much now. Take it one day at a time. The ladies here can offer you lots of sage advice. You came to the right place for support.

Hang in there,
Clementine

trsmith0104
Posts: 35
Joined: Jul 2012

Can I ask what type of surgery you had? I am meeting with the surgeon now on 8/8/12 to discuss my options. Although I am sure there are many, I am always interested in what other people have chosen. Also - my cancer has not been staged yet because it is unknown whether or not it is in the lymphnodes. Once they determine this is when I assume they can appropriately stage and determine type of surgery and treatments to suggest. Also, sorry for the questions but did you go through both chemo and radiation? I am sorry for all the questions, and this sounds kind of bad but I am glad there are others out there like me because it helps me to not feel as alone......

New Flower
Posts: 4097
Joined: Aug 2009

I have had several surgeries due to difficulties of detection of lobular features of my tumor: lumpectomy, mastectomy and removal of 21 lymph nodes, and it was staged as IIIC with 10 positive nodes.
My treatment in addition to modified radical mastectomy, I undergone 6 cycles of Chemo therapy, 38 radiation treatments and was on anti estrogen therapy for 3 years.
Since lobular is not easy to detect, I believe mastectomy is the way of treatments
Please stay positive, you are young and have good future ahead.
Hugs
New Flower

Clementine_P's picture
Clementine_P
Posts: 390
Joined: Feb 2011

any question you want! No questions are off limits as far as I am concerned. I was small breasted so a lumpectomy was not a possibility for me. I opted, however to have both breasts removed even though I did not have cancer in the other one. There were many factors that figured into my decision: 1) very strong history of breast cancer in my family, 2) dense and difficult to diagnose breasts, 3) less likelihood of recurrence, 4) aestetically it would be easier to look more "normal" in clothes, and finally 5) peace of mind.

I think it is relatively normal that your cancer doesn't get staged until after your surgery. That is what happened to me. They weren't sure of node involvement so it wasn't until after my surgery and the pathology report came back that I was staged at 2A.

Since I had a double mastectomy, I didn't need radiation, but I did have chemo. Chemo itself was about a 4 month process.

Please know that you are not alone in this.

Best,
Clementine

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

Tonia, I don't have this type of bc, but, wanted to wish you good luck and to let you know that we are all here for you.

Hugs, Angie

trsmith0104
Posts: 35
Joined: Jul 2012

As you have explained you had a double mastectomy. Are you planning to have reconstructive surgery later (after chemo and radiation)? I am a big baby when it comes to pain. I have read that the regular mastectomy (is there such a thing?) is not extremely painful. It is when you add the expanders or the implants after the actual removal of the breast tissue is what causes the discomfort and problems. Keep in mind this is all research that I have read. I get more nervous as the days tick away. It's been almost 2 weeks since I have been told I have cancer and I am just now able to get in to see a surgeon. Good thing it's not an emergency or something.....

Tonia

Clementine_P's picture
Clementine_P
Posts: 390
Joined: Feb 2011

I got expanders put in during my mastectomies surgery and then after chemo had reconstructive surgery. The pain from the mastectomies was really minimal. I don't know if that is because of the pain meds they give you but I can't say that I felt very uncomfortable at all. I had essentially no pain at all from the expanders. When I got filled (every 2 weeks) for that afternoon I would feel tightness but by the next morning it would be gone. I never even felt the need to take a tylenol from the tightness. I will say that the feeling of the expanders in my body was weird. They felt hard and unyielding, however not painful. A few weeks following the completion of chemo, I had the exchange surgery to remove the expanders and replace them with my permanent implants. For that surgery, I was in the hospital in the morning and home before lunch. The implants were more comfortable than the expanders in that they moved and were soft. That weird feeling was gone. I completely understand getting more and more nervous. I wish I could call your surgeon up and have him see you asap! On the good side, the fact that you didn't get an appointment right away could mean that they don't view this as a super serious situation. Nevertheless, I'm with you. Get to the surgery and get it out immediately!

Best, Clementine

trsmith0104
Posts: 35
Joined: Jul 2012

I have been leaning towards this option but am nervous about the implant part. I have read horror stories, etc. Talking to people like you who have been through this makes it feel easier for me even though it probably won't be. Maybe I feel more at peace with it (if that is the right choice of words)?

Clementine_P's picture
Clementine_P
Posts: 390
Joined: Feb 2011

feeling nervous. At the beginning, I was a wreck. I had someone who had been through it to talk to and that really helped me a lot. I'll be around if you have any questions or just want some moral support. Feel free to Private Message me if you prefer that as well. I'll be thinking of you and I hope that everything works out for the best.

All the Best,
Clementine.

Vinceandjera
Posts: 4
Joined: Aug 2012

I am in the middle of chemo and had bilateral mastectomy April 23 with expanders and Nipple sparing surgery. I also had the latissmus muscle move to my breast to give my breast a more normal appearance. I love my breast and have not had any pain with them either. I will not have the implants put in till thanksgiving so I can't speak for that part of it. I will say I had to stay in the hospital for five days for all the surgery I had but I was ready to go home and was back at work four weeks after my surgery.
I had five lymph nodes removed and nothing including my tissue margins came back with cancer. I am blessed. Keep asking questions. Oh I am 36 years old so Im young too. Unfortunately bc doesn't age discriminate.

RozHopkins
Posts: 475
Joined: Dec 2010

Had this also. Stage two no node involvement, hopefully the same for you. Mastectomy one side as they thought more activity in the breast after MRI, other than initial area. Had mastectomy when the questionable second sight tested turned out was false alarm.

Oh no they look it away for no reason. Turns out lucky I did as ................

Whilst having procedure as big busted, plastic surgeon reduced good side, told me they didn't make implants the right size for me! SO any ops on the breast material taken away is tested.

The reduction material tested for a large amount of pre cancer cells plus a small active area. Turns out if hadn't had initial mastectomy the other one would not have shown up for years. Both sides same cancer type, Estrogen positive, no node involvement.

Had second mastectomy one month later, remember this one doesn't show up on mamos most of the time and sorry to say often appears in other breast. Hate to cause you worry, but I am very pleased all was taken away and hoping the Tamoxifen deals with anything lurking. I had chemo only and we can all help you through that, don't scare yourself.. I'm further down the line but doing well, good luck. Hear to chat, vent, advise whatever you need, this sight is excellent and helps no end with anything that crops up.

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

My second affected breast was lobular. treatment depends on type, receptor status, size , nodes, oncotype(potential test). I had mastectomy, chemo and rads. and am on tamoxifen. i am also getting propholactic zometa, althought the stucy has not been conclusive.

trsmith0104
Posts: 35
Joined: Jul 2012

The meeting with the surgeon was interesting. She indicated that because my tumor was small that I only needed a lumpectomy. It is still unknown whether lymphnodes are affected (level 1 is suspect) so they are removing the lymphnodes to be safe. With both of these measures in mind, I am trying to tell myself that they will get all the cancer. I know that cancer is tricky and I also know they test your margins to see where everything is at. My surgery is the 17th. Very nervous....I keep telling myself they will get all the cancer.

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

I want to wish you good luck with your surgery. Praying for clean margins and clean nodes.

Hugs, Debby

tko683
Posts: 257
Joined: Aug 2011

You have come to the right place for support! I was diagnosed 8 years ago with invasive lobular breast cancer, stage 3A. I was 44 years old. I had a mastectomy and chemo and radiation and then I had herceptin. It is very scary waiting to find out about treatment. The chemo was not fun but not anywhere near as bad as I dreamed it would be. The mastectomy surgery was also not very painful. Once you get a treatment plan you will feel much better. I always tell people to get a second opinion on everything. And yes this cancer is very treatable. I am living proof! Blessings, Teri

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

You've had your surgery by now and I pray you are resting comfortably. Lots of positive thoughts and hugs are added for you!

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

Hi Tonia, I'm 40, bilateral with latissamus flap immediate reconstruction. Just want you to know I'm here for ?'s as well. Please let us know how you are doing when you get the chance. In the meantime, take good care of yourself and get plenty of rest.
Miles of Love,
~Kari

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

:-(

trsmith0104
Posts: 35
Joined: Jul 2012

I'm feeling better after surgery. I still am the proud owner of a drain and am hoping this will go away soon. My pathology report came back. My lymph nodes were clean, my margins were clean, and my tumor was 3.5cm. This means I am a stage 2. I meet with the Oncologist and Radiologist tomorrow to find out the damages. As each day passes, I am feeling stronger (the surgery really takes it out of you). My arm is now permanently numb underneath, I was told this would be a possibility to occur. I know that time heals all wounds, so surprisingly I look forward to time passing by to get this all over with as quickly as possible.

Clementine_P's picture
Clementine_P
Posts: 390
Joined: Feb 2011

That you are doing well after surgery. Good luck with the oncologist and radiologist.

Best,
Clementine

Carolw
Posts: 6
Joined: Aug 2012

It sounds like your results are going to be positive. I also had invasive lobular cancer and also had a lumpectomy. The radiation is not bad at all. The first two weeks, you do not even notice anything. The last two weeks it does get uncomfortable, but not painful and the staff is great about giving you various ointments to alleviate any discomfort. It doesn't sound like you will be getting chemo and that is a good thing. The radiation is for 33 treatments and then it is over. I also have to take arimidex because my cancer was estrogen fed. I am not finding that too difficult either. DOn't read all the blogs on it as most people who post are those with problems and there are thousands who take it and don't have bad side effects. good luck. God bless.

trsmith0104
Posts: 35
Joined: Jul 2012

That was exactly my problem. Reading all the blogs. I guess my cancer is IIA, "moderately differentiated". I keep saying in my mind, I know the sucker is going to come back.... Even though my lymph nodes were clean. Scares the hell out of me. Then I read about all the side effects everyone experiences from the Tamoxifen or from the other meds that are out there (I'm oblivious). I just know that I had clean margins, clean nodes, and my grade is IIA and other than that I'm dumber than a box of rocks when it comes to cancer. I am waiting for the Oncotype test to come back. This will tell my oncologist whether or not I need chemo. Pray that I don't. I have read that it wrecks your body....

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Clean margins and clean nodes is the best news! I will be hoping and praying that your Oncotype test will show that you will not need chemo. When are you suppose to get the results?

Hugs, Leeza

trsmith0104
Posts: 35
Joined: Jul 2012

September 12th is my Oncotype results. A long time to wait but hopefully it is worth it and I receive good news :)

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Hoping and praying that on the 12th, you will hear NO chemo!

Hugs, Lex

Jannybird
Posts: 1
Joined: Aug 2012

Hi Tonia-

I was diagnosed at 42 with Stage 3 ILC. Oncologist/Surgeon recommended Chemo/Surgery (bi-lateral mastectomy)/Radiation (in that order). You are going to get through this. My best advice for you is to ALWAYS have someone go with you to all of your Dr appointments for an extra set of ears. The Drs throw so much info at you at it can be very overwhelming. I would find myself completely tuning everything out because it was just too much to handle. Luckily, my husband was with me for every appointment (2 years later, he still never misses one). Have the person that goes with you take notes. My oncologist actually took notes while she would talk to me and give me a copy of the notes which was helpful too.

Peace-
Jannybird

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network