Invasive Lobular Carcinoma

trsmith0104

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

Welcome to the board
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

My cancer was lobular; and
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

Clementine_P

I had Invasive Lobular Cancer
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

Clementine_P said:

I had Invasive Lobular Cancer
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

Can I ask what type of
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

trsmith0104 said:

Can I ask what type of
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......

Tonia you are not alone
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

RozHopkins

Invasive lobular
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.

lynn1950

lynn1950 said:

My cancer was lobular; and
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

At first my surgeon was
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

trsmith0104 said:

Can I ask what type of
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......

You can ask
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

Clementine_P said:

You can ask
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

Tonia, I don't have this
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

carkris

RozHopkins said:

Invasive lobular
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.

My second affected breast
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

Clementine_P said:

You can ask
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

As you have explained you
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

trsmith0104 said:

As you have explained you
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

Hi Tonia,
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

Clementine_P said:

Hi Tonia,
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

I have been leaning towards
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

trsmith0104 said:

I have been leaning towards
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)?

I completely understand
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.

trsmith0104

carkris said:

My second affected breast
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.

The meeting with the surgeon
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

trsmith0104 said:

The meeting with the surgeon
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.

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


Hugs, Debby

Vinceandjera

trsmith0104 said:

I have been leaning towards
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)?

I am in the middle of chemo
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.

tko683

Sorry to hear of your diagnosis but
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

tko683 said:

Sorry to hear of your diagnosis but
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

You've had your surgery by
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

Hi Tonia, I'm 40, bilateral
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