with breast cancer. My ultra-sound, needle-guided biopsy said my tumor was 1.7 cm so I was hoping for a lumpectomy, radiation and possibly chemotherapy if necessary. Today when I met with the surgeron, he told me that I have have "infiltrating lobular carcinoma", and recommends a mastectomy because he won't be able to get clear margins with a lumpectomy as the cancer is kind of scattered throughout the upper portion of my breast. He also said that my other breast may be affected and I'll be having an ultrasound on that side. I'm looking at bi-lateral mastectomy. I don't know how I'm staged yet and they won't know until I have surgery and pathology is done on my nodes and the tumor. From what I'm understanding, this cancer doesn't always show up on a mammogram as a lump, just as thickening, and I've had lumpy breasts for years. I had a mammogram 8 months ago and was cleared of any abnormality, even though I went to the doctor specifically with a palpable lump. Does anyone know about this kind of cancer?

Robin

>>with breast cancer. My ultra-sound, needle-guided biopsy said my
>tumor was 1.7 cm so I was hoping for a lumpectomy, radiation and
>possibly chemotherapy if necessary. Today when I met with the
>surgeron, he told me that I have have "infiltrating lobular
>carcinoma", and recommends a mastectomy because he won't be able to
>get clear margins with a lumpectomy as the cancer is kind of
>scattered throughout the upper portion of my breast. He also said
>that my other breast may be affected and I'll be having an ultrasound
>on that side. I'm looking at bi-lateral mastectomy. I don't know how
>I'm staged yet and they won't know until I have surgery and pathology
>is done on my nodes and the tumor. From what I'm understanding, this
>cancer doesn't always show up on a mammogram as a lump, just as
>thickening, and I've had lumpy breasts for years. I had a mammogram 8
>months ago and was cleared of any abnormality, even though I went to
>the doctor specifically with a palpable lump. Does anyone know about
>this kind of
>cancer?


I think you should go to the Surivorship Forum on this site, and read all the entries under INVASIVE LOBULAR CLUB. The words "invasive" and "infiltrating" must be interchangeable. At any rate, just reading these should help you with either some information, different perspective, or just moral support for what you're going through. Good luck!

Robin,

on the Survivorship board there is a recent entry with a Lobular Invasice Club subject title. May be a good place to make some contacts with people in the same "boat" as you. I'm newly diagnosed, too, but they think it is ductal. Won't know anything else until after the surgery to remove it. I'm still debating lumpectomy vs. mastectomy. Seems the more I find out...the less I'm sure of what to do. Good luck to you.

Blessings, Brenda

>>with breast cancer. My ultra-sound, needle-guided biopsy said my
>tumor was 1.7 cm so I was hoping for a lumpectomy, radiation and
>possibly chemotherapy if necessary. Today when I met with the
>surgeron, he told me that I have have "infiltrating lobular
>carcinoma", and recommends a mastectomy because he won't be able to
>get clear margins with a lumpectomy as the cancer is kind of
>scattered throughout the upper portion of my breast. He also said
>that my other breast may be affected and I'll be having an ultrasound
>on that side. I'm looking at bi-lateral mastectomy. I don't know how
>I'm staged yet and they won't know until I have surgery and pathology
>is done on my nodes and the tumor. From what I'm understanding, this
>cancer doesn't always show up on a mammogram as a lump, just as
>thickening, and I've had lumpy breasts for years. I had a mammogram 8
>months ago and was cleared of any abnormality, even though I went to
>the doctor specifically with a palpable lump. Does anyone know about
>this kind of
>cancer?

Brenda, dx 2/13/04

>>with breast cancer. My ultra-sound, needle-guided biopsy said my
>tumor was 1.7 cm so I was hoping for a lumpectomy, radiation and
>possibly chemotherapy if necessary. Today when I met with the
>surgeron, he told me that I have have "infiltrating lobular
>carcinoma", and recommends a mastectomy because he won't be able to
>get clear margins with a lumpectomy as the cancer is kind of
>scattered throughout the upper portion of my breast. He also said
>that my other breast may be affected and I'll be having an ultrasound
>on that side. I'm looking at bi-lateral mastectomy. I don't know how
>I'm staged yet and they won't know until I have surgery and pathology
>is done on my nodes and the tumor. From what I'm understanding, this
>cancer doesn't always show up on a mammogram as a lump, just as
>thickening, and I've had lumpy breasts for years. I had a mammogram 8
>months ago and was cleared of any abnormality, even though I went to
>the doctor specifically with a palpable lump. Does anyone know about
>this kind of
>cancer?


Robyn..I was diagnosed in May 03 with the same thing. I had a lumpectomy and they did not get clean margins. My tumor size was supposed to be 38 mm. The doctor wanted to go back in to clean me up. I wanted to know if this cancer could run in my other breast. He said that there was a chance over my lifetime. Well, I am a 44 year old women with a great husband and 2 kids and I just wanted to get things over with. I felt that I was in terrific condition to do the surgery now. I chose to have a bilateral mastectomy with reconstruction.I have tissue expanders in now and am having my implants put in on March 5. I feel great!! To my surprise they told me the invasive lobular cancer was actually 3 cm. I chose to do an alternative therepy to chemo. I just felt that since my nodes were clean and my lymphatics as well, I did not want to kill a good immune system. The drs. wanted to pound me with chema and I said No!!! So, I researched and found this therepy is being used in Europe with a great response. My cancer was estrogen positive so I have to take tamoxin for 5 years but I also chose to take lupron shots monthly. The shot throws you into menopause so you have to suffer through all those symptoms but for me I would rather go this route. You have to sit quietly and do what is right for you!! You will know. I am looking forward to my new breasts and the long life that is in front of me. I feel wonderful about the choice I made. When I took the 2nd lupron shot I crashed into menopause so I was extremly fatigued. But, I started to take some good vitamins and anti-oxidants and I am just fine. I exercise 5 times a week and laugh at everything. Good luck with your choices and know I will be rooting for you.You will be fine. It's scary at first but then you just move on....the human spirit is great!!Pam
PS I also did 2 breasts at once for the symmetry.

Robin,
I was diagnosed with ILC on 2/4/04. (I just responded to the "Invasive Lobular Club" message board as well.)

On 2/24/04 I had a lumpectomy in my left breast w/ sentinel node biopsy and biopsy of right breast because of fear of bilateral breast cancer. I will get results on 3/3/04. This will determine whether I need chemo (and/or mastectomy.)

Unfortunately, this cancer is not as common and I am desperate for information on bilateral ILC and survival rates. My limited advice is to make sure that you go to a "BREAST SURGEON" for your surgery, NOT a general surgeon.
Good luck to you.

I am happy to talk with you directly. My email is lwhitegironda@aol.com if you want to email me.


>>with breast cancer. My ultra-sound, needle-guided biopsy said my
>tumor was 1.7 cm so I was hoping for a lumpectomy, radiation and
>possibly chemotherapy if necessary. Today when I met with the
>surgeron, he told me that I have have "infiltrating lobular
>carcinoma", and recommends a mastectomy because he won't be able to
>get clear margins with a lumpectomy as the cancer is kind of
>scattered throughout the upper portion of my breast. He also said
>that my other breast may be affected and I'll be having an ultrasound
>on that side. I'm looking at bi-lateral mastectomy. I don't know how
>I'm staged yet and they won't know until I have surgery and pathology
>is done on my nodes and the tumor. From what I'm understanding, this
>cancer doesn't always show up on a mammogram as a lump, just as
>thickening, and I've had lumpy breasts for years. I had a mammogram 8
>months ago and was cleared of any abnormality, even though I went to
>the doctor specifically with a palpable lump. Does anyone know about
>this kind of
>cancer?

Linda

Pam Jerkovich


>>with breast cancer. My ultra-sound, needle-guided biopsy said my
>tumor was 1.7 cm so I was hoping for a lumpectomy, radiation and
>possibly chemotherapy if necessary. Today when I met with the
>surgeron, he told me that I have have "infiltrating lobular
>carcinoma", and recommends a mastectomy because he won't be able to
>get clear margins with a lumpectomy as the cancer is kind of
>scattered throughout the upper portion of my breast. He also said
>that my other breast may be affected and I'll be having an ultrasound
>on that side. I'm looking at bi-lateral mastectomy. I don't know how
>I'm staged yet and they won't know until I have surgery and pathology
>is done on my nodes and the tumor. From what I'm understanding, this
>cancer doesn't always show up on a mammogram as a lump, just as
>thickening, and I've had lumpy breasts for years. I had a mammogram 8
>months ago and was cleared of any abnormality, even though I went to
>the doctor specifically with a palpable lump. Does anyone know about
>this kind of
>cancer?


Robyn..I was diagnosed in May 03 with the same thing. I had a lumpectomy and they did not get clean margins. My tumor size was supposed to be 38 mm. The doctor wanted to go back in to clean me up. I wanted to know if this cancer could run in my other breast. He said that there was a chance over my lifetime. Well, I am a 44 year old women with a great husband and 2 kids and I just wanted to get things over with. I felt that I was in terrific condition to do the surgery now. I chose to have a bilateral mastectomy with reconstruction.I have tissue expanders in now and am having my implants put in on March 5. I feel great!! To my surprise they told me the invasive lobular cancer was actually 3 cm. I chose to do an alternative therepy to chemo. I just felt that since my nodes were clean and my lymphatics as well, I did not want to kill a good immune system. The drs. wanted to pound me with chema and I said No!!! So, I researched and found this therepy is being used in Europe with a great response. My cancer was estrogen positive so I have to take tamoxin for 5 years but I also chose to take lupron shots monthly. The shot throws you into menopause so you have to suffer through all those symptoms but for me I would rather go this route. You have to sit quietly and do what is right for you!! You will know. I am looking forward to my new breasts and the long life that is in front of me. I feel wonderful about the choice I made. When I took the 2nd lupron shot I crashed into menopause so I was extremly fatigued. But, I started to take some good vitamins and anti-oxidants and I am just fine. I exercise 5 times a week and laugh at everything. Good luck with your choices and know I will be rooting for you.You will be fine. It's scary at first but then you just move on....the human spirit is great!!Pam
PS I also did 2 breasts at once for the symmetry.

Hello Everyone, I know this posting is very old but I just discovered it today and felt the need to reply to it for the benefit of any other people who may stumble across it.
 
Pammy was my sister in law.  A beautiful, wonderful person who passed away a year ago in February, I am sorry to say.
For the reasons above, and for whatever other reasons I will never really figure out, she was adamently against chemotherapy and would not use it until the cancer had traveled to her bones and she really had no choice.  I am no doctor, nor have I had to go through any type of cancer treatment (yet, knock wood), so I am no expert.  And I also recognize that everyone has to do what they feel is right for themselves.  But, in my heart of hearts, I believe if Pam had agreed to chemo right at the beginning, there would have been a better chance that the cancer would not have migrated over 7 years from the breast to the lymph, to the bones and finally to the brain.
 
I would just like to say...(and this is just my own feelings talking here:
 
Ladies...Please, please follow the course of treatment that your doctors recommend!  If you are unsure or have any doubts, get a second and even a third opinion.  But, if they all recommend chemo, please do what they say!
 
I know it's easy for me to say as someone who has never gone through it.  I have enough friends who have gone through it to know it can be an extremely tough period of time to get through.  But, I truly feel if Pam had done it, there is a good chance that she would still be here with us.  Pam did extensive research for alternative methods and tried many of them.  She was very brave, fought valiantly, and always had a positive attitude.  
 
I love her and miss her everyday....she was a wonderful person.
 
Thanks for listening and prayers and best wishes to everyone on this board.
 

Hi Linn and thank you for your message which I'd second completly, I'm so very sad you lost Pam and I'm sure she felt the need to treat this disease her way but sadly it did' nt work and I thank you for posting her story here as its possible your message may save lives!!
(((((hugs))) and I'm so sorry for your loss

Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Lin,
Im so sorry for the loss of your dear SIL, Pammy.  And for coming back here to tell her story in hopes of helping newly diagnosed women with the difficult decisions we all have to make .
 
I hope she didn't die with regrets about the choices she made when first diagnosed.  I had a good friend who shunned traditional tx when she was stage lV, and subsequently lost her life.  But she  believed that the nontraditional tx gave her at least a year longer than she would have had.
 
I'm a great believer in second and third opinions, especially when there is  surgery or questionable tx options involved. I hope your message will make the difference for someone facing  tx choices and I send my condolences to your family, and her dear children     

dx ILC/dcis excisional biopsy 5/30/08
r segmental mast (partial) snb 6/4
node neg stage1 gr ll
er+/pr- Her2 - Oncotype Dx 11
R mast 9/22/08 w DIEP
tamox,now AI 
BRCA 1 & 2 NEG
davinci hyst/bso,  

Tricia, thank you very much for your kind words.  I really appreciate it and I also appreciate your saying that maybe my message will save lives.  That would be just wonderful.
 
Linda

sharonma

I hope she didn't die with regrets about the choices she made when first diagnosed.  I had a good friend who shunned traditional tx when she was stage lV, and subsequently lost her life.  But she  believed that the nontraditional tx gave her at least a year longer than she would have had.

Sharon, thank you so much for your kind reply.  I did want to assure you that Pam had no regrets at all and was very accepting and at peace with her decision.  I'm sure she was hoping that her alternative methods would result in a cure, but she never regretted not taking the chemotherapy in the beginning.  I think she believed that she had a better quality of life during the time she did have, as opposed to what it would have been like had she been undergoing chemo.  And although the cancer did keep popping up in different places every couple of years,  she would get surgery and/or radiation and take different meds and she kept bouncing back and would return to relative good health until the next time.  So, it was just very hard for all of us to accept that she wasn't going to bounce back the last time it showed up in her brain.
 
The one who is regretful is me.  I am regretful for her, for her decision, because I feel that if she had taken the chemo right from the beginning, that maybe that would have taken care of any stray cells and the cancer would not have continued to keep coming back.  But, those are my feelings.  Like I had said, Pammy was very brave and confident in her decisions, although of course, she would have like a different ultimate outcome.
 
Thanks again for listening....
 
Linda