what do you know about infiltrating lobular cancer

Mrs. Riddle
Mrs. Riddle Member Posts: 1
edited March 2014 in Breast Cancer #1
The day after Christmas I found out that this is what I have...I dont yet know what stage it is in but they are leaning more to stage 3 or 4 :(

any help would be great!!!!

thanks

Comments

  • zahalene
    zahalene Member Posts: 670
    Hello Mrs. R
    I am sorry I don't have any specific information on your type of cancer but I just wanted to say that I strongly encourage you to make yourself at home here (and in our wonderful chat room if you so desire) and let us uphold you through your battle. Because this is DOABLE. We have many here who have gone through and come out on the other side with life and health and happiness in tact. Me, for example. I am a 22 1/2 year breast cancer survivor.
    Please know that we are here for you any time you need us.
    God bless.
  • eau246
    eau246 Member Posts: 2
    infiltrating lobular cancer
    I was diagnosed with infiltrating lobular cancer in my left breast on May 2, 2008. One of the characteristics of lobular cancer is that it has been found to mimick itself in the other breast, usually within three years. I found this out through speaking with cancer surgeons and oncologists. After learning the recurrence possibiliteis, I opted to have a bi-lateral mastectomy on June 16, 2008. I had expanders put in right away so I could begin reconstruction. I had one positive lymph node, but the tumor was .5 mm in size so with the meastectomy I did not need radiation. The positive node did make it necessary for me to go through chemotherapy. My last chemo treatment was 8-16-08...yeah!!!! My expanders were replaced with 580 cc silicone implants on 12-11-08. I was a full "c" before and I am not very happy with the results considering I told him I wanted to be the same size I had been. Oh well....too late now. I still have to have to go through the nipple reconstruction, but at least that wion't involve drains. My oncologist wants me to have a hysterectomy, but I have not scheduled that yet as I am just not completely comfortable.

    I hope this help a little. I will happily help anyway that I can with your questions. It is a long road, but you have to stay positive and keep moving! Don't stop for anything. When you feel like curling into a ball and staying in bed....get up and enjoy life.

    God Bless!
  • lynn1950
    lynn1950 Member Posts: 2,570
    Stage 3 or 4?
    I had infiltrating lobular cancer in my left breast. Also some ductal stuff going on. I have been diagnosed as stage 3a. I didn't know that infiltrating lobular cancer oftentimes is mimicked in the other breast until I read eau's post.

    I chose a bilateral mastectomy because I'm a wimp and I didn't want to go through the surgery more than once. It's amazing how little information I had when I made my choice, but I am glad I did, and my surgeon, who had recommended a lumpectomy, said I had made the right choice too.

    Staging is based on a lot of things including tumor size, cancer cell characteristics (how aggressive the cancer is)which comes in your pathology report, and lymph node involvement. If the cancer has spread to other parts of your body - that's stage 4.

    Your treatment will also depend upon whether or not your cancer likes to grow with estrogen or progesterone (estrogen or progesterone positive). If it does you may be a candidate for Arimidex, which is a drug you take for 5 years. If you have overexpression of HER-2/neu then there is a drug call Herceptin that you can take.

    Never be afraid to ask questions. Ask lots of questions! Tape record stuff. See your doctors with your partner or a friend. This may already be too much information.

    Come here for support. The people here are loving, kind, and so uplifting!

    Lynn
  • ciaocarm
    ciaocarm Member Posts: 1
    eau246 said:

    infiltrating lobular cancer
    I was diagnosed with infiltrating lobular cancer in my left breast on May 2, 2008. One of the characteristics of lobular cancer is that it has been found to mimick itself in the other breast, usually within three years. I found this out through speaking with cancer surgeons and oncologists. After learning the recurrence possibiliteis, I opted to have a bi-lateral mastectomy on June 16, 2008. I had expanders put in right away so I could begin reconstruction. I had one positive lymph node, but the tumor was .5 mm in size so with the meastectomy I did not need radiation. The positive node did make it necessary for me to go through chemotherapy. My last chemo treatment was 8-16-08...yeah!!!! My expanders were replaced with 580 cc silicone implants on 12-11-08. I was a full "c" before and I am not very happy with the results considering I told him I wanted to be the same size I had been. Oh well....too late now. I still have to have to go through the nipple reconstruction, but at least that wion't involve drains. My oncologist wants me to have a hysterectomy, but I have not scheduled that yet as I am just not completely comfortable.

    I hope this help a little. I will happily help anyway that I can with your questions. It is a long road, but you have to stay positive and keep moving! Don't stop for anything. When you feel like curling into a ball and staying in bed....get up and enjoy life.

    God Bless!

    lobular cancer
    My doctor told me she suspects lobular cancer and had orderd an MRI. Can anyone tell me the symptoms they had prior to being diagnosed? I am having difficulty finding any information and my insurance company is denying my doctor's request for an MRI because I don't "meet the criteria." I would appreciate any information. Thanks so much!
  • NorcalJ
    NorcalJ Member Posts: 187
    Lobular
    I, too, had infiltrating lobular that was 9cm!! As well as a DCIS. It surprised even my excellent surgeon. Everyone was sure they were dealing with just ductal. But it was a grade 1, which meant it was slow growing. I really didn't have any symptoms, but I spotted it an inverted nipple a couple of months after they said my mammogram was normal!!!

    I had a mastectomy, chemo and radiation, and had already planned to have the bilat. mast. and reconstruction. I didn't know about the possibility of it in the other breast though, so I'm glad that I've already made the decision.

    All I can tell you is that I'm really glad I've done everything I could. Read as much as you can (and stop when you feel overwhelmed---I found I could only take so much before I'd switch the computer off), and come back here for the wonderful support. Write down your questions for your doctor, and don't let him/her leave the room until you understand the answer---NOTHING is a dumb question---absoulutely NOTHING! If it's important enough for you to ask, it's important. Take someone with you to write down answers and you write them too, then you 2 compare. It'll help a lot to have another pair of ears.

    Good luck, and let us know how it goes.
  • KathyF2009
    KathyF2009 Member Posts: 3
    NorcalJ said:

    Lobular
    I, too, had infiltrating lobular that was 9cm!! As well as a DCIS. It surprised even my excellent surgeon. Everyone was sure they were dealing with just ductal. But it was a grade 1, which meant it was slow growing. I really didn't have any symptoms, but I spotted it an inverted nipple a couple of months after they said my mammogram was normal!!!

    I had a mastectomy, chemo and radiation, and had already planned to have the bilat. mast. and reconstruction. I didn't know about the possibility of it in the other breast though, so I'm glad that I've already made the decision.

    All I can tell you is that I'm really glad I've done everything I could. Read as much as you can (and stop when you feel overwhelmed---I found I could only take so much before I'd switch the computer off), and come back here for the wonderful support. Write down your questions for your doctor, and don't let him/her leave the room until you understand the answer---NOTHING is a dumb question---absoulutely NOTHING! If it's important enough for you to ask, it's important. Take someone with you to write down answers and you write them too, then you 2 compare. It'll help a lot to have another pair of ears.

    Good luck, and let us know how it goes.

    lobular
    Hi Mrs. R.
    I too had lobular CA, I found the lump at the end of June 08, both the mamagrams and the Ultrasounds were negative, even though I felt a large lump. I pointed it out the the techs. My tests came back negative. But the lf breast was becoming more painful. So I asked for the bx I has stage 2 invisive metastic lobular CA. Talk about a shock. So the lf breast came off July 25, and then 3 weeks later the Rt breast came out too. I had 4 areas that looked canceroius. So thats what happened to me. Now I have not had the reconstruction done nor do I want to. I am scared to death of infection, rejection, or whatever. I am a woman just the way I am. And if nobody dont like it to bad. Of course that pissed off my mother in law, but oh well its not her body. I went though chemo and I am on Femara now. I went back to work the first part of November and I'm a long term care nurse. There are bad days and there are good days. I have trouble lifting things but I hope I get stronger. Its not the end of the world if I can lift a grogery bag. Oh the size of my Ca was a baseball and very aggressive. I was lucky to have demanded a bx I might not of turned out so well if I would have waited.

    Take care you'll be alright we are here for you, Kathy