Just diagnosed

Janetplanet
Janetplanet Member Posts: 11
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I have no info - just infiltrating carcinoma with lobula featres. I am seeing a surgeon tomorrow...........  very scared but know that God will walk with me through this. Any advice?

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  • idaho
    idaho Member Posts: 1,187
    edited July 2009

    Hi Janet- sorry you have to join us here... My advice is to take someone with you to help you ask and think of questions to ask. Take notes.  It will all seem overwhelming- just take one step at a time.  You are at the hardest part- not knowing- once you get a plan it will seem a little easier because you are DOING something.  Peace and health to you,    Tami

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  • kayakgirl
    kayakgirl Member Posts: 172
    edited July 2009

    Hi Janet:

    I send you hugs. It will be a very stressful time. I felt like I got hit with a mack truck when I was diagnosed last June but I did and get through treatment and you will too. Just take one step at a time.

    I agree with Idaho- take someone with you. I would write questions down with spaces for answers and have the person you took with you write down the doctor's answers. Look at this site on Breast cancer.org under Home → Treatment & Side Effects → Planning Your Treatment  to get an idea of what questions you should ask.

    I would also do something for stress reduction. I used my local hospital's holistic services department for massages and someone to talk with - this really helped me emotionally but it also helps physically by decreasing the stress response which isn't good for healing.. Use a 3 ring binder and start keeping track of who you are seeing ,what for, any test done and their contact information. Also ask for copies of any of your test results and put them in the binder and take with you on all doctors appointments. You may end up seeing several different doctors. I saw a breast surgeon, a plastic surgeon, a radiation oncologist, and a medical oncologist plus some of my "normal doctors."

     I did ask for and took anti anxiety medication from my diagnoses through my chemo.

     Take care and hang in there.

    Agnes

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  • marlenet
    marlenet Member Posts: 345
    edited July 2009

    Janet

    I did a lot of research when i found out i had b.c. Knowledge is powerful.  I went on the Internet and researched on sites I knew  and trusted.  I agree with Tami, you are at the hardest part and believe it or not it does get easier.    This is a excellent site to gather information and talk to others.  Sending you good vibes and good health! Keep the faith and God will guide you.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited July 2009

    Hi, Janet ~  So sorry you're finding yourself here, but I hope we can give you some helpful advice and support.   In addition to what the other women have suggested, I wanted to ask if you're seeing a breast surgeon (vs. a general surgeon)?   A breast surgeon is a better option if at all possible.  And depending on what the surgeon you're seeing recommends and how well you like him/her, remember that a second opinion is often an excellent idea.  You will find as you travel this road that two or more doctors may not agree on the best course of treatment for you, and some choices will be yours to make.  So it can be very wise at times to get a second opinion, either to reconfirm the first, or to give you additional information and options.   

    Good luck tomorrow, and please let us know how it goes ~ Deanna

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  • Seabee
    Seabee Member Posts: 557
    edited July 2009

    As others have suggested, you need to learn as much as possible about breast cancer and choose your doctors carefully, starting with the surgeon. This site, which you have already found, is a good place to start learning the basics, and you can get more specific information here as you pass through each stage of treatment.

    If you don't have someone to go with you on your first visits with doctors, consider taking along a small digital recorder which you can refer to later if you are hazy on some points discussed in these meetings. I my case, my husband's impressions of the doctors were helpful in deciding whether I could work with them.

    I was lucky in that I was referred immeidately to a good, experienced breast surgeon. She then sent me to an oncologist, but the oncologist she recommended didn't impress me or my husband. It is important to find an oncologist you trust, because your dealings with him or her may last for years.

    Best of luck with your treatment. You are always welcome here if you need a sympathetic listener or advice based on experience.

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  • hlya
    hlya Member Posts: 484
    edited July 2009

    Janet,

    You remind me of what I exactly experienced in April, when I was confirmed as infiltrating carcinoma with lobula features but no more info.  We all went through the hard time as you,  and you will get  great support here!  You don't know how much support I got from the beautiful ladies here.  It's the best forum.   

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  • Gitane
    Gitane Member Posts: 1,885
    edited July 2009

    Nothing to add to the great suggestions so far.  Just want to say Hi.  Come back and talk, it really helped me.  Hugs. G 

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  • JannaC
    JannaC Member Posts: 30
    edited July 2009

    Janet, this forum is a great place to be.  I just discovered it and I was diagnosed in Feb, 09.  Wish I had known about it then.  Hang in there.  You have lots of people with you on this journey.

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  • dswope
    dswope Member Posts: 70
    edited July 2009

    Hi ladies,

    New to this thread.  I was lurking on the "starting chemo in july" thread, however it seems  most there have DX of IDC. 

    I'm wondering if any of you have done the CMF regime.  I just started 2 weeks ago.  Curious about how it affected other people.  My ONC says this is the easiest form of chemo, I find nothing easy about swallowing 4 pills of poison daily!  Yes, I know, a positive attitude is key.  I'm learning though the unknown and the waiting will not end, will it?  I've been told I should consider myself lucky I don't yet have the cancer any worse than I do.....I don't feel lucky at all.  I know there are others out there suffering much more than I, however it's all relative isn't it?

    Peaceful, comforting thoughts to you all.

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  • nono
    nono Member Posts: 8
    edited July 2009

    hi dswope

    I had cmf chemo but it was 15 yrs ago !! and I had it via drip. I hatewd it and as you say you can feel it poisoning your body. I had NO hair loss which was a bonus. I had a constant metal taste in my mouth and felt that eating relieved my nausea somewhat. With this form of chemo it is normal to gain 4-5 lbs !! I only took little amt of steroids toward the end of treatment. Good luck and at least you will have peace of mind to know that it is just killing any potential stray cancer that may be lurking around !! x

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  • dswope
    dswope Member Posts: 70
    edited July 2009

    nono,

    Thanks.  I'm trying to figure out what food workd well with the chemo......at this point dairy seems to keep my stomach from knotting up so badly.  Trial and error I suppose.  The weight gain part isn't an option for me!  I'm already 50 lbs overweight, and understand that may have something to do with developing this cancer (amoung all the other things!).  Again, thanks for the info.

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  • dswope
    dswope Member Posts: 70
    edited July 2009

    nono,

    I meant to ask, if I may, have you had any recurrence after the chemo?  Did they put you on an aromatase inhibitor after the chemo? 

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  • dswope
    dswope Member Posts: 70
    edited July 2009

    Janet,

    What did you find out?  Stay with us....so many women here to help you through this.

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