41 yr old diagnosed with ILC yesterday

MamaM
MamaM Member Posts: 80

I had a 3D mammo & in comparison to last years mammo.....there was a change in my breast tissue on the left side.  I had been having pains on that side & actually asked the tech to please get as much in the scans as she was able to.  I was then sent for a second closer mammo on the area & had an u/s & then a biopsy that showed I had ILC.  My mom had pre-cancer at the exact same age.  Eight surgeries later (it kept coming back) she had a double masectomy.  I plan to do the same.  I have to have an MRI yet to see if they find any other spots which is 10 more days away.  I can't sleep at night & I'm still taking this all in.  I have 3 children- a 19 year old son that just went to college, a 16 year old son & a 10 year old daughter.  I would really love to talk to anyone that is going through this too.  

Comments

  • Lojo
    Lojo Member Posts: 303
    edited October 2014

    Hi,

    Feel free to message me. Dx last fall at 41 with ILC...my mom also had premenopausal BC at age 45 (not sure what type). I had a double MX and radiation. My nodes were clear and I had a low Oncotype score (make sure to ask about this test after they biopsy your lymph nodes), so no chemo. I'm on tamoxifen for at least 5 yrs, maybe 10 though it will depend a little on the science and whether I hit menopause in that window. I have two kids. (8 and 11). It's overwhelming at first, but it does get easier once you have a treatment plan. I'm at 11 months post surgery and about 6 months post rads, and I feel fine -- really no issues other than a little stiffness in my shoulder. Consider getting at least the BRCA test given your family history -- it will potentially inform decisions about your ovaries. (I am negative for the BRCA mutation so the ovaries stayed). I'm not on this site often these days, but I'll check this weekend

    Loj

  • mary625
    mary625 Member Posts: 1,056
    edited October 2014

    Dear MamaDarrling--I'm an ILC survivor.  I think we would all say that this part of the process--the waiting on the MRI and the treatment plan--is the absolute worst.  You'll read it 100 times here, but if you need to, try to get on Ativan, Xanax or something similar.  We don't try to soldier through this stuff without some well-deserved help from medication.  I'd be happy to talk at any time via PM, but will be traveling back tomorrow from my reconstruction surgery.  All of next week I'll be sitting around recovering, so please don't hesitate any time.  

  • aquarian23
    aquarian23 Member Posts: 11
    edited October 2014

    I am also an ILC survivor.  The waiting for the results is always the worst!  I ended up with 6 biopsies because the MRI finds a lot of stuff.  3 of the 6 were cancer. I had a partial mastectomy.  My oncotype was low, so no chemo here, but I did have 7 nodes removed.  I just read about a new term - Post Mastectomy Pain Syndrome.  Yes, that is me.  NO lymphadema, but other stuff, that was described exactly as I have experienced it.  I was just diagnosed in February, surgery in April, rads in summer.  I feel good now.  I didn't think I would ever feel good again, but I do.  And you will too.  I am on Tamoxifen and it has been pretty easy too. Willl be happy to talk to you anytime!  Hang in there!!  I also agree with some meds for the anxiety.  It does help.  I have a 10 year old daughter too.  

  • Momine
    Momine Member Posts: 7,859
    edited October 2014

    Mama, I am sorry that you are finding yourself here with us. I completely ditto the previous posts about this being the worst, worst, worst part of the whole process. Take whatever help you can get - xanax, counseling (many hospitals have someone available), friends, groups, us :).

    I was DXed at 47, and I was pre-menopausal, my daughter had just left for college. Treatment was not fun, but so far, I have lived to tell the tale.

  • NY2TXbaby
    NY2TXbaby Member Posts: 171
    edited October 2014

    mamadarrling - so sory to hear you too have joined this special group of women. I too was just diagnosed a week ago Friday. That first weekend was the worst - felt all alone and so scared - but this site has helped to manage some of my anxiety. I guess knowing I am not alone helps me in some small way. I too had to wait over a week for MRI - which is tomorrow followed on Tuesday with first meeting with breast surgeon and oncologist. I think that is when it will begin to sink in that this diagnosis is real. Up till now I have told very few people and have pushed it out of my mind. Kind of like a Scarlett o'hara - I decided to worry about it tomorrow.  My. Mom too had BC around my same age and I wonder what type it was. Back then (and until it occurred to me) I did not realize there were so many different types.  I will be thinking of you and please feel free to PM me. I don't have any of the answers but do know how you are feeling. 

  • Mela3
    Mela3 Member Posts: 5
    edited October 2014

    Hi Mama and Baby-I'm so sorry that you have to take this road. It is not easy, but you WILL make it through. Tell your friends. They will help. I was amazed at how the wagons circled and friends and fellow "band moms" came out to the woodwork to make sure I had someone to talk to, prepare a meal, drive my kids, or even come with me and make me talk and laugh through chemo infusions. Don't be afraid to accept help. You can do it alone, but it is much easier when you are not alone. I was 47 with a 10yo and a high school junior. There is never a good age for a kid to hear that mom has cancer. I agree with the Xanax. At first I refused, thinking that I could handle this.  Then I went for a scan and they couldn't find a vein to start an IV. A little complication, but the emotional last straw. After that I took the Xanax so I could sleep when waiting for test results and accepted the ride and companionship in the waiting room when offered.  

    The most helpful things I used that first year were breathing exercises and meditation tapes. I made time to visit a local wellness center that offered free classes on relaxing breathing and aroma therapy. They also helped with how to talk to the kids. Think of lamaze class and refind your happy place. You need to keep calm so that you can just deal with this with a clear head. It's like giving birth to the new cancer-free you. I'm out here 4 years after diagnosis of a stage 3.  I learned a lot about ILC and the process. Learning is the best way to start. Get someone to take notes at Dr. visits or do it yourself and keep a journal. It's hard to hear and process what they are saying when you are nervous. It's easier to look back at it when you are calm and can look up things you didn't quite understand. I also agree with the genetic testing before you decide on a mastectomy and treatment. It helps with the decisions about how far you need to go to beat this. 

    You are not alone. Be strong. You can do this.

  • ganzgirl2010
    ganzgirl2010 Member Posts: 235
    edited October 2014

    Mama...I guess I have to chime in here..ILC over here too ! The time period between diagnoses and surgery is the absolute worst !! Pure torture. I know for me.. I cried everyday,still do sometimes...

    I was watching wrestling with the boyfriend last night (wwe) and Joan Lunden was on it to talk about her recent diagnoses...let the tears flow ! I was a blubbering idiot lol. I haven't been crying lately because I guess Im burying it, not allowing myself to be consumed by it..and that's exactly what it does, it consumes you, atleast me.

    Like the women above said...tell your doc how your feeling and they will put you on ativan or something similar to help with anxiety and sleep. Im still on it ! I will tell you this tho..it hit me and became SUR real when I actually got the surgery date..wow did it hit me that this was real and really happening. But..once surgery was over and I knew my fate it got alot easier, Im not crying everyday anymore because there's no more "what if's" or just not knowing. now, when I cry it's mostly because looking in the mirror is too difficult still. This is sooo much easier said than done (and your probably gona say go F*%ck yourself lady) but you have to try to stay busy, keep your chin up and try to stay positive as much as you can.

     

    I also have a 16 yer old son and my daughter is 12...we have alot of stuff in common lol.

    Good luck and feel free to inbox me when ever, even in the middle of the night xoxo

  • MamaM
    MamaM Member Posts: 80
    edited October 2014

    I am in tears after reading all of your notes back to me.  I don't feel so alone anymore.  I guess it's still just the shock of it all right now.  Sometimes I can march on like nothing is wrong & then all of a sudden something hits me & I just want to cry.  It still doesn't feel real!  Thank you thank you thank you for listening to me!  I appreciate and will re-read all of your comments to give myself a pep talk when I need one.  (Which is a lot today!!!)

  • MamaM
    MamaM Member Posts: 80
    edited October 2014

    @lojo is there a way to contact you besides private message?  It is telling me I can't send any more & I have only sent 2.

  • lisa137
    lisa137 Member Posts: 569
    edited October 2014

    A week from tomorrow it will have been 1 year since my double mastectomy. Since then I've had chemo, radiation, and a full hysterectomy. Oh, and a tooth pulled, lol. This is not a fun road to travel, but it's doable. Definitely get the anxiety meds, as they are a huge help. You can do this. :)

  • Lojo
    Lojo Member Posts: 303
    edited October 2014

    Hi, I just sent you a message, so hopefully it will let you reply. I don't know if there's a limit on the # of messages you can send.

  • MamaM
    MamaM Member Posts: 80
    edited October 2014

    @lojo, it won't let me send.  I will try tomorrow.  Thanks for trying though- appreciate it.  If there is another way I can contact you, please send me the info.  Would love to keep in touch.  

  • Lojo
    Lojo Member Posts: 303
    edited October 2014

    Hmm. Did you get the message I sent earlier this evening? Try clicking on my user name and see if you can send a message that way

  • MamaM
    MamaM Member Posts: 80
    edited October 2014

    ganzgirl2010, I still can't send private messages- so frustrating because I want to talk with you.  My fb is Shawn Manweiler Darr.  If you can friend me on there we can message on there until I can figure the problem out on here.  

  • april485
    april485 Member Posts: 3,257
    edited October 2014

    Someone should PM the mods and ask them if they can lift the limit for Mama so she can answer PM's and PM others. I thought they did not do the limit anymore but guess I was wrong. There is a limit when you are a new member and after so many posts, you will not be limited anymore I think? Not sure. Wishing you the best...

  • funnthesun68
    funnthesun68 Member Posts: 41
    edited October 2014

    Hi just wanted you to know that you are not alone.   I too was recently diagnosed with invasive lobular carcenoma.  I have under gone alot of testing and now I have my surgery this monday.   I am 45 yrs old and I too have two boys 18 yrs and 14 yrs.   My husband died 10 yrs ago to lung cancer so I am very nervous with me having this diagnosis.   Since I found my lump 4 wks ago, I have undergone, two biopsies, ultrasound guided and steriotactic, numerous Mammograms, genetic testing and breast MRI.   I was told that mine is early stage 1-2 with grade 2.  However, when I have the surgery the stage may change and I an unclear of whether or not I will have to do chemo or radiation.   I am scheduled to have a bilaterial masectomy with reconstruction immediately following.   To have both breasts removed is my choice, but I feel I am making the right decision.    I know how scared you are feeling and the worries that are going through your head.   Just know you are not alone.   I have found this website to be very imformative.   Sometimes the internet tells us too much, but in my case, the better prepared I am the better.   I am very scared of what is ahead especially not knowing if I will have to undergo chemo.   I pray that this has been caught early but I have found peace within myself and have a positive outlook compared to when I was first diagnosed.   I had so many emotions that I encountered.   Anger, denial, why me....you get my point, but all of this is normal.   We will fight this and get through, our next year will be dealing with our diagnosis, but we are STRONG and will get through.   Please feel free to contact me on her if you want to vent, cry, ask questions, I will do whatever I can to help you get through this.   I am having my surgery in PIttsburgh at McGee's womens hospital, because I feel Altoona isn't the best place for me to get treated.  

  • JFV
    JFV Member Posts: 795
    edited October 2014

    Hi,  I was diagnosed in 2010 with ILC stage 3a.   I was 48 with two kids in high school and I was hysterical with anxiety.  I used xanax during the most active treatment phases.   When I was calmer my body no longer tolerated it and I stopped taking it with no problem. Testing and waiting are horrible.  But, you will make it and you will be happy again.  Hang on and be good to yourself.

  • 2Tabbies
    2Tabbies Member Posts: 984
    edited October 2014

    MamaDarrling, you are not alone. I was diagnosed with ILC in July 2013. You're lucky it was actually found on a mammogram because according to my MO, mammograms often don't detect it. They didn't in my case, and it didn't even feel like a lump. The mammograms missed it. I missed it. My GYN missed it. I was more than a little ticked off. I had a bilateral mastectomy a year ago August. The right side was prophylactic because I've also had ovarian cancer and a form of lymphoma so was at a high risk for it to occur in that breast as well. My oncotype score was just high enough to warrant chemo so I had that and radiation which finished in January. Take heart. You can get through this. I am still here and back to my normal activities. I'm getting ready to start reconstruction next month.

    NY2TXbaby and Funnthesun, I'm thinking of you both too. Everybody take lots of deep breaths. The waiting on test results is awful. I remember how hard it was. Funnthesun, try not to worry too much about chemo. I had cytoxan and taxotere, and it wasn't nearly as bad as I feared. I had no nausea whatsoever which is what I feared most. I didn't feel good, but I didn't feel awful either. 

    Sending calming virtual hugs to you all.

  • funnthesun68
    funnthesun68 Member Posts: 41
    edited January 2015

    2tabbies I've had surgery and recovering from double masectomy, no chemo, just tamoxifen. i have not been on in a while but felt the need to let you know I appreciate your advice and virtual hug. I have recovered nicely, however the TE is not my favorite, but it is alot better than the drain tubes were. Hope you are feeling well!

  • beth1965
    beth1965 Member Posts: 455
    edited January 2015


    I started with quite a bit of cancer 9 cm tumor in breast and also  1 cm and 2 cm tumor in lymph nodes and 17 positive nodes and cancer in my arm tissues. I was dx in January 18th 2012. I had surgery(double mastectomy) chemo radiation and hormone drugs many different ones.   ****** but I am still here I go to zumba 3 times a week and the gym and eat well - healthy food most of the time. I am leading a normal life.  I was so scared in the beginning then I saw so many woman that are living sooo long on this site it gave me hope. I am a mom and wife and am missing nothing at the moment in my life. I was quite sick during treatment and my body did not co operate so I stayed sick for awhile but then I started to slowly get better and better and now I am back to normal. Hugs to you

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