Still in Shock!!!

Options
karinada
karinada Member Posts: 13
edited July 2019 in Just Diagnosed

I was just diagnosed with ILC-Invasive Lobular Carcinoma, on May 20, 2019. I went for my yearly mammogram and no sooner was I back home and I got a call from my doctor saying they seen something suspicious and I should see a surgeon. I got an appointment for 2 days later and she examined me and couldn't feel any lump, but, said that the irregular shape of the area looked very suspicious. She set me up for an ultrasound and then for a the biopsy which confirmed my diagnosis. She gave me my options and took her time explaining them.

I made a decision to just do the lumpectomy and to get a biopsy of the lymph nodes. The surgery is on June 24. I've been back and forth with whether to get just the lumpectomy or a mastectomy. If I decided on the mastectomy, I'd get a double and reconstruction. Now I'm second guessing myself and thinking that I should've waited a while. The surgeon did say that it was no emergency and I had time, but, I just felt that I wanted it out and to see if the lymph nodes were affected. I wasn't yet prepared to go for the mastectomies. I felt I needed to do more research to see what happens as far as reconstruction and a plastic surgeon goes.

I'm 63 yrs old and I was never in love with my size D breasts! They're a lot to carry around on my 4'11" petite frame. It's painful at times!

I did have the gene work done and I don't carry the gene, so, good news there! I'm the first one in our family to get breast cancer or any cancer! Ten yrs ago I did have a biopsy for a lump on the right side. No cancer. It's the left side that has the cancer.

I sure don't want to live in fear of hearing that again! Has anyone here have a lumpectomy and then decided on the mastectomy? Another fear of mine is with health insurance. My husband is still working and we have good coverage right now. He plans on retiring next yr and I have no idea with where we'll be with insurance coverage!

I'm glad I found this forum! I do have family and friends, but I hate to be laying this on them all the time! They are all very supportive and concerned! I'd welcome your stories about coming to a decision, etc.


· Share on FacebookShare on Twitter

Comments

  • Krose53
    Krose53 Member Posts: 148
    edited June 2019

    Hi, sorry you our joining this club but glad you found this site. I was diagnosed Nov 17. I was diagnosed with ILC. I was planning on getting a lumpectomy until I had a breast MRI and a 9mm IDC was found in the other breast. Missed on both the mammogram and US. I then decided on a mastectomy. Immediately after my surgery, I was told my nodes looked good but 10 days later I found my pathology report stated I had 2 positive nodes and a small 3 and 5mm IDC in the same breast they had found the IDC. Those were missed on breast MRI. So I was happy I had the mastectomy. It went very well, not a lot of pain and a quick healing process. Have you hada breast MRI?

    · Share on FacebookShare on Twitter
  • teaka123
    teaka123 Member Posts: 95
    edited June 2019

    Karinada,

    There's a great deal to wrap your head around and it's all so new. I am sorry that you are having to deal with this at all.

    If you have a lumpectomy will you also have radiation and/or chemo?


    · Share on FacebookShare on Twitter
  • karinada
    karinada Member Posts: 13
    edited June 2019

    No, I haven't had a breast MRI. Nothing was said about that, I don't think. That is so scary with finding the other lumps that were missed. I've been reading about things being missed. This is why I maybe should've went right to the mastectomy. I, also, wished they would've done the ultrasound on the other breast at the time since that was biopsied 10 yrs ago. I'm so new at this and not up with all the terminology. I will catch on! Thank you for responding! So sorry you had to go through it!

    · Share on FacebookShare on Twitter
  • karinada
    karinada Member Posts: 13
    edited June 2019

    Yes, there is lots to learn! I've been doing nothing but reading and trying to let it sink in! Yes, the doctor said that I have to have 15 radiation treatments for 3 weeks.

    · Share on FacebookShare on Twitter
  • OnTarget
    OnTarget Member Posts: 447
    edited June 2019

    The breast MRI was really helpful for me too. I'd been diagnosed with mammary cancer in my left (which turned out to be ILC).

    The MRI found two Birads 4 masses. I immediately said I wanted the BMX.

    One of the tiny masses in the right ended up being ILC too.

    I'd highly suggest getting one!


    · Share on FacebookShare on Twitter
  • karinada
    karinada Member Posts: 13
    edited June 2019

    I was scheduled for the lumpectomy for tomorrow, June 24. The more I read, the more I knew that I had to go for the double mastectomy! I called the doctors office to cancel and I have an appointment to see her this Tuesday. Yes, I hate the idea of having major sx and post-op recovery, but, if it means peace of mind, then a few weeks of healing is worth it!


    I'm so glad I found this site! I don't feel so alone in this, even though I have a lot of family and friends support!

    · Share on FacebookShare on Twitter
  • Rrobin0200
    Rrobin0200 Member Posts: 433
    edited June 2019

    I went for the double mastectomy, and I don’t have any regrets. While recovery wasn’t a breeze, it surely wasn’t all that bad, either. The double was totally worth it for my peace of mind.

    · Share on FacebookShare on Twitter
  • Faith1111
    Faith1111 Member Posts: 46
    edited June 2019

    I found out on the same day as you. What a terrible day for us, huh? Or maybe good because we found it. Mine is 5mm and the mamo didn’t catch it, I did. That’s what scares me so much. I Ann scheduled for double M on the 26th with immediate implant reconstruction. I already have implants. Im 48, wish I could have gotten this later down the road.

    · Share on FacebookShare on Twitter
  • karinada
    karinada Member Posts: 13
    edited June 2019

    OMG! Your sx is in 2 days! I wish u luck and sending prayers! Please check back in with how you're doing! I go to the surgeons for a consult about the double Mas. tomorrow. I'm planning on doing the same thing as you, just not sure where or who will do it. Best of luck to you!

    · Share on FacebookShare on Twitter
  • Mavericksmom
    Mavericksmom Member Posts: 635
    edited June 2019

    You are lucky that BMX was offered to you as a choice! I was diagnosed in Dec 2018 and was refused a double mastectomy! Apparently the cancer hospital I went to has a policy of not removing a healthy breast! My mistake was not going elsewhere for a second opinion but I was in shock. I thought I had been cured after almost 16 years of being cancer free! The only exception to their policy isbeing BRCA positive which I am not.

    I think you are making a smart choice especially since ILC, which I also had, tends to occur in both breasts.

    Wishing you the best in your appointment, surgery and treatments!

    · Share on FacebookShare on Twitter
  • karinada
    karinada Member Posts: 13
    edited June 2019

    I went for another consult with the surgeon today after cancelling my lumpectomy on Monday. I really like her and she's very up-front and re-assuring. She said that she's here for me and will do whatever I feel comfortable doing. She told me that the chance for it to occur in the other breast was 15% and the chance for it to reoccur in the same breast is about 5%. The cons of doing a double is for one thing being under general anesthesia for at least 7 hrs. or more and if I'm doing reconstruction at the same time it could be more. There's more of a chance of infection and double the healing time. I didn't go into this appointment with the plan in scheduling the sx., only for more info.

    On Thursday, I'm going to an appointment that there will be a team of breast cancer specialist including: Oncologist, pathologist, genealogist, plastic surgeon and breast cancer surgeon. They focus on one case per weak and will give their opinions and will send the report to my doctors. The way I got into this is that my sister works as a Cancer Registrar at this hospital. BTW, she was also just dx with ductal cancer two days ago. It's pretty small right now, I believe 5mm. IDC. She had a 3D mammogram in Dec. and nothing was there!

    So, at this point, I'm up in the air. Hopefully, after Thursday, things will be more clear. I appreciate hearing everyones experiences that they've had or having. Every little bit helps!

    · Share on FacebookShare on Twitter
  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    Are those recurrence statistics given treatment such as radiation and hormone therapy?

    · Share on FacebookShare on Twitter
  • karinada
    karinada Member Posts: 13
    edited June 2019

    I believe so! She told me that survival is the same whether you have the lumpectomy with radiation or the mastectomy. It;s all in what you feel you need to do.

    · Share on FacebookShare on Twitter
  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2019

    It’s hard to believe the survival stats are the same for MX and lumpectomy but I was told the same thing. I had s lumpectomy and 33 radiation treatments and my sister had a MX - no radiation or chemo. I’m 8 years out in August. Her’s came back at the MX scar 4 years after her DX. She had radiation and gets 2 shots per month.

    You just never know I guess. I had IDC and she has ILC. My Oncotype score was 11. Her’s was intermediate. Our mother had BC in her late 60s so we were already high risk. Mine was found on a mammogram- she found the lump.

    I do think you shouldgo with what you think is your best option. Listen to your medical team but the ultimate decision is yours. Your body, your life.

    Good luck!

    Diane

    · Share on FacebookShare on Twitter
  • karinada
    karinada Member Posts: 13
    edited June 2019

    That is discouraging when you get a mastectomy and you still get cancer back in it. I had heard that could happen and thanks for posting that to put with my "cons" of mastectomies! Some could be under the false impression that you can get them off and no worries then and I'm sure your

    sister thought that was her best option with having ILC since it is sneaky. That proves how sneaky it is!

    My sister made us an appt to see a surgeon/oncologist for nest week, so, hopefully, I could make a decision and be at peace with it!



    · Share on FacebookShare on Twitter
  • edwards750
    edwards750 Member Posts: 3,761
    edited June 2019

    karinda - so many horrific parts to this insidious disease. No guarantees no matter which route you take. It’s frightening and discouraging. All the stats in the world don’t mean squat when you are one of the unlucky ones. I try to be positive but with my sister’s situation I find it hard to be optimistic. In fact since her’s came back she started having severe back pain that wasn’t relieved by any meds. I had this sinking feeling it had metastasized - and it has. She has to have 4 chemo treatments. She lives in another state so I don’t get to talk to her a lot except through texts and emails.

    To say she is devastated would be an understatement. We are too. She told my brothers and I this morning. I knew she had a recurrence but I only suspected metastasis. Wish I had been wrong.

    I’m storming the heavens with prayers.

    Diane

    · Share on FacebookShare on Twitter
  • karinada
    karinada Member Posts: 13
    edited June 2019

    I am so sorry that this evil disease has come back to your sister! I hope she is a fighter and wins this battle! Prayers for you and her and everyone else dealing with this horrible disease. I'm new here, but, I'm glad that I found another place for support and to help support others!

    · Share on FacebookShare on Twitter
  • karinada
    karinada Member Posts: 13
    edited July 2019

    I had a breast MRI last week and a consult with a breast surgeon. The MRI didn't show anything else up, thank God and the B.S. made a suggestion that they could do a breast reduction along with the lumpectomy. I'm a 34DD and I just about reach 5' in height on a good day. My weight is about 118. It would be such a relief to go down a few bra sizes. It would relieve some pain from my heavy breasts! Plus, the B.S. said that she could take more out during the lumpectomy. Less breast tissue could mean less chance of getting cancer back. I see the P.S. for my first consult and if satisfied, I'd like to get all this over with!

    Has anyone here had a reduction and a breast lift along with the lumpectomy. I believe it's called Oncoplastic Surgery.

    · Share on FacebookShare on Twitter

Categories