34 and just diagnosed

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KT2001
KT2001 Member Posts: 5
edited November 2017 in Just Diagnosed

Hi! This is my first post. I have been stalking this site for approximately 3 weeks while I waited for my mammogram and ultrasound. I received so much information and so many survivor stories that it helped ease my mind while I waited. I had my mammo and US two days ago and during that appointment the doctor told me he wanted to do a biopsy because he saw what looks like invasive lobular carcinoma. Oh and they lie when they say they don't hurt. Props to anyone who gets nipple piercings because when he biopsied near my nipple I about kneed him. I literally laughed and joked with the nurse during the whole appointment. My husband was in the waiting room and when we were done he said he could hear us the whole time. My poor husband, an appointment that shouldn't have taken longer than an hour ended up being three and even ran into the lunch time at the clinic they had even shut the waiting room down and locked the doors. The doc called my husband back and explained what he saw and that they would call us the next day with the biopsy results.

The call came while my husband and I napped in the living room (the day before took a toll on us because I also had some dental issues, of course) and I swear as soon as we fell asleep the doctor called. I still don't understand everything that he said but I handled it well, I knew it was cancer I don't know how I just did. He said I have low grade invasive lobular carcinoma he said it is localized and something about it being 5 out of 9 (I still don't understand that). I am scheduled for my MRI at the end of this month. Because I am so young I felt there must be something I am missing in my family history so I text the knower of all things on my dads side, my aunt. She told me that we have a history of breast cancer and ovarian cancer in our family and some members of our family carry the BRCA gene. I don't know if it is routine to be tested after diagnosis but I am going to have my doctor test me because I have a 13 year old son and a 10 year old daughter and I need to know for their future. Tonight my husband and I will be telling the kids what is going on. They've noticed the changes mommy randomly crying, mommy hiding in the laundry room on the phone, and the hushed conversations between my husband and I. They deserve to know. Since we are a military family my kids have been through many different things and they are tough but this is going to be hard. They may not even really understand it but one thing I am grateful for is they've only seen the survival side of cancer my dad had renal cell carcinoma and prostate cancer. He is a survivor and him and I will stand strong together when this is all said and done.

It's weird because I feel like I need to make sure everyone else is doing okay. It makes my husband mad because he says I need to worry about myself but I feel okay. I have my moments, usually when I am in the car driving by myself but then when I get back around people I am fine. I am a college student who will now possibly be putting her college classes on hold. I am more mad that this puts a damper on our four year plan. I was going to graduate from college in a year and a half and finally be the teacher I've always wanted to be. I know it will happen eventually but still we had the perfect timeline. We can't change this so we will work with this. I am ever the optimistic right now but ask me again in three hours and it might be a different story. Thank you for taking the time to read this and let me get the beginning of my story out there.

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2017

    Dear KT2001,

    Welcome to the community. We are so sorry to hear about your diagnosis and at the same time we are so glad that you reached out and shared the beginning of your story. We hope that you will stay active here and keep us posted as your story unfolds and you learn more. Here are some links to review as you wish that might help in these initial days. This information page on Invasive Lobular Cancer might help you to craft some of your questions for your doctor and here is some information on Talking to your Children and more on Talking to your Children. Please keep us posted here. We are sending you lots of hugs and warm wishes. The Mods

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  • JKL2017
    JKL2017 Member Posts: 437
    edited November 2017

    KT2001, I'm glad you found BCO even though I'm so sorry you need to be here. Last February I was diagnosed with ILC. I am, however, twice your age (that almost hurts to write!) & hate that you have to deal with this at such a young age.

    Telling your children will be hard but they will take their cues from you. If they see that you have a positive attitude & are committed to fighting, they will be reassured.

    The best thing to do now is to stop & take a deep breath. The MRI is a great 1st step. You'll have a better picture of what is going on in both breasts after the MRI. You can then talk to a surgeon about your options (of which there are many).

    With BRCA in your family, genetic testing/counselling is a good idea & you might want to pursue it before you choose a surgical option. Some BRCA carriers select double mastectomies to alleviate concerns about the increased possibility of finding cancer in your other breast. This is the kind of issue you will want to discuss with your surgeon.

    I don't know where you're located or whether you will seek treatment in a military hospital. My DH is a retired Navy officer & the military medical facilities in my area are terrific. I would have no hesitation recommending their use to anyone in your situation. That said, I had all my treatment in a civilian hospital & remain happy with that choice. Your decision will probably depend upon the doctor(s) you prefer, the specific treatment you select & where you can get that treatment. Your cancer does not appear aggressive so you have time to do your research before jumping into treatment.

    There is so much assistance to be found on this site. Past discussions may help you make choices & individual posters are always generous with their knowledge & their time. Use these resources now & in the future.

    Of course you're more worried about everyone else - that is what women do, especially women married to military men! We're strong, independent & great at taking care of everyone in our lives. It's understandable that your DH wants you to focus more on yourself; just explain to him that you will do that when it is the time for it. Right now, you are doing what you need to do - distracting yourself & carrying on as usual.

    In my experience, the military community is very supportive & caring. Reach out & accept help from that community as you need it. People will WANT to help & your life will be easier with that help. Know that this is a different path than the one you thought you would be taking but that you can still reach your goals by taking it. You WILL complete college & become a teacher (& probably a more patient & compassionate one). You will also learn more about yourself & others than you ever thought possible.

    I'm almost 9 months out from diagnosis & doing well. Soon you'll be saying the same. In the meantime, don't hesitate to PM me if I can help with anything. Best of luck & gentle hugs!

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  • WinterGal
    WinterGal Member Posts: 7
    edited November 2017

    hello

    I am new to this too I was diagnosed at 33 this past May with invasive ducal carcinoma in my left breast grade 2 I had a double mastectomy in June just finished 6 rounds of chemo. I'm about to start rads. I have 3 kids under 3 and its been really hard I was diagnosed when my twins were about 11 months. It's really scary thinking about the future with my kids being so small they don't understand much about what's going on. My husband and I try to keep each day as regular routine as possible but some days are tougher than others. There are so many stats out there and it's hard to know what to believe sometimes.

    I agree with you about the biopsy! So painful! Jarred my whole body!

    It's hard sometimes but nice to connect with other ladies on here, unfortunately we all have the big C in common but even just a post from someone else experiencing it helps get through it.

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  • KT2001
    KT2001 Member Posts: 5
    edited November 2017

    JKL2017

    It's nice, well as nice as it can be since this is a BC site, to see a fellow military spouse who understand the military health care system. I have been a military spouse for over 15 years and I still don't know how our healthcare works half the time. I haven't met with any surgeons yet and I am not sure where they will be sending me for treatment. I don't think our military healthcare system here deals with this sort of thing. Unfortunately my husband is up for orders which means we will have to move mid-treatment. We can't stay here because he isn't stationed where the kids and I are located, we stayed behind so that I could finish my degree. There are no jobs available to him here either. I can't do all of this by myself without him and we don't have family close enough to help either. I hate to have to move myself and the kids during a time like this but there just isn't any other option.

    Thank you for the encouragement. I have wanted to be a teacher since I was a little girl and our military lifestyle has made my college graduation nearly impossible. My hope is that when we get where we are going and things settle down and I am on the mend I can get my happy self back to college and get that degree. There are kids out there waiting for me to change their life one day at a time.


    WinterGal

    I can't imagine what you have been through. I am lucky enough that my kids will be able to understand, as best as kids can, what is going on. They are also old enough to entertain themselves if they need to and even help me out around the house and just sit and talk with me. I know it must have been and be hard trying to take care of three children under the age of 3 while going through this. Props to you and your husband for pushing through it all as a team.

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited November 2017

    Kt, I haven't been a military spouse in a Very long time, and it was only for 4 years, so I may sound stupid. Is there anyway possible to do the move Before your treatment starts? I know that the last thing we want is waiting!! But you may have to wait weeks for surgery anyway, and it will be much easier on you before surgery, plus it will keep you occupied while waiting. Maybe he can talk to is CO and try toget a "rush" on his orders for medical reasons or something? I know, nothing moves quickly in the military, it's all hurry up and wait, but just maybe?

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  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited November 2017

    Wintergirl- oh baby! Or three babies! You have your hands very full. I guess the blessing like you said is that they're too young to understand. My one year old's biggest concern after my mastectomy was mommy couldn't pick her up. My heart goes out to you!!

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  • Lisey
    Lisey Member Posts: 1,053
    edited November 2017

    5 out of 9 probably refers to 'grade'. There are 3 things in grading.. each with a score of 1-3. a 5 is a Grade 2.

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  • letsgogolf
    letsgogolf Member Posts: 263
    edited November 2017

    In reference to the grade, a 5 of 9 is a grade 1. 3 to 5 is grade 1, 6 to 7 is grade 2 and 8 to 9 is grade 3.

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  • KT2001
    KT2001 Member Posts: 5
    edited November 2017

    Cpeachymom

    You do not sound stupid. You are correct we can work on getting orders early so that we can get settled before all of the craziness begins. We are in the process of figuring all of that out. We just don't know how long it will take for them to execute the orders. Luckily when we get to the new duty station we will be considered a priority for housing so we should get a house on base right away. It's all just so much paperwork and we need paperwork from doctors and paperwork that even the doctors probably don't know exist. The military likes to make things, lets call it fun and exciting, when it comes to out of the norm situations. Hurry up and wait...always the motto for the military =)

    Lisey and letsgogolf

    Thanks for the info on the 5 of 9. I was a bit confused about that. I still don't have my full diagnosis. I guess that will come after my MRI.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited November 2017

    Just chiming in to say I ha a similar diagnosis; the phone call came while I was on vacation over the Labor Day weekend. Geez. It was grade 2 invasive lobular cancer. Took me awhile to find a good surgeon; who thank god wanted an MRI before scheduling surgery. Got a second opinion. Then had a lumpectomy and after three weeks of radiation treatment I will be done. So while I'm no expert, I can say you should hope for the best, ask for all of your records, and take your time to find an experienced breast surgeon you trust. And let us know how we can help.

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  • KT2001
    KT2001 Member Posts: 5
    edited November 2017

    Georgia1

    Thanks for telling me about your diagnosis. You give me hope that it could potentially be a short term set back rather than six months to a year or even longer. I know that once treatment is done it will always be in the back of my mind. I am ready to meet with a surgeon and find out what the potential treatment will be. Waiting is terrible but I am grateful that I found the BC now and not months from now or even a year from now.

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  • Icietla
    Icietla Member Posts: 1,265
    edited November 2017

    Welcome, new members. So sorry for why you all have had to join us.

    KT2001 -- my diagnosis is also Grade 1 ILC type.

    If your ILC is localized, I think you can figure on being done with the active part of your cancer treatment by or within the usual season for assignment transfers, between the school years.

    There may be some possibility anyway of your husband getting a (humanitarian/hardship/compassionate) job assignment in your present area. Are there any Reserve Installations (of whichever/any Branch) within some reasonable commute distance from where you are, to which he might get an Active Duty assignment? What about an assignment as a Recruiter -- being assigned to a Military Recruitment Office, and having responsibility for conducting interviews and other recruitment efforts at Colleges and Universities in your region? He might want to start asking if something might be arranged for him so you all could live there together for you dependents to have his assistance while your treatment proceeds where you are.


    None of what follows is meant to influence you. It is meant to inform you. We will support you in your treatment decisions.

    In the ILC forum section, you will find many discussion threads from which you can learn a great deal about ILC, including characteristics that you may want to take into account in your deciding on surgery. ILC has more tendency than IDC to bilateral occurrence. In addition, it has been known to be capable of evading detection by mammography, sometimes by ultrasound too, sometimes even by MRI too. Take the time to read through at least some of the longer discussion threads, such as these __

    https://community.breastcancer.org/forum/71/topics/747515?page=1

    https://community.breastcancer.org/forum/71/topics/835060?page=1

    https://community.breastcancer.org/forum/71/topics/800630?page=1

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    Sep 1, 2017 10:20AM - edited Sep 1, 2017 10:31AM by Icietla

    Another ILC-er here. By my calculations, the little-to-no-statistical-difference-in-outcomes so often used to argue against our mastectomy and CPM choices is roughly 93% weighted by IDC and DCIS cases. Somebody tell me if I am wrong about that, huh?

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    "Bilateral involvement is reported to be 20–29% in lobular carcinoma [10, 12, 16, 41, 42]. In our dataset the incidence of contralateral breast cancer in women with ILC was nearly double that in women with IDC."

    Source: https://breast-cancer-research.biomedcentral.com/articles/10.1186/bcr767

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    More to consider__

    https://community.breastcancer.org/forum/113/topics/820712?page=1

    https://community.breastcancer.org/forum/113/topics/805330?page=1

    https://community.breastcancer.org/forum/113/topics/844617?page=1

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  • KT2001
    KT2001 Member Posts: 5
    edited November 2017

    lcietla - Thank you for the links. Because of my husbands MOS he doesn't have the option for recruiting or anything off a Marine Corps installation. They lack people in his job so he has to stay in his MOS that is what he has been told but this situation may open us up for other options. He's got a lot of researching and phone calls to make to find out what we can do to either stay or get out of here ASAP. I hate to leave the office who is handling all of this for me they are amazing and I know there are other amazing offices out there but dang they are just so compassionate, understanding, and forthcoming with information. I guess it's just a waiting game until we find out more about my diagnosis, treatment, and the options the military has for us.

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