Joining the club and soooo scared

wolfie
wolfie Member Posts: 14
edited January 2018 in IDC (Invasive Ductal Carcinoma)

I have been hanging around this site since this all started back in September and finally decided to post as I really need some help dealing with this. I am 45 years old and had not had a mammogram before this...no family history of breast cancer so my doctor kept telling me it wasn't necessary until I turned 50 (yes, I am really kicking myself for not demanding it!). My Mom was diagnosed late last year at 66 with IDC, caught fairly early but aggresssive so ended up doing light chemo and 16 radiation treatments. She is all finished treatments and is doing good (YAY!!). My doctor decides that now I need to get a mammogram to have a baseline...I go in, get called back for more pics and US, radiologist find suspicious calcifications (BIRADS 4) in left breast and wants to 'err on the the side of caution" so off for a biopsy. This all started in September, biopsy in October and a couple of weeks later I am told I have DCIS, approximately 1.5cm. Surgery scheduled for November 28th and then 18 radiation treatments to start probably in January. Told that I have the best kind to get if you have to get something...I try to get my head wrapped around this and have spent many, many hours crying. I had the lumpectomy on Nov. 28th and it went really well, told I would get results on December 22nd (OMG..that is a long ways away!). Got called in on the 12th instead (oh no...that's not good!) and told they found 3mm of IDC in the DCIS so will need to have another surgery to check lymph nodes so did that on December 22nd. Pathology from surgery showed 2cm DCIS, grade 2-3, 3mm IDC, grade 2, clear margins of atleast 1.0cm (closer to 2.0cm all around), no lymph-vascular invasion identified, ER+/PR+, HER2-. I will get results from SNB on January 4th. I have 3 children ages 19, 18 and 11 and an amazing husband...I am so terrified of all of this and although I know that it still seems that it has been caught early, I can't seem to stop thinking the worst. I want to be around for my kids!!! I have been having mid/upper back pain on and off for a few months now and keep getting this throbbing pain in my back when I lay down and keep thinking it is cancer that has spread. I have asked my doctor about it but no one seems concerned, just that stress can do crazy things to our bodies. Also having tingling in my left arm but my massage therapist said that my left side is very knotted up so keep hoping that is all it is. I have also lost weight since this all started...just stress? I know I seem irrational but every time I go for results, it just keeps getting worse. I keep thinking that 3mm would not have spread all thru my body already...but then that dark side of my mind takes over. HELP! I am a mess...and I know that the I need to get in fight mode.

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Comments

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    Oh Wolfie, I am so sorry. You are not a mess; you are a normal person dealing with a very stressful situation. It was smart of you to post and I know you will find emotional strength here.

    The good news you already know but it's worth repeating: lumpectomy with clean margins, no sign of lymph node involvement, ER+ status which means you'll respond well to Tamoxifen or AI inhibitors. All of that means risk of spread is reduced.

    Tingling in your arm is from the lumpectomy and the SNB. It is very important to do the prescribed exercises for at least six months, so focus on that (and maybe yoga?) and it could help your back as well. Losing weight seems like stress, but don't hesitate to take advantage of the nutritional counseling, group therapy, or physical therapy your medical team can recommend. While you wait for the test results, and even after that, it's also important to keep doing the things you enjoyed before, whether that's manicures or attending your children's school events. Sounds like this was caught early so tell the "dark side" to shut up already!

    Sending hugs and good thoughts to you.

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2018

    Hi Wolfie, and welcome to Breastcancer.org,

    We hate that you have to be here, but we're really glad you found us. As you can already see, our Community is an amazing source of support, information, and advice. We're all here for you as you navigate your diagnosis and treatment. Stay connected here, come back often, ask lots of questions -- we're here to help.

    Big Hugs to you!!

    --The Mods

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  • wolfie
    wolfie Member Posts: 14
    edited January 2018

    Thank you Georgia! Today has just been a bad day and I seem to have spent most of it in tears do need to kick things back up and think positive! I am still waiting for the results of the SNB so don’t know if it has spread to the lymph nodes...positive thinking for Thursday. Looks like you are done treatment other than hormonal...glad to see you seem to be pretty upbeat about everything. I am looking forward to being at that point.

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  • SavedbyGrace1972
    SavedbyGrace1972 Member Posts: 105
    edited January 2018

    Wolfie

    What you are feeling means you are human. I'm sorry you're dealing with this but everything will work out ok. Be positive. At least you've started the process and now you're on the road to recovery. Hugs!!

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited January 2018

    big hugs all around. You have gone through alot of the process.once you have your oncotype score, you can make a treatment plan and start working to get all of this in the rearview mirror..... I know it sounds crazy, but next Christmas, this will all be a memory---- but for right now, it is totally normal to have these feelings and reactions. your stats seem great--similar to mine and I am almost 10 years out---- and in perfect health. There are never any guarantees, but trust in your docs an and in yourself..... this too shall pass....


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  • moth
    moth Member Posts: 4,800
    edited January 2018

    oh poor you! This has really dragged out for you! I can't imagine how you coped with all this uncertainty...

    That's good you'll get your pathology tomorrow. Once you have more info and a plan, I think the whole thing becomes more manageable. That's what I'm hoping anyway ;)

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  • xtraordinary
    xtraordinary Member Posts: 11
    edited January 2018

    I just finished my last treatment. Now I look back. Being "recently diagnosed" was the most emotionally difficult time of my whole cancer journey. I'm not that strong, but I went through it. So can you. keep reaching out to breast cancer sisterhood community. I got lots of emotional strength and support.

    Praying for you! xoxo

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  • Snickersmom
    Snickersmom Member Posts: 926
    edited January 2018

    First, take a deep breath. Then take another. And another. You are feeling exactly what we have all gone through and it's not easy. I had no history at all of anything - my mom died of natural causes at 104! - so I was absolutely numb when I was diagnosed last spring and consequently had to have a bilateral mastectomy. That was definitely not in my retirement plans!

    Everything you are feeling sure does sound pretty normal. Keep coming back to this website. The members are awesome and so very supportive. And you will feel better because we can all relate to how you feel and what you are going through.

    You will be around for your kids. Lean on your older ones, your husband, your family, and your friends. They are going to be there for you, so don't shut them out.

    Please keep talking on this site and let us know what's going on. Lots of hugs and prayers to you

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  • wolfie
    wolfie Member Posts: 14
    edited January 2018

    Thank you everyone! So awesome to hear from others that have been here and have come out the other end...and are ok! You Rock! I am off to get the lymph node results today...crossing everything for no node involvement.

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  • wolfie
    wolfie Member Posts: 14
    edited January 2018

    Thank you everyone! So awesome to hear from others that have been here and have come out the other end...and are ok! You Rock! I am off to get the lymph node results today...crossing everything for no node involvement.

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  • jrow7
    jrow7 Member Posts: 48
    edited January 2018

    Saying a prayer for you <3

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited January 2018

    Wolfie:

    Hoping for negative lymph node results for you.

    Everything you're feeling is so/so/so normal. We've all been there. I'm one year from diagnosis today (!) and can tell you: it gets better.

    I'm glad you reached out for support. The women and men on this site are the BEST! Rockstars each and every one.

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  • gigibee
    gigibee Member Posts: 192
    edited January 2018

    welcome wolfie! I hope you get negative node results today. I went thru everything you’ve mentioned , it’s normal. I notice I am having more moments where Cancer is not on my mind all the time and that seems like a good sign that I am making progress. Don’t overwhelm yourself, try to take each step as it comes. The point you are at now is the worst because you are constantly Waiting . Once you have a plan it will help

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  • Lucy55
    Lucy55 Member Posts: 3,044
    edited January 2018

    Wolfie..yes ..like everyone says everything you feel is VERY normal ..hoping you get great results today .

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  • Linda19152
    Linda19152 Member Posts: 36
    edited January 2018

    I'm in Northeast Philadelphia where are you I went to Penn Medicine 8th and Spruce and I feel like I'm in good hands but I'm still very upset very very upset because I don't know where it came from it wasn't there a year ago if you want to talk let me know I'll send you my number Linda

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  • Veeder14
    Veeder14 Member Posts: 880
    edited January 2018

    Hi Linda19152,

    Sorry to hear you have to be here. I'm sort of in the same situation. I had a breast MRI in Dec 2016 that was completely normal, then the one this December and I have cancer. I'd be glad to talk with you but don't want to advertise my phone number on here since it's available to anyone checking the website.

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  • Linda19152
    Linda19152 Member Posts: 36
    edited January 2018

    Hi Veeder thanks for your warm reply

    I have been panicing since hearing the biopsy results will see surgeon wednesday am apprehensive about surgery but know i will cooperate because im doing the best i can

    My goal is to have good health and low anxiety.

    I look forward to meeting the surgeon so that i can feel confident that i am in good hands. I always feel better after meeting the doctor. My anxiety comes from fear of the unknown.

    I'm happy i found this site. I initially told my friends but l recently noticed when i start my "oh my god" talk, they bolt. So as long as i can post here, i think that will help decrease my panic because the accounts I've read here are so similar to my situation that i do not feel so alone.

    Linda19152

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  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited January 2018

    Veeder:

    Send someone a private message with any personal contact info.

    Sorry for everyone new arriving. Heart aches for you. I'm just into post treatment (I guess you'd call it), diagnosed a year ago, and wow -- what a year. But I made it and YOU WILL MAKE IT. Take a breath when you need to and ask for anxiety meds. Many here have done that, even if only to sleep. You need sleep and calm somewhere in this.

    {hugs}

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  • wolfie
    wolfie Member Posts: 14
    edited January 2018

    Well, I received my SNB results yesterday and not exactly what I was hoping for but I am trying to stay positive about it as my surgeon says it is still very good news...she removed 2 nodes and one is clear and one has rare isolated tumor cells with no cluster of cells greater than ten cells or 0.1mm diameter. I am being told that I am still node negative and will be treated with radiation and tamoxifen. Anyone else have this diagnosis?


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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    Wolfie, that makes perfect sense. SummerAngel and a couple of others are actually talking about this now on another thread. If someone doesn't reply soon perhaps search ITC on this site and you'll find them. So do consider this pretty good news.

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  • Linda19152
    Linda19152 Member Posts: 36
    edited January 2018

    Hi Georgia

    saw my surgeon yesterday, i have to pick either a double lumpectomy or a mast and im bewildered

    because i wonder what the recovery is like for the mast compared to the lumpectomy (the affected

    areas are far apart)

    she said the mast would cover it all but the recovery is longer but compared to ?

    can you address about that?

    Thanks



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  • dtad
    dtad Member Posts: 2,323
    edited January 2018

    Hi there. Yes the recovery of a mastectomy is much longer than a lumpectomy. FYI there is a thread that discusses the differerences. Good luck and keep us posted...

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  • Katiejane777
    Katiejane777 Member Posts: 109
    edited January 2018

    Big big hugs! I was diagnosed late Oct and I have cried on and off throughout this whole mess. My daughter is an RT and she kept telling me "You'll be fine Mum" and reassuring me it would be ok. I still cried lots. Lol. It's just so much to take in. Don't beat yourself up for having a bad day/s. It's scary being diagnosed with cancer. You have lots of positives in your case. Try to focus on that if you can. X

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  • wolfie
    wolfie Member Posts: 14
    edited January 2018

    I met with my oncologist and am feeling much better...time to get on with this and kick it to the curb! I am going to be doing radiation (16 treatments plus 4 boosts) and then will try Tamoxifen. He said that will only give me about a 0.6% benefit so if I feel too many side effects, he would have no problem with me stopping it. He also told me that I am ‘pretty much cancer free’ and even if I did nothing more at this point, the likelihood of recurrence is 15%...too much for me which is why I am going ahead with radiation but I still feel pretty positive about that! After radiation, I will be around 3-4% recurrence so that is where I am heading. I feel that I need to step back from being online so much and reading about this every day as I seem to be very reactive to everything I am reading and it just keeps scaring me...I need to remain positive as this really was caught very early and I need to remember that most women are out living their lives and not sitting here worrying about every thing that ‘could possibly’ happen. Best wishes to all of you and may we all remain cancer free!

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  • CAM8
    CAM8 Member Posts: 38
    edited January 2018

    Hi everyone. I'm new to the site. Just diagnosed with Tubular Carcinoma. Breast MRI tomorrow and seeing surgeon the next day. I really appreciate all of the great info I have found from all of your posts!

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited January 2018

    Hi there Linda and sorry I didn't see your post right away. My two spots were close together so I don't have personal experience to share; mine were taken out in one "chunk." But even a double lumpectomy will have a shorter recovery time than masectomy. As Dtad shared, there are a couple of discussion boards where women are discussing that choice so maybe go check in on that part of the site.

    Wolfie, yeah! Do focus on the positive and I know you'll be well. When you feel like checking in again there is a very helpful "starting RADS in January" board where you can build your virtual support system. Go kick cancer's butt!

    CAMB, welcome. As your doctor probably told you, tubular is not a very aggressive cancer, so that's good. Here's some info. if you need it; I found it very interesting.

    http://www.breastcancer.org/symptoms/types/tubular

    Wishing all of you the best.

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