Recently diagnosed with IDC having good and bad days !!

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Aysh1005
Aysh1005 Member Posts: 12
edited September 2016 in Just Diagnosed

I think I posted this on someone else's board I don't really know how this all works

hi everyone

I was diagnosed last Wednesday with invasive ductal cancer. My mother in law was diagnosed with the same thing 8 weeks ago which made me check myself.... I found a lump so went to gp who said it felt like a cyst (I had a mommogram 3 years ago which turned out to be cysts) went to breast clinic had mammogram and ultra sound from there had a biopsy they told me it was classed as 'probably benign' and the nurse told me I had nothing to worry about.... telephone call the following week to ask me to come in same afternoon where I was told my results.

Life has been a roller coaster of emotions since then more so for my family..... I've had a couple of meltdowns but trying to live on humour at the moment. There are so many unknowns at the moment which I'm finding is the hardest part to deal with.

I'll be having a lumpectomy on the 29th September, I'm so glad I have found this site as I have found so much information helpful already.

Love to you all

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  • nye1980
    nye1980 Member Posts: 69
    edited September 2016

    Hi, Aysh1005. We're sorry that you had to join us, but you will find so much support and information here. As all the ladies will tell you, this part is the hardest, before you know exactly what it is you're in for. As you get more information and a treatment plan is created, you'll find things more manageable. It's easy to expect the very worst when all you know is that you have cancer. There are a multitude of treatment options for the many varieties of breast cancer so try to keep that in mind as well as try not to think of the very worst (which we can't help doing, I know). Sending you love during this challenging time.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2016

    Dear Aysh, we're sorry for your diagnosis, but really glad you've found us and decided to post.

    Besides the wonderful support and advice you'll find here in the boards, we would recommend you also taking a look at the section from our main site called Breast Cancer 101 -- Breastcancer.org, that will help you understand pathology reports, treatment options, and manage all the stress that oftenly goes along with a breast cancer diagnosis.

    We're thinking of you. Let us know how you're doing!

    The Mods


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  • etnasgrl
    etnasgrl Member Posts: 650
    edited September 2016

    Welcome! So sorry that you had to join this "club", but glad that you found us. This is a terrific group of ladies and you'll find A LOT of support, advice, hope, and encouragement here.

    I know right now, it doesn't seem like anything will be or feel "normal" again.....but I assure you that over time, things will get better! Right now, it's scary, overwhelming, and all consuming. It will get better!
    I highly suggest that you buy the book, Dr. Susan Love's Breast Book. You can find it pretty much anywhere, I got mine from Amazon. It's an EXCELLENT book with accurate and reliable info on ALL things breast cancer. I think I learned more from that book (and this site) than I ever did from my doctors. In my opinion, it's invaluable!

    Hug

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  • joyandpiece
    joyandpiece Member Posts: 72
    edited September 2016

    Hi I'm so glad you found this site. I echo what the ladies above are saying. The waiting is hard, but you have found a good resource here. I was diagnosed with IDC at the end of August and will be having my lumpectomy soon. Having those ups and downs are pretty normal feelings from what I have read and from what I am experiencing! It has helped me to read all I can about my diagnosis and treatment options on trusted sites such as this one. I'll call it my small bit of control over this uncontrollable process. Hugs

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  • Aysh1005
    Aysh1005 Member Posts: 12
    edited September 2016

    thankyou ladies

    It really means a lot you answering my post.... I am starting to get my head round my diagnosis and so are the family it's just the anxiety of the unknown I think.

    I'm hoping it just goes down the road of radiotherapy and hormone therapy but I still feel I need to prepare for chemo just in case but not dwelling on it.... my nurse yesterday explained that because I'm pre menapause there is a higher chance chemo will be in my treatment plan which freaked me out a bit but I concentrated on the positive news that my bloods came back normal

    Thanks for the support x

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  • Thomas122735
    Thomas122735 Member Posts: 1
    edited September 2016

    Hi Hoping all goes well. I just joined today. I had Biopsy done a week ago and today found out I have Mucenous carcenoma it is in the milk duct. Waiting for surgeon to call me for appointment. In regards to the type of surgery etc. I hate this waiting game. My Mom had 2 lumpectomy s one in late 70's and another in mid 80's she lived till 104 yrs old. So I am hopeful. Just hate all this waiting around.

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  • Aysh1005
    Aysh1005 Member Posts: 12
    edited September 2016

    hi thomas122735

    Thankyou for the encouragement with what happened with your mum and hoping all goes well for you too.

    The waiting is awful I feel like lifes on hold which I'm sure you do to.... I've never dealt with cancer with any of my family then my mother in law got diagnosed about 6 weeks ago and now me, my poor husband is she'll shocked I think. The first 3 days I felt like I was in a bad nightmare but I'm coping much better now the initial shock has gone.

    I hope everything goes really well for you, you sound quite positive which is really good, I've found so much info out on this site it's really helped me get my head round the whole thing.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2016

    Hi Thomas122735-

    We want to welcome you to our community! We're sorry you find yourself here, but we hope you find the support and encouragement you need here. The waiting can be one of the hardest parts. We hope you hear from the surgeon soon, and look forward to seeing you on the boards!

    The Mods

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  • Al12
    Al12 Member Posts: 79
    edited September 2016

    Hi,

    I am too new here. Just joined this network and trying to figure out my way around.

    I am newly diagnosed with IDC. my tumor is about 1.1 x .7 x 1.5 I was called to come in for another mammogram to see that my right breast was ok and if my lymph nodes were ok. results were that my lymph nodes are clean. but was told that they may remove one node in surgery to make sure. I still have not met my surgeon yet and that wont be until next week. I have no clue what will be suggested for my treatment. This waiting around is torture cause I'm coming up with so many different scenarios. I also had already done the genetic testing as well and waiting for those results as well. I'm thinking that will sway my decision making.

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  • Aysh1005
    Aysh1005 Member Posts: 12
    edited September 2016

    hi Al12

    I know what you mean about thinking scenarios it's so awful with the time you have to wait I really feel for you.

    My husband works nights so I'm on my own with a 3 year old and when she's gone bed I have too much time to think.... I'm taking over the counter sleep aids at the minute just to get me through this first bit I'm hoping once I've had the op and treatment is in place I will be more at peace.

    Hoping good results for you hunni x

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  • Al12
    Al12 Member Posts: 79
    edited September 2016

    Thank you, Yes the waiting is torture. I have already known that I have cancer for about a month now, from the first look on the ultra sound technicians face when she told me I need to take this very seriously and make a biopsy appointment. I too have had sleepless nights. Now I'm sleeping better because I'm much closer to meeting my breast surgeon and also I am able to speak to my friends and family about it. talking about it makes it so much easier. My husband and I finally told our kids about it and that too made it so much better. they are 11 and 12. they took it very well. Now that we are open about it I don't have to hide doctor appointments. Do you find out what your treatment will be only after you do the lumpectomy?

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited September 2016

    Al12, you shouldn’t draw any conclusions from the fact that they will remove at least one lymph node during your surgery. I’d be very surprised and disappointed if they didn’t. Sentinel node biopsy is standard procedure with lumpectomy and increasingly with mastectomy as well. Imaging is unreliable for ruling out lymph node involvement—it can only rule it in.

    They inject a radioactive tracer and/or blue dye before surgery to see where the “sentinel nodes,” which are the first ones to which the breast drains and therefore the first ones to contain cancer cells. The nodes that “light up” are the sentinels, and they are removed & biopsied. (Sometimes there are one or two non-sentinels attached to the sentinels, and there’s no way to leave them in place, so they get removed too. I had 2 each sentinel and “hitchhiker” nodes removed and biopsied—all negative). If the sentinels (and hangers-on) test negative on biopsy, it’s a good bet your cancer hasn’t spread. In the old days before the development and near-universal adoption of SNB they used to remove some or even all nodes from the armpit (axillary node dissection)—and even if all tested negative the patient was at very high lifetime risk for lymphedema, and recovery from surgery was longer and more painful. They subsequently found that if the sentinel nodes were negative, there was no need to explore further.

    You cannot know your treatment plan until after surgery, because that will depend on the results of the surgical path report—and re-excision if they don’t get clean margins the first time. Until they know the final size, how many lymph nodes (if any) were involved, hormone-receptor & HER2 status, grade, and type (ductal, lobular, etc,) they cannot predict whether and which type of chemo and/or endocrine treatment may be necessary (and if they’re not sure, they will order an OncotypeDX test). And you need to heal from surgery before starting either chemo or radiation.

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  • Aysh1005
    Aysh1005 Member Posts: 12
    edited September 2016

    I was told at the ultra sound that mine was 'probably benign' and not to worry.... they did a biopsy and then I was told last Wednesday the results.

    My treatment will be determined after the lumpectomy but hoping just hormone therapy and radiothrrapy fingers crossed.

    I have 4 kids 24, 21, 19 and 3. My eldest girl has struggled with it but is better than she was last week..... I found that the hardest part telling them.

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  • Al12
    Al12 Member Posts: 79
    edited September 2016

    ChiSandy,

    Oh that's good to know. Now it all makes sense why I needed to see surgeon first and then they will get me an oncologist if I need one. I really thought I would know what stage I'm in what grade and if it was haromone related when I saw the breast surgeon. I guess there will be more waiting involved. I took a genetic test last week and hope to make my decision based on that regarding what type of surgery but I am not sure exactly if what is on the table of options for me regarding surgery. I should just stop googling and just wait for Tuesday to come. I was a perfect candidate for the genetic test so I would hope for a mastectomy with reconstructive surgery if I was positive.

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  • Al12
    Al12 Member Posts: 79
    edited September 2016

    Aysh1005,

    Good luck I hope it will be good news after your surgery. Yes my eldest too took it harder too but he is only 12 and the only reference he has to cancer is that our good friend who died of ovarian cancer a couple of years ago. now he sees me healthy and positive I think he feels better about it and also we have quite a few friends who have gone through this that he can see that they are doing fine now. Wow you have had a fast turn around from biopsy to scheduling a surgery. I found out my biopsy on sept 9th and I still don't see a doctor until sept 27th.

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  • Aysh1005
    Aysh1005 Member Posts: 12
    edited September 2016

    Hi Al12

    It's good too hear your kids are coping well with it bless them.

    Where are you from hun because I thought that yours was slower than mine when you said you had known for a month !!

    I went to gp then 2 weeks wait for app at breast clinic where I had mammogram, ultra sound and biopsy on same day..... got results last Wednesday a week later and I'm due for lumpectomy on 29th next Thursday.

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  • Al12
    Al12 Member Posts: 79
    edited September 2016

    Aysh1005,

    I am from NJ. I found a lump on my own and scheduled appointment with my primary doc.

    then made appointment for an ultrasound at my regular radiology place that I go to that was Aug 25th. then I was told I need to make a biopsy that appointment was sept 6th and my results sept 9th. My primary doctor pretty much told me I had to find an oncologist that I want to use. thats when I decided to go with hackansack but found out I have to go with breast surgeon first made that appointment and they only gave me sept 27th because all my lab work and paper work had to be mailed to them and then they had to review everything.

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  • Aysh1005
    Aysh1005 Member Posts: 12
    edited September 2016

    hi Al12

    I'm from uk and all our medical records are already at the hospitals we use as it's all part of the the National health service .... I'm not sure if you have free health care but we are really lucky to have it in this country and that's maybe why the whole process is quicker here It's all In One Place for the checks, tests and even the operation. Although the biopsy has to be sent off somewhere else but comes back to the same hospital I attend.

    I feel for you having to wait for so long inbetween appointments that proper sucks..... but hopefully you are sorted soon to put your mind at rest hun x

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited September 2016

    AI12, you can only get a guesstimate of “stage” before surgery because stage depends on both the final determined size of the tumor and degree of node involvement, if any. Type (e.g., invasive or in situ, ductal or lobular or a rarer type), grade, hormone-receptor status & HER2 status can all be preliminarily determined via diagnostic biopsy (my core-needle biopsy determined all of those). Your final surgical pathology will be a bit more elaborate—degree of hormone-receptor positivity, strength of HER2 expression, the factors that comprise grade (mitotic rate, tubule formation, degree of differentiation), whether there’s lymphovascular invasion (whether the tumor had its own blood and lymph vessels) and whether clean margins were obtained. But you can’t know the true size of the tumor or whether it spread to the lymph nodes until you’ve had your surgery.

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  • Al12
    Al12 Member Posts: 79
    edited September 2016

    thank you guys this really puts my mind at ease. so far I only know my biopsy results and it was IDC moderatly shaped and situ not present. I guess a lot of the questions will be answered once I see the surgeon only a few more days. I think once I'm seen by my surgeon things will be moving much quicker and I'll be able to update family and friends. My husband has all the questions written down and since we had all this time till we see doc. we were able to do some research and now we will be ready. But who knows it's not the same I bet once your in that office with a surgeon. We also need to see if we want to get a second opinion I bet that also takes time.

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