Diagnosed on Xmas-questions

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Gradyep
Gradyep Member Posts: 8
edited December 2020 in Just Diagnosed

Hi Everyone-

I’m 45 and was just diagnosed (Christmas Eve) with IDC. Everything has happened very quickly and because of the holiday, I haven't told most family or friends about what's going on. (Didn't want to ruin Christmas!)

Family history of BC: Mom(39) and maternal aunt (diagnosed 2x different cancers) Both survivors

Genetic counseling a few years ago and learned I have the Rad51C gene which makes me more susceptible to ovarian

Prophylactic hysterectomy(uterus and Fallopian tubes) November 2020. Will remove ovaries at a later date.

I've been getting Mammograms every year since I was 30. Last mammogram was in May and was negative.

Last week 12/17, I had my first MRI. Next day was called back that something was found and would need a biopsy.

MRI biopsy completed 12/23

Called on 12/24 saying I have IDC, 1.5 CM, Grade 1. Didn't see any lymph node involvement. Waiting on hormone receptors

Scheduled to meet with surgeon on 12/28

Questions:

-I am relieved that my grade is low but questioning everything and worried that it could possibly be wrong or changed. Pathology came back a little over 24 hours which seems fast.(pretty sure they expedited due to the holiday)Are pathology reports reliable? I am hanging on to anything positive right now. The size of my tumor, no lymph and grade seem encouraging but I I know little else at this point and don’t want to have false hope.

-How worried should I be that this wasn’t found on my last mammogram? Did the cancer grow that fast or was it just missed somehow?

-I'm a mom to 3 teenage girls. My husband and I didn't want to say anything over Christmas so we've been pretending everything is fine. I'm not sure if we should tell them now or wait until after we meet with the surgeon.

How/when did you tell your kids?

So scared and am just trying to process it all.

Thanks in advance!

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2020

    I would say that is about as positive as it gets for IDC. You are extremely lucky in a way to have had family history and routine scanning not only mammos but also for an MRI not even 6 months later. In that respect, the "system" really worked!

    The tumor didn't grow that fast, not with Grade 1, in six months. Instead it is likely how the mammo was administered, how the tumor was imaged/situated in the breast, or a combination of those factors.

    I wouldn't doubt the pathology, at least not for Grade. They won't know the final stage until they operate and there is a possibility that a lymph node could come up positive and change stage. Are you concerned that its really Grade 3 and faster developing?

    Finally, I don't have kids, but in knowing how the diagnostics process works, I would wait until you get more information after talking to the surgeons. That will give you a better understanding of what this will all entail and can share the information more appropriately. There is no reason to scare people thinking you will be in heavy chemo for 6 months (and the popular perceptions that you will be bald and on deaths door the whole time) when it could very well just be a lumpectomy and some radiation and you are on the other side in two months.

  • Rah2464
    Rah2464 Member Posts: 1,647
    edited December 2020

    Gradyep so sorry you received such news for Christmas. Or at anytime for that matter. The good news is that you have found the mass and begun the steps to manage the problem. Biopsy pathology gives you a piece of the puzzle, surgical pathology gives you the complete picture. It looks like so far, your tumor is small and grade one that is very encouraging. I am also glad that you are getting results so quickly, the waiting is difficult. As for not having been seen on the previous year's imaging, that isn't uncommon. I was imaged from the age of 30, and my mass hid probably for 4-5 years before we found it. Sneaky stuff and imaging just doesn't catch everything.

    I cannot give advise on how and when to tell your daughters what you are facing - I just wanted to acknowledge your post and offer you support and hugs. This is the hardest time when you are just beginning to get all the information about the issue and you don't have a treatment plan in place yet.

  • Moderators
    Moderators Member Posts: 25,912
    edited December 2020

    Hi Gradyep, and welcome to Breastcancer.org,

    We're so very sorry for the reasons that bring you hear, but we're really glad you've found us. As you can already see, our Community is full of amazing members always willing to lend advice, encouragement, information, and support -- we're all here for you!

    As the others have mentioned, it sounds like you're still waiting for the "full picture," which will come in time, with more doctor appointments and your surgery. We know it's hard to wait to get answers, but try to stay positive and hopeful!

    When you're ready to talk to your kids, this article from the main Breastcancer.org site's section on Talking to Your Family and Friends About Breast Cancer may be helpful: Talking to Older Children and Teens.

    We hope this helps and that you come back often, ask lots of questions, and keep us updated on your experience. We look forward to supporting you!

    --The Mods

  • Gradyep
    Gradyep Member Posts: 8
    edited December 2020

    Thank you so much for your responses. SondraF, I think I am most concerned (right now) that the grade could change. Since I don’t know hormone receptors, the grade 1 is the info that’s keeping me going.

    Rah2464-Thank you for your perspective on missing it on the mammogram. I have always been so confident that they would see any changes since I’ve been at it for so long.

    I’ll check out the article about talking to kids. Thanks for the link!

    In the last couple of days, I have been lurking here but your info and stories have kept me going. It’s definitely a lonely time when you’re first diagnosed!


  • LivinLife
    LivinLife Member Posts: 1,332
    edited December 2020

    Welcome Gradyep! I bet a high percentage of people lurk before posting so don't worry about that lol I think there are a number of folks who probably never actually join/post too.... This site is here for everyone who can benefit at whatever level.... I'm glad you found us! I don't have anything to add to what the others have said. I agree the biopsy report will likely hold as far as Grade 1. I also agree on waiting to tell your kids until you have additional information. News like this leads to questions. Not having answers leads to higher anxiety - that's a good part of what you're experiencing right now. Think about your teen girls asking basic questions you don't have answers for yet.... greater anxiety than cancer alone which would lead to enough anxiety. Once you have a plan in place you will be able to answer the basic questions. Questions will remain and then it's important your as honest as they can deal with - doesn't mean they need every detail of things either.... Please keep us updated as you proceed with appointments, all right?

  • Poppy_90
    Poppy_90 Member Posts: 105
    edited December 2020

    Grady, I am so sorry you’re here, but know that you will get a lot of support from the ladies in this board. It’s an amazing place. I don’t have kids, but bear with me on this. My dad and I are very close. We talk every day, he’s in his 70s and my mom died less than a year before my diagnosis. My BS is a wonderful woman and she helped me find the right time and way to tell him. And that was once we had a complete diagnosis and plan. It was easier for me, and it gave me some time to prepare myself to tell him and also allowed a lot of the focus to be on what my plan was. I know comparing a dad to your daughters is not the same thing. But, I wanted to share in hopes that it might help you. Yes, it was difficult acting normal while I was waiting, but I do not regret that decision for a moment.

    I am so sorry you are going through this. And having this news at the holidays must be even harder. Where you are right now and the waiting is a really tough place to be. Please keep us updated and I’m here if you ever need a friendly ear or support

  • Gradyep
    Gradyep Member Posts: 8
    edited December 2020

    Poppy_90-Thank you for your kind words and advice. My kids and I are extremely close. I’m a stay-at-home mom and my husband also works from home. We are always together(sometimes too much!:)) My girls have known my high-risk status their whole lives and knew I went in for my initial MRI. They also know that I’ve been thinking about a preventative mastectomy for a couple years. It’s just so hard to keep this from them! They are very aware and intuitive when it comes to me and I’m worried they’ll be hurt that I didn’t share this with them.

    I do think I will talk to some friends/family today and maybe that relieve some of this pressure I am feeling

  • moth
    moth Member Posts: 4,800
    edited December 2020

    gradyep, in 2017 with my 1st dx, my kids were in college but living with us. They never didn't know. They knew about my appts and call backs and biopsies and I told them as soon as i got the official dx.

    I told everyone else very early too. I've been on the other side and received very delayed info and I found it quite hurtful that they had pretended everything was fine for months before telling us anything.


  • Sunshine99
    Sunshine99 Member Posts: 1,680
    edited December 2020

    Grady, I'm sorry that you have found yourself here. I just wanted to chime in and say that you will probably start to feel better when you've told your daughters and then when you have a treatment plan. There's something about having a plan in place that helps this feel not quite so out-of-control.

    Come back and let us know how you're doing.

    (((hugs)))

    Carol

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    Just to add to what others have said, pathology reports are reliable, mammography is not.

    The reason mammograms are not usually recommended for younger women is because most young women (about 75%) have dense breasts, and mammograms don't always 'see' things that might be hiding in dense breast tissue. Usually ultrasounds are recommended instead of mammograms for younger women, although ultrasounds can miss things too - they aren't very good at 'seeing' calcifications, which often is a sign of DCIS or a very early stage invasive cancer. MRIs are best for those with dense breasts. You are lucky that you were sent for the MRI.

    Pathology reports are accurate, but for those who have needle biopsies, they only report on what was found in the small amount of tissue that was pullled up by the needle. So something different could be found in the final pathology. In some cases tumors are mixed grade, or might edge closely between grades making it more of a subjective call. So while your final diagnosis is most likely to remain grade 1, it is possible that your surgical pathology could find some grade 2 cells mixed in there. My tumor was assessed to be grade 2 but in reading the details, it just barely crept over the line from grade 1. I also had DCIS that was a mostly grade 3 but there was a bit of grade 2 mixed in.

    What's most important to the treatment plan is hormone receptors, particularly ER and HER2. Hopefully the surgeon has that information by the time you see him on the 28th.

    Can't offer much advice about when to tell your daughters except to say that you need to take their personalities into account. I don't think it's a one-size fits all answer on how to handle teens. My inclination would be to not tell them until you have a better idea about the diagnosis and possible treatment plan, but if they would be upset or angry knowing that you kept this from them for a period of time, and/or appreciative of being treated like adults and informed early, that could play into your decision.

  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited December 2020

    I am so sorry that you were dx’ed over the holiday season. Being just a patient myself and someone whose grade 1 tumor had already metastasized, which is not usual, I have tried very hard not to make predictions about myself or validate the predictions of others. Hope is a good thing but try (not easy) to wait till you have all possible info before you project into the future.

    My daughters were in their 20’s when I was dx’ed. We are close and have always been up front and honest with each other. They would have been upset had I not shared each step of the process with them. Since this is the dynamic we created knew I needed to honor it but every family has their own dynamic. However/whenever you choose to tell your daughters make sure that you continue to respect the relationships you have established with them. Not only will they appreciate honesty but it will give you the opportunity to set the tone for how your family deals with your dx. Wishing you the best.

  • Gradyep
    Gradyep Member Posts: 8
    edited December 2020

    Again, thank you all for your replies! All this info is truly calming my nerves

    Beesie-I had a core needle biopsy so does that mean they might have had more tissue to analyze and therefore pathology be more accurate?

    Also, they didn’t discover any lymph involvement but now my neck and arm are sore. I’m sure I’m manifesting the whole thing and my stress isn’t helping! My mind is my own worst enemy!

    How likely is it that they missed involved lymph nodes on my 2 MRI’s?


  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    A core needle (usually at least 3 samples, often many more) is the standard needle used for breast biopsies. It is accurate for diagnosis but it may not provide a complete picture. In some cases, with very small tumors, the entire suspicious area may be retrieved by the core needle, but that's not usually the case. By comparison, the entire suspicious area will be removed during surgery, along with a surgical margin. All of that will be analyzed in detail under a microscope. That is likely to be significantly more tissue than the sample of the suspicious tissue that was pulled up by the core needle.

    Your neck and arm are probably sore because of the biopsy or it could be a manifestation of the stress you are under. That happens a lot - it's pretty common to develop (or notice) all sorts of new aches and pains after we've been diagnosed.

    No screening modality is able to see the tiniest cancers. So while it's good news and a very positive sign that the 2 MRIs did not see anything concerning about your nodes, that does not mean that there might not be a very small cancer in the nodes. That said, with a small grade 1 cancer, the likelihood of nodal involvement is small.

  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited December 2020

    I basically told people immediately. I had scheduled several events at our house to help with the waiting for biopsy results. Those results came sooner than expected. Got them on Wednesday, saw PCP on Thursday(cancelled neighborhood ladies luncheon and resigned from genealogy society board), saw BS on Friday (cancelled church group brunch), was planning on surgery (I was one of those who said now that I know it is there I want it out) the following Thursday but when the scheduler called on Monday they had just had a cancellation for Tuesday (cancelled neighborhood annual Soup Night) so surgery was 6 days after receiving diagnosis. Couldn't very well leave the kids out of that loop! Also have had moth's experience of being left out of the loop and wasn't happy about it (father had surgery for bladder cancer and forbade anyone from calling me). Personally, I would prefer to know as opposed to being kept in the dark.

    With teens in the home, you may need to set some guidelines for acceptable behavior, i.e. sympathy is OK but don't overdo it, I'll let you know what help need when I need it, etc. Could be a great time for the teens to learn to cook and do laundry if they don't already know how.

    All that said, you truly need to do what works best for you.((((hugs))))

  • Gradyep
    Gradyep Member Posts: 8
    edited December 2020

    Thank you Beesie for your knowledge and information-the facts you provide are very helpful!

    Beaverntx-I am with you on wanting to have surgery ASAP. I already know that I will move forward with a bilateral mastectomy due to my high-risk and genetic component. I also know who I’d like to do my reconstruction. I’m hoping this will get me in for surgery sooner than later but who knows. I appreciate your kind words and taking the time to reply!

    Still in limbo about the kids. My husband and I are so exhausted and I think telling people(especially kids is really going to make this thing real.



  • prepmom
    prepmom Member Posts: 31
    edited December 2020

    Grady - I'm so sorry that you find yourself here, but know that you are among a wonderful, generous group who will offer you all of the support you'd like through this journey.

    My boys were 19 and 21 when I was diagnosed. I told them right away, telling them that I was doing so because I wanted them to feel confident that I would be 100% honest with them at all times. I told them that as far as I knew I was going to be ok, but if anything changed I would tell them. This way they knew not to worry too much, unless I told them otherwise. Both of them were returning to college shortly after they found out & I didn't want them worrying & wondering what was *really* going on at home.

    I, too, have been on the other side of this. My mother was diagnosed with BC twice. She felt like she was protecting my sister and I, only telling us on a need-to-know basis. This was 25+ years ago & still today when we ask my mom how she is doing, we never really believe that she's being truthful. My experience with her definitely influenced my behavior with my own kids.

    I don't think that there is a right or wrong way to let your children know. I hope my experience is helpful in some way.

    Hugs.

  • AB45
    AB45 Member Posts: 152
    edited December 2020

    Hello Gradyep

    Reading your post, has a lot of similarities to mine. I am also 45 and was diagnosed with IDC right after Thanksgiving. I also have teenagers and was anxious and fearful. I honestly would wait until you have all of the information before presenting it to your kids. It is most important that you remain calm and explain the positives of your cancer. It is grade 1 so it is very slow growing and it is a relatively small. The first few words is what your children will hear, start off that cancer is treatable. Alot of teenagers see movies of cancer patients and assume death sentence. It was also very helpful for me to have a support system there, in case the children cry, which is exactly what my daughter did. It is not easy telling your children but it is doable..

    Best wishes!!

  • encoremom
    encoremom Member Posts: 186
    edited December 2020

    Hi Gradyep.

    It's been 12 years since I was diagnosed but my journey was very similar although I was older at 52. Family history of BC and yearly mammograms since about 35 with alternate 6 month manual checks with doctor. Mine was found after doctor suggested a baseline MRI after a normal 6 month mammogram. Doctor saw how upset I was and his response was “This is exactly why we have been checking you over the years - so we could catch it early". Sounds like the same for you. I had 2 tumors found in one breast- Stage 1, Grade 2, largest was .8 cm with no node involvement. Had a 2nd opinion and was told it could have taken a couple years for mine to show up on mammogram, so thankful for MRI! I believe MRI was just able to detect smaller tumors. Was BRCA negative but I opted for BMX since I had family history. After BMX, I had my ovaries prophylactically removed and DIEP reconstruction in 2 separate surgeries. My kids were 16 and 12 at the time. I waited until I had more information from the surgeon regarding expected prognosis before I told them about cancer and BMX. I emphasized the positive - that most individuals in my cancer situation had surgery with a 95% chance of no cancer within 5 years. That seemed to make them feel better although I could tell my 16 year old was still very worried. I figured if things changed after surgery, I could talk more with them. I'm blessed to be here 12 years later.


    After all this rambling, I can only speak from my experience

    - Sounds like the MRI just picked up your tumor earlier than a mammogram would, not that it's fast growing.

    - I would trust that your pathology is pretty close for now. Mine was at this point in my journey but we all know how difficult it is to not go to the “what ifs"

    - My suggestion is to talk with the surgeon before telling your kids if you can. If his opinion is as optimistic as it sounds like it may be, that will help both you and your kids deal with it better.

    Sending positive thoughts, prayers and hugs your way.

  • Gradyep
    Gradyep Member Posts: 8
    edited December 2020

    Hi Everyone-

    A little update-

    We told our kids what was going on yesterday. My 16 yr old was acting a bit strange and I had a feeling she was sensing something was “off” with me. We were honest, factual and optimistic. We told them we have an appt with the surgeon on Monday 12/28 and we would have a greater picture at that point. They were sad, scared but ok.

    I’ve also have told immediate family and I feel as though a weight has been lifted. The support has been extremely helpful/comforting.

    Thanks to all for your stories, advice and kindness! I’m very grateful


  • MEM127
    MEM127 Member Posts: 27
    edited December 2020

    Glad the conversation with your kids went well. Hope your meeting with the surgeon is positive too, so you can get a plan and move forward

  • Rah2464
    Rah2464 Member Posts: 1,647
    edited December 2020

    Gradyep so glad to hear your conversation with your children went well, and that you are feeling relief from informing your loved ones. This diagnosis can be a lot to carry all by yourself. Wishing you the best for your appointment today.

  • tntnsd
    tntnsd Member Posts: 137
    edited December 2020

    Gradyep

    I am in your shoes right now. Just had my biopsy this morning, and it is extremely high chance it is not b9 (the radiologist gave it birads score of 5), and there total 4 masses with total about 3.6 cm. The only thing comforting is that the radiologist emphasizes more than once when looking at my ultrasound and mammogram is that auxiliary nodes seem clear, but I know that will wait to see.

    I have not officially diagnosed yet, but I knew the outcome would not be in my favor. Don’t know if they will give me the news before or after the new year.

    As of family, I have 3 girls in high school and college ages. My husband is the only one in family knew about this. We have decided to wait until we know for sure the result and plan forward; to protect them, and to have a clearer picture if they have questions. I know my husband is right, he has been a rock for me so far, but I am afraid he yet to prepare for the reality that might come. One of my closest friend already picked up something troubling me, but I stopped short to let her know since this is the holidays time. I am also hiding it from my siblings and parents because we aren’t gathering due to covid. I know they might feel hurt when it is time to tell them. But I just can’t do that now without a plan or something to ease the news.

    I am sharing your pain, on verge of crying to read your thread.

    I keep telling myself to be strong, not for myself, but for the people I love most. I want my girls to see her mom strong, but I don’t know if that is the right thing to do to them. I keep reminding myself that many, many people have been in this path before, I should not feel pity for myself given I am not struggling financially (by no mean, we are not rich, but we are stable with jobs).

    I see that I am blabbing now. Please forgive me if I intrude in your thread with my struggle, fee. I just want to hug you and have a hug back, sharing the pain and ease both our minds.

  • moth
    moth Member Posts: 4,800
    edited December 2020

    this a semi regular reminder of one of the mottoes here: you don't have to be strong or brave; you just have to show up

    Don't add to the burden you're already carrying by picking up some societal expectations about what you should do or feel or how you need to act. Just be yourself and show up. One day at a time

    You can do this

  • Beesy_The_Other_One
    Beesy_The_Other_One Member Posts: 274
    edited December 2020

    I want to second what moth said with everything in me: you don't have to be strong or brave. You just have to show up.

    You can do this, Gradyep and tnnsd! I know I speak for all of us saying we wish you hadn't had to join us, but you will find wisdom, friendship and comfort here. ❤️

  • Gradyep
    Gradyep Member Posts: 8
    edited December 2020

    Tnnsd- I am so sorry you have found yourself here. The first few days were by far the most difficult for me. The not knowing, the loneliness and the uncertainty of the future is excruciating.

    I am happy I told our girls when we did. I also told my immediate family the same day. This was when I was first diagnosed but before my hormone receptors were known. This was the right decision for us and I don’t regret it, however I understand the dilemma you are currently facing. For me, the weight of the news was crippling and I needed some support to get me through.

    Yesterday we learned the hormone receptors and have a better picture of what’s going on. The surgeon was positive and today I was able to have my pre-op and plastic surgery consult. I should have a surgery date by tomorrow. I feel much more in control than I did even 3 days ago. It isn’t perfect by any means but I feel better and not as lost.

    I am definitely not an expert but I’m here if you need someone to talk to. Take care

  • LivinLife
    LivinLife Member Posts: 1,332
    edited December 2020

    I agree with moth and Beesy on the being strong aspect of things... I've had family members and others terminal with various cancers... I could not stand hearing others talk about "how strong" they were b/c it put an unrealistic expectation on them about how they "could" or "should" be and left them very few people to go to where they could be vulnerable. I know people mean well though it's not a good thing.... I think when people tell people about bad medical news is a personal choice though I'm generally in favor of telling one or two really close trusted people and telling others once there is more info. or I think it can be overwhelming....

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