Do I have a real chance of dying?!?!?!?

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GreenEyes81
GreenEyes81 Member Posts: 389

I'm only 36. I have been convinced it's early so I wasn't concerned of actually dying. I will just get treatment, feel worse and go broke with medical bills- but I won't die.

Now I am wondering if I am just in denial?

I can't find statistics with my age/diagnoses. I don't even understand my diagnoses other than IDC and a bunch of other stuff I'm trying to learn.

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Comments

  • Racy
    Racy Member Posts: 2,651
    edited July 2017

    Hi there and welcome. Please share the 'other stuff' about your diagnosis to help us answer your question: ER; PR; HER2; size of tumour; lymph nodes affected.

    If you have been told the cancer is early stage, then most people will not die but some could. Everyone's cancer is unique. But there are many, many treatments for bc.

    This forum is a great place. Look for the information for newly diagnosed and interpreting your pathology report.

    And talk to your doctor. Ask anything you want to know, including explanation of the pathology report and prognosis.


  • Racy
    Racy Member Posts: 2,651
    edited July 2017

    Greeneyes, I just saw your other thread with your pathology info. I posted there.

    If the cancer is in fact DCIS, then I can confidently say it is very unlikely that you will die from it. It is good that it has been found so early.

    You may still want to have an MRI though, given the amount of suspicious areas in both breasts.

    Good luck and keep in touch.

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2017

    Racy, her biopsy found both IDC and DCIS. It's very common to find both together and when that happens, the diagnosis and treatment plan is based on the IDC.

    Greeneyes, at this point, after just a core needle biopsy and before you know your final diagnosis or have your your treatment plan, it is too early to be looking at any survival stats - simply because they are all over the map and you don't know where you fit. I can tell you that with invasive cancer, the survival rate won't be 100% - so yes, there is a chance of dying - but if you have a small invasive cancer with favourable characteristics, it's very possible that your odds of long-term survival will be very high. This is information that your Medical Oncologist will be able to discuss with you but at this point you don't have most of the information the MO needs to even begin to make that assessment.

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited July 2017

    Thank you, I guess maybe its all settling in. I was going to be all prepared with questions when they call Monday or at the least just a simple "when do I show up". Now I am so over whelmed I don't feel like I even have rational questions.

    My report says DCIS and IDC. They seem contradictory to me. I thought one stayed in place while the other would spread?

    This is the discription I found in another part of the report, added my questions as I went:

    Micropscopic sections....demonstrate invasive ductal carcinoma present in four of four bipsy tissue fragments. The largest contaguous focus of carcinoma measures 4 mm in size. (Is this small? medium? large?) ...3 points for tubule formation, 2 points nuclei, and 2 points for mitotic activity (grade 2 of 3). (What does this mean?) No lymphovascular or perineural invasion by invasive carcinma is seen.

    Immunostaining for p63 highlights absence of a myoepithelial cell layer surrounding solid and angular nests of invisive ductal carcinoma cells. (Guessing this is good?) A component of high-grade DCIS, cribriform histologic type, is seen in the biopsy. DCIS is characterized by expansile nests of neoplastic cells surrounded by an intact myoepithelial cell layer, highlighted by p63 immunostaining. DCIS shows central comedonecrsis and associated micro calcifications. (Durning the biopsy the doctor said these calcifications were not a big deal...seems like they are now?) Invasive ductal carcinoma shows variable (1-3+) nuclear staining in 100% of invasive ductal carcinoma cells. Immunostaining for progestorone receptor (PR) shows variable (1-3+) nuclear staining in >95% of invasive ductal carcinomas. (Does this mean I may not need chemo?) The Ki-67 proliferation index in the invasive carcinoma is elevated and estimated at 50%.


    Other than the questions I already have above, is there something more I should be asking when they call me tomorrow? Would by diagnoses be

    Dx July 2017 IDC ER+/PR+ only at this stage of the game?


    TIA

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited July 2017

    Thank Racy and Bessie. Bessie, that is what has been confusing me, both being listed. lol

    I am under the impression I will just be getting another "larger" biopsy to see how much it has spread then they would have a treatment plan. The more I read the more I am wondering if I need an MRI. If an MRI shows more stuff, would they end up just bipsying more spots?

    I still don't understand why my left boob is fine, its the whole reason I ended up with the mammogram. Has anyone gone in with issues for one side and came out with issues on the other side???





  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited July 2017

    Also, anyone know if due to my age (36) it will be normal for them to want a hystorectomy done? I have spent years trying to avoid one and someone told me other wise yesterday.

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2017

    Greeneyes, the following image, taken from the BC.org website, shows how DCIS evolves to become invasive cancer. So you can see why it is that most women diagnosed with IDC are also found to have some DCIS - it's because most cases of IDC started as DCIS. The cell progression doesn't always continue; it can stop at any point, which is why some women are diagnosed with ductal hyperplasia or atypical ductal hyperplasia, or with pure DCIS. But if you have IDC, the odds are high that the cell progression went through this process and there may also be some DCIS present.

    image

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited July 2017

    GOT IT~~ Also means might not be as "new" as I thought. If it has gone through this process, it's been there a while. TY

  • kcat2013
    kcat2013 Member Posts: 391
    edited July 2017

    Greeneyes, I was you several years ago :) You've gotten good info from others above, so I'll just speak to your question about age since I was 34. My oncologist told me that breast cancer in young women tends to be more aggressive, has a higher mortality rate and can often differ biologically from breast cancer in older women. (I've seen studies about this and find it interesting although a bit disconcerting) But she also went on to say that just because it tends to be those things doesn't mean it is true for every young woman with breast cancer. Each woman and breast cancer is different. So tools like Oncotype tests and Mammoprint tests are very useful in sifting through what treatment is necessary for an individual, add that with the experience of the oncologist and others. Oncotype testing (I believe) does provide some information based on age, I'm not sure about Mammoprint hopefully someone else will have that info.



  • voilalia
    voilalia Member Posts: 41
    edited July 2017

    Hello Greeneyes. I was just diagnosed on Friday with IDC. Feel like I'm in the same boat as you wondering what it all means. I've been able to understand a little bit from reading information on this site and going through the coaching guide, but clearly there's a lot more information I don't really "get" yet. Just reading words like "invasive" "carcinoma" and "metastatic" put enough fear in me, but ER+ and PR+ seem to be positive indicators of treatability. But still, when my doctor also told me that our state has a death with dignity law so that I would be able to be comfortable at the end.... it left me with a lot to contemplate. Guess I just need to wait for the cancer team to meet on Tuesday to make a recrommendation for my treatment and I hope I'll understand more. Hope you get your questions answered soon, too! Hang in there sister!!

  • Mucki1991
    Mucki1991 Member Posts: 294
    edited July 2017

    My jaw has dropped open at the death with dignity comment? Good grief if you were just diagnosed in Friday why on earth would that come up? I'm sorry someone said that to you. There is a lot of information to take in and yes it is very scary in the beginning but it gets better!! It can be a tough road some days but there are tons of ladies who are living happy lives many years after diagnosis.

    Wishing you both well

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited July 2017

    Oh wow voilalia, that must have been a tough meeting Friday. I still felt like I just was going to get treated like having the flu that got to bad. It hit me today when I was trying to find young women....story after story was about how amazing they were up till their death.

    KB870, thanks! I agree, when the treatment plan is there I can be much more specific in my research. :)

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited July 2017
  • gb2115
    gb2115 Member Posts: 1,894
    edited July 2017

    I don't think anyone has answered this, but no it's not standard to take your uterus for breast cancer. Unless you are having other problems that require a hysterectomy. I am 39 and was diagnosed at 38 and haven't even been sent to gyn other than instructions to followup with them as usual.

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited July 2017

    Thank you gb2115! I have spent years trying to keep my uterus! lol

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited July 2017

    Voilalia, I'm shocked that your doc mentioned "death with dignity"" at your very first appointment. Have they done any scans that indicate that the cancer has spread beyond the breast? Breast Cancer is very treatable. The overall 5 year survival,rate is 98%. I belong to a rowing club for BC survivors, and there are many women who have had to deal with BC twice, and they're still here. Some have been survivors for over 20 years. I also have friend a that have died from BC, so it is possible, but you shouldn't be discussing that right at the start

  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2017

    If my onc mentioned the death with dignity law when I'm not stage IV, I'd find a new onc.

  • ksusan
    ksusan Member Posts: 4,505
    edited July 2017

    I agree with Artista!

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2017

    voilalia, I'm sorry that you've been diagnosed and have had to join us here.

    You said that your cancer team will be meeting on Tuesday to make a recommendation about your treatment. Is that when you will be meeting with them? Have you had your surgery and other scans, or at this point have you only had a biopsy that found cancer? As I mentioned to GreenEyes, after only a biopsy, it's generally much too early to know the whole diagnosis, prognosis and treatment plan. But if you've had your surgery and possibly other scans, you (and your doctors) may be further down the road towards having more complete information.

    I hope you get all the information you need to understand the details of your staging and diagnosis (as much as is known at this point), as well as clarity about your treatment plan and what comes next. It's always confusing at the start, and it's always a steep learning curve as we enter this brand new world of breast cancer terminology and treatments. My best advice is to ask questions until you are satisfied that you know what's going on and what's happening next.

    Good luck with your appointment and please post again to let us know what you find out. Once you have a treatment plan, there are lots of forums here where women going through the same treatments, or women who've had these treatments in the past, will be able to offer advice and support.

  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2017

    greeneyes- yes I went in for microcalcifications in the left breast that showed up in screening mammogram. But MRI showed IDC & DCIS in right breast. Like you it was ER+/PR+. I opted for bilateral mastectomy with immediate natural tissue recon. (I'm high risk anyway and both breasts having something going on didn't give me reassurance even with a lumpectomy). Attempted tamoxifen but got hit with SEs that warranted discontinuation.

    On the topic of hysterectomy (and even mastectomy)- have you had genetic testing done? Mine came back with a mutation putting me at higher risk for ovarian cancer, so those bad boys have to go. As I've been having bleeding issues (irregular heavy painful periods) and I was on tamoxifen at one point they will go ahead and take the uterus too. May I ask why it's been recommended to have a hysterectomy prior to your diagnosis? I'm guessing you aren't finished having children and that's why you are against hysterectomy?

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited July 2017

    Hi Lula, sounds like we are in very simular boats. I am for sure done having kids! lol I just am scared of the side effects of a hysterectomy. I was having very heavy bleeding that was making me animic even with iron suppliements. I ended up with an ablasion 3 years ago and removal of one ovary that had a large cyst on it. It was easier to just have it removed while they were in there. I have not had any genetic testing as off yet.

    Since last night, I have learned I have an aunt and direct great aunt that had breast cancer. I have another aunt and direct aunt that had cervical cancer. The family joke is if you make it to 40 with no cancer you will live to be old. There is a lot of other cancer types as well. It would absolutly not surprise me if a genetic test showed high risk of overian cancer. I have been watching for it for years due to heavy bleeding, cysts and family history.

    Now that I have this diagnoses and at 36, my aunt just warned me it is common to have a hystorectomy as well. From my reading...I wouldn't see its common...but I can see I have a lot of reasons at this point to have one with the specifics of my cancer.

  • danix5
    danix5 Member Posts: 755
    edited July 2017

    I had total hysterectomy at 42, after BC dx, I chose that over taxmoxifan but the dr's were in favor of it too. That said it came back 9 years later. So I have checked every box and I am still here after two (fortunately early diagnoses)

    Best to you and bring a NOTE TAKER to appointments.

    Dani

  • illimae
    illimae Member Posts: 5,710
    edited July 2017

    Yikes to the death with dignity comment. I was dxd stage IV last year at 41 and I would have lost it with thatstatement. Fortunately my MO will not give me an expiration date and since I have a single bone met, they are treating me with curative intent. A positive approach makes a big difference.

    FYI, on the hysterectomy, while I know plans differ person to person, I happened to ask my MO if this might be in my future. She and probably other docs would try to keep the hormones suppressed in the least invasive way possible, many premenopausal women start with tamoxifen as I have.

  • Racy
    Racy Member Posts: 2,651
    edited July 2017

    Beesie, sorry, when I responded to Greeneyes I was relying on information she had quoted from her pathology report in another thread, which did not mention IDC. Had I known that, my response would have been different.

    I posted as soon as I saw Greeneyes' post as I wanted to acknowledge her obvious concern.

  • Artista928
    Artista928 Member Posts: 2,753
    edited July 2017

    The most important thing for all of you just starting is to have full confidence, trust and to feel comfortable with your MO. This is the key person that's going to create your treatment plan and follow your progress. What I wrote above is just me. That would put me off running unless in the convo the topic came up and that was appropriately addressed.

    I was and am still very lucky to have a great caring team. My schedule of follow ups without any issues is I see my surgeon twice a year for 5 years then annually for life (since I have bmx he is my mammo), plastic surgeon once I'm all done once a year for life, MO every 3 mo now to go to every 6 mo in a few years to annually for life. Another important person to have on your team is your pcp. I happen to have a pcp who has been bc NED since 2004 so she is on top of whatever tests my MO doesn't order in addition to my general health that pcps check for. I see her every 4 mo mainly for cholesterol, blood chemistry, and liver function test otherwise if she didn't know about bc I'd be an annual patient.

    I also don't know how I would have done it without a planner in which each day has a lot of space to write under. I wrote all my questions down and took it with my notebook to write down the answers. I also kept a journal to write down how I was feeling, side effects, etc so when my docs ask how I'm doing I had details. I knew I would forget things so this was my backup.

    This forum is a great source of support with people with great advice. It saved me. As already stated once you get a treatment plan in place, it'll be a load off of you.

    Hang in there. We're all here to try and help you just like the ones that took the time to help us when we were in your shoes.


  • lrwells50
    lrwells50 Member Posts: 254
    edited July 2017

    I concur about taking along a note taker, and in my case, it was someone that wasn't my husband. He hears anything medical and it's auto-delete

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited July 2017

    Wow, I can not believe how long this nice lady stayed on the phone and explained EVERYTHING and answered soooo many questions. 2 hours!! I have a consult/MRI later this week and surgery within 2 weeks of that. Just dawned on me....I will be going from a normal life to surgery in less than a month.



  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited July 2017

    Yes, we will all die someday, not at all necessarily from BC. My grandmother was diagnosed in the 1950s before any real treatments were available. Back then it was a death sentence. She had a mastectomy and was told to go home and plan things because she had about 6 months to live. She was young in her 30s and had three young kids. Well that stubborn Irish woman lived well into her 70s and died of something completely unrelated to cancer. The cancer never reappeared again. Don't let mortality get in the way of living. Treatment options have become excellent and the prognosis for BC is pretty darn good.

  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited July 2017

    thank you. Went in for an MRI Thursday with the plan to have surgery in the next week and half. They found two more spots. Now I am scheduled for two biopsies on Monday and have to wait for the results to decide on what type of surgery

  • Brightness456
    Brightness456 Member Posts: 340
    edited July 2017

    I'm a little late in saying hello,but wanted to let you know I'm here and I care. I have IDC too. It's scary. My biopsy info didn't add up, so I consulted other doctors. I'm having a lumpectomy in August and they're going to base my treatment plan around the biopsy from that, so I'm not completely sure what's going on with me either. It's stressful!

    I had a genetic test done because there was cancer of this and cancer of that on both sides of my family. In a week I got the result that I was negative in 23 different categories, which was a huge relief. If I'd had any of those things, removal of ovaries may have been indicated. The genetic test results were a huge comfort to me because it meant the women that I love weren't necessarily likely to have to go through this too some day.

    I'm sorry you're going through this, but I'm glad you found this community.

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