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New Here - Merry Christmas, oh and you have cancer

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concernedaboutresults
concernedaboutresults Member Posts: 86
edited January 2023 in Just Diagnosed

That heading is a joke, but not really as that is my lived experience right now. I found out this week that I have invasive ductal carcinoma (IDC) on Wednesday. Here are the specifics:

11/10/2022 - A screening mammogram found a developing focal asymmetry in my right breast when compared with previous imaging from 2/7/2020

12/2/2022 - Diagnostic mammogram and ultrasound confirmed a BIRADS 4C 6mm lesion

12/7/2022 - Core Needle Biopsy

12/14/2022 - preliminary pathology indicates IDC; waiting for the pathologist to sign off on the full report

I have an appointment on Monday, 12/19/2022, with a breast surgeon. Hopefully, the pathology report will be finalized by then.

I was also told that I would need a nuclear medicine test to guide the surgery (either a lumpectomy or a mastectomy) to target the removal of lymph nodes. I hope I have more information soon after the pathology report comes back. So probably a lot hinges on the extra information in my reports, like the hormones and HER2 findings for treatment considerations. I mostly need to figure out what kinds of questions I should be asking that I don't even know I should be asking at this point. I went to appointments with her for most of my mom's stage IV lung cancer (Dx in late 2019, passed in May of 2020). I was there at every appointment until her oncologist banned me during the worst parts of the COVID pandemic. I am familiar with how cancer diagnosis begins, mass identification, biopsy, staging surgery, waiting for pathology for tumor markers/genes that qualify for specialized biologic treatments, then treatments can begin. My mom's case was so advanced that she didn't qualify for surgical interventions, which made my mom quite angry. As my mass is quite small, I believe we start with surgically removing it. But maybe that will depend on the nuclear medicine test; I don't really know??? It took so much longer than one would have thought before treatment began. I don't know how similar or different breast cancer will be.

So if you all have recommendations for what questions to ask at this consultation with the breast surgeon. Also the radiologist told me something about how lumpectomies can be effective, but I need to have that conversation again. I think I was in a bit of shock when he was talking and didn't digest much of it.

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  • kaynotrealname
    kaynotrealname Member Posts: 410
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    Before you start planning I would wait to see your biopsy results. You need to know which breast cancer you have since they are all treated quite differently. It is pretty safe to say though that if they feel your tumor is only around 6 mm surgery will be the first option. But again that may depend on biopsy results. Regardless though, a lumpectomy will be fine. There is no difference between that or mastectomy. It's your choice and in fact sometimes the automatic radiation you get with a lumpectomy can be a bonus treatment. But there will be radiation no matter what with a lumpectomy so definitely know that.

    In saying that, I want to add that I am so sorry you are here. Not to meet you obviously but more because I hate breast cancer and wish none of us had to deal with it. But it is a common cancer, there is much money put towards it, and treatment as a result tends to be well established and successful. And there are many treatments for each stage of breast cancer and that is a huge benefit. Once you have your biopsy results you'll have more of an idea of what you're facing and we can pass on more information. But in the meantime know there is a wealth of information to be found on this site and we have your back.

  • threetree
    threetree Member Posts: 1,422
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    I really feel for you, and am very sorry that you have to deal with this. Mine was officially diagnosed just before Thanksgiving 2018. I had a large IDC tumor (5.5-6 cm), so they wanted to start neoadjuvant chemo right away that December. I actually declined and told them I didn't want to do anything until after Christmas, so I started all the "active treatment" in January. Finished the chemo around June, had surgery in July, and radiation in fall of 2019. I'm still here 4 years later and knock on wood there will be many more years still ahead.

    They say that breast cancer "is not an emergency" so some reasonably short delays really don't seem to matter, and I don't know that it did in my case. My point is to not get too worried about the time of year that this is, and take time to enjoy the holidays as much as you can. There's no question that the cloud will be there, but you will get through it, and with what you know now, things don't actually look too bad. As kaynotrealname said above, though, you need to ultimately wait for the pathology report.

    Again, I am real sorry to hear that you got this news, but glad you found our site. It used to be much, much better, and they screwed it all up, but they are saying it will get better again sometime next year (who knows?), so you might want to hang in here with those of us who are left from the old good site, and hopefully you can get some help and moral support as you maneuver through this.

  • concernedaboutresults
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    Well I now have a copy of the preliminary report, and this is what it says:

    - Invasive carcinoma of no specific type (ductal).

    histological grade (Nottingham histological score):

    glandular/tubular differentiation: 2

    nuclear pleomorphism: 2

    mitotic rate: 1

    Overall grade: 1

    - Invasive carcinoma measures 6 mm in greatest linear dimension in this specimen

    - Ductal carcinoma in situ, solid and cribriform types, with intermediate grade

    - Microcalcifications identified with associated invasive carcinoma

    Pending ER, PR, HER2/NU

  • moderators
    moderators Posts: 8,177
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    Hi Concerned,

    We wanted to chime in to extend a big hug to you for this news. We're so very sorry for the reasons that bring you here, but we're so glad you've found us.

    While you wait for your surgery and more pathology results, you may want to check out the main Breastcancer.org site's page on Understanding Your Pathology Report, which explains what each piece of the report means.

    We know others will be by shortly to help guide you as you navigate your next steps. Please let us know if you need anything at all, and keep us posted with what you find out as your treatment plan becomes clearer.

    Hugs,

    --The Mods

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    Grade 1 is excellent news. It's not aggressive. If they confirm it's not in your lymph nodes (and it's most likely not with IDC and your grade) no chemo for you and probably no chemo no matter what. Grade 1's tend not to respond so it wouldn't be beneficial. Chances are it's going to be ER/PR positive with a grade 1 and HER+ negative. Endocrine therapy will probably work out just fine. Anyway all good news in the breast cancer world right now so just hang tight for your hormone results and you can go from there.

    Also, just realize that with a grade 1 they might move slowly, too. Those cancers move at a glacier pace so no need to make quick decisions unless you just want to for comfort's sake.

  • alicebastable
    alicebastable Member Posts: 1,945
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    concernedaboutresults, ditto to everything kaynotrealname said. And please remember, this is not the cancer your mother had; yours is a different type, caught very early since it's so tiny and low grade, and has an excellent prognosis.

  • jonesd01
    jonesd01 Member Posts: 13
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    I am right there with you - just met with surgeon Wednesday and trying to get surgery scheduled and another MRI on the other breast. Plastic surgeon appt Monday. I am ok one minute and panic attack the next. Tumor is 8mm ER+ PR+ and HR neg. Everything I google on microcalcifcations indicates pre-cancer but mine is not and they are widespread - so going is mastectomy not lumpectomy. Sending prayers and good vibes your way with positive results on any remaining tests.

  • denny10
    denny10 Member Posts: 421
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    Jonesd01, please can I beg you not to go to Dr Google. It can lead you down some very negative paths. Listen to your medical team and if there is something you do not understand or want some advice, ask on this site. We are not doctors, but we may have been through similar diagnoses and be able to share our experiences and knowledge. I hope you get a treatment plan in place soon. Healing wishes to you.

  • 7of9
    7of9 Member Posts: 474
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    Merry Christmas pass on the candy canes and treat bars go for the little blue pills and the little white ones ambien and attivan. While you fact gather all the information you can - I did not and I skipped radiation which was dumb dumb dumb dumb because I had to deal with it again 3 years later. I got the call xmas eve while looking for croutons that it was back. Whatever. You got this and we got you. Lock down or skip the big parties. You don't need a cold or the flu slowing you down. Vacation plan for next year ( and year after). Great focus.

  • starsnow77
    starsnow77 Member Posts: 55
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    Excellent point. I am a few steps into the journey and saw my pathology report before I had Dr appt. Follow My health is awesome, isn't it? I was able to sort through some stuff band get questions for the real Dr but Dr Google is confusing and scary and depressing!

    Jonesd1...I am sorry you find yourself here but welcome. It is a scary world and the waiting is the worst part. Although the approach is "no urgency", if you are like me you want it over and done with yesterday. I have had two surgeries, and am waiting for radiation appointment. I had a mild freak out when that appt was scheduled for 2 weeks from now. But I guess this is common.

    Grade 1 is encouraging. But no matter what the type, grade, size, etc etc it still is Cancer.

    sending you Best Wishes and Thoughts of Comfort and Care

  • concernedaboutresults
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    Hi Jones. It looks like we are getting our diagnoses at about the same time. I am sorry you are in this same boat with me and around the holidays to boot. I am seeing a surgeon on Monday. Are you having your mastectomy done by a different surgeon than the one you saw on Wednesday?

    Stars - I am curious about why you needed two surgeries before radiation.


    Everyone -I am meeting with the surgeon tomorrow morning and then with the cancer clinic later in the day. I'm unsure what we will do in these appointments, given we don't have the ER, PR, HER results. I am just looking to determine the next steps and what guides the decision to have a lumpectomy vs. mastectomy. The radiologist said something about a nuclear medicine test and I am now thinking that perhaps they mean this sentinel node biopsy. Maybe it's something in addition to that. I am curious because I am quite sure I am overthinking it, but what if some of these other areas of dense tissue have cancer in them too? My radiologist told me that if this tumor had been in that area, he pointed to it on the image, he wouldn't have been able to see it. That makes me wonder what else might be lurking around in that area. Is this an odd concern for me to have? And, how will they know without some other kinds of test?

  • lily0420
    lily0420 Member Posts: 4
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    Hi concerned, I was diagnosed with ductal carcinoma in situ (DCIS) in left breast on 10/8/22 and plan was to do lumpectomy and oncoplastic procedure on 11/16, which went well, followed by a course of radiation. However the surgical pathology report showed that I had a 12 mm tumor of invasive ductal carcinoma (IDC) and its a “triple negative tumor. The good news was clear margins and my 2 sentinel nodes were negative. So now, instead of just getting a course of radiation I need to have chemo first and then radiation. (My oncologist told me that if they had found the IDC on biopsy they would have started with chemotherapy before surgery and it would have likely been a stronger more toxic regimen than what I will get now because at that point they wouldn't have known my lymph node status). I really just want to get this done and behind me. I just sent an email to work letting them know about my diagnosis and upcoming treatments (I intend to continue working through this) and it felt weird to wish them happy holidays after dropping this downer bomb on them! It's funny how I find myself worrying about bringing other people down when I'm the one with cancer! Anyway I wish you well as you go through this.

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    I would like to tell you that it never happens but that would be a lie. Dense breasts are hard to see through and imaging can miss things. I will say though that it's uncommon because they do a multitude of scans with a lumpectomy and use the information from all of them to judge the surrounding health of the breast. And honestly that's why you do radiation anyway - to catch any other cancerous cells surgery might have missed. And statistically this is very effective. For younger women there might be a tiny bit of advantage in getting a mastectomy but not enough where you should feel pressure to do so if you don't want one. Some studies show that a lumpectomy with radiation actually has better results for long term health. And again you have a grade 1 tumor so taking a conservative approach is probably going to be recommended.

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    And I'm so sorry, Lily. We all know the stress the early days of breast cancer bring and getting unexpected surgery results sucks loads. But despite the hidden highjacker, your other results were indeed very positive and it was removed quite early. So everything you have to do now is just a precaution to make sure it's gone for good. I went through chemo. It was four sessions and it was hard but doable. They have really good medication now to help with side effects.

  • concernedaboutresults
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    Hi Lily, and thank you for sharing your story. My takeaway from your story is that treatment plans can evolve and change, even after surgery happen, due to the new pathology or other findings. I am a planner by nature and by professional training. I thought my treatment team would lay out a plan, and we would march to it. However, whatever plans get made will be subject to change as new information comes in. On work topic, I recently moved and have been looking for a job. They called for an interview on the day of my biopsy and made the offer the day before I received the news about the results. I don't know what to do or say as the start date approaches. Fortunately, it's a little bit out from now into early next year and I will get more information about what to expect in my appointments today. At this point I don't know how long the recovery will be for either surgical procedures and I don't know the side effects of any treatments I recieve.

    I guess where I am marching is into the unknown at this point.

  • lily0420
    lily0420 Member Posts: 4
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    Hi Concerned, I know what you mean about the uncertainty and planning. I’m a planner too and this has upended everything. However I think the pandemic gave me good practice with changing plans! Regarding work, I was told by surgical team that I would need to take off 4 weeks from work following my lumpectomy/breast lift and my jaw dropped. I work from home basically sitting at a computer talking and typing. They said then maybe I could return to work in 2 weeks and that’s how much time I took off. One week post-surgery I felt well enough to work (I made Thanksgiving dinner for 15 family members on post-op day 8 and felt good, just had to deal with that annoying drain). I’m going to have Taxotere/Cytoxan chemo which will be an IV infusion once every 3 weeks, 4 times. The oncologist told me that many people work during this. Some work that morning and get the chemo in the afternoon. She said that feeling sick from it is generally the 3 days after, so I’m going to take those days off in advance, now that I know my schedule. But I won’t really know how I feel until it happens. Plus there could be complications or adverse events that change this plan too! So I’m keeping that in mind and trying not to get too stressed about it. Regarding taking a new job it could work out fine assuming your health insurance is intact and you are able to take time off for treatment when you need to

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    Just to let you know Lily I did Taxotere/Cytoxan, also. The first session I did really well and thought this is great! The second wasn't bad either but side effects started creeping in as far as muscle pains. The third and fourth.....ugh. Not sick perse but just fatigued and really achy. I worked through it all and kept up with home responsibilities but I moved a lot slower. Everyone is different of course but that seems to be the typical reaction. Four weeks after the last chemo cycle I started having fatigue lift and by seven weeks after I felt normal. I cold capped throughout and although I lost 75% of my hair first cycle, it started growing back before my last cycle and seven weeks out it looked like I had a purposeful pixie haircut. Eyebrows went but started growing back almost immediately. Eyelashes lasted through chemo but went four weeks after when new growth started. They're stubby right now but coming in thick. I've been using latisse. Anyway, good luck! Chemo sucks and there's no way around it but it truly is doable for most of us thanks to great drugs for side effects.

  • concernedaboutresults
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    I just finished meeting the breast surgeon and the oncologist today and so much information to digest. I am scheduled for surgery on Thursday and will have a lumpectomy. I have pre-op labs and sentinel mapping tomorrow. After I will have radiation + hormone or HER2 oral treatment or chemo depending on my ER, PR, HER2 status. The oncologist insisted that I should have those results by Thursday. I really don't want to do chemo if I can avoid it, but I will do what my doctors advise. Can anyone tell me if the sentinel mapping procedure hurts? They said they would inject it into the nipple and that the needles are quite small. My husband said her heard that it would be numbed up, but I did not hear that.

  • meow13
    meow13 Member Posts: 1,363
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    Sorry you find yourself in our "club", I had IDC and ILC in left breast, 1cm each er+ pr- her2-. I am 11 years out no recurrence. Just found an indeterminate small mass in gallbladder so I am having in removed just in case.

    Catching cancer ASAP is the key to managing this thing.

    Good luck to you.

  • olympicmtgirl
    olympicmtgirl Member Posts: 29
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    I had a DMX 3/2022 and they mapped my lymph nodes in the hours before the surgery. They numbed the area and it was nothing. But, full disclosure, I had taken an anti-anxiety pill before entering the building and was so happy to be moving forward with treatment that I may not be giving the most aware feedback!

    I am so glad you are getting prompt testing and appointments. It is an anxious journey.

  • concernedaboutresults
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    I had the sentinel node mapping done this morning. It wasn't too bad; it just stung a bit with each of the four injections. I had botox for migraines, which was much worse than these four injections for this nuclear medicine test. I will have the injections again on Thursday. I am not sure why it needs to happen twice other than they want to know how long it takes for radioactive material to drain into the sentinel lymph node for surgical scheduling. Plus, they took a few CT pictures and a 3D image. It took about an hour in total. On surgery day (Thursday), that said it would only take about 15 minutes, and then I would be sent back for surgery to start. Whew! This is a big unreal.

  • lily0420
    lily0420 Member Posts: 4
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    Concerned, wishing you well with your surgery tomorrow!

    Kay, thanks for sharing your experience with Taxotere/Cytoxan. Good to know that subsequent rounds might cause more side effects

  • anniepnw
    anniepnw Member Posts: 23
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    I am going to jump in on this thread as I was diagnosed yesterday. I had a routine mammo on Dec-06, called back for a repeat on Dec-08, then the biopsy on Dec-17, and now I know I have IDC+DCIS, 5 tumors, the largest is 0.9 cm, and the rest range between 0.4-0.7 cm. Logically my guess is I am looking at mastectomy vs lumpectomy. They all are ER+/PR+ but HER2 was inconclusive, and they are running a FISH test which means if positive, I'll have to do chemo in addition to radiation. Which scares the bejeezus out of me, I have to admit, as I was a primary caregiver to my first husband on his almost 5-year journey with lung cancer and witnessed it first hand. But I will do whatever it takes.

    I have an initial appointment with the surgeon for this Fri, Dec-23, at the hospital where I had my mammo and biopsy, she's their surgical director for breast cancers.

    I also made an appointment with two great doctors, a surgeon and an oncologist, at a local premier cancer center, a local equivalent of MD Anderson or Sloan Kettering. I would feel a little more at ease getting treatment there. The huge problem is their earliest initial appointment, the one I took was January 24, and I don't want to wait for a month but would much rather have the surgery done asap.

    Virtual hugs to all of you who posted here.

  • rosebud52
    rosebud52 Member Posts: 4
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    I am grateful to have been referred to this group by my Nurse Navigator. I am sorry any of us are being impacted by this horrible diagnosis. I am 70 years old, live alone and never, ever dreamed this could happen. No relatives…I have invasive ductal carcinomaI, tumor grade 2 in my right breast. ER/PR positive, HER2 negative. I have not met with my oncologist. I have an MRI tomorrow, face down for 20 minutes and very anxious as I am claustrophobic. I also have palpitations and am concerned about that. I am still in shock and very anxious. I hope I can make the best decisions when my plan is finally revealed.

  • dani_p
    dani_p Member Posts: 36
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    Rosebud - sorry that you need to join this group. This website is a wonderful resource. Your diagnosis is very similar to mine. I also had an MRI after the initial diagnosis. I didn't find it to be too terrible. Yes, you are face down, and your face goes in what I can only describe as being similar to the hole in a massage table. Mine was cushioned, and since I couldn't actually see the MRI tube as I went in, I didn't have issues with claustrophobia (also, they brought me into the tube feet first, which I think also helped). If you are worried, though, they should be able to give you something to help ease your nerves. After the results came in, I had to have a MRI-guided biopsy, and was given Xanax prior to that.

  • concernedaboutresults
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    I finally discovered that my cancer is ER+, PR+ and HER2-. My oncologist ordered an Oncotype Dx test which he said should be back in a couple of weeks and pending that result will find out if he recommends adding chemo or just hormone suppression + radiaiton. I am just home recovering from lumpectomy surgery. I should find out the results of the pathology from that on 1/4.

  • rosebud52
    rosebud52 Member Posts: 4
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    Thank you Dani for your reply. My appt was scheduled for 2:30P but called and moved me up to 11:30A so less time to stress. You were right…face down and not seeing the tube was great encouragement and I did great. Now just waiting for the report to be posted.

    This upcoming week will be meetings with oncologist and surgeon. This is where the rubber meets the road.


    Thank you again for your kindness

  • oppie1952
    oppie1952 Member Posts: 1
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    I cannot do mri even with Ativan..severely claustrophobic..any ideas

  • concernedaboutresults
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    Hi Rosebud. I just finished waiting and had lumpectomy surgery last Thursday. Best wishes as your treatment planning phase begins.

  • rosebud52
    rosebud52 Member Posts: 4
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    Thank you. I hope all your follow up treatments go well. Prayers for your strength and healing