IDC-first time posting

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aln82
aln82 Member Posts: 15

Hi Everyone,

This is my first time posting so I hope I’m doing this correctly. I’m 37 and was diagnosed with IDC on August 1. Had a lumpectomy with sentinel lobe something or other and waiting for path report. I think my details are in my bio. I’m hoping to connect with others with similar scenarios. Please reach out.


thank you!


Comments

  • L-O-R-I
    L-O-R-I Member Posts: 114
    edited August 2019

    Hi aln82,

    Sorry to have to meet here, but it is a good place to meet like women that can really be a good support to you. You are so young and must be quite scarred. There are no details in your Bio. Maybe it didn't save after you wrote it. It also didn't have your diagnosis there. Do you have a strong family support?

    Lori

  • aln82
    aln82 Member Posts: 15
    edited August 2019

    Hi Lori and all,


    Ok, I think I fixed the signature thing. Let me know if you still can't see it. Sorry to have to meet you here too. This is all so new and I am looking for other women who have had similar diagnoses and or treatments at a young age. As (I hope) you will see in my bio, I am 37, was diagnosed with IDC grade 3 early stage II ER/PR+, HER2- about a month ago. Two lumps (1cm and 2cm) both removed along with a sentinel lobe biopsy. My genetic tests just came back normal (I was so glad, I have a child and would have hated the idea of passing anything like this on). I'm waiting or my path reports should be Tuesday but feels like forever. I guess I'll definitely have radiation and hormone therapy but am waiting about chemo. It sounds like its a higher likelihood because of my age. Has anyone had a similar scenario who would be willing to share their experience. I would appreciate any support.

    Thank you and take good care.

    Anna
  • Moderators
    Moderators Member Posts: 25,912
    edited August 2019

    Dear Anna, sorry you have to be here for this reason, but wanted to send you a warm welcome to the BC.org Community! We know you'll find lots of great support and similar experiences from other members. If you need help understanding the pathology report take a look at our Resources for the Newly Diagnosed section. Some good info there that can help you understand path reports, treatment options, and much more.

    We hope this helps! Please let us know how everything is going!

    The Mods

  • L-O-R-I
    L-O-R-I Member Posts: 114
    edited August 2019

    Yes, Anna, your diagnosis shows up now. Surfing around here you will definitely find women around your age that can share with you their experiences. It's always good to take a deep breath when your mind starts spinning! When you get your tests back, you will be able to relax more. No news can feel like bad news, so be patient and pray for the best!

    Lori

  • DorothyB
    DorothyB Member Posts: 305
    edited August 2019

    I was stage I, not stage II - but also ended up grade 3 with re-reading of the slides from the lumpectomy.

    Do you know if your doctor is or will be ordering oncotype test?

    Radiation wasn't bad for me - I lubricated 3x per day from a few days before starting until days after finishing. I lubricated everywhere that could possible get radiation so all under arm beside breast, above & below breast, etc.

    Waiting for diagnosis and then waiting for test results were two of the toughest part for me, with third probably being trying to decide on chemo.

  • butterfly620
    butterfly620 Member Posts: 13
    edited August 2019

    Hi, aln82! This is all new to me as well. I am 36 and was just diagnosed on 8/5 with IDC (grade1), ER/PR+, HER2-. I had biopsies done on the palpable mass as well as an enlarged lymph node, and they both showed cancer. Since I'm at the very beginning of this journey too, I just wanted to connect with you. I have had many appointments, but no surgery or treatments as of yet.


  • aln82
    aln82 Member Posts: 15
    edited August 2019

    thank you Dorothy. These tips on radiation are very much appreciated since I’m for sure having that and hormone therapy at some point. Based on lymph node involvement in the path report Tuesday, they will decide about sending out the Oncotype do. May I ask how they ended up having you decide about chemo and what you decided fo do?

  • aln82
    aln82 Member Posts: 15
    edited August 2019

    thank you Moderators

  • DorothyB
    DorothyB Member Posts: 305
    edited August 2019

    aln2 - w/ regards to the oncotype in my situation:

    The surgeon told me from the beginning - you will only need radiation, no chemo.

    After lumpectomy, I decided to visit two rad onc and two med onc to find the ones that I was most comfortable with.

    After lumpectomy, I went to the rad onc recommended by Kelsey. She was also sure that I would not need chemo, but said she couldn't start radiation until after I saw the med onc. I did opt not to go with her, but it didn't have anything to do w/ that.

    Then I had the first med onc appt and she said I might need chemo. That totally freaked me out because what I had been holding onto during all of this was "mine isn't so bad, I won't need chemo". She ordered the oncotype test - which takes up to two weeks.

    In the meantime, I had second rad onc appt at a major cancer center. I opted to go with them. She was so sure that I would not need chemo that she said she would show the reports to the med onc there and get permission to start radiation.

    The med onc there, once I met with him, wasn't quite so sure as the cancer center had re-read the slides from the lumpectomy and changed me from grade 2 to grade 3 and also found lymphovascular invasion that the first pathology report did not see. However, since I was already marked up for radiation and scheduled to start that day, he said it was fine and that I could do chemo afterwards if needed.

    Then I got the call from the first med onc who said my score was "quite high" and that I needed to do chemo. I freaked out - and I didn't have the report in hand and didn't know my exact score, etc so felt totally out of control.

    Once I got the report, my score was 29. At my age (61 so the older half of the oncotype brackets), the cutoff for whether chemo is helpful is 25. I did find out that the amount of benefit shown on the report is based not on my exact score, but on all people in that age bracket (over 50 or 55 ? can't remember) with scores between 26 and 99. I did lots and lots of looking online, etc and found that the benefit of chemo for me was not that high, found one source from a doctor that said up to 30 the decision on chemo would also be based on other factors, etc. I decided to opt out of chemo and instead to do everything else I could to prevent recurrence while maintaining quality of life.

    So, changing diet, but not saying NEVER a soft drink again, just very seldom. Adding lots of good fruits & veggies, plant based protein, etc. Exercising more. Went to a PT to get strength training exercises custom designed. Will start Livestrong program at the Y in Sept (I definitely recommend seeing if there is one near you - no cost and very helpful from all I have read and personal recommendations also). Working hard to make tamoxifen work for me.

    You can send me a message if you want to discuss further - I don't normally hang out in this section of forum, but sometimes look at newer posts without many responses yet to see if I can help.



  • romashka
    romashka Member Posts: 62
    edited August 2019

    DorothyB,

    You have been through so much and it is lovely that you share your story. It truly helps. 💜

  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited August 2019

    aln- you can see from my stats, I’ve been there. I was originally told I wouldn’t need rads, but the positive node got me rads and almost chemo. My MO wouldn’t even send my tumor for Oncotype, but I went for a second opinion at Dana-Farber and they sent it in. There was some delays and I didn’t get my score for almost a month. With a score of 14, age, positive node that was reclassified from macro to micro, LVI that was missed and then found, opinions were all over the place! Mo still wanted to do chemo, second opinion doc said no, surgeon didn’t really want to do ALND, in the end it was my decision and I opted for no chemo, rads over more surgery, and ovarian suppression plus Tamoxifen.

    I’m comfortable with my choices, that’s what matters.

    Good luck, don’t be afraid to get a second opinion if you’re unsure!


  • bevemar
    bevemar Member Posts: 10
    edited September 2019

    Hi I am bevmar. I am 73 years old and was diagnosed with IDC in May, 2019, Had a bilateral mastectomy, 4 rounds of chemotherapy with 3 weeks in between and will be taking an aromatise. My lymph nodes were clear, however, I am scared and have anxiety the IDC will come back somewhere in my body. I believe I am a Grade 2, Stage 1 (with a letter after).....I do not have my pathology report in front of me. Ladies, I would appreciate any suggestions, help to calm down my anxiety, am taking medication for the anxiety, do not have any family members for support and I do pray often that my IDC does not return. I wish I had other ladies who have the same diagnosis to share with feelings, thoughts, how to get through this IDC diagnosis and not have so much inner anxiety. Thank you all for reading this and for any help to lessen my fear of reoccurrance and the IDC coming back.

  • flashlight
    flashlight Member Posts: 698
    edited September 2019

    Hi Bevemar, If you go to All Topics, scroll down to Moving on & Finding Inspiration, and look for Success Stories. I'm 68 and it helps to read positive stories from others diagnosed with IDC. I just had my 6 month, after radiation, mammogram and it was negative. Do you have to have radiation? I was so nervous I cried when they gave me the results. That isn't me. I'm usually the one who has to be strong for others. Good luck to you.

  • L-O-R-I
    L-O-R-I Member Posts: 114
    edited September 2019

    Hi bevemar, I had follow up testing 18 mos. after diagnosis and nothing showed up of concern on the mammogram, ultrasound, and MRI. There are simple things that you can do to decrease your recurrence risk. Try to eat well, drink plenty of water, and get proper rest, for a start. When you spend time trying to improve your health, it takes your mind off of your "past" condition and feelings of helplessness. I say "past" condition because you have had your bilateral mastectomy and your chemo. Your lymph nodes were found to be clear! You need to focus on those facts. You have done your best. Flashlight and I both have the same Grade and Stage as you. I know that I would have anxiety if I didn't focus on the things that I can do to improve my health. Anxiety is not good for you. It sends adrenalin through your bloodstream and just causes more anxiety. Deep breathing and meditation helps calm anxiety in a more hands on approach. Google "ways to meditate". That may help. It must be hard not having family to support you. You will find the ladies here supportive in ways that family can not always be. I know that reading suggestions from ladies that have walked where you are walking now, can be very helpful. You are fortunate that your IDC was found early. Many women would have loved to have their IDC discovered in the earlier stages. Doing little things that are known to make you more healthy will make you feel in control again, which will ,in turn, give you less worries/anxiety. Look at it as though the worst is behind you and enjoy each and every day. Your early detection is truly a blessing!

  • Patty66
    Patty66 Member Posts: 46
    edited November 2019

    Hi bevemar,

    Please do consider the power of your inner self! Your body is not only a biochemical machine, your mind has great power over this machine. Try to always think positively! If I may suggest: Self healing podcasts etc. might be helpful...

    Me: going currently through chemo and always trying to put the good thoughts in my mind. I am fighting and I will win! Surgery, radiation, hormonal treatment to follow - all medical aspects covered, just need my thoughts to go along and help the healing!


  • LAM64
    LAM64 Member Posts: 7
    edited November 2019

    Hello,

    I am newly diagnosed IDC. First time posting. I’m going thru info gathering phase and a little overwhelmed. Biopsy of axillary node was positive. I haven’t seen med onc or surg onc yet. I’m being told chemo first but would really just like surgery first. So glad to have a community to talk to!

  • L-O-R-I
    L-O-R-I Member Posts: 114
    edited November 2019

    Hi LAM64, Sorry to hear about your new diagnosis! Talk to your Dr. about having surgery first, if that is what you want. You have a lot of say in your treatment and don't want to feel that what you want doesn't matter. Ask your Dr. the pros and cons of doing the surgery first. One way may be better than the other, but he should also take into account what you want. They can't force you to do the chemo first. They can't force you to do chemo at all, if you chose that. There are so many questions that you need answered to your satisfaction, so that you feel more comfortable and at peace with your agreed upon treatment. Keep plugging along and before you know it, you will know what to do. Meanwhile, all the best! Keep us updated. You should fill in the diagnosis, treatment, etc. It helps when comparing yourself with others here, so that you know how they dealt with their similar types of breast cancer.

  • LAM64
    LAM64 Member Posts: 7
    edited November 2019

    thanks L-O-R-I! I’ve figured out how to make dx public. I’m still waiting on HER2 status (unequivocal). Waiting on appt with med onc & surgeon. Also I have axillary node bx positive for cancer cells

  • msphil
    msphil Member Posts: 1,536
    edited December 2019

    hello sweetie I was only 42 when found lump in shower we were also planning our 2nd marriages at time of diagnosis. No history of breast cancer in family was the first. But I had my cry and decided to fight and be Hopeful. My fiance and parents sisters n brother and best friend were my rocks. Praise God I am now a 25 25yr Survivor and we celebrated our 25 yr wedding anniversary. Hang in there. msphil idc stage2 0/3 nodes 3mo chemo (adriamycin cytoxin 5fu) then Lmast then 3mo. after got married then 7wks rads 5yrs on Tamoxifen.


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