Newly diagnosed with IDC on 10/28/2014 - scared

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szabo7652
szabo7652 Member Posts: 6
edited January 2015 in IDC (Invasive Ductal Carcinoma)

I was diagnosed with DCIS about 10 years ago (or longer) in the left breast. Had surgery, removed all cancer cells, was put on Tamoxifen. Stopped taking the medication years ago. Had regular mammograms nothing every noted after that except whenever it was a new doctor they would do a ultrasound around the previous area because of scar tissue. This past Feb/March went in for routine mammo and once again an ultrasound was ordered. He seemed satisifed with the result but wanted me back again in September. Long story short, in early October I thought I felt a lump but wasn't sure. I called and made appt for mammo and they wanted the ultrasound done while I was still there. Definitley a lump about 1/2 inch, scheduled biopsy for this past Monday, got results on Thursday. IDC - Grade 1. I asked the doctor how I could have a lump that size grow that fast in 7-8 months? His answer - could possibly traveled from somewhere else. Talk about scared, terrified etc.

I have an appt scheduled with a surgeon on Wednesday 11/05 for consult. I have found an incredible amount of info on this website which is a big help. So at least I can go see the surgeon prepared. I just wish I was prepared for what they might tell me.

Hate to be such a complainer but I have had such a high stress level for the last 6-7 months, lost 30 pounds (not trying). I don't know how I can go through this, and my insurance isn't all that great. Any feedback would be greatly appreciated.ThumbsUp

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  • Maureen1
    Maureen1 Member Posts: 614
    edited November 2014

    (((szabo7652))) so sorry you have gotten this news…you don't sound like a complainer but you have every right to complain if you want to - just doesn't seem fair, breast cancer lurks in our bodies and rears it's ugly head whenever it wants:( I know it's hard not to think of the worst case scenario but with a Grade 1 pathology it doesn't sound aggressive? I've worked as a nurse in breast care centers for the last 20 years - one thing the radiologists tell us is that when someone loses more than 10 pounds they are able to "see" things in the mammogram that they couldn't see before. It's possible that the stress you've been under for the last 6 - 7 months has contributed to your weight loss and the lump may have been there a lot longer but just was "hiding" until you lost weight. I had a "normal" mammogram every year, my last one was 1 month before I found my lump, and it never showed up on a mammogram or ultrasound because it was hiding behind cysts and dense breasts. The radiologist estimated that it had been lurking in there for more than 5 years - YIKES! More of the reason I had a prophylactic BMX after I finished chemo:) I hope your surgeon is able to ease your fears and you soon have a treatment plan to fight this beast. Let us know how it goes…I'll keep you in my thoughts and prayers (((Hugs))) Maureen

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  • szabo7652
    szabo7652 Member Posts: 6
    edited November 2014

    Thank you for the encouragement. It helps! I just have to make up my mind that I have to adapt to a positive mindset and work on getting me through this.

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  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited November 2014

    welcome szabo! I'm so sorry you find yourself here, especially after having gone through this before! I too have dense breasts, a fact I didn't know until I was diagnosed. I actually had 3 spots of IDC and two of them didn't even show up excel on u/s. Grade 1 is good, not so aggressive. Because I had 3 tumors the right had to go and I did not want to spend time sitting through MRI and whatever waiting and worrying about the healthy breast so I opted for BMX and feel it was the right decision for me. I want to put this behind me and move on with my life. I wish you the best as you make these big decisions and hope you can find some peace. I too have lost weight, since my dx but every test and procedure I can put behind me helps. I read here once a treatment plan is in place it gets easier and I've found that to be true so far. Hugs for peace and rest for you! You can do this!!

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  • Kalonis52
    Kalonis52 Member Posts: 134
    edited November 2014

    Hi there, Yes, IDC grows pretty fast. I had IDC in 2006. My lump grew within a few weeks or so. It was a 2.5 cm in size. Not to scare you, but, it is one of the most aggressive types of Cancer. Everyone is different though. You are ok. It is 1/2 cm. Grade 1 which is low. Just follow the Doctors steps. You will have options. Keep us updated. Good Luck!

    Kaloni Winking

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  • szabo7652
    szabo7652 Member Posts: 6
    edited November 2014

    Met with my surgeon on Wednesday to go over the pathology report from biopsy. Long story short - lumpectomy vs mastectomy. Based on size of tumor she is leaning toward lumpectomy, sentinel lymph node dissection followed by radiation 5 days a week for 5-7 weeks. Or I could do the mastectomy followed by all the other stuff as well. I understand all of that and I know I need to make a decision, but if I just do the lumpectomy, once the pathology reports are back with all the marker results and it shows more trouble I may be looking at a mastectomy after all. Its like being between a rock and a hard place, lol.

    I am waiting on a call from the radiation oncologist to make an appt to discuss treatment and everything that is involved with that. Then next Wednesday I have an appt with my surgeon to let her know my decision and get the ball rolling so to speak. Do I got through one procedure just to find out I will have to do the other one after all? Its just so much to absorb and think about Loopy

    I do not exactly belong to a closeknit family, dysfunctional at best and no real friends to speak of so eveything I need to know comes from this website and these forums. I appreaciate all the feedback that I get from you guys, it is a godsend. (((hugs))) to everyone who is going through this monster and my prayers are with you. I will keep posting everything that I find out about my diagnosis and prognosis.

    szabo7652

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  • Ridley
    Ridley Member Posts: 634
    edited November 2014

    szabo - when you meet with the radiation oncologist, ask if you will need radiation if you were to have a mastectomy.  It depends on location, lymph nodes etc, but often node negative women who have a mastectomy don't have to have radiation.

    I ended up with a mastectomy after a lumpectomy because I had a more complicated pathology than expected.  I was able to avoid radiation because of that.

    I don't regret having the lumpectomy first.  It gave me a chance to figure out more about reconstruction while getting the first surgery over so that we knew exactly what I was dealing with,

    Good luck!

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  • Hope50
    Hope50 Member Posts: 103
    edited November 2014

    it's a tough decision zsabo. Everyone is different. I chose lumpectomy for me. My tumor was almost 2cm and Grade 3. They got clear margins and they also did the sentinnel lymph node dissection and removed 4 lymph nodes. All clear. I did 4 rounds of chemo and now just this past week began 7 weeks of daily radiation.

    It is so much to absorb and make decisions on. I will be praying for you. This site has so many encouraging ladies on it. It has helped me so much.

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  • Bippy625
    Bippy625 Member Posts: 890
    edited November 2014

    Hi there, I also have IDC and am facing surgery. I have decided to do a bmx due to very dense breasts, and my desire to avoid doing this show again ever. Also, I know many times that they find stuff in the "good" breast after pathology that never showed on any tests. Also I should say that in my case by the time they got all of the tissue via lumpectomy, I would have zero left as it was full of tumors anyway. They are dead now and dissolved but....i do not trust it. I meet with Ps today.

    It all sucks, no matter what you have to do!

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  • szabo7652
    szabo7652 Member Posts: 6
    edited November 2014

    First of all, thank you to everyone I have heard from about this terrible disease. You posts and encouragements are priceless to me. I have made my decision for a lumpectomy and following the pathology reports, depending on what the results are, I will opt for the radiation therapy 5 times a day for 5-7 weeks. I had my appt with my surgeon yesterday and gave her my decision. My surgery is scheduled for 11/24/14. I figured that was a good time to do it even though its Thanksgiving week since I have off work that full week. I told my surgeon I would want her to call and give me the results over the phone with the pathology reports instead of waiting for my follow-up appt. Today I had my consultation with the radiologist and he explained the whole picture of the therapy for me. He did mention the "external beam partial-breast radiation" therapy that he could do if my pathology reports make me a good candidate. That would be a higher dose of radiation given twice a day for 5 days in just the localized area of the lumpectomy. Anyone have any experience with this? Gives me something to think about in the next few weeks.

    I am just hoping for very clear margins and clear lymphs. Asking for prayers and thoughts and mine are with all of you out there going through this also. Love to all

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited November 2014

    I was a candidate for brachytherapy. After reading about it and realizing that it is still considered experimental, even though insurance companies do pay for it, I declined. Since I declined, further research has indicated that some women have required mastectomies after completing brachytherapy, due to complications. That said, many doctors recommend it, especially for women with very far or able tumors. For me, I chose to go the conventional route of whole breast radiation for 7 weeks. I'm almost 5 years away from diagnosis and I have no regrets with my decision.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited November 2014

    I was a candidate for brachytherapy. After reading about it and realizing that it is still considered experimental, even though insurance companies do pay for it, I declined. Since I declined, further research has indicated that some women have required mastectomies after completing brachytherapy, due to complications. That said, many doctors recommend it, especially for women with very favorable tumors. For me, I chose to go the conventional route of whole breast radiation for 7 weeks. I'm almost 5 years away from diagnosis and I have no regrets with my decision.

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  • Parrotfisch
    Parrotfisch Member Posts: 2
    edited November 2014

    I was diagnosed with IDC in August 2014 and had surgery 9/17/14. My tumor was small, stage one and ER/PR positive. Her2 negative. Very slow growing. I was a basket case up to the date of surgery. I understand exactly how you feel. I elected to have lumpectomy with e-IORT, single dose of radiation given at the same time of surgery. It's relatively new in the US with maybe about a dozen surgeries performed at this particular hospital. The radiation given is the equal to six weeks worth of radiation. I had clean margins. The one lymph node they took was clear as well. I was prescribed Arimidex. No chemo! A couple of friends had the system you were talking about, 2x a day for a week. Both had very little good outcomes, minimal pain from the radiation and both were happy to get it done and over with in one week vs six to seven weeks. Neither had the treatment I did because it was not available where they lived. Best of luck to you. You will be fine!

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  • Parrotfisch
    Parrotfisch Member Posts: 2
    edited November 2014

    I know two women who had the radiation treatment you described. Both had minimal discomfort and were very happy to have the radiation done in one week vs six to seven.

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  • szabo7652
    szabo7652 Member Posts: 6
    edited December 2014

    Hi everyone! Well I had my surgery on 11/24/14, lumpectomy and sentinel lymph node removal. Surgery went well, recovery was a bit dicey. I was really sore and it was mainly from the lymph node incision. My bras would irritate the incision and my whole side was sore. Pain meds got me through that, thank God. Had my follow up with the surgeon today and first off the lymph nodes were clear. Apparently the margins weren't clean. They found another smaller lump just at the edge of the margin and now I have to go back for another surgery to remove that one, which I was told would not have shown up on the mammogram or ultrasound I had.  My grade increased from 1 to grade 2. Unfortunately they couldn't get any cells to check the markers, the surgeon said that the biopsy I had basically removed all the cells. Doesn't make sense to me but I am not a surgeon. She said radiation would take care of the second lump found but since they couldn't get markers from the originial tumor it was best to remove the second one so she can get markers.

    So it is back to a waiting game for me as I know treatment hinges on the determination of the markers. So as of right now I am going to have radiation starting sometime in January unless something else comes up after I have this second surgery. Now I understand why some women opt for mastectomies instead
    of lumpectomy. I will keep posting results as I get them just hope I can get this over without driving myself crazy with worry.

    Hope everyone had a fantastic "Thanksgiving" and thank you for all the support.

     

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    Szabo-

    So glad to hear your surgery went well! Rest up, please keep us posted on how you're feeling and when your second surgery is. You're in our thoughts!

    The Mods

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  • szabo7652
    szabo7652 Member Posts: 6
    edited December 2014

    Had my second surgery yesterday, went pretty well, feeling good just a little sore. Finally got results of my tumor markers, yeah! Estrogen receptor 100% positive, progesterone receptor < 1% negative and HER2 1+ negative. Grade is II (6 pts). Still not sure what it all means but I guess hormonal therapy good bet, not sure about chemo yet but radiation is a definite. I asked the surgeon if she would order an MRI for both breasts so I can be sure that there aren't anymore tumors lurking around especially since they didn't even know the second tumor was there. I guess my next step will be an appt with a medical oncologist to determine exactly the course of treatments I will need. I keep researching anything and everything about breast cancer and it still gets so confusing. I am driving my husband crazy with all the different possible treatments, he just keeps saying "just do what the doctors tell you to do". I'm not sure he can grasp the full impact this disease is having on me. I am trying to stay very positive and I am looking forward to talking to the medical oncologist hoping I will get the answers that I need.

    I have actually decorated my house and got a Christmas tree for the first time in 4 years! Good luck to all and "Happy Holidays" if I don't get back on here to update the news from the second surgery (hoping for clear margins) and the MRI.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2014

    Szabo-

    Glad to hear you're feeling well after your second procedure. There are a lot of treatment options, working closely with your medical onc to find the one that fits you and your disease best is key. Write down any and all questions you can think of, so you don't forget to ask them during your appointment! In the meantime, try to enjoy your holiday, sounds like you've got a touch of the holiday spirit! We're thinking of you!

    The Mods

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  • funthing42
    funthing42 Member Posts: 418
    edited December 2014

    Hi

    Everyone. It's amazing how brave we are.

    I cannot get my head around the whole recurrences.

    I was told I had a 4% of mine coming back in 2009. Oncotype was slightly left of the cusp I did Lumpectomy, RADS and Anastrozole. It was only 0.8cm. Since its been back twice.

    Mine came back only two months after finishing chemo.

    Has anyone ever been told why it changes receptors.

    Estrogen+ progesterone+her2-

    Estrogen+progesterone-her2+ 2013

    Estrogen+progesterone-her2- 2014

    I'm still doing herceptin until February. My fear is what happens when this ends. Will it escalate.

    Pet Scan neg. But now I feel every pain? I stopped exercising.

    I'm told it is local recurrence. I'm not sure what to think. I'm extremely nervous when relaxing.

    Can someone tell me if I should feel any relief. Totally numb.

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  • CanuckPrincess
    CanuckPrincess Member Posts: 22
    edited December 2014

    When they biopsied two of the four spots in my tumor one came back Her2+ and the other Her2-. I was told that it IS possible to have a mixed cancer within the same tumor...and well, lucky me...UGH!

    Chemo starts tomorrow and I am way more excited than people think I should be!! LOL I keep telling them I can't wait to feel the cardio-toxic, vein-scarring drugs run through me!!

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  • LakesideWLabs
    LakesideWLabs Member Posts: 29
    edited January 2015

    Hello canuckprincess. I start the same treatment as you on Jan 8th. Good luck! I too am ready to get the show on the road androck this!

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