recurrence

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KBeee
KBeee Member Posts: 5,109

I had a 1.9 cm tumor and negative sentinal node removed via bilateral mastectomy in Aug 13, followed by chemo and reconstruction. I just had a lump removed last Thursday which they were "sure" was scar tissue. They were wrong. It came back positive for BC. I am devastated. I do not know where to begin or even what questions to ask.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited February 2015

    Kbeee - I have no great words of advice for you, other than the usual - ask your docs what they advise in this situation.  I am wondering if you were not a metabolizer of Tamoxifen, and would ask about the test for that - some docs think it is reliable, some don't.  I guess it is possible that it didn't offer you protection - and if so, what do they advise going forward if this is an ER+ mass? I would ask if they believe the path report is telling them this is a recurrence or new primary, I think there are some more sophisticated tests that compare the new mass to your original path slides.  Other than that I am sending you good thoughts and a hug.

  • wrenn
    wrenn Member Posts: 2,707
    edited February 2015

    This news breaks my heart. No.

    I hope you have someone close by to help you adapt to this news and I hope you will lean on the women here. No one deserves this, least of all you. You have been so helpful and supportive to me. I know you will be ok but I can't imagine what you are going through today. Hoping for comfort for you.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    Thanks gals. I am putting together my list of 10,000 questions for the doctor. The BS's nurse never called PS's nurse back today, so I will cut out the middle man tomorrow and call her myself. So for now, it's just the ever not-so-popular waiting game.

  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited February 2015

    Hi, KBeee, I am also a recurrence club member, which neither you nor I wanted to join! When I had my recurrence, of course they removed the lump and I did radiation. I had not done chemo the first time since I had a low oncotype, but they felt I should do it the second time, so I did TC. And finally, since the tamoxifen did not work, they are putting me in menopause with a monthly shot and I am on anastrazole. It sucks to have to go through this all again, no doubt, but I am feeling good again, so stay strong.

  • Beatmon
    Beatmon Member Posts: 1,562
    edited February 2015

    Hugs...so sorry

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    TwoHobbies, thanks for the input. That helps a lot. I had TC chemo in round one and I think I started it right as you were ending it! I also had a low oncotype...and was on Tamoxifen. At least, I don't have to say, "what if". I do not have my pathology back, but am guessing it's the same as last time since it was in exactly the same spot...so I am guessing they will try something else this tiem around. Hoping and praying it is just a local recurrence.

  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited February 2015

    I remembered your name and I think we did bump into each other on the chemo thread. My last was 8/20 (a day to remember). I'm not sure if they would have you do chemo again or not. If you did, it would probably be a different regimen, but for sure they'll get you to another hormone therapy. I forgot to add that they also did another MRI to see if there was anything else in the chest wall area. Then they did my lumpectomy and another sentinel node biopsy with the second surgery and they did scans. Let me know if you have any questions but don't get discouraged. Crossing my fingers for you!

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    I had bilateral mastectomy last time. They did not do radiation. I have an MRI on Thursday. I will call the doc tomorrow to try and find out the plan as far as other scans.


    I am guessing they will take the implant out and put a TE in and then do radiation for starters, but I guess we'll see. I just want to get my name on their surgery schedule and get things going!


  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    Two hobbies, our situations are very, ver similar. Wow! I remember your name because when reading the TC thread, I rememberyou describing your "two hobbies". I hope everyone is healthy now!


    Thanks for all of the support. I am not usually at a loss for words, but I can barelt think of wha questions to ask. I will take any and all suggestions!!

  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited February 2015

    I didn't have implants but I hear they don't mix well with radiation so that might be correct. I think the questions will come naturally once you hear the plan. Don't be afraid to get a second opinion if you are unsure.

    I will be on vacation for a while but wishing you luck for the best possible news.

  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited February 2015

    KBeee, just checking in on you. How are you doing?

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    So far, so good. My surgery is Wednesday. They are going to go back to where the cancer was and take some skin and muscle to make sure there's no residual tumor there. They also will do a sentinel node biopsy again. I also will have my ovaries out. I had a PET scan on Friday which looked good as far as MO could tell; radiology report was not in yet. I am anxious to get the surgery done and out of the way. I'm hoping for good news on pathology. I am going to have them run oncotype on original tumor after the surgery to help make sure we're making the best treatment decisions. If there are no surprises, then plan is for radiation in early April and an AI to follow. Thanks for checking in!!!

  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited February 2015

    That sounds like good news on the scan. I'll be thinking about you Wednesday then. The breast-related surgery will be easy peasy but I didn't have the ooph so I'm not sure how that is. I hope it goes smoothly and you have an easy recovery.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2015

    K, just saw this and wanted to send my support and warm wishes for best possible results Wednesday. Take care.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    Thanks ladies. I appreciate the support. I will post at some point once I am coherent enough to after surgery.

  • DavisD
    DavisD Member Posts: 338
    edited February 2015

    I was diagnosed with high grade DCIS in 2011. Had a right side mastectomy with temporary expanders. It took three tries to go ahead with the surgery to remove the expander and put in the implants (one of left was for symmetry). The oncologist "offered" me Tamoxifen but they didn't try to push it so I didn't take it. I read numerous articles regarding the controversy over what to do about certain types of DCIS/some may never turn into IBC but no surgeon wants it to be one of their patients. Maybe I should have sucked it up....About three weeks ago I found what felt like a large marble in the area around the mastectomy incision site. I thought it must have came from the implant because I have no breast, just skin and nipple from the sparing surgery. I've massaged this area every day as recommended so it did alarm me that it could surface so quickly. Saw the PS first. He said it wasn't the implant but it needed to come out and be biopsied. Scheduled for 2/23/15. I had another little hard thing come out on that same breast so I contacted my BS. She said the one that "worried" her was the larger one along the incision site. When I asked if she'd seen this before she nodded and said she didn't think we should wait until the 23rd to get an idea of what we're dealing with. She took a small sample in her office. She called on 2/12 to let me know it was cancer and she would coordinate with my PS to work out a plan for the 23rd. On the 23rd, yesterday I guess, I had a Sentinel Lymph Node biopsy, tumor extraction and then the PS put me back together again! He had to put in a new implant which I'm not sure why..maybe the tumor crowded it and damaged it?

    I'm waiting now for the biopsy results. She said she hoped to get the before our postop on Monday. So, once again I'm constantly checking my phone and wishing it would ring so we can get this party started! I want a plan and to get started. It's not a convenient time at work and nobody to do my work but I'm just taking it a day at a time. I took two days off from work so I'm hoping for word before Thurs.

    I really just wanted to connect with someone going through similar experiences and I found my situation relating to all of yours. I have a few friends who've experienced BC but nobody having a reoccurrence after mastectomy!  Did anyone else not have bilateral mastectomy? I probably should have done both. The first surgeon highly recommended it but the one I chose didn't think it was essential. I do have Atypical lobular hyperplasia on the good side. It's been almost four years and I have been diligent in monitoring that left side but since the other side was "only DCIS" I didn't think it could happen. Now I know I'm one of the top 1-2% but not the wealthy kind, ha!

    Best wished to all of you struggling like me :)  Diane

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    I was also in the 1%...I tell my friends the same thing...not the wealthy kind of 1%. It seems if something will happen that only occurs in 1%, I'm at the top of the list. I hope you get answers soon. The waiting is absolutely the hardest part. I hope you have a plan in place soon as well.

  • DavisD
    DavisD Member Posts: 338
    edited February 2015


    Thanks for responding so quickly KBee! So glad to have a sister in that 1%.  Did I read your post correctly, you are having surgery tomorrow? Sounds like you've through a lot as well and I wish you the best if it is tomorrow.

    I don't have a plan together since the appointment with my BS was a squeeze in at 5pm then didn't get results until the following Thursday. All of the coordination between the BS and PS was done by phone and didn't even see them until they stopped by prior to surgery yesterday. When I asked what her gut feeling told her, I knew how ridiculous that sounded! Of course she said we would need to wait until the pathology came back  Why would I even want a doctor who based their treatment plan on "gut feelings" anyway?!  I'm blaming this one on surgery brain, ha! I will see the BS and PS on 3/2 then the Oncologist 3/9 unless she feels it needs to be moved up based on pathology report.

    Thanks again for responding. It's a little lonely on this end since I know no one having BC after a mastectomy.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    I would never hesitate to ask about gut feelings. About 5 or 6 times in my life I have had really, really strong gut feelings which went against everything logic and my brain thought. My gut was right every single time. Unfortunately I have some gut feelings about my current situation and it is hard to try to convince doctors of that. I also am a paramedic and sometimes will take an extra person down to the hospital with me simply based on a gut feeling...and it is always right. I don't get them often, but they are never wrong. I hope your plan is in place soon.


    Yes, my surgery is today. I leave in about 45 minutes.

  • DavisD
    DavisD Member Posts: 338
    edited February 2015

    KBeee I will be waiting to see how things go for you today. Even though I don't really know you, I have a gut feeling we could be friends!
    I hope you have a good support system. I'm still awaiting what feels like my sentencing/pathology report. I can deal with anything but I have to know what I'm fighting against. You seem like most of us. We just need to know what the plan is. You also seem remarkably brave to come from that Feb 2 post to where you are now. You were "devastated" and then you started advocating for yourself (BTW I loved that you "cut out the middle man") and now you have a plan. I think you are very brave and you will be in my thoughts today. Keep us posted when you're up to it.

     

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    Node was positive, so chemo is in the cards. I know that sounds bad, but my very strong gut feeling was that this tumor is resistant to hormonal meds. About 5 times in my life, I have had strong gut feelings that went against everything every doctor said; my gut feelings have. never been wrong and following my gut has saved both my life and my daughter's life. My gut feeling was that if I do not do chemo, I will be stage 4 in 2 years. So though I. hate chemo, I am relieved that I will be getting the correct treatment to save my life. I am stayIng overnight and will go home tommorrow.


  • Morwenna
    Morwenna Member Posts: 1,063
    edited February 2015

    Don't knock gut feelings. I think it is important to remember that medicine is as much an art as it is a science!

    I'm sorry you find yourselves in this scary situation. There but for the grace of G*d go any of us!!

    Good luck with your treatments. Be well.

  • dltnhm
    dltnhm Member Posts: 873
    edited February 2015

    Karen -

    I am just today reading of your recurrence and now your results today. Just wanted you to know that you are in my thoughts and prayers.

    Diana.

  • ahdjdbcjdjdbkf
    ahdjdbcjdjdbkf Member Posts: 645
    edited February 2015

    Love and support for the smart and strong ladies being so horribly challenged

  • katcar0001
    katcar0001 Member Posts: 621
    edited February 2015

    Hi Karen, I have been thinking about you today and was hoping you would post how your surgery went. I am sorry about the node, and it seems you have a very clear path now and know exactly what you need to do. I think one of the hardest things is trying to make a decision, and now it has been made. I am so, so sorry you have had to go through this, and you've shown amazing courage. Sending you hugs.

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    Thanks for all of the support ladies! I think the $4,500 I was going to use to pay for the Oncotype test is going to go for a nice trip for my family when this is done...now just to convince hubby of that

  • Meow13
    Meow13 Member Posts: 4,859
    edited February 2015

    Kbeee, so sorry to hear of the recurrence and the positive node. Maybe radiation will zap this thing. Do you know what chemo is right for you?

    Sounds like you doing everything you should be I wouldn't pay for oncodx either. If it came low again would you still do chemo?

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    Yes, with a positive node, we will do chemo. This tumor has proved to be devious and aggressive in the words of one of the docs

  • DavisD
    DavisD Member Posts: 338
    edited February 2015

    I'm sorry your node was positive. I agree having chemo is better than the alternative.  Sometimes this all seems so surreal. My node was negative, tumor was 2.2cm, margins clean but they haven't determined the ER PR HER2 status. They also wanted to move up my Oncology appointment from two weeks out to asap. I froze up and didn't ask what was the rush when it looks positive so far. The earliest they could see me is this Wed. Hopefully I'll  have all the results by then.

    I've read a lot of posts about this Oncotype. I've never head of it so looked it up. Is this something insurance usually covers?

    Karen I agree with trusting your gut feelings. Best wishes for a steady recovery:)

     

  • KBeee
    KBeee Member Posts: 5,109
    edited February 2015

    Oncotype is usually covered in primary tumors, but not in recurrences. It is used in ER+ tumors and gives a score and distant recurrence percentage of high, moderate, or low to help guide decisions on the benefits of chemo. Mine came back low last time, but I don't think it is applicable to local recurrence.


    Diane, I hope you have a plan in place soon.

    Keep in touch ladies; we'll plow rough this together. There will be good days and bad. We'll celebrate thegood and hold each other up through the bad.

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