Any young ladies just diagnosed with a recurrence??

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After almost hitting the 2 year mark, it is back in one aux lymph node. I don't have a plan in place yet...Jus had an MRI this am and will get more info...Anyone??? Thanks LADIES..THIS SUCKS.. Not sleeping at all.... : (

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  • bevin
    bevin Member Posts: 1,902
    edited March 2015

    Alibeths,  so sorry you are faced with this.  I know others who have had a recurrence will be by soon with some input . If you cant sleep call your doctor for some medication and or try yoga, meditation or even over the counter benedryl.  Its important to sleep. wishing you the best outcome possible.

  • Faye33
    Faye33 Member Posts: 180
    edited March 2015

    Alibeths... So sorry you are dealing with this. I was diagnosed with Paget's disease last Thursday and my surgeon believes it is a breast cancer recurrence from five years ago. I haven't slept decent since my biopsy a week ago. I'm exhausted but when I lay down to sleep I either can't stop thinking about cancer or I can't ever reach a deep sleep, so I just lay there kind of half asleep, if that makes sense. I know I'm dealing with some anxiety, as well

    I don't have a treatment plan in place, either. I remember last time how much better I felt when we had a plan of attack and actually started killing cancer.

    Sometimes I just get overwhelmed by life still moving on at the same pace it did before. Kids' activities, volunteer work, social events all keep happening. Other times I'm thankful for the busyness, because when I stop the "what if's" drive me crazy

    We'll take it a day at a time, okay? And before we know it we will be kicking cancer's butt again. Hugs...

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

    I finished chemo in Nov 13 for my little stage 1, node negative cancer that they thought was so minor. It came back ...in 2 places...diagnosed early February. I start chemo in 11 days. It rots, but we'll plod through this detour again. I can relate to the not sleeping. I don't think I slept a wink until I had a new plan in place. When is your next appointment

  • Alibeths
    Alibeths Member Posts: 656
    edited March 2015

    I have surgey schedules for tomorrow to remove this bad boy. What a nightmare.

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

    How did your surgery go? I hope you are feeling okay. Have they discussed what will be next? Thinking of you

  • Alibeths
    Alibeths Member Posts: 656
    edited March 2015

    surgery is done! Will know more in the coming weeks. They took out 7 nodes and only the one contained CANCER. Thank god! What's your plan

  • Fran2014
    Fran2014 Member Posts: 140
    edited March 2015


    Hi Alibeths- hope your are recovering well. I am new to the group and totally agree with your assessment of the situation..IT SUCKS!        I am 17 days out from my BMX. It totally stinks having to go through this again (I was 4 years out). I know that we are a resilient group (to say the least) but I so wish we didn't have to be! After a week, I was able to get around a bit better and now only require the pain killers at night (thank goodness b/c the constipation was a real pain). Last week I had 2 of my drains removed but the other 2 drains are still draining quite a bit (ugh) so I have to wait on having them taken out. I start chemo  and Herceptin again on 4/9 (another ugh!). Have they developed any subsequent plan for you at this point? Wishing you a smooth recovery!

  • Alibeths
    Alibeths Member Posts: 656
    edited March 2015

    Not yet!!! WHere was your recurrence? Mine was in ONE LYMPH NODE!!! I cannot believe this...I am devastated!

  • Fran2014
    Fran2014 Member Posts: 140
    edited March 2015


    Would you believe it was in ONE lymph node for me as well? What's even crazier is the fact that it was found in my right side armpit but I had no cancer on that breast previously or now (it apparently only occurs in 2% of patients- oh boy, what I luck I have!). From Dec. thru the end of Feb., I had neoadjuvant chemo (where they give you chemo first and then surgery). The chemo was the "lighter stuff" (as I refer to it- Taxotere, Herceptin and Perjeta-so I was able to continue working while I received treatments. So then they did the surgery and found that I had a "very positive response" but NOT a COMPLETE response to the chemo...so now I have to undergo more of the yucky, rougher chemo (that starts April 9th). Between recovering from the surgery and the upcoming chemo, I have decided not to return to work for the remainder of the school year (I'm a school social worker).

    I know how hard it is to have to go through all this crap again. Some days are better than others for me. This surgical recovery is exhausting my patience at times. However, I try to focus on spending time with my kids and looking forward to all the more enjoyable events that are coming up (one is graduating the 8th grade and the other is graduating high school). Please feel free to reach out to me whenever you are having one of those "tougher" days and you just need to vent and to keep me posted on your recovery.

     

     

     

  • cjanet
    cjanet Member Posts: 328
    edited April 2015

    I'm right there w you. Wondering if I'm a recurrence or if my cancer simply never stopped growing bc it wasn't really responding to chemo (only had a 40% response rate the first time in 2012) then I had surgery and more chemo when they found the low response rate. Then rads. And here it is again, shown up in a bone all the way up in the top of the neck where no surgeon will touch. So I stopped taking the Tamoxifen a few days ago. I had always had the feeling it was not helping me! I am 38 with 2 young kids ages 3 and almost 7.

  • Alibeths
    Alibeths Member Posts: 656
    edited April 2015

    why r we all so young???

  • Speed
    Speed Member Posts: 4
    edited April 2015

    Hi Alibeths, I am in your exact situation. Had lumpectomy in june 2014 with 3 nodes negative triple negative BC. Chemo Taxotere and Cyclophosphamide finished in November, Hysterectomy in January 2015 went to get bilateral mastectomy, found out it came back in the lymph node. Drs panicked, said first chemo then now said surgery. I don't know which chemo would work since obviously first one didn't. Please tell me what your drs plan for you?! I thought I had this under control, but obviously not....Good luck


  • cjanet
    cjanet Member Posts: 328
    edited April 2015

    I am just trying to cope with this the best I can.  I have mets throughout my cervical spine but the radiation has greatly improved the pain already.  I have another bone met a little further down my back.  Doc is going to put me on Lupron and then another hormonal therapy.  But I'm being realistic, not sure how long that I can keep this cancer beast at bay.  My oncologist feels when we are younger the cancer cells do grow faster, though I technically DON'T have a super aggressive cancer.  Actually, the fact that it's slow growing is how it slips underneath the chemo- chemo targeted fast growing cells and 60% of my cancer cells were NOT knocked out in 2012, according to the breast tissue biopsy.  And now the Tamoxifen could not stop it either from spreading.  I am just glad that I do have support here and in real life.  I am trying to lead a relatively normal life but I do feel almost haunted.

  • bimmer2011
    bimmer2011 Member Posts: 30
    edited April 2015

    So sorry to hear what you are going through Alibeths!!! This does SUCK and is not fair. I was diagnosed this week with a recurrence and I am only 33. I hope you recovered quickly from your surgery and are doing well.

    Fran2014 my recurrence showed up in the opposite armpit from where my primary breast cancer was removed like yours! I have never considered myself lucky but I guess I can now. I have an appointment on Monday to get the details and determine a plan to move forward. However the dr did mention that she thinks that there too many lymph nodes involved to consider surgery at this point which made me sad.

    Cjanet I totally understand what you are going through. My cancer did not respond well to chemo and I am very hesitant to go that route again since it did very little for me but I will wait to hear what the dr has to say!

    Stay strong ladies!

  • Fran2014
    Fran2014 Member Posts: 140
    edited May 2015

    bimmer2011- Just wanted to wish you good luck on Monday with your appointment. I will be sending you out extra positive thoughts and prayers! Just underwent my second round of chemo on Thursday-feeling like crap today! I'm normally quite a positive person but knowing that the chemo doesn't really do too much to fight my stubborn cells-I keep thinking that this really sucks! Again, hope you get some promising plan on Monday-please keep us posted :)

    Fran

  • Chrissom209
    Chrissom209 Member Posts: 6
    edited May 2015

    Hi Ladies, I am new to this forum. It seemed to take forever to find a forum with women like myself facing a recurrence. I was diagnosed the first time in 2011. I underwent a BMX followed my chemo and take tamoxifen daily. I honestly thought I was DONE! Was I ever wrong. Was diagnosed in March and had an axillary node dissection two weeks ago. Only ONE lymphnode involved out of the 17 the surgeon removed. Have to have port put in and start ACT chemo in two weeks. Scared out of my mind. I did ok on chemo the first time, but this is a more aggressive treatment. I am only 46 with two kids. Can't believe this is happening again

  • Alibeths
    Alibeths Member Posts: 656
    edited May 2015

    Chrissy, me too!!!! One node.

  • Chrissom209
    Chrissom209 Member Posts: 6
    edited May 2015

    Alibeths did you start the ACT chemo yet? Or did you already do it?

  • Alibeths
    Alibeths Member Posts: 656
    edited May 2015

    I did that in 2013. Now I'm on carbo taxotere. How did y find your lum

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

    Chrissom, I had a similar situation. I recurred after just over a year on Tamoxifen. I started AC chemo on March 31, and will start Taxol near the end of May. One more AC. It is doable. I hope you get a clear plan in place soon. Sorry you have to go throgh this again. I do find that I knew better how to prepare this time around. I am 44 with 3kids, so I get how daunting it all is.

  • Chrissom209
    Chrissom209 Member Posts: 6
    edited May 2015

    Hi KBeee, I am so sorry that you have to go through this again as well. It's encouraging to hear you tell me that it is doable. How have you been feeling? I start AC May 12th. Have to get my port first, which makes me shake at the thought of it. I didn't have one the first time around.

  • Chrissom209
    Chrissom209 Member Posts: 6
    edited May 2015

    Alibeths, I found my lump exactly like I found the first one, scratching my under arm. I knew it was bad news. Had an appointment with the oncologist and I could tell by the look on his face it wasn't going to be good. My whole life fell apart again in a week. Just trying to hold it together. Going to be the longest summer.

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

    Chrissom, I did TC the first time around and did not have a port then either. All things considered, I am tolerating AC very well. I tried to get myself in good shape beforehand, and repeat to myself every day that cancer is my enemy; chemo is my ally. I have made a point of walking every day. Days 4 and 5 I am tired and have a little nausea, but even then, I can get things done and function fine. Yesterday was day 5. I worked for 3 hours, did some laundry, went for a walk, and just did stuff around the house and chilled during the late afternoon and evening. Today was day 6. What a difference a day makes! I walked 3 miles when I woke up, went to church, weeded my flower gardens, planted my vegetable garden, and walked 4 more miles this afternoon. I still feel good, though I will chill on the couch this evening and rest. So......a day makes a huge difference. I am lucky to have done well and hope it continues. I hope you will do as well! I decided to assume I would do well until proven otherwise. I am sticking to it. Assume the same thing when you begin. It's a crap shoot, but some people do really well. Why shouldn't it be you???!!! I do set me phone alarm every 8 hours for the first 5 days to take anti-nausea meds, and it has worked. One more round of AC and I am not changing a thing in my routine


    I grew up in NJ!!!!

  • cjanet
    cjanet Member Posts: 328
    edited May 2015

    Karen so I wonder why they are not recommending chemo for me? Just kick me into menopause and start me on an aromatase inhibitor? Do you think I should explore more aggressive options like chemo?

    Chrissom, I live in NJ too. And scared out of my mind too. I have 2 young kids, ages 3 and 7.

  • cjanet
    cjanet Member Posts: 328
    edited May 2015

    Well maybe I answered my own question. My cancer did not respond very well to chemo the first time. I guess that's why I feel hopeless at times.

  • Tomboy
    Tomboy Member Posts: 3,945
    edited May 2015

    Bimmer, I am just wondering how many nodes your doctor thought was too many?

  • Alibeths
    Alibeths Member Posts: 656
    edited May 2015

    tomboy, where was your recurrence

  • Fran2014
    Fran2014 Member Posts: 140
    edited May 2015


    Chrissom & Alibeths- It's so crazy that we all had ONE damn node causing all this damn trouble! REALLY??? Praying that the neo-adjuvant chemo/Herceptin/Perjeta was more successful this time around. Now, not loving these rounds of  Cytoxan and 5-FU at all but only one more treatment in 3 weeks and I'm done-wahoo!!!!

    cjanet- I know how difficult it can be to get some very "direct" answers from the MOs sometimes-so frustrating! However, maybe the next time you see the MO ask specifically why no chemo or Herceptin? I am curious as well since I had to do the neo-adjuvant chemo prior to surgery and now again post surgery (but different drugs). Go figure?? Also, I'm scared too!!!!!

  • Chrissom209
    Chrissom209 Member Posts: 6
    edited May 2015

    KBeee, I think that's amazing!! You just saying that makes me feel like there is hope through this. I was very active before this and in my head, I plan on keeping active but I realize that might not be the reality. Still working on getting full range of motion in my arm from my surgery two weeks ago. I really think I'm just mad at myself because whatever strength I had before seems to be gone. But I'm sure once I'm in it, I can navigate better.

    Fran2014 - Yes, one pissed off lymphnode has caused all this. I would like to just scream when I think about it. I'm happy to hear you are nearing the end of treatment. Sending good thoughts your way.

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

    cjanet, Initially they were not going to do chemo on me this time either. I was really worried because my gut told me it was aggressive nad my gut has never been wrong. Once they fond the second tumor, they decided on chemo...and then they got my oncotype which came back high and that solidified any doubt. If your tumor is hormone receptor positive, you could ask them to do an oncotype to determine the benefit of chemo. Do not feel hopeless!

    Chrissom, Surgery zaps a ton of strength, but it will come back. I had reexcision, ANLD, and oophorectomy all at one and was exhausted for weeks, but it did pass...finally.

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