Recurrent or residual??

Options

Hello - I am not even a year out from neoadjuvant chemo and sx and I felt a lump in my armpit.  I had a biopsy and lo and behold cancer cells were present - er+ same as before and it is being sent out for her2.  I was told i had a complete pathological response - no active cancer cells in breast tissue (I had one large mass with 6 satellite masses) and 5 nodes removed were clean when at least 2 had been cancerous prior to chemo.  Maybe I should have had the dissection instead of sentinel node biopsy - I guess it doesn't matter now except maybe someone will make a different choice based on this info.  I have yet to talk to any docs about how to move forth - I don't even know if cancer is in lymph node or maybe some left over breast tissue that resides in axilla?   I don't think i can do same chemo as before right?  Even though I was brca negative I am seriously considering a bilateral salping-oopherectomy.  

Comments

  • inks
    inks Member Posts: 746
    edited March 2014

    So sorry about the news. If it is in the lymph node then I believe they would consider it locoregional recurrence or failure. I bet your MO will recommend a different hormonal treatment now since Tamoxifen did not do it's job. And you are right you can't do Adriamycin again (that's a good thing though, isn't it?). Sometimes people are able to do the radiation again depending on the area. Our diagnosis is so similar (I had total of 18 tumors ) but I am BRCA1+ so I will be having the oophorectomy in the fall. Hugs. You will be in my prayers.

  • Njlane
    Njlane Member Posts: 20
    edited March 2014

    Inks - the taxol was worse for me than the adriamycin lol - I am thinking the tamoxifen was doing it's job and keeping it somewhat at bay - or we will see after pet scan - if it is still just in axilla then it def grew slower than original cancers - but I had original cancer when I was pregnant so added hormones.  did you have dissection?

  • inks
    inks Member Posts: 746
    edited March 2014

    I will not be having the ALND but will get radiation to axilla, chest wall and supraclavicular. They say radiation is just as effective as ALND but with less chance of lymphedema. But even with radiation there is a chance of locoregional failure. I had LVI on top of everything. Perhaps they will give you a different medicine if you did not tolerate taxol well, maybe abraxane? I am hoping you get some of those super duper newer meds or see if there is a clinical study close by. I found my lump after I stopped breastfeeding, isn't it weird how the hormones make everything go whacko. I also wonder from what I've read that since we are ER+ but PR- if they should test your new tumor to see if the er receptors are functioning. Or test how you are metabolizing the tamoxifen. Did you get the Oncotype test? They would not too it for me because they would have had to test all the tumors and it would have cost too much. Sending you hugs and prayers for your scans!

  • Njlane
    Njlane Member Posts: 20
    edited March 2014

    Thanks for you hugs and prayers inks - I def need them!!  

  • ziggypop
    ziggypop Member Posts: 1,071
    edited March 2014

    Sending my hugs and prayers as well. I also had NA chemo & part way through I realized that the chemo might knock the cancer out of some lymph nodes but I worried that it might knock it out of some at the beginning of the chain & not in those further away. I asked and the onc said, "Oh they will take them all out." So I was not given a choice, but that may have been in part because they had already found positive A nodes by US. Anyway - there's never any point going back and second guessing. Please keep us updated as to how you are doing and what treatment plan you and the docs decide on. Many, many hugs. 

  • Njlane
    Njlane Member Posts: 20
    edited March 2014

    Well the results are in - there are breast cancer cells where I had biopsy - I had prepared myself for that and was all gung ho thinking sx and more chemo but pet results showed that the cancer has spread to my pleura - about a 1/4 of it and there is a small pleural effusion.  Holy crap.  I go to see onc wednesday but am having a difficult time with this.  I bounce up and down between super positive and slightly negative and then I worry if being negative feeds the cancer.  It isnt anywhere but the pleura and axilla and I cant find to much info online about it.  Thanks for listening - I am off to work :-)

  • inks
    inks Member Posts: 746
    edited March 2014

    Hugs! I am so bummed...I am hoping that the pleural effusion is some side effect from chemo or radiation. I hope you get your treatment all figured out on Wednesday. And please ask if there would be more promising treatments available if you would participate in a clinical trial. Negativity does not feed the cancer however it makes you and everybody around you even more miserable. Try to stick to being positive. But I know it's easier said than done. Please check in here and let us know how you are doing. Sending you hugs and prayers!

  • inks
    inks Member Posts: 746
    edited March 2014

    How did your appointment go? Did they figure out your treatment plan? And most importantly how are you holding up? 

  • encyclias
    encyclias Member Posts: 302
    edited March 2014

    Njlane, inks beat me to it. 

    Sending calming thoughts and hugs.

    Carol

  • Njlane
    Njlane Member Posts: 20
    edited April 2014

    So sorry that I haven't been back in forever!!  Things have been so hectic but here is the course of action determined: bilateral salping-oopherectomy DONE last week, Aromasin and Afinitor meds STARTED this week - follow-up PET in 4 months.  I have been researching extensively about EVERYTHING alternative therapy, supplements, diets, meditation, etc.  I sometimes can't believe how there are no answers out there for us.  I think that is the hardest thing for me - loss of control and now that I am on sx leave I have that much more time to focus on it.  I honestly have all these questions in my head: should I be going through my things, should I be canceling my retirement account so that I have the money now to do fun things with my hubby and kids, etc.  And i am not really down but i guess at least those things are things that I can control.  And I am a planner lol.  I am usually very positive - I think it is when I am in pain from the cancer that I get somewhat negative because I am that much more aware. 

  • pajim
    pajim Member Posts: 2,785
    edited April 2014

    Nijlane,  no need to make any life decisions right now.  Sit tight and get used to this whole idea.  THEN you can start crossing things off your bucket list.

    My onc told me at my first 'post-mets' appointment "don't give your stuff away".  A year and a half later I live a pretty typical life, and still work full-time.  Except for achy joints and monthly trips to the cancer center you'd never know I was a patient.  Many women feel the same as I do, others don't.  Take a look at the thread in the stage IV forum "Life does not end with a Stage IV diagnosis"

    http://community.breastcancer.org/forum/8/topic/818931?page=7#idx_185

    But I did make a bucket list and we're starting to cross things off it.  Russia this summer -- I've always wanted to go.  I did start contributing less to my 401k in order to fund the items on my list.  (No kids in the house so few responsibilities.)

    Give it four months or so and then make decisions about what's right for you.  Some women quit work, others continue, some start traveling, others stay home with the kids, etc., etc. 

    Here's hoping that A/A kicks your cancer to the curb for a good long while.

  • inks
    inks Member Posts: 746
    edited April 2014

    It's good to hear from you and to see that so much has already happened. Wishing you the best for your PET scan.

  • Njlane
    Njlane Member Posts: 20
    edited April 2014

    thank you pajim and inks - pulling my retirement would help with that bucket list lol!!   I totally understand what you are saying pajim I try to stay away from statistics and know every one is different - every cancer is different.   I hope you have an amazing time in Russia!!  Did you try to learn language?

  • KATRS
    KATRS Member Posts: 18
    edited April 2014

    Hi - I haven't been on BreastCancer.org in a while; I finished treatments mid-July of 2013 (LX, CHEMO, Rads, taking an AI). I kept getting an infection near the incision site which we were treating with antibiotics and all thinking was it was related to the rads. Finally had my port removed on 4/15 and my BS made a long, C / almond shaped  incision around my nipple at the same time.

    I had an abscess that she removed; as is the protocol for any BC patient everything was sent off for biopsy. Two days later I get the call that three, tiny cancel cells were found in the tissue!!! It appears to be the same profile as my first diagnosis but I won't have the full details until tomorrow AM and then Wednesday when I see my BS again.
    I don't know if it is a recurrence or residual - how the H#$$ could this stuff survive everything we have done to date! Now I am going back to surgery for a full-on MX; I had a positive Sentinel node in round 1  so I have asked my BS to take the next few nodes so we know what we are dealing with - Scans, etc discussions to come this week too - 
    I will speak with a PS Thursday but no recon at this time; I want to find out how much c is in the remaining breast because that will  determine next steps. I don't want the discomfort and chaos of recon while I am fighting 'the bitch' again!
    Confused, angry, a little scared, feeling untethered - again!

    Thanks for letting me get this out there -

  • Njlane
    Njlane Member Posts: 20
    edited April 2014

    KATRS - I hope your appointment went well and that some of your anxiety was eased :-) and I hear ya!! 

  • KATRS
    KATRS Member Posts: 18
    edited May 2014

    Well, here I am one month later! Both bone and PET/CT scans were clear. Had my MX last Wednesday, 5/14, and a new port installed. It was a very long day; three days, two night in hospital. The breast tissue removed was clear but the first node removed had micro-mets and the next two were clear. 

    I am scheduled to see the MO tomorrow afternoon and the BS on Wednesday afternoon. Drains are putting out pinkish/unclouded fluid - no pain meds since 36 hours post-surgery. I need to avoid over-researching residual/recurrent disease and survival rates because it is making me a bit anxious. I know chemo is in my near future, MO suggested Gemzar and Carboplatin in four rounds when we first met, I am not sure if that will change.

    I am preparing my list of questions: residual or recurrent; if MX first time out, would this have been avoided, current Grade and Stage, cancer markers were inaccurate so now what, survival rate, Arimidex again? (My joints feel 100% better since stopping the AI on April 20th per MO's instructions)

    I will post here since I haven't found another site for residual/recurrent breast cancer - Kathy

  • Beesie
    Beesie Member Posts: 12,240
    edited May 2014

    Isn't recurrent and residual the same thing?  

    The way that a recurrence develops is if there is some residual cancer, i.e. some cancer that is left in the breast or in the body after surgery and treatment is complete.  The residual cancer eventually leads to a recurrence.

    If there is no residual cancer, then any future cancer that develops is a new primary diagnosis, completely unrelated to the original/first diagnosis.

  • KATRS
    KATRS Member Posts: 18
    edited May 2014

    Bessie - I don't know for sure; since I am less than one year out from the end of radiation and I am just one year out from Chemo, to discover three separate cancer cells in the breast was a huge disappointment. My research has given me residual, recurrent, and new as possibilities. I think residual would be equal to cells that simply didn't die in round one, were able to survive. Recurrent would be the exact same BC, back again - not new since new would have a different profile. 
    Again, I don't know but I see my ONC this afternoon and hope to get some answers...

Categories