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Positive nodes with long term survival

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  • seacretgardn
    seacretgardn Member Posts: 18
    edited December 2011
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    Ladies thank you for your posts. I am quite new here, just had first DD AC last week and still having some SEs.



    I am careful who I share my node+ info with after hearing reactions from professionals. or should I say un-professionals!



    My bs removed 9 nodes, of which 8 were positive. When I asked about removing more she said the latest data supports not removing additional nodes, as the treatment will take care if any more were affected and the risk of damage to the arm increased.



    Anyone else told this? Or should I be really concerned now?



    Thank you for listening.

    Laura

  • kathleen1966
    kathleen1966 Member Posts: 68
    edited December 2011
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    Well I think the new studies regarding node removal apply to few nodes.  As in three or under. When I had my surgery, they removed all my nodes after finding four positive (and when I say all, I mean the axillary tail, they can't removed ALL The nodes).  Right afterwards the study came out regarding leaving the nodes in and a success rate equal to removing them by radiating the area.  BUT....I then read that it is still recommended to remove them if there are more than three....and this was stated in the study.  Perhaps they have more information now. 

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited December 2011
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    calamtykel:

    thanks! I did find another surgeon and I see him on the 30th of this month. Hoping he is experienced in DIEP.  I have read there are only about 40 docs who can do this in the whole country! The odds that one of them is in Akron, Ohio is slim. But I am close enough to Cleveland Clinic so I can try to get in there too. Love this site it is very encouraging!!

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited December 2011
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    Here are two stories that I hang on to when I am feeling hopeless:

    My best friend is a homehealth aid, the gal she works for has a daughter who had 19 pos nodes and is coming up on her 5 year NED!! Also another good friend of mine who had a moving sale over the summer met a lady who had on a masectomy sleeve and they got to talking. This woman was dx 10 years ago with 27 pos nods, had second bought with bc in other breast but was caught early and treated. Her only issue is some swelling still in her arm. Other than that she has been NED. Those two ladies give me hope!! Especially after going to the cancermath website, wow what a BUMMER!! Don't go there. Maybe I did not do it right, which is what I hope.

    I struggle everyday to have hope that I will make it another 5 or 10 years. This thing hit me like a ton of bricks!! Had a lump, went to dr, she said mmm... let's do bisopsy, nope can't tell let's do antoher one, looks like barely stage 1, do surgery give you implants your done. Yeah, boob job couretesty of my ins. company. BUT when I woke up from surgery, no boobs and looks of anxiety on everyone's faces.  Hopsital booted me out after 30 min of waking up and then my surgeon went away fro 2 weeks!!  The thing is once appt she checked under my arm and felt something but said "oh I don't think that's anything" A month later I have surgery. WTF? I am so angry that it is hard for me to stay positive. When I am positive and I forget about this and start living again it hits me and I'm like "Oh yea, I am fighting for my life".   This disease sucks!! Sorry all I am just in a bad mood today! Feel like going home and crying and watching Lifetime  I would like to jump ahead a few years to see what is going to happen.  This site is the only thing that keeps me from being really really depressed that my lifespan has been cut short.

  • many
    many Member Posts: 57
    edited January 2013
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    Bump for everyone to read this thread

  • saraj257
    saraj257 Member Posts: 1
    edited December 2011
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    I was diagnosed with stage 3b breast cancer in April of 1998,   3 of 5 nodes were positive.  I was postmenapausal when I was diagnosed but according to the surgeon I has it as least 10 years prior to diagnosis.  I wasn't very diligent about my health.  I underwent chemo and radiation and have had no recurrence.  I am a survivor of 11 years.  What got me through the initial diagnosis was chatting on Glenna's Garden which is no longer in existance.  That saved my life.  I was so frightened and these wonderful people kept me from going nuts.  That's why I'm back.  I want to be there for others who are going through what I went through. 

  • Whatashocker3
    Whatashocker3 Member Posts: 54
    edited December 2011
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    Thanks Sara for sharing that I to try to find a positive out there whereby you can communicate with others in similar situations. It was inspiring to me to know people like you are out there. Today I shaved my head and by 14 year old helped me because my poor husband just wasn't ready. He has been wonderful but it was a big step and I appreciated his honesty. I had previously clipped it but it was falling out like crazy and the prickles were painful. I remember last Christmas at this time as we have a family picture as out home page and he makes me sad to compare the difference.



    If this is a short detour in a long destination like it has been for you than I know I can

    DO IT. Thank you for the inspiration. Merry Christmas.

  • Kimwith6
    Kimwith6 Member Posts: 1
    edited December 2011
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    Hi, I know its not 5+ years, but I am IIIc with 11/33 nodes, and I am now 3 years out! I had just finished chemo, had started radiation on Dec. 15, and I had to have my gallbladder out the week after Christmas of 2008. During the gb surgery, they found a mass in my liver and did a biopsy. What a stressful few days the wait was! But it was benign, and I only missed one day of radiation, got right back on schedule. All PET scans and other tests have been negative for the past 3 years, yippee!

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited December 2011
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    SO the week after Christmas and I can't help but think how many more I will get to enjoy with my family. I sometimes forget what I am going through and then it hits me like a brick wall and I think to that I can't get complacent about it, I can't ever forget, not for a minute. Somehow I feel like that will prevent it from coming back. I know it won't and I know whether we have few or many pos nodes it can raise its nasty head again. I wake up and night, that is the worst, and think about it. Why me? We all ask ourselves that. I keep getting light headed when I bend down and think o crap it's back already. I see my onc January 20, right before my birthday. Not much to tell at this point, not even a year out but he is reassuring and I love his staff.  I hope we all see many more holidays. I hope that thinking about BC all the time goes away and it gets easier. I am so afraid that this is going to end badly for me and I will waste away in a hospice bed. My sister says I am too mean to let this get me, I hope she is right. Coming to this site and reading about all of you, well it helps me get through the day. You are all so wonderful and brave!! I hope I can share my 5 year story on this board.

  • jennyboog
    jennyboog Member Posts: 23
    edited December 2011
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    Cheryl, I think we've all done the "Christmas thought", it happens at b-day's, kids to school, basically any special occasion, it never ends.  Most of us have never dealt with our own mortality until this happened, it's no wonder we think those thoughts.   I was going through chemo last Christmas and wondered if I'd be here this year but here I am and I wondered the samething for next year.  I wondered if I would take my oldest to her first day of kindergarten but I did this past Sept. and I could go on & on.  I understand exactly what you mean, I forget sometimes too...let my guard down.  I thought I wanted to be ready & prepared if the beast returned.  But I'll never be ready and it will hurt no matter how prepared I think I am.  Maybe I'm in denial but I just got tired of having BC on the brain constantly.  By the way, I still get lightheaded when I bend over or turn too fast.  It must be all we've been through and the meds.  See you in 5 yrs girl! :) 

  • Rainenz
    Rainenz Member Posts: 21
    edited December 2011
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    Hi All Hope you have all had a great Christmas.  I celebrated 15 years since my 1st dx with 6 pos nodes this last Christmas Eve and 5 1/2 years since my 2nd dx with 29 pos nodes. In this time I have seen my two boys complete school, find lovely partners and produce 3 beautiful grandchildren, so feel realluy blessed to still be here enjoying life and my growing family.

  • jennyboog
    jennyboog Member Posts: 23
    edited December 2011
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    Congratulations Rainenz and thanks for taking the time to post,  We need stories like your's to show us it can be done.

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited December 2011
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    Rainenz, thanks so much for posting. I had a mini meltdown last night. I hate this so much!! But I love hearing positive stories!! Thank you. You made my day!!

  • anneflorida
    anneflorida Member Posts: 4
    edited December 2011
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    I have just had quarterly visit with oncologist and my tumor markers are normal, mammogram normal, bone density normal and will have PET scan in April.  I feel good with lots of energy and find I don't think constantly of the cancer,  Have blessed New Year!

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited December 2011
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    Good for you anne! I was just on another thread and a lady was pretty negative about being stage 3. She said it is going to kill her and well that just got my stomach hurting!! I hope I am here for at least anotgher 20 years. Now I am back to thinking about death.  We all have a good chance of surviving for awhile don't we????

  • Momine
    Momine Member Posts: 2,845
    edited December 2011
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    Ooops, sorry ckgrayoh, I think that was me. I did not mean that it would kill me tomorrow or anything. Just that it is the most likely to be the cause of my eventual death.

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited December 2011
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    No worries Momine. It's just hard to see but I am hoping that we will all see the 10 year mark if not longer!!  I agree this bc has shortened our life expectancy but if we can all get at least 10-15 more years, well that would be great!! I am hoping in the 5 years there will be some super drug out for us gals!!!

  • ductal
    ductal Member Posts: 10
    edited January 2012
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    Cheryl, hang in there.  It is so difficult but ir helps to stay interesred and stay interesting.  We have to make a choice maybe every 3 minutes to be positive:)  I was diagnosed 2 1/2 years ago, 2 diff, lobular sites, 30/31 nodes positive.  It was horrific so venting is ok!  May we all have a healthy new year...we have cancer but we are not cancer. One tumor in armpit was size of grapefruit and surprised surgeon.  My oncologist told me to pray for a miracle.  I quit listening to the negatives and I don't let them order me around anymore, I can't be there for an 8a. appt, etc. Empower yourself, listen to doc you trust, you might be posting on this website on 10 years!!!I plan to be here to read it.  Best wishes to you all, these stories were great.  No 2 journeys are alike, but this helps:)

  • mylife2day
    mylife2day Member Posts: 1
    edited January 2012
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    I am so glad to find this site. I was diagnosed on 2/15/11 and it became a whirlwind of dr appts and labs. I have never been to the dr so much. My tumor was 5cm with 10/15 nodes positive. ER+. No mets at the time. I worked the entire time going through chemo and radiation. Most days I keep a smile on my face because I refuse to let cancer control me. I have a 14yo and I must be strong for her. But she and my husband have been an absolute joy and inspiration to me. I dont know how I would have made it without the two of them. And you women on this site, have also inspired me to understand that I am not alone and I have a place to come and vent and also to encourage others. Thanks for all the inspiring stories!!!

  • mballpa
    mballpa Member Posts: 1
    edited January 2012
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    I don't know about the long term survival yet. But I am rowing in the same boat. I had 3.5cm tumor with 5/29 nodes +. Did six months chemo, 28 radiation treatments, and now a prophylactic Hysterectomy for good measure. I have been taking Tamoxifen during radiation but will be.switching to arimidex. There are at least 7 women here where I live that have been diagnosed last year, all of is under 45. Three at 39, including me. I was Grade 3, ER/ PR + and Her2 -.

  • many
    many Member Posts: 57
    edited January 2013
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    Bump

  • Jennyruth
    Jennyruth Member Posts: 2
    edited January 2012
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    I am so glad to have found this Forum. I have checked some other Forums where people who had no lymph node involvement were really struggling --- and, with that being the case, where does that leave me with my lymph node involvement?  I have always made every effort to be strong and to maintain a positive attitude throughout my life. Of course, my diagnosis presented a challenge. However, after reading only some of the posts on this forum, my positive attitude is now reinforced. Many thanks for sharing!!! Through the support and prayers of family and friends, I am confident that the Good Lord will bring me through this storm to sunny days ahead.

  • liveforkids
    liveforkids Member Posts: 1
    edited January 2012
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    Hi, did you have your ovaries removed as well?  I did 6 months of chemo, had a mastectomy in Oct and completed 25 radiation treatments in Dec.  Next step is to have my ovaries removed.  I asked my MO if I should remove my uterus as well and he said it's not necessary but when I met with my OBGYN I had a feeling from her that she is all for it  but it's up to me to make the decision. I'm 39 years old and started taking tamoxifen after my mastectomy.  I've heard scary things about tamoxifen that's why I'm considering the prophylatic hysterectomy.  Anyone else facing a similar issue?  I would love to hear your thoughts/views.

  • jennyboog
    jennyboog Member Posts: 23
    edited January 2012
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    I did a oophr in June of last year.  I didn't remove my uterus because my ob/gyn didn't feel it was a necessity with my age (35).  I guess if you remove the uterus the bladder drops, he said it would help support my bladder & keep it in place.  It was my decision and I wanted it all while they were in there but decided not to since the bladder thingy.  I got enough going on without ramdomly p*ssing myself :)  Something you might want to ask your dr about.  It was a simple surgery though, I had no problems at all, just a little sore for a few days.  Good luck. 

  • karen1956
    karen1956 Member Posts: 4,534
    edited January 2012
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    live...had my ovaries removed....uterus is intack...no association between BC and uteran cancer so no reason to take uterus out unless having issues.....at my age, stress incontinence is a big enough issue without adding to it!!! as Jenny said, ooph was a relatively easy surgery....day surgery..mine was done laprascopically...fatigue was the biggest issue...I took a week off work...

  • CherylinOhio
    CherylinOhio Member Posts: 149
    edited January 2012
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    Am also thinking of having those buggers taken out.  I'm with the rest of you, don't need to have pee pants at any given time so uterus stays. Does anyone how long to wait until doc can do a horomone level check? Both my sister and mom hit menopause at 40, I will be 41 next week. Wondering if already in meno if ovaries could stay? 

  • AsiaYM
    AsiaYM Member Posts: 1,388
    edited January 2012
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    Ran into a lady who is 25 years breast cancer survivor, had surgery, chemo and radiation.  It just made my day.

  • dionne
    dionne Member Posts: 2
    edited January 2012
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    I don't know how many nodes of mine were positive because I had chemo before surgery (and none were positive after chemo), but I found my cancer because I felt a lump in my armpit, so there was significant lymph node involvement.  My other scans showed it hadn't spread elsewhere, and I always took/take comfort in what my doctor said at the time (about 5 years ago) - that the cancer seemed very happy to stay and grow in my lymph nodes, rather than spread anywhere else.

  • dltnhm
    dltnhm Member Posts: 420
    edited January 2012
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    Glad to find this thread this evening. Had a left mastectomy with immediate DIEP reconstruction but the sentinel node biopsy turned into an axillary dissection. I am still awaiting the final pathology report ... but mainly concerned about keeping the lymphedema away.  My husband read all the discharge instructions at the hospital and (even though I had attempted to educated him about how very serious that can be) was blown away by all the precautions. He said to the nurse, "So basically we need to lock her arm up in a vault." I could tell that he really 'got it' then. Thanks to everyone who is sharing about the number of nodes and your stories or stories of others. I'll know my lymph node number probably tomorrow ... ah the waiting.

  • fredntan
    fredntan Member Posts: 237
    edited January 2012
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    my MO said I would one day die of BC. I'm going to prove him wrong. I'll probably get hit by car since I'm taking up running/fast walking when this is over. I walk 2.4 miles day in neighborhood and have 6 weeks of taxol left. I was walking yest and got scared by car going by. had my headphones on. gotta watch those cars. 

    now to get my lazy butt out in the cold. grrrr hate the cold