Stage III Cancer Survivors ...Five + Years and Out.

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  • Delvzy
    Delvzy Member Posts: 527
    edited August 2014

    congrats girls thank you for posting 

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  • maryland
    maryland Member Posts: 1,298
    edited August 2014

    Hi ladies, I'm a newly dx stage 3c and I have a question I thought maybe some of you could help me with. I had neoadjuvant chemo from March till end of June.., 6 rounds. I had
    my BMX and ALND on August 7th. My BS told my DH after surgery that she
    removed all of the nodes on each side of the nerve, which turned out to
    be 11. I was told by my BS's nurse that the path report said that 10 of
    the 11 nodes still had active cancer cells. So assuming she got all the
    nodes from levels 1 and 2, I am wondering if a PET scan would show
    involvement in the nodes in 3, 4 and from there. I've never had a PET
    scan but I'm thinking that's what I need from here. I see my BS next
    Monday and MO on Tuesday and once again trying to get all my facts
    first. Thanks ladies.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited August 2014

    Genny, 

    My advice would be to go to your hospital where you had the surgery, to the records dept. Ask for your path report and surgery notes. ( I did not see my pathology report until chemo was over, I did not know I was allowed to ask for it. ) 

    I do not understand the difference of having micro amounts of cancer cells, or how they look before chemo. That's the MO job....Being able to read the report will help. Certainly ask for a PET if you feel it is necessary. I had one after my lumpectomy, before chemo because of all the cancer in the axillary. 

    From what I understand, a PET scan will only pick up cancer that is a certain size. 

    That must be the advantage of chemo first, you know if it worked. Worse case scenario, your MO could order another chemo drug. Sounds horrible but worth it in the end if it is necessary.

    It all sucks....

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited August 2014

    Genny, Holeinone is correct--it will be easier to figure out what's going on if you have a copy of your pathology report.  Where I live, though, it's far easier to get a pathology report (and other reports, like labs, operative, ultrasound, scans) from the physician who ordered them.  You just call their office and ask for one to be mailed to you--they won't fax or email it, based on HIPAA concerns.  When I want hospital reports I have to pay a small amount for them and go through other annoying paperwork.

    I'm just making the assumption, based on your status, that radiation treatments will begin soon for you.  Almost assuredly, they'll direct treatments to your axilla to zap any malignant "nits" that might be lurking about. 

    If you've never been scanned it might be a good idea now, to confirm staging and be certain what you're dealing with.  By all means, ask your MO about it. 

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  • maryland
    maryland Member Posts: 1,298
    edited August 2014

    Hi Holeinone and sblizabeth, I think we all go back a little ways, I remember talking to both of you when I began all this chit. I already know I'll be getting rads, I met with the RO back when I started chemo. My BS will give me the report when I see her on Monday. I go to the PS tomorrow and hopefully get my drains out but I don't know if he'll have the path reports. I have decided to switch MO's and I go to the new one next Tuesday, I'm just getting antsy and wish I could read it for myself now. I suppose I could call the MO's office in the morning and see if they could mail it to me. She works in all different offices so maybe if she's in the one close to my house tomorrow I could go get it. I'm thinking(hoping) that they'll put me on AI's instead of more chemo. That was the plan anyway. I don't know if I could handle more chemo and from what I've read it's not quite as successful with grade 1 because they are not fast multiplying cells. I was just surprised to hear that so many nodes were still active. I had a CT scan, bone scan and MRI all at time of dx and there was no sign of mets. I had a positive  lymph node biopsy the same day as my breast biopsy so I knew there was at least some node involvement. The 10 positive nodes puts me at stage 3c, I just wonder how many if any active nodes are left in my body and I was thinking PET scan might be the best at telling me that. I don't know that any of it would change my tx plan, I'd just like to know. Thanks ladies for your input, you know how it is, we want answers today! And yes, it does all suck.

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  • lexi4
    lexi4 Member Posts: 1,074
    edited September 2014


    Hello Stage III Sisters!

     

    I just past my 9 year cancerversary. Aug 30, 2005 I had the cancerous breast removed. I started chemo in Sept and finished up my Herceptin txs in Nov 2006. For the most part I feel really pretty good! I try to exercise several days a week. My diet could be better, but I love my carbs :) 

    I look forward to reading updates on my stage III sisters and celebrating together. I couldn't get through my tx and recovery after tx without all of you.

     

    Love and Prayers,

    Lexi

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  • TaniaE
    TaniaE Member Posts: 92
    edited September 2014

    Hi Lexi, congratulations on your 9 years cancerversary and thanks for dropping in and giving hope and support to some of us newbies. 

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  • wintersocks
    wintersocks Member Posts: 922
    edited September 2014

    wonderful news Lexi, us not so newbies are pleased to hear this too!

    It's been a tough week.  

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  • Delvzy
    Delvzy Member Posts: 527
    edited September 2014

    congratulations lexi I celebrate my 6 years on Monday I now run 5 km twice a week and try to walk 4 times per week. I try to eat well but could do better. I go easy on myself nowadays 

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  • maryland
    maryland Member Posts: 1,298
    edited September 2014

    Congrats Lexi on 9 yrs and Delzvy on 6 yrs!! So happy for you both, I'm going for my PET scan todayto look for mets since my 4 months of chemo were not effective. I'm nervous and hoping I get my results tomorrow and don't have to wait the weekend. You ladies and so many like you give me hope for the future. Thanks for sharing.

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  • lkc
    lkc Member Posts: 1,203
    edited September 2014

    Hi Lexi, Congats on the HUGE milestone.  I was abit ahead of you dxed, May 2005, and living large evry single day. I am beyond happy to see alot us out there for 2003,2004 and 2005 living beyond BC.

    Genny , PETS do not always pick up lymph mets. None of mine ( 12 ) showed up.

    Anyway, please get a copy of your path, and discuss tx options with your new doctor. You have a window of  opportunity to get rid of the beast before it  goes any further.

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  • peacestrength
    peacestrength Member Posts: 690
    edited September 2014

    Excellent Lexi and Delzvy!!!!!

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  • maryland
    maryland Member Posts: 1,298
    edited September 2014

    Ikc, Any advice for me? I had 6 rounds of A/C, then BMX and ALND with 10/11 nodes positive, all still with active CA, including the breast. The PET is to help R/O with rads and look for mets. I'll be going on AI's as well. I had MRI, CT and bone scan in Feb, all neg except for a few axillary nodes, but now we're looking to see if it spread while I was getting chemo since path report says it was ineffective. I don't know of anything else to ask for. And congrats on your huge milestone, that's great!

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  • hopefour
    hopefour Member Posts: 459
    edited September 2014

    Lexi4 and Ikc..congrats on 9 years....thanks for celebrating with us!! Delvzy congrats on 6 years! I know in the early years I came to this thread and read over and over all the stories of LIVING while praying I would do the same. Sharing your stories gives such hope to all of us, but especially our newbies that are in the mist of fresh shock and fear!! Thank you ,Alwayshope for starting this thread with the heart to serve your BC sisters...it has blessed us all!!

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  • Bec65
    Bec65 Member Posts: 312
    edited September 2014

    Ikc, Lexi4, Delvzy...thank you SOOOOOO much for sharing your milestones!  Congratulations!

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  • TaniaE
    TaniaE Member Posts: 92
    edited September 2014

    Thank you so much ladies for coming here and letting us know that all is going well for you many years out and congratulations to each and every one of you. It means so much to us newly diagnosed. Genny, the reason why chemo probably wasn't very effective on your type of cancer, from what I've learnt from some of the ladies on this forum is that ILC grade 1 or grade 2 is a very slow growing type of cancer and chemo only really works well on cells that are faster multiplying. They say that hormonal therapy is more effective for ILC than chemo. I just wonder if there are any ladies out there that also had neo adjuvant chemo before surgery with ILC and can tap in and tell us what their experiences were. Hi Bec, looks like you and I have a similar signature.

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  • maryland
    maryland Member Posts: 1,298
    edited September 2014

    Thanks TaniaE, I did know that about grade 1, I just didn't prepare myself for it being ineffective and then hearing that I needed to repeat  the mets workup to make sure it didn't spread in the 6 months I was getting chemo and surgery. That was a kick in the butt. I could have skipped the torture of chemo, gotten on the AI's and been much better off. Oh well, no crystal ball. Hoping to get my PET results today, cross your fingers for me..please.. It does make me wonder how many get adjuvant tx and never know whether or not the chemo works. If I had known what I know now I would have insisted on a sensitivity test first. Seems maybe they should do that for grade 1 CA's.

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  • maryland
    maryland Member Posts: 1,298
    edited September 2014

    Hi all, just wanted to share, PET was all clear! WooHoo!!, RO called me at 7 tonight, so nice I didn't have to wait the weekend. Rads to start week after next, then AI's... thanks everyone, have a great weekend!

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited September 2014

    YEEHA Genny, great news.....

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  • Bec65
    Bec65 Member Posts: 312
    edited September 2014

    I know we're off the thread topic, but WOO HOO, Genny!

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  • TaniaE
    TaniaE Member Posts: 92
    edited September 2014

    Great news Genny.

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited September 2014

    Great news, Genny.  And cheers for your RO, who had the insight and compassion to call you after hours on a Friday!

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  • lkc
    lkc Member Posts: 1,203
    edited September 2014

    Genny Congrats on the fabulous news! You have slow  growing  BC which is actually  good . Talk to your Doc. My advice is go aggressive with Rads and  ER suppression Rxs.

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  • maryannecb
    maryannecb Member Posts: 1,453
    edited September 2014

    Hi Lexie and Linda, I knew I'd find you here, my 2005 stage 3 sisters.It is 9 years for me on the 22nd of this month. I too  am well..no signs of recurrence! I had a lumpectomy 2 weeks ago on my "good " breast and just got results that it was just a radial scar...phew was I relieved.

    My son who was 12 at diagnosis just turned 21, my middle son has started a Masters in Physics and my eldest is in her 3rd year of med school. My husband and I are working towards an early retirement so we can enjoy each day..I think we can manage it in less than 5 years hopefully. 

    I know how fortunate I am to have reached my 9th year of survivorship and over the years have met many wonderful survivors some who have not been so lucky. To all those continuing to struggle may your loved ones hold you close. To all who have passed we cherish your memory. 

    Fists up!

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  • Bec65
    Bec65 Member Posts: 312
    edited September 2014

    Congratulations, Maryanne!  What great milestones for your whole family.  Thank you for sharing with us.

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  • maryland
    maryland Member Posts: 1,298
    edited September 2014

    maryannecb, what a nice post. So happy for you, hope to see you here when I hit my 5 years! Thanks, I saw my 8 month old granddaughter and I so want to watch her grow up, your post gives me so much hope.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited September 2014

    maryannecb, what a wonderful post ! Congrats to you & your DH for raising good students, great kids...

    It is nice to read about success stories....I am also glad you included those you knew that lost there struggle. Thanks for taking the time to post & I hope to see ya post on your 10 th anniversary.....it will be my 2nd...

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  • TaniaE
    TaniaE Member Posts: 92
    edited September 2014

    Congratulations Maryanne and thanks for coming back and telling us your story.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited September 2014

    Maryanne - congratulations and best wishes to you!!  Celebrating with you!

    Thank you for the HOPE!

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  • ann273
    ann273 Member Posts: 209
    edited September 2014

    I have an aunt who had Stage 3 breast cancer (she had positive nodes and does not remember how many) in early 2000 at the age of 34. She was hormone positive and took tamoxifen for 5 years. She is still cancer free and claims to have never thought about the disease post treatment. Just talked to her recently and thought Id post her store here.

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