Calling all Trip Neg Stage 1a <6mm tumors

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  • SusanHG
    SusanHG Member Posts: 655
    edited March 2011

    Well, I questioned my grade 2 when the cancer institute redid my pathology.  My first pathology report said grade 3, and when they redid they called it a Grade 2.  My surgeon says that grade is very subjective.  In my case, they probably saw grade 1, grade 2, and grade 3 cells and decided to take the average at grade 2.  She also said not to worry with mine.  The tumor size and negative nodes say a lot more about what is going .on.  It seems when they are small, they are still in the beginning stages of growth and haven't toughened up yet.  Once they grow, then most likely would be grade 3.

    Susan

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  • BeckyL
    BeckyL Member Posts: 1
    edited April 2011

    Hi Susan

    I was diagnosed with triple negative IDC on February 10, 2011. Had lumpectomy on March 4, 2011. My oncologist wants me to do 4 rounds of chemo (one every 21 days) because of the triple negative diagnosis. Then after chemo, i will do 6 weeks of radiation. My lymph nodes were negative. My tumor was 1.2 cm. I will get a mediport on April 12, 2011 (on my 38th birthday). Sad about having to do chemo but I think its the right thing to do since I am triple negative. Good luck to all of my triple negative sisters going through this with me.

    Becky

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited April 2011

    Hi Becky - chemo is no fun but it's doable and you'll get through it.  I did Taxotere/Cytoxan x4 and finished in Feb. 2011.  Please feel free to send me a Private Message if you have any specific questions or would like some tips to help you get through it.  

    Susan - I like what you said in your post about beginning stages and not toughened up yet.  I sure hope that's what mine was like, too!

    I got a normal mammogram report on the good boob they were watching. I had the mammogram on March 22 and can't recall if I posted that everything was okay. So, if I'm repeating myself, I apologize.

    I hope everyone is doing well and take care! 

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  • SusanHG
    SusanHG Member Posts: 655
    edited April 2011

    Hi Sugar!

    I was just thinking about you in the car about a half hour ago!  I was going to check other threads to see if you mention your results and came home to find that you posted.  What a relief that must be for you. Congratulations and Great News! Love to hear good news.

    Hi Becky,

    Welcome to our little group.  Sorry you have to go through this, but I think you are doing the right thing.  I am not having chemo, but if I had to choose, the TCx4 is the one I'd have.  So much better than ACT!  I wish you good luck as you start your treatments.  We'll be here for you for anything you need.  And, happy birthday a little early.  Try to enjoy it, but I know it will be hard. 

    I am just getting over breast cellulitis from my re-excision (2nd surgery to get clear margins) and I have been as sick as a dog. I'm on strong antibiotics, and they kicked in very quickly.  I sat in the office on Friday (rather, laid down)  as they ran my white blood cell count.  If it had been any higher they would have admitted me!  To top it off, my incision broke open and has been draining constantly since Saturday! Yuck! But they said that it's good that it's draining, so I guess I believe them ;)  They still want to start radiation on Monday though, so soon I can start counting down the days until it's over.

    Take Care All,

    Susan

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  • katfinn
    katfinn Member Posts: 59
    edited April 2011

    Yes, I am also Grade 2 with a 1.3 cm tumor TN.  I had my lumpectomy and an trying to decide what type of chemo to have now.  One oncologist wants 4 cycles of T/C while my second opinion onc thinks we should try 4 cycles of A/C followed by another 4 cycles of the same with the addition of Taxol.  6 weeks of radiation would follow that. 

    Should I go for another opinion.  I was thinking of going to Strong or Roswell.  I also live in Rochester and have been to Pluta and Lipson so far.  I'm anxious to get started on my treatment (well not really...) but I don't have confidence as it looks like the docs just pull the treatments from the NCCN web site. But maybe that's what they all do.  I see many other types of chemo. I've done a lot of research but I'm not sure which way to go now.

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  • SusanHG
    SusanHG Member Posts: 655
    edited April 2011

    Hello katfinn! 

    I highly recommend Roswell, but I am from Buffalo and it is only a 10 minute drive.  To me, it makes sense to go to a cancer institute because they are actually the ones doing the research and they are very specialized as well.  When dealing with triple negative, I have found that because there is a smaller population of patients with triple negative, it helps to go to a cancer center because they would see more of them on a daily basis.  I don't know anything about Strong, but if it is a research hospital, it would make sense to try them.  The more opinions you get, the better.  I have had three, and I now feel much more confident about my own treatments.  If you don't mind making the drive, give Roswell at least a chance to give their opinion on your case.  I wish you the best of luck in your decsion making, and keep us posted on how you do!

    Susan

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  • SusanHG
    SusanHG Member Posts: 655
    edited April 2011

    Hi katfinn,

    I forgot to add to my last post:  Feel free to message me if you have any questions about Roswell, or if you are wondering what to do when you get there.   I am there every day at 9 am for radiation for he next 7 weeks and would be mor ethan happy to show you around.

    Susan

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  • brca1babe
    brca1babe Member Posts: 75
    edited April 2011

    Hello tn sisters,

    I thought I had DCIS, only to find 0.5cm IDC that's TN when I got a mastectomy ... I did bilateral mx, because I am BRCA1, on 4/7. Happy I did themx. Got recon and have to wait for that to heal.

    I haven't seenthe medical onc yet but I am leaning towards chemo, assuming he offers it.

    Seems like such small tumors are at the borderline of needing chemotherapy, and though chemotherapy scares me, I think I will go for it.

    Sigh.

    Brca1babe

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  • SusanHG
    SusanHG Member Posts: 655
    edited April 2011

    Welcome brca1babe!  So sorry to hear about your diagnosis and positive testing, but you came to the right place.  I know I have been on a few discussion boards and all the advice has been so helpful to me.  I just completed treatment #9 out of 37 radiation treatments, so enjoying the side effects right now, but nice to know it will be done eventually.  Good luck with all your treatment whatever you choose.  We'll be here for you if you need us!

    Susan

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  • SusanHG
    SusanHG Member Posts: 655
    edited April 2011

    I also wanted to add that I too originally was told I had DCIS, but my tumor was found when they did my first lumpectomy.  It seems that is the only way these small tumors are found.  they are not seen on mammogram or felt, but maybe there are exceptions out there. 

     It was a big downer when I got those first pathology results, but it was nice to know that my nodes were negative.  Silver linings are very important to me these days ;).

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited April 2011

    Brca1babe, welcome!

    Susan's right about how our's were found as mine was also found when a lumpectomy was done. My surgery was for Atypical Ductal Hyperplasia with a worst-case scenario of DCIS. The pathology revealed a small triple negative tumour.

    I just took a trip to Washington and flew out of Buffalo.  The women who sat next to me on the plane to DC was coming from an interview at Roswell Park. She's a radiation planner. She was very nervous to fly. I told her I wasn't nervous to fly but the radiation treatments made me more nervous. She was very nice. I hope she gets the job! 

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  • SusanHG
    SusanHG Member Posts: 655
    edited April 2011

    Sugar:  I wasn't nervous about radiation until the side effects started to happen.  I got a second infection half way throught the first week and felt like I hit a brick wall.  Crawled into bed and didn't get out for two days.  I'm better now, but scared of what's to come.  Crashed this morning after rads, but ate some salmon and pea soup and was completely rejuvenated.  Go figure!

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  • brca1babe
    brca1babe Member Posts: 75
    edited April 2011

    thanks for the replies!

    yes, finding a small TN tumor when you thought it would be DCIS ar ADH is a scary surprise!  I wonder if it grew during the time between the biopsy and the surgery (8 weeks), these things grow quickly.  I took some time to research immediate reconstruction options and I now feel foolish for spending time on that.  I do have nice reconstruction with free tram flap but chemo will probably mess up the healing now...

    sugar, susanHG, it sounds like you have opted for no chemo, right?

    at 0.5cm, I am right at the edge, so leaning towards it though chemo scares me horribly.  I think the thought of a brain met scares me more.  lousy options.

    brca1babe

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  • SusanHG
    SusanHG Member Posts: 655
    edited April 2011

    brca1babe:  I opted out of chemo at 3 mm.  I believe Sugar's was a little larger and she went through with it.  I was told, after getting 3 opinions and some better than others, that I would have a 1-2% chance of metastasis.  The risk of some of the irreversible side effects was bigger than this so my present onco (the one who I thought really knew her stuff) absolutely would not put me through chemo for such a small risk.  Actually my first onc, after hearing I was choosing not to do it, admitted she didn't feel comfortable giving it to me either.  I figure if I do everything I can to get myself healthy enough to not allow those cancer cells to grow if they are out there somewhere, then maybe I can fight it if I am that 1 out of 50.  I truly believe that the human body can heal itself it given the chance.  I found the best thing for me when going through those agonizing decisions was to talk to enough people, do enough research, and get enough opinions so that you feel confident when you finally do decide.  I had my wigs and scarves ordered and was all ready to go, but then went to some more appointments and realized that it was ok to opt out.

    I was also fully prepared to have BMX if my genetic testing came out positive (made an appointment with the PS to get the detasils out of the way).  I had decided that right away, no hesitation.  I too wonder whether my tumor grew as well.  I had a 5 mm. area of calcification on mammogram and the tumor was found right next to this area but my biopsy did not pick it up.

    Keep us posted on what you decide.  You will know when you are ready to make that final decision.

    Susan 

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited April 2011

    brca1babe, yes, my tumour was 3.5 mm (grade 3). I was offered chemo and opted to take it.  Had it not been offered to me, I likely wouldn't have pushed for it. I did Taxotere/Cytoxan x4. It wasn't too bad...nothing like I imagined. The hard part was losing my hair but it grew back pretty quickly. If you have any questions or want any tips if you choose to go through with it, don't hesitate to send me a PM.

    Susan, I like the odds your oncologist provided. Gives me some reassurance.  I really didn't get any stats given to me so I just went ahead with what was suggested. By the time I got my referral to the medical oncologist I was almost at the end of the 12-week window when chemo is most effective so I had to make a quick decision and didn't have time to get another opinion. I started chemo within a week of the initial consultation.

    I hope you're all having a nice weekend.  The weather here in Toronto is perfect today! 

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  • SusanHG
    SusanHG Member Posts: 655
    edited April 2011

    Weather here in Buffalo is perfect as well, Sugar :-)!

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  • katfinn
    katfinn Member Posts: 59
    edited April 2011

    Well I finally made a decision as I found a great onc on my third try.  A FISH test was ordered to make sure that I am a triple negative (took 2 weeks).  I will have 4 cycles of T/C.  I start on Monday 4/25.  After reading so many of your posts, I am feeling confident and ready for battle!

    I do have a few questions that you may be able to help me with.  I am concerned about neuropathy in my fingers and toes especially since I work on a computer all day.  I read that using ice bags on them really helps?  Is there anyone here who is months past treatments that used the ice and had good results?  I also read about those ice caps (was on Good Morning America) that are supposed to help with hair loss.  I don't think I will try that but I am considering icing my fingers and toes.  I saw that there is a forum dedicated to this so I'll check there too.

    If you think of any other good tips for Monday, let me know...

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited April 2011

    katfinn, I had TC and had no neuropathy whatsoever. I put my finger and toe nails on ice during the Taxotere infusion and didn't experience any problem with them discoloring or falling off. I will send you a PM wih some tips for chemo.

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  • brca1babe
    brca1babe Member Posts: 75
    edited April 2011

    sugar,

    I'd appreciate your chemo tips too, if you don't mind.  like I said, I haven't seen the med onc yet, but I am leaning towards it and I find researching and preparing myself helps me.

    thanks!

    brca1babe

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited July 2011

    Hi ladies,

    I saw my onc on Monday of this week for my six-month follow up.  He was pleased with how I'm doing.  I asked when/if I'd ever be out of the woods with this whole breast cancer thing.  He said TNBC is "front loaded" so the more time we go without any problems the better.  He also said most women survive this and not to lose sight of that. Overall it was a very positive meeting and I wanted to share the encouragement with all of you!

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  • brca1babe
    brca1babe Member Posts: 75
    edited July 2011

    Sugar,

    In your situation do you get any particular scans in follow up or just a visit withbthe doc?



    I had my first AC treatment we'd before last but unfortunately, got neutropenia and fever and am in the hospital. I feel 100% now on antibiotics but they are keeping me because my neutrophils were so low.



    I took neulasta so I am surprised with how much my counts dropped.



    Sugar, great to hear your good news.

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  • Sugar77
    Sugar77 Member Posts: 2,138
    edited July 2011

    braca1babe - sorry to hear about your neutropenia. That is surprising the Neulasta didn't help much. Sounds like you're in good hands right now and hopefully next Tx will be better.

    No, I don't get any scans. I get a clinical exam every three months (I alternate between my GP and Onc) and an annual mammogram. The standard of care here doesn't call for scans unless someone is symptomatic.

    I'm sending you healing vibes so you can head into the next round stronger than ever! 

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  • SusanHG
    SusanHG Member Posts: 655
    edited July 2011

    Dear Sugar,

    Great to hear about you check up.  I think you have a similar follow up to mine.  I saw my rad onc one month post-rads.  I see him again in Septmeber, then my mammogram is in November.  I then will get mammograms every 6 months intil the 5 year mark.

    Dear brca1babe,

    So sorry to hear about your chemo problems.  Hope you are able to get back on your feet soon and move on to the next treatment.  Keep us posted and we'll be thinking of you and sending you healing vibes.

    Susan

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  • brca1babe
    brca1babe Member Posts: 75
    edited July 2011

    Thanks for the healing vibes.

    They worked!

    Today my ANC was over 1000, up from only 300 yesterday.  Feel almost 100%!

    Got to go home and chemo should be on schedule Wed.

    Will  have to talk with my MO more about the neulasta and make sure we did it right (my DH gave it to me at home).

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  • SusanHG
    SusanHG Member Posts: 655
    edited July 2011

    So, so glad!!  Good luck with your next treatment.  Hope this one goes better for you.

    Susan

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2011

    Hi SusanHG



    I had a 3.4mm TN grade 3 inside a 2.3cm DCIS grade 3 ER/PR+ node neg (weird). I had hysterectomy, lumpectomy, SNB, 25 rounds of rads, and 5 boosts. Finished June 22. Onc did not recommend chemo. Did suggest Tamox for DCIS but since I had good margins and hysterectomy, I declined. I'm not a long term survivor, but I feel great now.

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  • SusanHG
    SusanHG Member Posts: 655
    edited July 2011

    Hi Debbie!

    Great to hear from you!  Your diagnosis is so similar to mine!  The only difference is that I was all trip neg.  I did not have chemo as well and had 26 full rads and 10 boosts.  It is good to know that there are others out there.  Do wish none of us had to be, but good to find others to share experiences with.  I am 1 1/2 months out from rads and feeling pretty well, except for my tendency to overexert the muscles in my rads area.  Also, I keep wanting to go have breast exams at whatever doctor will have me ;).  OB/GYN is this Friday, then I go back to rad onc in September.  My first mammogram is in November.  Please keep in touch with our small group of ladies!

    Susan

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  • jadeblue
    jadeblue Member Posts: 102
    edited August 2011

    Hello to fellow early-DXers. I had 3+ cm of high-grade DCIS with a very small amount of IBC (one cluster and a few individual cells "invading singly") mixed in. The oncologist said the total amount of IBC was less than 1/10 of one MILIMETER -- .01 cm -- and the staging is T1mic. It's ER-/PR- and the HER2 status is unknown (they were not able to isolate any invasive cells for testing). I had a BMX after an unsuccessful lumpectomy and did not have radiation or chemo (was told that the risks of chemo far outweighed potential benefits at my stage). I'm BRCA 1 and 2 neg, but with family history (mom). Overall I feel like one lucky unlucky girl, although sometimes it's still scary not knowing more about what was in there (onc. assumes it was TN but we can't be sure) and not having adjuvant options to prevent possible recurrence/mets.

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  • SusanHG
    SusanHG Member Posts: 655
    edited August 2011

    Hello Jade Blue and Welcome!  Too bad you have to be here, but glad to have you join us.  Wow! 1/10 of a millimeter.  That is pretty amazing.  You must be so glad you found it so early.  i keep saying the same thing, but at the same time, just wish I would have found mine while it was pure DCIS.  In my case, the calcifications seemed to show up once the cancer was turning high grade.  It seemed to be happily enjoying life in my breast for a while as low grade.  Keep in touch with us.  Must be nice to be done and not need rads.  Rads was tough for me and it has been hard recovering.  I have been trying to get my strength back with weight training and am constantly sore and tender, but hopefully it will be semi-normal with time.

    Take care,

    Susan

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  • jadeblue
    jadeblue Member Posts: 102
    edited August 2011

    Thanks, SusanHG. Yes, having IBC caught at such an early stage is a mixed blessing. On one hand, I never forget how lucky I am to have caught it; on the other, I came so, so close to not having it at all. My first pathologist didn't find it, in fact -- the second-opinion pathologist did, and the (tie-breaking) third-opinion pathologist agreed with the second. Makes me wonder how many DCIS women are walking around with a few stray cells of invasive cancer in there.  As my oncologist said, it takes a real eagle-eye to spot it.

    By the way, I tried a while back to start a similar thread. Here's the link to that: http://community.breastcancer.org/forum/108/topic/768427?page=1#idx_9

    But the best conversation of early-diagnosed women I've found at this site is on this forum: http://community.breastcancer.org/forum/111/topic/748406?page=11#idx_313. Although it's geared toward HER2 + microinvasion, it's useful for everyone with micro- or early BC. -Jade

    P.S. I had an anxious few weeks of waiting and wondering while they evaluated and re-evaluated my pathology slides. Given my "unfavorable" type, I decided I'd definitely want chemo for a tumor of 5+ mm, probably wouldn't for 2 - mm, and would have to weigh carefully what the oncologist  was telling me for tumors between 2-5 mm.

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