Treatment for Triple Negative and very small tumor

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  • Huskerkkc
    Huskerkkc Member Posts: 536
    edited March 2011

    Susan,

    Port is being placed Monday and chemo starts Thursday, March 17. We have so much flu going around school, my husband thinks he has a sinus infection, that I am afraid to see anyone! One kindergarten class has 9 kids gone-half the class!

    Don't need any more delays; it is time to kick butt. Filling up all my hand sanitizers and just realized I should just put a little one in my pocket. I'm trying to lose weight too. Have lost 12 pounds since diagnosis, mostly from stress and fear, but the antibiotic I continue to take post=pneumonia has really dampened my appetite. So trying to take advantage of that while it lasts. I fear those pounds will jump back in once the steroids show up.

    Enough fighting. Time to KEEP CALM & CARRY ON.

  • SusanHG
    SusanHG Member Posts: 655
    edited March 2011

    Huskerkkc: Sounds like you're ready, just need to get away from all those viruses! Isn't the hardest part about breast cancer "keeping calm and carrying on"?  The fear is always there that if you do start to calm down and move on, it will just stab you in the back yet again...that's why I love the quote so much because it is the hardest thing to do, yet the most important because life does go on.

    Keep strong and good luck as you start your treatments.  We'll be here for any venting you need to get out along the way or for even sharing any good days too.

    Susan

  • MsBliss
    MsBliss Member Posts: 536
    edited March 2011

    Huskerkkc, sorry I took so long to answer....I didn't get a notice that you posted.  Anyway, from what I understand,  all stage 1 dx are negative for nodes and generally for lymphvascular invasion as well.  1A is under .5 cm, 1B is .5 to 1.0, and 1C is 1cm to 1.9cm.

  • cc4npg
    cc4npg Member Posts: 764
    edited May 2011

    I know this thread is a bit old, but I wanted to comment in case anyone else out there ever looks for info on such a small sized TN tumor.  Mine was 3 mm, grade 2, all taken at stereotactic biopsy.  Had tissue retested to make sure how large it was and saw two oncs, both of whom recommended chemo because we're dealing with TN AND because I was 43.  Age really plays a factor into it.  So anyway, I had 4 rounds of TC.  No lymphovascular invasion and no nodes.  We believe it had just become invasive.  The only thing left at mx was a small amount of DCIS.  I think this would be a good thread to try to keep alive.  Wish others would comment about their treatment who had such small tumors.  The line seems to be drawn at 5 mm... many people under that choose not to do chemo... but the thing is, we don't know which of us needs it in order not to have a recurrence and personally I would have never forgiven myself if I hadn't thrown everything I had at it and then had a recurrence.  We have one shot at killing it....

  • Angelight
    Angelight Member Posts: 4
    edited May 2011

    Hi ladies

    My tumor was STAGE 1 Grade 3. IDC.. lump =7mm ... 6 clean nodes & margins but triple Neg although im questioning this with my BN on Tuesday as when I asked about the progesterone (excuse spelling) result not being on my form she said we dont test for that as there is no drug we can give you if it was positive ? REALLY Ive heard different ? Im 44 btw

    I have an appointment to see an oncologist Monday as i was "boarderline" as to wether id benefit from chemo or not Ive done alot of research myself & spoke to several ladies of same grade & stage ?some done chemo & some just radiotherapy .. Yes like everyone the thought of chemo puts shudders down my spine & Im not willing to do it if it only *MIGHT* inprove my chances alot of women in my possition were only given 1 % 2 % or 3% benefit which I find very disapointing Frownconsidering all the risks & side plus after affects that chemo does. But my other quarm I have at the moment is this other one my hospital dont test for as I know some ladies with TNBC who do have Tomoxifen ? so this part is still bugging me. 

    Ive also stopped sugar where possible/ proccessed foods & taking several suppliments (especally ones that ar meant to help prevent reacurances) since I was diagnosed only eat fresh fruits/ berries & veg .. lots fish rices pastas potatoes organic chicken some red meats but have to be organic I make my own sauses..lots of wholefood nuts, drink green tea lots fresh berry juices theres was not alot to me  anyway but have lost weight as  no longer stuff lots of bisuits crisps between meals & loved my butter lol ..I only have goats milk & goat cheese rarely/ natural organic yogurts  I wanted to do all I can for myself while waiting to decide on treatments.

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

    I just joined and have the same question concerning very small TN tumor. I posted a separate thread before I saw this one. Once I saw all the valuable information here, I am very grateful to all of you for your postings. I was advised against chemotherapy and will accept that since benefit is very minimal. I am three weeks into Tomotherapy and starting to get a few rashes similar to heat rash. Hopefully I will finish in three weeks without further side effects. After that close monitoring.

  • fmakj
    fmakj Member Posts: 1,278
    edited May 2011

    Hi Debbie

    Just wanted to let you know that I am coming up on my 2 year anniversary of diagnosis (June 1st).  I only received radiation and am doing quite well.  I look back and can't believe the whirlwind of events from the summer of '09.  It was around tx #23 of rads that I had some skin breakdown and the only advice I can give if it happens to you is to let the area "air".  I would lie in bed topless for about an hour each day minimum to do this.  I also had a cream prescribed for this area.  Within 2-3 weeks after my last tx, I was amazed by how quickly I healed!   I see my rads onc every 6 months for at least 5 years.

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

    Hi ladies - I agree with cc4npg....it would be very helpful to newcomers if we can keep this thread alive.  I know it's meant a lot to me connecting with others with a similar diagnosis.  I hope everone is having a nice evening!

  • cc4npg
    cc4npg Member Posts: 764
    edited May 2011

    This thread will be interesting for me to watch.  I want to know how many other tiny triple neg's there are out there, what they end up having, and how they do.  It would be wonderful to hear from those who are a few years out, and I know they're out there...

  • luvmy2kids
    luvmy2kids Member Posts: 65
    edited May 2011

    I just had surgery on Friday and am facing the same dilemma. I have a bizarre situation though. I had 1 tumor that was 5mm and a second that was 7mm (located very close to each other).  My surgeon had a radioactive seed implanted in me the day before surgery and when she went in the following day the 5mm tumor was gone....  The only present tumor was the 7mm.  She said I had clear margins and the preliminary reports said no lymph node involvement.  She says chemo is not necessary, however, I think the medical oncologist and radiologist both want me to have chemo because I am only 40 years old.  I am Triple Negative and do not have my BRCA results yet. My initial biopsy gave me a grade 2...  Any thoughts--I am very scared of chemo, but if I have to do it I will. I have 2 children--a 7 year old daughter and a 13 year old son..

  • kll22
    kll22 Member Posts: 124
    edited May 2011

    I'm so glad this forum is here!  Trying to keep my TN status in focus and some of the other areas have been shaking my confidence!  I, too, had surgery last week and just found out that tumor size was 1.5 cm (about what was expected) and no cancer in nodes! (Gotta love my BS for calling on a Sunday morning of a holday weekend to share path results!)  Chemo scares me, too, especially the effect it could have on my kids, age 14 and 10.  We're trying so hard to keep things normal for them. Still waiting for my BRCA status but am thinking chemo is likely given my age, 44.

  • Luah
    Luah Member Posts: 1,541
    edited May 2011

    kll22: The hard thing is, things won't be normal for your kids. And that's okay. They will surprise you with their resilience and support... and they will live through a life-lesson and be stronger for it.  All the best.

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

    kII22 - Luah is right...it will be different for your kids. I was diagnosed at 45 years old and my daughter turned 10 the day before I had my first chemo infusion.  Pretty bizarre I was in the very same hospital exactly 10 years before giving birth.  We were very honest with her and she adjusted really well. I took her to the wig shop to see how "real" the wigs looked before I even started treatment. I also brought her to see the chemo room.  When I was going through rads, she came in one day and watched as they set me up. All in all, she did really well and her grades in school improved a lot that year, too. And, even though it was a tough time, I look back with fond memories of the good days and time I spent with my family while I was on medical leave from work. If you have any questions, please don't hesitate to send me a PM.

  • cc4npg
    cc4npg Member Posts: 764
    edited May 2011

    The kids will be fine... and I agree, although you can try your best to make things as normal as possible, cancer is not one of lifes normal bumps in the road.  Nothing about it is normal.  We just get through it.

    Chemo scared me... until the first infusion.  Much like everything else about cancer, the anxiety leading up to the "unknown" event was worse than the event.  After the first infusion, I knew what to expect and I was fine.  It's not as bad as it sounds.  And cancer scares me WAY worse than chemo.  My 3 mm tumor was well below the line for chemo, but many onc's are doing away with the old thinking that there is a safe size with triple neg tumors.  The fact is, it's a more aggressive cancer that responds better than the others to chemo which is why they encourage even tiny triple neg tumor people to have chemo, especially those of us who are younger.  I was 43 and my child was only 2 when I was dx.  I knew the chemo might make me feel bad, and I knew we might have some days during the week that I wouldn't feel like doing much with my child, but I was eager to trade those few days for my life.  Losing hair was very hard.. mine was long.  That was the worst thing I remember.  The other side effects fade after it's done.. kinda like having a baby.  You forget the pain and morning sickness after the baby is here, or it fades to the point where you can't quite place how bad you really felt.  This is the best comparison I have to how chemo was for me... it was no walk in the park, but I got through it and the worst thing I remember was losing my hair.

  • SusanHG
    SusanHG Member Posts: 655
    edited June 2011

    Hi Everyone!  I just noticed this thread has been active lately.  Welcome to all the newcomers and good luck as you go about making all of your decisions and start treatment.  Can't give advice on chemo, since I was discouraged from doing it, but wish you good luck all the same to those of you starting.

     I am about 2 weeks post-rads and am doing marvelous!  Breast is almost healed, although shrinking everyday right before my eyes.  Who knows?  Maybe all those 36c before pregnancy bras that I've been saving for some reason will fit me when all is said and done.  I am still on my strict diet regimen and continue to lose weight.  Still trying to get my fat under 20 % but I guess this will be a life-long challenge.   Starting back exercising (Pilates 2x per week, walking every day) and starting to feel like a new woman, even better than before BC.  Cancer sucks, but sometimes good can come out of it, like being healthier than ever for instance!  Who knows?  Maybe I was destined for a heart attack and now I won't have it!  Anyway,  glad to see our thread is active and lots of ladies are around my age (42).  Would be great to chat with you in the future.

    Oh one more thing...I have a blog (http://wingchairtraveler.blogspot.com) and have written some posts about breast cancer.  I am able to monitor all who search for small tumors and usually see what size they are ex. triple negative tumor 3 mm. when they come to my blog.  There are many of us out there also wondering what to do.  I think with the emphasis on mammograms, more women are lucky enough to find thse tumors small.  I think I will start directing them over to our thread ;)

    Take care everyone and glad to meet the newbies!

    Susan 

  • SusanHG
    SusanHG Member Posts: 655
    edited June 2011

    I forgot to add that rads was not easy for me, at least at the beginning.  I came down with two bouts of cellulitis, the second started the first week of rads.  So, my breast was beet red from the first week, i had inflammation of the chest muscles for the first 3 weeks, and eventually I had a black armpit and very, very dark breast with some small blisters.  I count myself fortunate that my skin never opened up, but it looked bad.  Right now, most of the dead skin has peeled off and am almost back to normal.  So glad that's over and I can start my life!

  • Lynne925
    Lynne925 Member Posts: 5
    edited June 2011

    I am wonding the same thing, have recurrence trip neg bc, small invasive tumor .8cm but larger 2.2 DCIS and cancer was in lymph node.  anyone out there with similar diagnosis - can you tell me what kind of chemo??

  • brca1babe
    brca1babe Member Posts: 75
    edited June 2011

    hi friends,

    small TN tumors and chemo appears to be an area of controversy.  my MO said that they have less understanding of such small tumors, and now with intensified screening, they are seeing more.  They are also pushing the boundaries of when to offer chemo - it used to be none unless 1cm or more, now they tend to offer for 0.6-1cm and for some at 0.5cm or less- the cutoffs are/have been somewhat arbitrary.

    I had a 0.5cm IDC TN at Mx (I am BRCA1+ and thought I had DCIS) and researched the chemo question a lot and got opinions.  I have opted for chemo and start tomorrow!  I am 44 btw.

    Some of the numbers I found:  example -  6-8% risk of death at 10 yrs versus 2.5-3% with chemo... thats a reduction in risk of death by half with chemo, but you can see the numbers are small.  Some studies show recurrence up to 15% (not death) with St 1A TN tumors...but TN is actually a heterogenous group and is only beginning to be adequately characterized and studied, in fact there are some TNs that are more agressive than others and we don't know which group we are in with the current clincal practices.

    my particular pathology had all the "bad" signs - grade 3, TN, necrotic etc (though thankfully LN was neg).  this also influenced me to go for chemo... I am having DD AC.

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

    brca1babe - good luck with chemo tomorrow. Where did you get the stats? Those numbers after chemo look pretty good relatively speaking. Thanks for sharing.

    Mine tumour had "bad signs", too...grade 3, comedo necrosis, calcifications, etc. 

  • cc4npg
    cc4npg Member Posts: 764
    edited February 2012

    Bumping to keep alive

  • Lmflynn
    Lmflynn Member Posts: 373
    edited May 2012

    Bumping and adding to.... I had a 2mm IDC TN tumor, went thru lumpectomy and rads... 6 months later 3mm tumor same area...both times node negative .... No one really knows why it came back so quickly except alot of DCIS too and some studies show rads not as effective....either way I struggled with decision for chemo ...BMX, and TC x 4. Looking back very happy I went through chemo ....

  • RLCURLEE
    RLCURLEE Member Posts: 5
    edited May 2012

    Sugar77 your story is almost like mine.  I too am 45 and have one daughter 11 years old.  Just got married.  Found out about the BC a month before wedding.  My husband stands by my side and encourages me every day.

  • vmk
    vmk Member Posts: 17
    edited May 2012

    I had an 8mm TN IDC tumor with high nuclear grade, comedonecrosis, etc, plus multifocal DCIS and had a UMX with negative sentinal lymph nodes.  My BS said I did not need to see a MO but that she would follow up with me every 6 months.  She did not recommend Chemo.  I am 66 and in good health otherwise.  After reading some of your posts, I wonder if I should see a MO just in case there is something else I should do to make sure this cancer doesn't return. 

  • Luah
    Luah Member Posts: 1,541
    edited May 2012

    Can't hurt to check in with an MO, right? If it were me, I'd want at least one MO opinion if only to put my mind at ease. There's some evidence that chemo, if it's to be given, should be given within 12 weeks of surgery.... (which is not say it's not effective at all if given a litttle later.)  

  • tillthen
    tillthen Member Posts: 7
    edited May 2012

    thanks for the info i've been searching for. Very helpful in making the decision about chemo reading all the posting which give me hope again.

    At the age of 39 yrs I survived breast cancer in March of 1986 , modified mastectomy - back then if no node involvment no treatment was given. Then in July 2005 - fallopian tube , stage 3B with intensive chemo IP and IV for 6 months. Now April 2012 breast cancer again stage 1B, very small 1.1 cm - with no nodes but classified a Triple Negative.

  • kellycbk
    kellycbk Member Posts: 31
    edited May 2012

    Hello-I'm new to this and have been searching for as much info on mastasis for those of us TN. had a scare last week with a "spot" on my chest xray. it has made me look for more info and have discovered this site.

    I finished my chemo in Sept. 2010 after my surgeon and onc. both agreed there wasn't any choice in chemo. was MISERABLE but i made it. I was stage 2b with a 2.2 cm and1/13nodes. tested positive for the BRACA 1 gene.

    want to learn more so I can help my daughters be informed when they are older- ages 6 an 14.

  • vmk
    vmk Member Posts: 17
    edited June 2012

    Thank you, Luah.  I saw my BS Friday and she referred me to a MO when I reminded her I was TN.  It is 6 weeks since my MX.

  • Louise1072
    Louise1072 Member Posts: 2
    edited July 2012

    New here.  I was diagnosed last year.  August mammogram left no doubt in my breast specialist's mind, and her convictions were confirmed by biopsy at the beginning of September.  In all the tests and imaging that followed, I was found to have "something" on one ovary.  At age 62, I'd forgotten I even had ovaries!  GYN oncologist recommended a total hysterectomy even though she was sure the cystic mass was going to be benign, citing stats about the possibility of needing additional surgery in the future.  So...first a total vaginal hysterectomy, and then, a week later, the lumpectomy.  By the end of October, I was uterus/ovary/invasive cancer free, and one breast was a little smaller and much more attractive than its healthy counterpart.  Pathology showed that the invasive disease was so small (2mm) that the biopsy in September had removed all of it, leaving just 3 mm of ductal CIS, with 4cm of clean margins all the way around it.  The sentinel node was negative.   A second pathology opinion (done under the table through "connections") suggested that the invasive disease might have been closer to only 1mm. 

    After several months of hearing "all we have to treat this form of cancer is chemo", with my wig at the ready, I learned that because the invasive disease was so small, I did not meet the criteria for chemo.  I was floored, and felt that I had been left marooned up the well-known creek in a small row boat...with no paddle.   I moved on to the standard 33 radiation treatments, which were annoying but tolerable, and left me feeling tired toward the end of them; six weeks later I had my former energy level back.  (Too bad...I was hoping for something better than what I started with.  Wink)  

    The "no chemo" edict still gnaws at me a little, though my daughter, who is - get this -  a breast cancer nurse practitioner (don't you love farce?) tells me that the best breast cancer oncologist at her facility agrees completely with my oncologist's determination.  She said that chemo that would have been "used up" this time would be available to and effective for me in the future if I ever need it.  My oncolologist released me from his care, calling me "so low risk" that it would be of no medical importance for him to follow me.  And I admitted to him that an online cancer calculator had suggested that the chances over the next 15 years that I would die from this cancer episode were 2-3%; there's a 23 % chance that something else will get me during those years. I'm hoping it's a gelato overdose. I continue to be followed closely - perhaps too closely - by my breast specialist.  

     Has anyone else been told "Yes, it's triple negative and no, you can't have chemo?"

     

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited July 2012

    Hi Louise, yes, there are other ladies in a similar situation to you who did not do chemo.  I was in a gray area and it was optional for me and your's was smaller so rest assured you're not alone. I did TC x4. I was 45 at diagnosis so age may have also been why I was offered chemo. Wow, and I sure like those low odds from the calculator so thanks for sharing. All the best.

  • SusanHG
    SusanHG Member Posts: 655
    edited July 2012

    Louise,

    My tumor was 3 mm. and I was advised against chemo for the very same reasons your doctor gave.  She said it would be overkill and would use up my chemo option.  Also, she emphasized that it isn't always necessary to join the "chemo camp".  She gets it a lot from people that they feel shorted out by not doing chemo.  She gave me the distal recurrence rate of 1-2%.  I keep repeating these numbers to myself whenever I get scared (which is often).  Chemo would only reduce these odds by half, so there would still be a risk, and there there would still be worry(the hardest part about cancer).  I have the attitude now that I will just go about with my life and live it to the fullest.  If something bad happens, I don't want to feel that I was hanging around waiting for it to happen.

    Take care and keep us posted.  Nice to hear about another non-chemo case.  Makes me feel better :-).

    Susan 

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