Calling all TNs

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Comments

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2013

    That sounds like such a small variation from 32 to 37.  I think if you hadn't fasted, then that's probably what the difference is, especially if you fasted for the exact same test last year.  My Onc looks for a pattern of continuance, rather than a one time fluctuation. Also, were your labs done last year before mx, but after chemo?  Because after chemo, it can time for things to appear normal.  

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    Geez inspirad I hope you are right because my CA153 three months ago was 51 and this new result is 60. It's really frecking me out. I wish to god it would go down.

    Annie

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2013

    Hi Cocker!

    When I responded to Melissa that it didn't seem like much of a difference, that was because her ranges were still below the considered 'high range' according to her post, and I thought liver and kidney values can fluctuate somewhat without alarm.  With tumor markers, I've also heard that they look for trends, but I don't know how much of a variation they allow for a tumor marker either.  I think your Oncologist will tell you when it's time to worry a little. Did he offer any information besides the number?

  • Hopex3
    Hopex3 Member Posts: 397
    edited March 2013

    Ok...I'm a dummy..what is a CA153? Some kind of a tumor marker? Should I be having this as well?

  • adagio
    adagio Member Posts: 982
    edited March 2013

    To all triple negatives - I just read on another post that few triple negatives ever have a lumpectomy - this is news to me - now I am concerned because I had a lumpectomy and it was never suggested to me that I have a mastectomy. 

    I'd like to know how many women have had a lumpectomy? Feedback would be appreciated!!

  • Keke713
    Keke713 Member Posts: 91
    edited March 2013

    Hey ladies. Im 27yrs old and was diagnosed on jan 23 with Idc grade 3 stage 1... I had a bilateral mastectomy on the 1st of this month. I've understood everything pretty well up until this point....I had my first post op appointment with my bs today and was told that my lymph nodes were clear which os a good thing, but my tumor was triple negative for hormone receptors. I think I was going to have to recive chemo treatments no matter what due to my age, but I was kinda holding out hope the might just be able to skip chemo and start hormone treatments..but since I'm TN, does this mean I will need chemo for sure? And what types and how many treatments would you ladies think I'd need?? I had an appointment with an oncologist on Thursday but I try to find out most of everything before seek f the drs so I know what do expect In a way

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited April 2014

    I saw that other post, and I believe many were posting in reply to that, asking for additional information or a retraction, as they felt it was not the case.  On these boards, I think it's split pretty evenly, lx and mastectomy.  I seem to run across many profiles and it seems to be about the same.

    I had a BMX.  My BS basically said that most women have an idea what they want before they even see him, and I told him I wanted a BMX, and I talked to him about why I wanted to do that.  At the meeting we did not know I was Triple Negative yet.

    It's stressful to wonder if we got the right treatment, the strongest treatment, etc.  Just remember, your medical teams knows all about you, your pathology report and I'm sure they gave you the recommended protocol for your situation. 

    Hope this helps!  

  • melissa119
    melissa119 Member Posts: 172
    edited March 2013

    Inspired.... He did say not to worry cause the increase was so slight. And last time he did labs was before chemo and this one was 3 months after treatment. But I did hear back from my mo nurse. She said my one liver enzyme did increase slightly but all other, apparantly three other indicators were the same so they look for everything to go up to further cause concern. And increase to them would be to double or triple not only 4 units so I guess I feel better now. Ok. Next hurdle is exchange surgery next Tuesday.

    Thanks again!

    Melissa

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2013

    That's great news!  I have surgery on Wednesday.  I have saline implants, but they rotated around, so he is putting in new ones for me and cleaning up scar tissue.  

  • Hopex3
    Hopex3 Member Posts: 397
    edited March 2013

    Hi Keke, my Bs told me I didn't have a choice and because I was TN, then I would have to have chemo. It's the only treatment besides surgery. No hormone treatments work on TN. I had chemo first. 4 weeks of AC and four weeks of taxol. Then I had a double masectomy. My mom and sister both had breast cancer, not TN, so I wasn't taking any chances. Because I had a BMX, I did not have radiation. Your BS and onc will know what to do and will work together with you to come up with the right plan for you! Good luck to you and so sorry your having to go through this! Not fair!

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2013

    Hope:  It is a breast cancer tumor marker.  Some Oncologists do them, some don't, because of the false positives and having to put the patient through the anguish of waiting.  Some feel that if something is wrong, it will hit other labs as well, without having to look at a specific tumor marker.  Some women have recurrences, with normal markers, and some have elevated markers with no recurrence.  

  • Hopex3
    Hopex3 Member Posts: 397
    edited March 2013

    Thanks Inspired...I'm just not going to worry about it (too much). I will have my three month check ups and just go on with my life. If something is out of the ordinary, then I will be alerted whether its bloodwork or my body talking to me. I just need to remain positive and try to be more healthy. It's all I can do! I'm just so thankful for all of you by my side!

  • gillyone
    gillyone Member Posts: 1,727
    edited March 2013

    Adagio, I posted on that thread also. There are tons of us who have had lumpectomies. I found Alny's comments unacceptable. For those who haven't seen it, she said TNs never had lumpectomies. Luah and I both called her on this. Adagio, your reaction to her comments are what I find so worrying, because YOU are now concerned you didn't get the right treatment. You did get appropriate treatment.

  • Keke713
    Keke713 Member Posts: 91
    edited March 2013

    Hope, does it matter the order? Will they still make me do chemo even after I've had my mastectomy? I had my bilateral mastectomy on the 1st..I notice you said you had your chemo before yor surgery. I know your not a doctor but I'm hair trying to prepare myself for whatever plan they will have for me on Thursday..thank you! And how well did you take the chemo treatments? How did you feel?

  • OBXK
    OBXK Member Posts: 791
    edited March 2013

    Keke - welcome! I am so sorry you have to join the club - but we'll all be here for you for advice, hand holding or just listening to you vent in a safe place.

    It seems the current protocol is as explained to you above. 4 rounds of A/C combo then 4 rounds of taxol or taxotere. I am not sure how they are space out, but it may be every 21 days. 24 hours after treatment, you may have a Neulasta shot, which helps keep your white blood cell count up.

    Some doctors do surgery before chemo and some do it after, so they can scan you to see if the tumor had a good response.



    I think there is a page on this site, that yells you about all the chemo drugs. You may find that helpful.



    If you have any questions just ask, and once you start chemo you may want to join another thread that will match you up with women starting chemo on the same month.



    Wishing you all the best.



    Annie - so glad you were able to rest and get some things done around the house. Sure hope dear, sweet Chloe doesn't find a way to sink her teeth into the new table.







  • 5thSib
    5thSib Member Posts: 141
    edited March 2013

    Adagio, I had LX. I was told "cure " rate was the same either way if I also had radiation. However we did not know I was TN at the time. I don't know if that would have changed their recommendation but I might have considered a MX a little more.



    Keke, so sorry about your diagnosis. I was told small lump, no nodes -- surgery, rads, and possibly pill for 5 years. It was a shock to find a week after surgery that the node they took was positive and then a week later to learn that I was TN -- and life changed. Now I felt sick. Now I had to have chemo. Now I would lose my hair. Now I really had cancer. Thank God, there are a lot of warriors here that are helping me through this fight and we are here for you too. I was told i would feel bettrt once I had seen the oncologist and had a plan in place, and that was true. God bless you

  • Titan
    Titan Member Posts: 2,956
    edited March 2013

    Wow...I hate it when someone posts on here FALSE comments...sheesh...this is why you shouldn't believe every thing you read...here or anywhere....

    I had a lx and chemo/rads...I'm very happy that I had a lx .....

    If your oncologists says it is ok...its probalby ok...

    Who is this Alny chick anyway?

  • DorisMarie
    DorisMarie Member Posts: 129
    edited March 2013

    Morning ya'll..been awhile but I do read every day..hopped in to answer the question about lx..I had lx..after some research that showed just as effective as mx..on the chemo before/after surgery question..most times with larger tumors they want them to shrink down..mine was 1.4 cm..there is no difference in size in the breasts after lx for me..got clear margins..rads (internal) ..think chemo is a given with triple neg..finished up end of October..got hair!! trying to curl..about 2 1/2 to three inches long..feeling better..still a wee bit tired..chemo is not a walk in the park..but it is doable..the fear was worse than the actual..believe it or not..I'm sure the rest of these old timers will tell you the same..so all you newbies hang in there..there is another side to this journey..and you will get there..love to all..

  • SherylB
    SherylB Member Posts: 450
    edited March 2013

    DorMac,

    Thanks for the letter it really created some great visuals in my mind. LMAO.

    Sheryl

  • SherylB
    SherylB Member Posts: 450
    edited March 2013

    adagio,

    I had a lumpectomy due to small size of tumor and no history of cancer in my family. My nodes are neg, and my margins were clear. Almost done with chemo and will have 30 rads treatments. My MO and RO both feel that this plan is as good as a mastectomy. Only time will tell.

    Sheryl

  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2013

    Oh Almy, don't leave our boards.  It is just a misunderstanding, and you posted what you have conviction about.  it opened up a great discussion, and the more we talk about things, the more we can gain insight and information.  

  • Hopex3
    Hopex3 Member Posts: 397
    edited March 2013

    Keke,  My chemo went well for me.  I did not get sick with either.  Some people tolerate the AC and not the taxol and vise versa.  I was able to tolerate the AC and the taxol kicked my butt.  I had leg pains and neuropathy with the taxol.  Still have the neuropathy but its doable.  Im not going to suger coat it, chemo is not fun.  But I tried to make it a positive experience as much as I could.  I had complete response with the chemo, meaning they could not find any evidence of the cancer.  I couldn't have asked for a better outcome. I also worked the whole time through.  Today, I'm still tired.  I try to listen to my body and rest when I can.  But I am walking 2 miles a day and am seeing a cancer nutrionist tomorrow.  You will have to ask your surgeon or oncologist regarding if they are going to do chemo on you.  My sister just had a lumpectomy and nothing else.  And that was 12 years ago.  She had a smaller tumor than I plus our mom had not had breast cancer yet.  So, like I said because of both my sister and mom had BC, that is why I chose the BMX.  My doctor said it would not change the outcome if I had a lumpectomy or masectomy but it made me feel better.  Hope this helps answers some of your questions....Hugs to you!

  • Luah
    Luah Member Posts: 1,541
    edited March 2013

    logoff aka almy: I'm sorry you feel a need to sign off, but with respect, I will continue to challenge your statement that "in common medical practice lumpectomies are generally not recommended for TNBC even in early stages." And in case you are checking in, thank-you for sharing those links. Hard facts are always appreciated! (I am, admittedly, a research junkie.)

    I do wonder, in one of those studies you cited, whether those were medically required re-excisions because if so, that suggests pre-existing increased risk i.e. not good candidates for Lx to start with for other reasons perhaps... Also, the study fails to consider whole treatment: Lx is virtually always performed with radiation, which seems to have its own protective qualities for TN (see below). So while some residual disease may have been found in that sample, it by no means proves any altered/worsened  outcome.   

    When you consider studies like these:  http://link.springer.com/article/10.1245/s10434-011-1920-z and http://jco.ascopubs.org/content/early/2011/06/09/JCO.2010.33.4714 it is obvious that there is plenty of recent evidence to support an alternate view to yours. 

    Finally, I would like to clarify, in case there was some misunderstanding, what was most alarming about your post was your assertion that BSs do not recommend Lx for TN (anymore). That is simply not the case, which hundreds of women on these boards clearly demonstrate... not to mention surgical practice guidelines. And yes, I think it does breed anxiety when women in the boards are second-guessing their BS' recommendations, based on an opinion, not fact.

    The point gilly and I and others were making is that BSs make recommendations based on the factors and risks presented by individual patients....  many/most do not consider TN in and of itself to be salient, and I have indicated several links to show that. You're entitled to think they're wrong for that (based on a few pieces of research), but not to say that those (thousands of?) doctors don't exist.       

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    I wasn't given a choice at the time on my treatment. It was recommended that I have a mastectomy.  I presume (and I may be wrong)  that it was because my tumour was not a lump but rather a long line of little white  dots on the x-ray which were invasive. When they showed me on the x-ray what they were like they had to give me a magnifying glass because they were so small and I presumed from that (quite wrongly) that it was in the early stages however, it turned out to be Grade 3, Stage 3a, TN

    A lumpectomy did not come up as a recommendation for me to have in the discussion.  I think once you are given all the facts it becomes your choice on what treatment you decide on but I am sure  we would all take the recommendation of our oncologists and surgeons into account.

    At the time it seemed that in a lot of other country's lumpectomy was the preference and that concerned me for a while, and here in NZ not so but that  seems to have evened out now.  

    I feel like I got the correct treatment for me and the only thing I would change would be,  I wish I had had the other breast off at the time (a) because I'm not keen on the prosthesis and (b) to try and prevent cancer in the other breast, although there is no clear indication written anywhere that cancer spreads to the other breast.

    I believe whatever you choose in combination with your surgeons recommendation is the right course of action for you.

  • placid44
    placid44 Member Posts: 497
    edited March 2013

    Keke,



    For chemo, I was given 4 rounds of adriamyacin cytoxin, delivered every two weeks, followed by 12 rounds of taxol, delivered every week. I was a later stage (2) and had one lymph node involved. For my individual situation, I was told chemo was required and had to start "right away." I had a hard time with AC, an easier time with taxol.



    I am still glad I did chemo as even with these "big guns" my tumor did not entirely go away...it did shrink by 78 percent, and the proliferation (something called ki67) dropped from 70 percent to 17. That's supposed to be a good sign. I chose aggressive treatment (eg radiation even though I had bilateral mastectomy), but that is just me.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2013

    DorMac great joke. Thank you for making me laugh.

  • placid44
    placid44 Member Posts: 497
    edited March 2013

    Adagio,



    I initially posted the below to the wrong thread. The study I mention is only one study. As has been mentioned, oncologists and breast surgeons give their patients a wide variety of recommendations as to treatment...both overall and specific to the individual women/their situations. I lean toward more aggressive treatment because I have (had?) a very nasty tumor. And my intuition told me to.



    I had a BMX, and I am getting radiation. (I chose prophylactic mastectomy on the non-cancer side.) According to the quote below, for early stage, triple negative women under age 50, having the unaffected breast removed improves survival.



    "Only limited data are available on the survival impact of mastectomy contralateral to a unilateral breast cancer.  Analysis of women included in the Surveillance, Epidemiology, and End Results (SEER) database treated with mastectomy for a unilateral breast cancer during 1998-2002 showed that contralateral mastectomy performed at the time of treatment of a unilateral cancer was associated with a reduction in breast cancer-specific mortality only in the population of young women (18-49 years of age) with stage I/II, ER-negative breast cancer (hazard ratio 0.64; 95% CI, 0.44-0.94; P = .025)."  Source:  National Comprehensive Cancer Network, NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines), Breast Cancer, Version 2.2012, NCCN.org, page MS-12.



    I know that this doesn't answer about mastectomy vs. lumpectomy + radiation. My doctors told me that mastectomy has a lower risk of LOCAL recurrence, compared with lumpectomy, although it does not improve survival. For me, that was enough.

  • slv58
    slv58 Member Posts: 1,216
    edited March 2013

    Just want to thank everyone for their opinions and research as I have to make a decision on which surgery, although my surgeon has suggested LX for me. Either choice will include radiation. It is always going to be a choice filled with emotion, we all only hope that our choice will increase our survival rates. I just wish one choice would feel more correct for me,but at this point I am 50/50.

  • melissa119
    melissa119 Member Posts: 172
    edited March 2013

    Just want to chime in. My BS gave me the option if lx or mx. She said it was totally up to me and that she could def do a lx and was confident she would get clear margins. But I chose otherwise. Just my choice for maybe a little more piece of mind :-)

  • slv58
    slv58 Member Posts: 1,216
    edited March 2013

    Just curious, is the piece of mind that there wouldn't be a local recurrence? From what my surgeon said, there is only a 2% difference between mx and lx,so I'm sort of confused as to why some choose mx, is it the 2% difference? At this point I'm more nervous about recovery from the more major surgery of mx, but understand that if good margins arent achieved with lx, more surgery would be needed-quite possibly mx. Do either surgery have better outcomes for mets? It's all so overwhelming at times, it would be so much easier if there was more clear cut research and we didn't have to make life and death decisions.

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