Big decision to make...

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belleb
belleb Member Posts: 170
edited June 2014 in Just Diagnosed

Today's appointment went pretty well. Incision has healed nicely from
last week's biopsy surgery and we got the rest of the results back from the
pathology report. My cancer is Triple Negative. I had originally
thought that I was leaning towards a bilateral mastectomy, but as time
is now of the essence when it comes to starting chemo, I've been
recommended to go the more conservative route for now (lumpectomy with
radiation and lymph node dissection) so that my body can heal quicker
and chemo can start sooner. After that surgery (where they will also
install a port for my chemotherapy infusions) if all goes well, I should
be able to start chemo within 2 weeks. If I choose the mastectomy route
(either single or double), it would add some time on to my recovery and
delay the chemo. During the months of chemo, I can have genetic
counseling done to see if I am positive for the BRCA gene(s), and that
can help me decide if I want to move forward and have a bilateral
mastectomy in the future as a preventative measure. Does this sound like a reasonable course of action at this stage? Any opinions or advice?

So what I know so far: 2.1 cm tumor, grade 3, stage unknown so far, Triple Negative.

Comments

  • bevin
    bevin Member Posts: 1,902
    edited January 2014

    Hi there. I think you decision is a wise one. As my doctor told me, I could always have more surgery. I am not triple negative but have a 2.1 cm tumor. I opted for less surgery and lumpectomy as I didnt want more invasive surgery with more risk of complications and possible infection. I decided I could always go back and do more if I wanted.  I never did. My tumor was at the 6pm location and as such I had a decent cosmetic outcome and although my breast is visibly smaller I am happy with my decision. Good luck in making yours. I know its hard to decide. If it helps this article may help you with the decision :

    http://www.medicalnewstoday.com/articles/255497.ph...

    "Over the whole study period, women who had lumpectomy plus radiation were more likely to survive breast cancer than women who had  mastectomy.

    In fact for any age or cancer type, lumpectomy plus radiation wa

    Over the whole study period, women who had lumpectomy plus radiation were more likely to survive breast cancer than women who had  mastectomy.

    In fact for any age or cancer type, lumpectomy plus radiation was linked to a better survival rate than mastectomy.s linked to a better survival rate than mastectomy."

     

    Good luck to you

  • kebab
    kebab Member Posts: 873
    edited January 2014

    Hey Bel. I think your course of action is totally reasonable. I did lumpectomy, chemo and radiation. From what I've experienced with lumpectomy recovery and what I've read about mast. recovery, I would go that way again, if I had the choice. Get the tumor gone, get your nodes sorted, and get started on treatment asap.  It also gives you more time to *really* consider your further options re: mastectomy. If you have the mast. now, when you're making decisions in a rush, there's no way to go back and change your mind, you know? Doing the lumpectomy gives you more breathing space, more time to do your research and talk to people and make the final decision that is best for you.

    Hugs to you as you decide on the next steps. You know where to find me if you want to chat. :)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    belleb, I really struggled with this decision. I also had a tn tumor. My
    BS made a good point when I was deciding. She said she could always cut
    out more, but couldn't put back what she took off. I had healing
    problems from past surgeries that helped make my decision. I opted for the least invasive surgery but it was an overwhelming choice. Learn as much as you can about the pros and cons of lumpectomy vs. mastectomy and do with what you feel is best for you. Every person is different and you know your body better than anyone. I chose to do chemo first, surgery (lumpectomy) and will start radiation this month. Good luck!

  • ziggypop
    ziggypop Member Posts: 1,071
    edited January 2014

    belleb - It might even be possible for them to do neoadjuvant surgery - which would possibly shrink the tumor down to an even smaller size for the lumpectomy. 

  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    ziggy - Did you mean neoadjuvant chemo - not "neoadjuvant surgery" to shrink and get better margins?

  • ziggypop
    ziggypop Member Posts: 1,071
    edited January 2014

    Why yes, Kicks. You have come to my pea-brain rescue once again. 

  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014


    When I type something that doesn't come out the way I meant - I 'blame' it on my 'silly' fingers getting 'twang-fluzzled'.  Definately happens to all of us. Winking

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

    belleb, I did not agonize over the decision, I just wanted it done now. My surgeon told me if it were his wife, he would want her to have the lumpectomy. I was nervous when some women looked at me like  I was insane for not doing the mastectomy, but that would not of  changed my lymph node status. That is where I had the most cancer...5 months have passed, I am comfortable with my choice...

  • ruthbru
    ruthbru Member Posts: 57,235
    edited January 2014

    I think you are doing the right/smart thing!

  • placid44
    placid44 Member Posts: 497
    edited January 2014

    Belleb,

    I am triple negative and I had chemo before surgery. They told me to start chemo right away. That way you can shrink tumor and also monitor to see whether it is indeed shrinking.  If it's not, then they can change the chemo to one that might work better. ( If you have surgery first, you don't know whether chemo works.) I would at least ask your docs about it. Another advantage is that you can start treating any cells that may be circulating in your body right away.  That is the most dangerous part.  You don't want them to take hold.  The thinking is that the surgery can wait.  I am not a doctor and of course consult with your team and make your own decision. 

    Feel free to private message me anytime. Also check out the triple negative threads.

  • MaryFox
    MaryFox Member Posts: 121
    edited January 2014

    I'm triple negative and had lumpectomy surgery first because ultrasound indicated a relatively small tumor even though it felt big. Turns out it was 5.2 cm and the margins were not clear so I then had mx just on that side.  Whoopee, 2 surgeries on one boob within 2 weeks!  Started chemo 2 weeks after mx.

    I should have had the chemo first, but it didn't work out that way.  Triple neg is a beast not to be toyed with.  Get started on the chemo, IMHO.

  • Kicks
    Kicks Member Posts: 4,131
    edited January 2014

    bevin - posting a site for someone to go to that states your thoughts  is fine  BUT to post from it stating that  "In fact for any age or cancer type, lumpectomy plus radiation was linked to a better survival rate than mastectomy" is not correct for all types of BC or all ages.   IT might be true for some but not for all - for IBC, a simple 'lumpectomy' is not an option - there is no 'lump'.  As I said - it's great to post site that support you but to then post from it without it being done as a quotation and  write "In fact - - - " when it isn't FACT for all.

  • belleb
    belleb Member Posts: 170
    edited January 2014

    Well, yesterday I had the lumpectomy and sentinel node dissection (and port implanted). I'm pretty sore this morning, but glad to have one more speed bump behind me. The frozen section reports from the OR didn't show any cancer in the nodes, but I am not going to get too excited about that news unless the full pathology report confirms it. I don't know what the accuracy rate is of the frozen section? Anyway...Tuesday is CT scan and bone scan, then Wednesday I meet with the oncologist for the first time. I imagine chemo will start within a couple of weeks!

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

    Belleb,  that is huge to have it OVER ! The drains seemed liked the worst part. I hope that your nodes continue to be clean, you are right to be cautious on waiting for the whole report. My surgeon did have the correct info right after surgery, as he told hubby & daughter.   Take care, rest & lots of water...

  • ruthbru
    ruthbru Member Posts: 57,235
    edited January 2014

    Glad that part is done.....one step at a time.

  • msphil
    msphil Member Posts: 1,536
    edited January 2014

    dear bevin, I would have to disagree as I had a L mast, during planning my wedding and am now 20yr this yr SURVIVOR, so it depends, msphil( idc, stage2,0/3 nodes, L mast, chemo before, surgery and after surgery). Praise GOD

  • PaulAndSandy
    PaulAndSandy Member Posts: 123
    edited January 2014

    My mom decided against the bilateral mastectomy with her Stage 3a cancer. 9 years later, the cancer came back to the other breast as Stage 2. That Stage 2 cancer then turned into Stage 4 when it spread and she died 2 years later. Her only regret: not having the bilateral mastectomy as it would have probably saved her life according to her oncologist. (They also recommended a lumpectomy for her at the time.) Just wanted to add my story as there seems to be a lot of support for the lumpectomy route with no one explaining the potential benefits of a bilateral mastectomy. 

  • littlecalico
    littlecalico Member Posts: 28
    edited January 2014

    PaulandSandy, thank you for being here to share your story. I'm not sure I understand: a cancer in the other breast is a new cancer, not a recurrence, right? So a new, contralateral cancer has "nothing" to do with the first cancer and has more to do with predisposition; whereas recurrences are necessarily in the same breast. Am I correct? 

    belleb, it sounds like you have had genetic counselling and you are waiting for the results. I would advise you to wait until that moment to decide for/against a mastectomy: that will leave you time to think it through, but also it will give you an opportunity to decide based on a tangible risk-assessment, depending what the genetic result is. Whatever you will decide, you will decide with all the information in your hand. 

  • PaulAndSandy
    PaulAndSandy Member Posts: 123
    edited January 2014

    sorry littlecalico, I should have said "new cancer" in the other breast, not "recurrence." Point is, she opted away from a bilateral mastectomy and ended up with a new cancer in the other breast. She regretted not having the bilateral mastectomy because the second cancer was the one that turned into Stage 4.

  • belleb
    belleb Member Posts: 170
    edited January 2014

    Thank you for all the input. I definitely have not ruled out a BMX, but I did feel like I needed some time to make that really big decision, and for the meantime a lumpectomy got me started on the road to chemo faster. Today I had CT and bone scans done and also got the final report from last week's surgery confirming that the three sentinel nodes they took were free of cancer, so that was a nice little pick me up. I REALLY needed some positive news after the last few weeks of turmoil.

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

    belleb, Woohoo! The nodes are clean...that is very good news. Hope you are healing from the lumpie and able to rest.

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