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Comments

  • Adey
    Adey Member Posts: 2,413
    edited March 2012

    Michelle, you're an inspiration to all stages.

  • GointoCarolina
    GointoCarolina Member Posts: 95
    edited March 2012

    Caitlin, you need to go to the HER board.I am also hormone negative and HER positive.I am going on four years since my diagnosis.They are now saying that with the invention of herceptin,HER + is not as scary as it once was.I still remember my onc saying"your cancer is very aggressive" and I broke down in tears sobbing.Then he said"the good thing is we have a new drug and it will kick butt".I had TCH,I was offered AC in a trial,but I did my research and felt the heart issues with the combined Adriamycin and herceptin were not something I wanted to deal with.My onc left it up to me, but then told me he agreed with my decision.I am kind of surprised that your onc was so negative,you might want to get a second opinion.I loved my onc,but the first breast surgeon I saw had me thinking I was going to die before he even had my path report.I had a different one do my surgery!!I know this is scary,but herceptin is a miracle drug.You can PM me any time,will give you my phone number if you want and like I said,go to the HER board,so much info and even a thread on ten year and over survivors.You will be fine,just breathe.I am sending you so much good energy.

  • CaitlinB
    CaitlinB Member Posts: 88
    edited March 2012

    Thank you Michelle and Pandazankar! I am trying to breathe and not get too freaked out by all of this.  I want to be one on this board that is a 10+ year survivor. 

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2012



    Caitlin, I agree on getting a second opinion. What u need right now is an onc that is supportive. Yes stats r just stats. My cancer was 8/9 in terms of aggessiveness, but I was triple negative so cannot offer any advice re: herception. My sister was her2 positive and had Herceptin for a year after her regular course of chemo. The taxanes (taxol and taxotere) are very effective at treating rapidly dividing cells. I had 12 weekly taxol followed by 4 ac every other week(dose dense treatment). Because I was young my onc hit it hard. And I am glad he did. Next month will be 7 years (knock wood). I am not currently at home (iPhone explains the text shorthand) but will pull some info On chemo for u. Hang in there. A million hugs!

  • need2new
    need2new Member Posts: 165
    edited March 2012

    Caitlin - sorry for more news, cancer sucks. You are arming yourself for the fight with knowledge, that is so important. There is truly nothing wrong with a second opinion if you feel you need one.

    If not go forth. Statistics are just that, general numbers. They do not take into consideration age, health status, diet etc. If I listened to stastistics for my sarcoma I would not be here typing to you. 

    Peace & strength to defy statistics,

    Karen 

  • Adey
    Adey Member Posts: 2,413
    edited March 2012

    May everyone on this board defy the statistics.  We have many excellent examples.

    Jane123- Hope you are doing well.

    Downey- Safe travels tomorrow.  BTW, I never needed my helper doctor.

  • anniese
    anniese Member Posts: 69
    edited March 2012

    Haven't posted in a while but have been following along with everyone in 'lurker' mode.

    Caitlin - sorry to hear about what's going on.  I will add you to my prayers!

    Aday - didn't know you used to live in Vancouver (WA not BC).  I did too - can't count the number of times I've said that exact same phrase to describe which Vancouver I lived in.

    Springtime - can you add me to the list above?  Going back to NOLA in June (the 18th) with Dr. M for what I think woud be considered '3b'(?).  Have to get nipples adjusted/shaved down (healed too nicely and they are constantly ON - not good for light weight shirts) and fix a wave and fold that are not quite right.  If not for the nipple issue, I wouldn't even be doing this - but, as they say, as long as I'm there anyway..........

  • Adey
    Adey Member Posts: 2,413
    edited March 2012

    anniese-  Waves to fellow, former Vancouverite!   WA not BC.  (c:

    Question for the NOLA veterans and/or residents........ I want to have a nice, quiet, romantic dinner with husband before I dive back into gimpy mode for awhile.  Any recommendations?  Thanks in advance.

  • celtic_antique
    celtic_antique Member Posts: 351
    edited March 2012

    Caitlin -- My daughter had triple neg, Stage II with a huge tumor. She did neoadjuvant chemo (I can ask her what they gave her), 8 rounds. It so shrunk the tumor that they couldn't find it and she was able to have a lumpectomy and rads. She is doing well now and flies from CAnto NC to see her team at Chapel Hill. Thinking positive thoughts for you and sending all of the good energies I tried to infuse for my daughter. HANG IN THERE ...

  • anniese
    anniese Member Posts: 69
    edited March 2012

    Hi Adey - my husband and I went to Commander's Palace for a very nice meal (spendy though).  However, some others might know a better place to go.

  • bdavis
    bdavis Member Posts: 3,192
    edited March 2012

    Adey.. Commander's Palace. It is not in the Quarter, but one of the best!!

    Caitlin.. So sorry. I know it must be frustrating to hear this, after thinking you were all good... I had Taxotere and Cytoxan (6tx) and found it very doable.. I asked to avoid the adriamycin if possible because of heart concerns as I have high blood pressure, but I believe it is the strongest drug they have... I know a woman who had ACT and barely had any side effects... I would get a second opinion either way, just to hear what plan another doctor feels is best.  I also agree that your doctor seems too negative.

  • Springtime
    Springtime Member Posts: 3,372
    edited March 2012

    Caitlin, this is the absolute worst time in this whole process - getting this news, not knowing, figuring out what to do. Get the PET, and I am with Anne sending out vibes for an all clear. 

    I had Adryamyacin and Cytoxin x4 then Taxol x4. That was in Aug 2008 so a long time ago.

    Get through your treatment and then focus on healthy living! The more I focus on what I am doing to prevent it from coming back, the less I worry about it. Time, of course, helps too.

    Also, the "coming back" part. If it comes back locally or regionally (in your breast or lymph nodes near) it can still be considered curable. It's when it comes back in a distant location that it is more serious. That said, I know women living with Stage 4 and actually living life. Some of them post here!

    But for now, I am focusing on an all clear for you... 

  • CaitlinB
    CaitlinB Member Posts: 88
    edited March 2012

    Thank you, ladies!  It helps SO much.  I spoke to Susan at SCSC (who has been wonderful to me) today and she said that cancer is a gift and that no one is promised tomorrow.  I am trying to focus on that--on living for today.  I definitely will focus on healthy living in the coming months.  What books did you guys read to help you focus on healthy living and being cancer-free?

    I am also renewing my faith through this trial.  I have to admit to being a little mad at God, but at the same time, I feel that He will bring me through this.  

    Adey, I have heard that Cichon is a great place for foodies.  Real authentic NOLA food and looks pretty in photos.  

  • glostagirl
    glostagirl Member Posts: 93
    edited March 2012

    I haven't posted on these boards in a very long time, but have this thread on email alert; I'm often stunned at how busy it's remained since I was first researching surgical options back in 2009. Some of the same gals are still here!!!  

    Several of you know I had an SGAP failure in April of 2009.  It was devestating, particularly after all the research I did to get the best surgeon and best procedure for me.  Realistically, it happens, even to the best.  

    I had to start chemo right away for a recurrence of Trip Neg. IDC, so a retry was out of the question for a while. After starting chemo things were complicated further by an infection in the mastectomy wound.  After that, fear set in, I couldn't even think about reconstruction without considerable anxiety.

    Fast forward three years; I have a surgery date for a stacked DIEP on June 20 with Dr.'s Massey and Sullivan in NOLA.  Wow, I've come a long way baby ~ I can actually write/say that without having an anxiety attack!  That may change as June approaches, but for now, all's good.  I'll be counting on ya'll to keep me sane!

    I've had a lot of time to come to terms with this loss and to question whether reconstruction and scarring my body even more was worth it.  Or, as several friends and family members would prefer; could I live out my days with only one breast (DD) and a nasty scar where it's mate once was?  I've concluded ~ I need to be fixed.  I know it won't be perfect, but lopsidedness is just not working for me.  It is a constant burden and reminder of all I've been through, it's screwed up my self esteem in ways that are just not acceptable.  At 55, I'm not young, but I'm active and young at heart.  I'm sick of feeling less than I am.  I know if I don't try again, despite the fear, that the day I die it will be with that regret.  Sorry if I sound melodramatic, I guess I've been thinking about this for too damm long!  I hope my experience will help someone else who's struggling with this decision.  

    Thanks to all you fabulous gals who have continued posting your experiences and wisdom all this time and to the newbies who've kept this fabulous thread going.  From talking to other women who've recently been diagnosed; there clearly is a need and thirst for knowledge regarding reconstruction that is not being met by many doctors.  A good friend was recently told by her breast surgeon and oncologist that she COULDN'T have her lumpectomy defect fixed (what?).  I showed her the before & after photos on the Breast Center's site and encouraged her to seek another opinion, she had her procedure last month and is doing great!!!  So....rock on!

    In the spirit of the original post by Springtime....I noticed that Anniese, who I recently met in Salt Lake at Dr. Massey's symposium, will be there that same week, hope your procedure goes well, see you there! 

  • AnneW
    AnneW Member Posts: 612
    edited March 2012

    Glostagirl, how great to see you and hear your news!!! I know this is a huge step and leap of faith for you, after all you've been through. But you ARE young at 55 (me too!!!) and deserve to feel more whole, despite what your family would prefer. (I know, we've all heard it. They just want us to be healthy. They don't care about the breast. But we're the ones who see what we see when we take the shirt off!)

    We're here for you. We'll talk you down off the ceiling when you get closer to your date!!

    Big hugs,

    Anne

  • glostagirl
    glostagirl Member Posts: 93
    edited March 2012

    Thanks Anne, you've been a big inspiration over the past few years.   So has Nordy, who I met and had the pleasure of skiing with last month when she was in SLC for Dr. M's symposium.  

    I was so happy to read of your cancerversary!  I'm in my 4th year, just had a bunch of scans and all looks good. One more reason to go forward with reconstruction.

    I haven't told my family of my plans yet,  arrrgh, it's going to be  tough, but I'll be strong, I know they'll try, especially regarding traveling to New Orleans, but they won't change my mind!  

    Good night, getting up early to ski some Utah pow!  

  • Nordy
    Nordy Member Posts: 1,106
    edited March 2012

    Ha! Glostagirl, you are young! Jealous of the freshies you are getting to ski tomorrow!!! We took the girls to Timberline for 3 days and wore them out! Yesterday they went to all day lessons/kid's camp and my hubby and I got to play, play, play! Timberline is not steep... which is why we love it for the kids, but i wish the terrain was a little more challenging for us! You are going to be so awesome come June. I will be cheering for you from the north while you are there. A billion hugs!

  • Djweinstein
    Djweinstein Member Posts: 60
    edited March 2012

    Hi Cailtin--I too had a very aggressive cancer and I I'm going on 10 years clean!!  I would highly recommend getting a second opinion.

    I had triple negative, Stage IIb--a pretty large tumor and 2 positive lymph nodes.  I was only 29 at the time and they said it was aggressive.  After my lumpectomy, I had 6 months of chemo-- Adryomyacin (sp?) and Cytoxin followed by Taxotere.  I then had 2 months of radiation 5 days a week.  

    Stay strong...we're with you!!!!  

  • Fight-like-a-girl
    Fight-like-a-girl Member Posts: 22
    edited March 2012

    Caitlin, I was also diagnosed with aggressive bc, lymph nodes and her 2 + in June 2009. My first "dr" said I would be lucky to see Christmas!! lol who does he think he was talking to? My husband and I decided to do it all - no regrets! I did: BMX , Adriamyacin & oral Cytoxin weekly for 8 weeks got to sick to last 12 weeks. Went to a new Dr. Waited 3 weeks then did Taxotere every other week (6 total) and herceptin every week for 12 weeks then just did herceptin every three weeks to total one year. Three weeks after finishing Taxotere I did radiation for 28 days. Hit it hard - do it all the first time- never give up". Sending lots of hugs and prayers. Pm me if you have more questions. Kathy

  • Adey
    Adey Member Posts: 2,413
    edited March 2012

    Thanks anniese, bdavis and caitlinb for the recommendations!  They look great.  I remember walking by the "pig" one at some point.  (c:  I'm leaning towards the Commander's Palace but..... Any others?

    glostagirl-  What a journey.  Congrats on June.  (c:

    nordy-  Timberline........ That brings back memories!

  • bdavis
    bdavis Member Posts: 3,192
    edited March 2012

    Adey.. I think I have been to all of the older restaurants in the city, and Commander's is my favorite... If you want the Quarter, try Court of Two Sisters.. They have a pretty courtyard, lit up with Christmas lights... and less commercial than some of the more recent arrivals... Never at at K Pauls though, so I shouldn't say all... A couple of my other favorites aren't there anymore (Katrina)... sad.

  • Springtime
    Springtime Member Posts: 3,372
    edited March 2012

    Glotstagirl,

    Congratulations on getting to this point in your journey! I will add your date above in our list. June is not that far away!  I am soon to be 54 and I will also reach my 4 year anniversary of diagnosis this summer. I had my recon in 2009 and I feel restored and whole and find myself in beetter shape, more active and living a more healthy life than before. I know you will  no regret this because you've taken your time. I can imagne being "lopsided" and reminded will be something you will be glad to have in your past!

    Caitlin,

    For healthy living: I started with "Anti-Cancer, A New Way of Life" which focuses on diet, exercise, and serenity practices (meditation, yoga, devotions, destressing stuff). I also follow Dr. Weil (you can find him on the Web, and he sends a daily email to remind you of many things) and there are also several "cancer dieticians" online. There are other books out there too, but this Anti-Cancer one is easy to understand and full of hope. It makes you feel like after my treatment, YES there are things I CAN DO to take charge of this and give myself better odds. For instance, did you know that a woman who was previously diagnosed with breast cancer and who exercises 3-4 times a week for just a half hour is 50 percent less likely to get a recurrance? (this is better than chemo and rads, combined, and is healthy for your body; though he does encourage medical treatment as well in this book, FYI). Women who exercise through treatment are at least 30 percent less likely to get a recurrance. Exercise is so important, it burns off estrogen, glucose, insulin and other things that cause an inflamatory reaction. 

    Well that is my soap box. I am on a thread here called "Motivation" where we go and post what exercise we do (there is another one out there too called "lets post our daily exercise"). I find this motivating and hearing what others are doing for exercise helps. It also keeps me friends with people who are of a like mind. Anne and Nordy and Trisha and others here are also great examples of women who are flat out with fitness!

    OK off soap box. :)  

  • cascader
    cascader Member Posts: 152
    edited March 2012

    Glostagirl, I identify with so many of your feelings. I had a implant failure almost 2years ago due to infection, and I was devasted. It took me a long time to bounce back emotionally. My daughter reminds me that as I was being wheeled into the ER while on vacation to be "de-constructed" that I vowed to NEVER attempt recon again. But as you say "I've come a long way baby".  I am scheduled for a unilateral SGAP  in June with Dr. Kline in Charleston. I too have fear, but feel I have to try again. It is the right decision for me, not for everybody, but for me. I am 54 and will be spending the next few months getting in the best shape that I can with exercise, nutrition, and working on positive thinking envisioning only a successful outcome. Sounds exhausting, but it will hopefully keep me from my obsessive thoguhts! Like you, there are those around me including some close family members who do not understand and do not support my decsion. I dont need that right now. I understand  your struggle, this is a big deal! We can wait until June together and know that we are not alone when freaking out!

  • Downey30
    Downey30 Member Posts: 199
    edited March 2012

    Hi Ladies,  I've made the first leg of my trip to NOLA.  We are spending the night in Montgomery Alabama and will finish the trip tomorrow.

    Adey,  thanks for the warm wishes

    Glostagirl,  we each have to do what works for US!  The other parts will fall into place.  One thing I've learned through all of this is no one knows what it's like to walk in your shoes.  I think the gals on this site come very very close. 

    Springtime, great suggestions.  I am going to look that book up.

    Caitlin,  You are in my thoughts and prayers.  You'll get through this and we'll be yacking 10 years from now.

    I'll post more after my preop Monday.  Trying to keep the nerves in check.  

    Adey, I tried to phone you but didn't get through.  I'll try again. Hope you are feeling less pain. 

  • tigsun
    tigsun Member Posts: 162
    edited March 2012

    Has anyone with Medicare had surgery at the center?  I wondered about that. Just found out yesterday that they saw "something" on my mom's mammogram.  My mind spinning with all kinds of thoughts at the moment while I try to remain calm until I know more. 

     Also I emailed Vinnie so will probably have a date for tattoos soon.

  • Downey30
    Downey30 Member Posts: 199
    edited March 2012

    Just purchased the anti cancer book on my Nook.  

    Eva,  hope you are feeling much better each day.  I'll try to phone you tomorrow 

  • tigsun
    tigsun Member Posts: 162
    edited March 2012

    I have to find my anti cancer book and reread again.  I know I have to exercise more.  I was saddened to hear the author had died.

  • Springtime
    Springtime Member Posts: 3,372
    edited March 2012

    Cascader, you remind me that before and after surgery, I listened to "Meditations For a Successful Surgery"  by BelleRuth Napersteck. This really helped me before surgery and after, when I was recovering. 

    Really good for the positive thinking and envisioning a successful outcome. Calming. 

    Here is a link to it in case anyone is interested...

    http://www.amazon.com/Health-Journeys-Meditation-Promote-Successful/dp/1881405346 

  • EvaM
    EvaM Member Posts: 272
    edited March 2012

    Remind me to come here if I ever need a tough posse to run the bad guys out of Dodge. You women are amazing. Such stories! My friends call me brave and I keep trying to tell them they ain't seen nothing.

    Starting to turn the corner a bit on the pain I think. I'm alternating between ibuprofen and lortab and it seems to work a little better than just the lortab. My right hip drain is only putting out at night so I think its days are numbered. And just when I was getting so attached... not. 

    Hang in there everyone. Downey, I meant to tell you before you left to take some satin jammies and get into them as soon post-op as possible. With the hip incisions the satin makes it much easier to slide into bed and get positioned.

    Love to you, Caitlin. You're a strong woman.

    Eva 

  • SurfaGrl
    SurfaGrl Member Posts: 107
    edited March 2012

    You GO Glostagirl!!  You are an inspiration to all of us!  If you can do it, I can do it!  I just had a uni done but should have done a bilateral.  

    Caitlin:  My prayers go out to you.  I know you will find peace and the right answers with God.  I had 4 cycles of adriamycin and cytoxan four years ago.

    Nordy: Love that you enjoy life!  Skiing!   

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