Diagnosed and not Worried

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  • lovetosail
    lovetosail Member Posts: 544
    edited December 2009

    Count me in this naturally upbeat group.  I was shocked and numb at diagnosis time, but since then have been, 95% of the time, remarkably positive about my prognosis and ultimate outcome.  It helps that since diagnosis things have gone well: no pain from the SLN bx, nodes were clear, very few SE's from chemo (so far, but I've had only 1 tx), I got in the arm I was interested in for a clinical trial. 

    I work in research as a statisician for a behavioral geneticist - so I am naturally drawn to all the stats in BC and actually enjoy poring over the models and numbers.  I take as a silver lining in this whole process that I am learning a lot of interesting things.  It's the science project I never wanted to be in, but while I'm here I can't help but enjoy reading some of the papers.  And yeah, sometimes I get scared, but I move on from that pretty quickly, most of the time.

    When I emailed close friends to let them know of my dx and choice of treatment paths, etc., one friend emailed back to say that he was amazed at the tone of my email, he said it was as if I were describing a grand adventure I was going on rather than dealing with a potentially life-threatening disease.  Maybe I am nuts.  Maybe someday this cancer will kill me.  But I don't really believe that.

  • writer
    writer Member Posts: 208
    edited December 2009

    So the question for me is how to help the ones we love share our lack of panic. When I got the news yesterday about having not just DCIS but also IDC (grade 3 across the board, HR2+), which means chemo, my mother and oldest daughter fell apart. It kills me to see my 74-year-old mother so scared for her 51-year-old daughter-- I guess we go right back to being kids. And then I have a college girl and a high school girl (and a husband) to keep from being overly stressed and scared.

    Have any of you dealt with that?

  • nene2059
    nene2059 Member Posts: 270
    edited January 2010

    Hey writer.  They will follow your lead. It is ok if they freak out at first we all had family do that I believe. This is in the beginning after dx. After that they and you will get all the info on treatment and prognosis and then get on with it.  If you are ok they will be ok.  To be honest I complained so little during all the crap that is treatment that I feel like I am paying for it a little now.  Especially at work.  Everyone thinks I had a head cold I believe because I have found that if someone has cramps we are getting them a cake and a get well card and they treat me sometimes like I was out of work "finding myself" in Europe or something while in actuality I was" finding" my bald head and  bone loss and reconstructed boobies.  This is not your question though, sorry about that, what I am trying to say is that if you are ok your family will regroup and be fine too.  Laugh, cry, feel whatever you need to during this but don't let the months that you are in treatment go by without finding joy.  I am not a parent so I think that may be a more complex situation then just smiling to make them feel better.  Of course they will worry about you like crazy but seeing you being as normal as possible will made everyone relax. Best wishes. 

  • lovetosail
    lovetosail Member Posts: 544
    edited January 2010

    I think nene2059 is right, they'll follow your lead.  When they see you are ok, they'll be okay too, after they absorb and process information.

    I was really worried about telling my 79 year old Dad (my Mom has passed), but as long as I call him when I'm totally up (he doesn't live near me), he seems to mirror my upbeat tone.  The one time I spoke to him when I was a little tired and down after the port placement surgery, he picked up on that and sent flowers the next day - funny!

    Writer, I see that with your new dx, you are now HER2+ - do let your family know that there are several targeted therapies to help you.  That, combined with the ER+ status means that you have a whole arsenal at your disposal!  I have a friend who works in breast cancer drug development at Glaxo Smith Kline and people doing research in this field are all extremely excited about the new drugs coming out for HER2+ cancers - most aren't yet ready for prime time but they expect that HER2+ cancers may be fully "curable" in 10 years or so (I do use that word with hesitation, but the drug people are very optimistic).  I find this exciting, in that IF things go south for me some years down the road and I get a recurrence there will be all kinds of new therapies that might do the trick.

    Best wishes to you all for a healthy 2010!

  • HappyTrisha
    HappyTrisha Member Posts: 614
    edited January 2010

    Hope I'm not doing anyone (including myself) a disservice by not reading all of the posts (I am really a very intermittent poster these days) but I just saw CoolBreeze's post and it reminded me so much of my experience with the whole thing.  Once I was finally diagnosed, I was nothing but positive.  Maybe I'm pie-in-the-sky also, but I never got down or depressed.  I considered having BC a minor inconvenience and never asked "why me".  Instead, I figured, why NOT me!   I had two mastectomies (one elective), all of my lymph nodes removed on one side, chemo before and after surgery, radiation, herceptin, I'm on arimidex, and I had reconstruction surgery a year and a half after radiation.  I never thought of any of it as anything but a bump in the road.  I have been optimistic from jump street and decided that none of it would get the best of me.  And it didn't.  I never took time out of work when I was on chemo (except the time it took to get the chemo!).  I had a fantastic experience with the whole thing.  I consider myself so lucky and blessed.  I had a tremendous support group but really preferred to rely on myself and not bring others down.  My biggest fight was getting my family to let me have some indendence in the process!! 

    There is no correct way to process BC.  But I really loved reading CoolBreeze's post because I felt like an oddity when I was going through the process just because I didn't find anyone else who was quite so breezy about the whole thing!  I know I was in the vast minority - but it does feel good knowing that there are others out there who totally understand how my psyche worked during the process; and knowing that theirs worked the same way!

    Good luck to us all.  I live KNOWING the cure is right around the corner.

    Trisha

  • writer
    writer Member Posts: 208
    edited January 2010

    Thanks for the future news, lovetosail. My BC surgeon is part of the UCLA BC research crew, and her boss developed Herceptin. She's recommending me for a trial at UCLA for a new drug to add to my chemo cocktail.... can't remember the name (I was in such shock Wed. when getting this news), but it's something that restricts growth of blood vessels so cancer cells can't get fuel to grow. I'm not sure whether I want to try it, but I'm grateful to have a medical team that's on the forefront.

      

  • lovetosail
    lovetosail Member Posts: 544
    edited January 2010

    Writer - I'm treated at UCLA also - my BC surgeon is Raquel Prati and my oncologist is Sara Hurvitz, who trained under Herceptin inventor Dennis Slamon.  I'm in a trial at UCLA that adds Tykerb (chemical name: lapatinib) to the "standard of care" for HER2+ patients of TCH.  I think your drug is Avastin.  My trial is neo-adjuvant and you already had surgery, right, so of course you couldn't have done that one.  Sara Hurvitz is heading up both trials, I believe.

    The team at UCLA is great - you're right, it is terrific to be with a team that is doing cutting edge research.  Good luck with your treatments, you and I both are in great hands.  There is plenty to be optimistic about!

  • writer
    writer Member Posts: 208
    edited January 2010

    lovetosail:

    Small world. My BC surgeon is Jeannie Shen and oncologist (who I have yet to meet) is Steven Applebaum, both at Huntington but also UCLA, and both worked with Dennis Slamon. You're right, the study is Avastin. Since the shock has faded from Wednesday's newest diagnosis, I have been working hard on getting an AA-level degree in Her2-positive breast cancer. (I used to write a lot of medical/health stories for national magazines, so one thing I know how to do is research and translate jargon-dense information into understandable bits.)

    Are you in the middle of chemo now? Are you doing carboplatin and taxo with Herceptin?  It sounds like what I'm headed for. Would love to know if that's what you're doing and how you're feeling. I am starting to accept some parts of my future, like hair loss (but the eyebrows! OMG!). But it's hard to get an estimate of how much work I will be able to accomplish (I have my own business) and if I will be able to manage a long-planned, much-anticipated college-hunt trip with my daughter while in the middle of the chemo thing.

    Anyway, nice to meet you, if under unhappy circumstances. 

  • lovetosail
    lovetosail Member Posts: 544
    edited January 2010

    Writer I have had one chemo tx, my second is Jan 7.  I am taking taxotere, carboplatin and Herceptin (abbreviated TCH) and the trial drug Tykerb.  I had a pretty easy time of it for the first tx, I was a little tired and achy for days 3-6 and then bounced back 100%.  I haven't had much hair loss yet, but I think it will start going this week.  I'm ready with the headcovers & wigs and what not.

    Regarding research, get Robert Bazell's book on the development of Herceptin, it's a pretty interesting read.

    Hey I was in your neck of the wood today - I've lived in LA since 2000, but just today made my first trip to the Gamble House - amazing place.

    Good luck with your treatments, and feel free to PM me anytime!

    Sue

  • momand2kids
    momand2kids Member Posts: 1,508
    edited January 2010

    I like this thread and have had much the same experience--- lumpectomy went fine, no nodes, no vascular invasion, good recovery-chemo was not easy, but not horrible-- I was able to work through most of it, radiation fine, just tiring, and femara, well, some se's but not life threatening.... 

    I do think people take your lead.  I did not tell tons of people, but when I did, I just said "I  have some good news-they found a lump and it is early and they can take it out and my prognosis is excellent".... so, for almost everyone who knew, it was very curable, which is the word used by my oncologist... I was certainly worried at times, but for the most part, the experiences was as positive as it could be....

    I told a friend once that my calculated risk of recurrence, based on the oncotype and chemo was about 9% or below.  He said "well, do you want to live in the 9% or the 91%?"  I decided on the 91%.  

    Best of luck to those of you in chemo--- I had four rounds, and each time I left I told myself "I am 25% done, 50% done...so on... it did pass quickly.  And, related to the hair--I finished chemo in Feb-- I now have a thick mop of curly hair which I love--(it was thick and straight before).... when it decided to come back, it really came back!

    Happy New Year

    Carole 

  • bluedasher
    bluedasher Member Posts: 1,203
    edited January 2010

    I had a moderately hard time with chemo - no hospitalizations but I was pretty weak, anemic and low on magnesium by the end of it. An odd reaction to either the carboplatin or Neupogen would cause me to have sudden nausea and vomiting late in my cycle. I'd feel okay and then suddenly be sick before I had time to take anti-nausea medicine. I was a bit worried at the end of chemo about how weak my leg muscles had gotten and how long it would take to get strength back, but between week 5 and 6 after chemo most of it came back. I think getting my magnesium levels back up helped.

    I worked through treatment - though sometimes during chemo I worked a pretty short day and took the occasional day off. Rads fortunately went very easily. I didn't have any tiredness from rads. 

    People generally took their attitude from me. I worried about my husband because he is the type to put on a strong face to try and help me through but be worrying inside. I've been done with treatment long enough now that that would have shown up and he seems to have come through fine. My kids (all adults) were fine, my toddler granddaughter didn't seem bothered by my bald head. I didn't have to tell my parents - my Mom died long ago and my Father is kind of senile and barely seems to remember that I exist.

    One of my sisters was diagnosed with stage IV lung cancer a few years ago and is in remission with a targeted drug so stage I breast cancer seems relatively minor in comparison. Recently, the mother in law of one of my son's found stage IV ovarian cancer and had pretty massive internal surgery to remove what they could find. I've been able to help with some info because her chemo will be with similar drugs but her surgery has been difficult to recover from to get to chemo. She has been told that it is likely to kill her within 5 years. A less than 10% chance of recurrence seems pretty good in comparison.

    A man in one group I work with had had treatment for stage IV prostate cancer a few years before and was back looking fine. During my chemo, it recurred and he was restarting chemo. He died within a couple of months. That was one of the hardest times for those around me - he'd had cancer, got better and then it killed him. Some were afraid that the same might happen to me. I tried to gently point out that there is a big difference in the risk for stage IV cancer coming back and stage I and that there was very effective chemo plus a targeted drug for my cancer and they seem okay now.

  • writer
    writer Member Posts: 208
    edited January 2010

    Hey lovetosail...

    I live in the Gamble House neighborhood, so you were right here! Isn't it an amazing place?!? And such a glorious day in Pasadena (and all over L.A.).

    Good luck with the next round and the hair loss. Was out seeing Avatar and having dinner with my husband, kids and some friends, and they were all having fun discussing how I should cut my hair to prep for chemo. It's a relief to see my high school daughter able to have fun with these more light-hearted conversations (she's a theater girl and is excited about wig shopping). The college girl gets a little more freaked out, but she's starting to adapt.

    Bluedasher, thanks for the positive words. Damn straight, as hard as it is/will be in terms of what we have to go through, it's nowhere near like stage 4. We'll all be fine. As I keep telling my kids.

    Colleen 

  • bluedasher
    bluedasher Member Posts: 1,203
    edited February 2010

    This weekend when we were talking about cancer (one of my son's in-laws is in treatment for stage IV cancer right now so it's at the front of their minds),I came up with a way of helping my family visualize how small my tumor was. My pinky finger is about 1 cm wide so my invasive cancer was smaller than the tip of my pinky.

  • peaceandhealth
    peaceandhealth Member Posts: 26
    edited February 2010

    Writer,

    I had ideas about how everyone would react after my diagnosis and I learned that for those who want to walk with you on this journey it can be an amazing learning experience for them.  My two adult (in their 20's) daughters who lived with me during the treatment (including two lumpectomies, two port installations, eight chemo, 4 AC and 4 Taxol, and a double mastectomy with DIEP reconstruction) over the past ten months have both told me how they feel like they have grown and that they are more confident about being able to handle whatever comes their way.  I had a lot of supportive friends and family, but had some people who really disappointed me in their response.  I decided not to focus on them, but it was painful at the time.  Be open to what people want to do for you and let them in.  It broke my heart to watch my girls take on so much responsibility, but I can see how they have grown.  Quite a mixed blessing, I guess, but I don't know where I would have been without them.    

  • angelsabove
    angelsabove Member Posts: 363
    edited February 2010

    Well....mine has been a ROLLER COASTER of emotions....I am doing ok now....I completed the end of my treatment last Friday.....Maybe I am not ok...MAYBE it is the EFFEXOR...lol

    MAY GOD BLESS US ALL 

  • Cisatypo
    Cisatypo Member Posts: 23
    edited April 2010

    so what happened with your second muga scan?

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