Class of 2009 - Sisters in the same time frame

12467145

Comments

  • pj12
    pj12 Member Posts: 18,108

    Hi Cheryl,

     Hope your appointment with the surgeon went well.

    Pam 

  • Ainm
    Ainm Member Posts: 362

    Hi all, hope your weekend is going well. I've been taking my walks and doing a bit of erercise although my body and brain are very confused!!!

    Sue, One L & Sheila - it can be a bit of a rollercoaster. I'll never forget those days in January - visited the dr, had a momograph, biopsies, diagnosis and mastectomy all within 10 days. Now I'm finished 8 chemo tx and rads and I've been taking Tamoxifen for the past 10 days - time flies when you're having fun - meh!!

    Sheila - I knew there must be an Irish connection with that name!! I hope you had a great time here. Is the mouth feeling better??

    Sue - Are rads going OK? I'm fair too and usually burn (when we actually get sun!!) but I didn't do too badly.  I swabbed the area with cold camomile tea several times a day and I used industrial amounts of aqueous cream (just not directly before rads). My one problem area was just at the end of my mastectomy scar under my arm - I guess the friction is agrivating it.  Good luck with the walking - don't be too hard on yourself.

    Viv - Awwww the Kitty!! What does it look like now that it's Saturday!!

    Pam - HiyaFoot in mouth

    She - Oh wow - you are a veterane - hope this all goes OK for you - again!!

    Lee - Hi and welcome!!

    Well gang it's late here so I'm going to try and get some beauty sleep!!

  • fmakj
    fmakj Member Posts: 1,045

    Hi Everyone in the Class of 2009... I guess I might as well join also!  I was dx June 1, had the sentinel node shots (they hurt!), a wire localization and lumpectomy on June 16th and have just finished #7 of 33 rads (boosters included) - no chemo offered for me. I will not be able to have any other kind of treatment after as I am also a TN.  So far so good, although I have had a few "meltdowns" recently, but I think that comes with the disease!  Hope everyone is enjoying their week-ends - it is the only days that I don't have to take 2 1/2 hours out of my day for txs  (I live 1 hour away from clinic)! 

  • stef58
    stef58 Member Posts: 32

    Hello everyone, Thought I would join also. I had my dx on May 14. IDC 1.5 cm, LCIS and DCIS , 1mm<. I had a left side mastecomy with TE on June 3, Chemo started June 29th A/C. DD. Will have my 4th A/C on Wedensday. Then  1/2 done. i think I am getting taxotere after that every three weeks. I see to be the only one that did DD A/C then taxotere on a 3 week schedule. I am looking for info on taxotere. Had friend who had no SE except the nails and her hair started to grow back. Any info would be great. Had some SE's so far but nothing I could not handle. Took more meds for nausea and consipation this time and feel great. Hugs Dianne

  • pj12
    pj12 Member Posts: 18,108

    Hi FMAKJ,

    Another sister from Canada... must be something in the water up  there  Bad joke :(  Sorry you have to be here but nice to meet you.  Hope we can share some stories and hugs.

    Do TNs benefit from hormonal TX?  I would guess not but don't know much about the category.  Who knew there were so many different phases of breast cancer?  I had no idea.

    An hour drive one way is quite a burden on top of all that you have to go through already.  I hope it is, at least, traffic free.  And good radio to listen to.  Do you have to travel as far for regular dr visits too?  

    I live in a small town but fortunately, or maybe not, population growth brought a brand new hospital to us about 7 yrs ago with a state of the art radiation department.  So my drive was 10 minutes one way.  So I guess there are good things about growth in Florida.  I, too, was no chemo, 36 radiation (8 boosts) and now Arimidex.  So far so good.  I am actually looking in to ordering my AI from a Canadian on line pharmacy.  Any warnings or advice?

    Pam 

  • pj12
    pj12 Member Posts: 18,108

    Hi STEF28,

     Welcome too.  When I read other sisters' histories I am amazed at how fast things move along.  So many decisions and tests and doctors and it all turns in to a blur!  And when it is happening it feels like time crawls, especially waiting on test results!  It's kind of like childbirth... it is hard to remember the pain of every step.  You sound so strong and have such a good attitude.  You are an inspiration!  I hope one of our group can share experiences.  I am old enough that I did not have to do chemo... but am still nervous about skipping it.  You can have the comfort that you have done everything  to achieve a full cure.  Hugs.

    Pam 

  • jburke1
    jburke1 Member Posts: 258

    Hello

    I am newly diagnosed, about a week and a half a go. I went in 3 weeks ago for the mam, then a week later had the biopsy. Three days ago I had sentinal node injections (OUCH!!!), needle localization and lumpectomy. Went to get the drain out yesterday and no path results yet, I have to go back on Monday to hopefully get those. Hurry up and wait is the game! I am new to this and not sure what I am even doing. I am just going with the flow of all of this. I know I am looking at radiation, not sure if chemo is in the picture yet.

    Prayers for all of you as we are all in this together!

  • fmakj
    fmakj Member Posts: 1,045

    PJ - No there is no medication after treatment as far as I know for TN's.  Will certainly ask onc on Monday!  My GP is in my hometown, but the Cancer Clinic for tx is about 1 hour away.  I am never driving alone and most times my family insist on driving me! 

    Jburke - sounds close to the way things went for me except I waited almost 6 weeks from Mam to Biopsy!  Then everything went pretty quickly - 2 weeks after biopsy I am getting ready for surgery!  I still find it hard to believe that this has all recentlly happened to me!  I am a CHICKEN with having any type of procedures - even the Dentist!  Now I drive everyday (weekdays) for treatment - I can only imagine how wierd it will be to not have to go for tx - SCARY!! lol I still have to get through all of August first!

    Take care all! 

  • sredd7681
    sredd7681 Member Posts: 10

    Hi, Ainm and all,

     Just for fun, my sibs are named Pat, Kathleen, Moira, Me, Danny, Michael and Eileen.  No question about the Irish roots and no question about the stunning beauty of Ireland.

    Welcome to all newcomers.  I can't believe I just said that because I'm still reeling from all the info I'm getting.  My tx may be delayed because of my dental problems, mouth full of stitches.  My sister said, "At least you're losing weight."  I'm going to make a million dollars writing the latest quick weight loss book.  I don't have a title yet but am thinking of "Rapid Weight Loss Through Oral Surgery, Cancer and Nausea."  NYT best seller list, here I come!

     Sheila 

  • mrsphilly
    mrsphilly Member Posts: 5

    Just found this topic and since I am a member of the class thought I would join.  Mam on 2/21, recheck on 3/29, talked to doc about biopsy on 5/8, stereotactic biopsy on 6/10 and final dx on 6/22.  Had to call doc 5 times to finally get an appointment.  Gave diagnosis and walked out twice during discussion to take phone calls.  Got copy of my records and went very quickly to another doctor.  Appointment next day, lumpectomy 7/6, margins not clear but sentinel node clear.  Right mastectomy on 7/23, all margins clear and very small additional tumor, then fluid aspiration on 8/7.  Waiting to hear from onc, rad so far not recommended.

     I am a teacher and have to work to keep my insurance so I am trying very hard to gather my strength as we start on August 17 and need to get my classroom set back up.  Pain meds have not been helpful at all, they put me to sleep and then when I wake up I am still hurting.  I was advised to start exercising 6 days after the surgery and am experiencing a lot of tightness around the circumference of the tissue removal.

    Everyone has been very supportive, but it is hard to talk about with someone who hasn't had the experience.  Thank you for having this group

    mrsphilly

  • carolehalston
    carolehalston Member Posts: 8,091

    mrsphilly, I was a teacher at one time.  It's a demanding job.  Good luck to you in getting back to work so soon after surgery.  It sounds as though you didn't have recon., so your recovery should be faster and simpler.  It's the recon. that is slowing me down.  I had bilat with immediate one-step on 7/24.

    Sorry to have to welcome you to our class.  We all would gladly have skipped this membership.

    Peaceful Sunday to all.

  • jburke1
    jburke1 Member Posts: 258

    Good morning all,

    mrsphilly, I wish you well in your recovery. I am too experiencing discomfort in the area where I had tissue removed. Just do the best you can and don't over do it. It will take a while to get full use of your arm. Take it easy and take it slow. Words I need to live by as well. It is easier to give advice than to take it in yourself. I have found out this humbling fact lately.

    Peace

    Jen

  • Beach
    Beach Member Posts: 16

    Hello Class of 2009.....would like to become a member of this supportive group.  I was dx early Feb with IDC and DCIS.  Had a lumpectomy one and a half weeks after.....invasive tumor turned out to be 2.4cm and DCIS was 6.6cm x 6.3cm x 2.8cm, both were grade 3.  Margins were close, (.5mm in front and 1mm at chest wall), but clear.  Tx plan was determined in March and first chemo started Mar 31.......3 x FEC, 3 x Taxotere + Herceptin for 1yr, 21 rads and 5yr Tamox.  Had a "severe toxic reaction" on Taxotere, so my last cycle was cancelled.....it basically burned me from the inside out on my hands, neck and face.  Doing much better now except for my nails and a little numbness in my feet, finger tips and face.  I'm 45 and chemo put me into menopause so dealing with those se's too.......fun, fun fun Yell  Started rads July 28th and having very little se's except some fatigue.

    I, too, am experiencing some sort of depression since chemo abruptly finished.  I thought I would have been jumping for joy, but it really is bitter sweet!  My family doc told me these feelings are very common.....we're initially thrown an unexpected curve ball, we become surrounded (protected) by a large medical team who move things along very quickly and this disease becomes our "life" temporarily, tx finishes and then we're expected to revert back to our previous life and told "see you in x amount of months for a check-up".  I don't know about the rest of you but I'm having trouble moving forward and I've only just finished chemo......I can't imagine how difficult this will be after rads finish, and then Herceptin!  I have been off work since my first chemo started and now can't wrap my head around going back.  My doc thinks I have post-traumatic stress disorder and is helping me work through this with "talking" appts.  This truly is a disease of the body, mind and soul! 

    I'm grateful for this forum and this thread in particular......it's nice to have a place to express all of this because although our family and friends are supportive, they don't really understand all of the emotions we're experiencing like our bc sisters do!

    To all the women just starting this journey......we all have our own unique set of side effects and handle things differently, so please don't let my post scare you.  I have learned a lot from these threads and would love to help answer questions and concerns that any of you may have...... knowledge is power and we need to be our own advocates! 

    Hugs and warm wishes to all.....

    Sandy 

  • yasminv1
    yasminv1 Member Posts: 33

    Wow this thread sure did get really busy! How awesome is that! Smile Hello to all the new people that have joined the thread.

    Well, I finally received my Oncotype DX Score. It was 18 putting me in the intermediate group. Due to my age (31) and the complex dx I had (multifocal and multi BC) my onc and I have decided to go with 4 rounds of AC. My doc left the decision to do chemo up to me. He said research shows even with low risk cancers young women under 35 should be considered high risk. After doing research, talking to people in the medical field and seeing so many studies that state women under 35 with BC have biologically more aggressive cancers, I felt I needed to do everything available to me to fight this terrible disease. I could not believe that only 2% of all BC patients are under 35. That's a really small data pool of people.

    Does anyone have any suggestions on getting ready for chemo? I know that there are many tips on the chemo forum but wanted to see if anyone has any other suggestions. I have extremely long hair. I am not sure what to do with it. I don't want to shave it...I'm just not ready for that just yet.

    mrsphilly - I Hope you are having a smooth recovery.

    Take Care Everyone!

  • pkb143
    pkb143 Member Posts: 69

    Hi, everyone, it appears that Class of 2009 is my group, although I got here in a roundabout way.

    I had numerous new calcifications in my right breast appear on my annual mammogram (which was also my first digital one) in early March of this year. Then a diagnostic mammo, stereotactic needle biopsy and breast MRI followed, with a diagnosis of DCIS and other suspicious areas. The decision was really left up to me: lumpectomy or mastectomy. For various reasons which included family history (Mom had breast cancer at age 72), desire to NOT have radiation, etc. I immediately knew I wanted a mastectomy (right breast).

    I waited (impatiently) until June 16 for my mastectomy. (My DH is a college instructor and we wanted to wait until classes were out, among other things). YES! that wait was torture, but the operation went very well. My plastic surgeon installed a "pain pump" to which I give much credit for my not needing one single pain pill after coming home.  I also had TE's placed and just got my first "fill" last Tuesday; I'll be going back every week (1 1/4 hr. drive one-way) for fills for 6-10 weeks or more.

    The post-surgey path report came back as extensive DCIS plus one very small area (5 mm) of invasive breast cancer. My breast surgeon has counseled me several times since the surgey and says I won't need radiation; however, he has suggested I consider taking Tamoxifen, Arimidex, Aromasin, Femara or Evista. We've discussed my recurrence risk rate (I think it's about 10%), the benefits and the side effects of each. I've extensively googled all of them and just when I think I've found one I can live with, I find a contraindication or side effect I don't like.

    I'm 60 and had a hysterectomy at 35. Since then, until March of this year, I've been on HRT (actually, estrogen only). I've been suffering through hot flashes and some of the other nasty stuff from the lack of estrogen. So I'm really, really not wanting to take anything else...for what I think is a relatively meagor benefit (reduce risk from 10% to 5%).  Maybe I"m crazy, but I haven't heard anything yet that really convinces me it's going to be worth it!

    ~~this thread is great! Thanks, Pam!

    ~~I'm lucky enough to have visited both Nova Scotia and Ireland. I loved them both, but have to say I'm partial to Ireland (Irish roots). My great-grandmother was a Shannon.

    Oh yeah, I've heard the "lucky" speech, too. I realize I am "lucky" that having the DCIS led to the discovery of the invasive BC, and I'm lucky both were discovered very early. I'm lucky that I don't have to have chemo/rads. Ok, then, why can't I be lucky in the casino?

  • magob
    magob Member Posts: 242

    I'm jumping into the conga line, class of 2009!  My name is Mary, and I live in Texas.  Age 46. Diagnosed May 18, Lumpectomy June 11, axcillary dissection June 18.  Invasive ductal carcinoma.  1.2 cm.  7 nodes removed, only one had micro traces.  On paper, all were node negative. 

    Oncotype testing and meeting with MO took FOR EVER.  July 27, met with oncologist.  Oncotype score 20, recurrence rate 13%.  Family history of cancer on both sides of family tree.  Decided to do chemotherapy. 

    Worried that so much time has passed since surgery.  Does anyone know what the risk is when one waits so long to start treatment?  Waiting to have port installed.  (That sounds like something that's done to an appliance, not a person!)  Hope chemo starts quickly after that. 

     Yipes!  Stay with me, sisters!   

  • lovemyfamilysomuch
    lovemyfamilysomuch Member Posts: 762

    We are with you MAG, this is a journey best travelled with friends at our side!  Love and support to you!

    Ellen

  • Beach
    Beach Member Posts: 16

    Yasminv1--If I was your age and had your dx, I, too, would choose chemo.  It's hard but doable and why not hit the beast as hard as you can.  Best tip I can offer is sucking on ice chips during the chemo infusions......stopped mouth sores from starting....however, I will never go near an ice chip again Wink.  As far as hair goes, gradual steps worked best for me.  By approx. 10 days after my first tx it became quite lifeless and I couldn't do anything with it, so I had it cut to about 1/2".  One week later it was falling out and making a mess, so I had it shaved to about 1/4".  About a week after the 2nd tx it basically all fell off in the shower......by that point, I was glad to have it gone.  During all this I decided that wigs weren't for me so I bought myself various head coverings.  I only recently decided that I might need/want a wig so I bought myself one a few weeks ago.......still have not worn it in public, but getting closer.  Good news is that I'm just over 6wks out of chemo and my hair is growing.....now if only my eyebrows and eyelashes would follow suit Undecided!!

    Gentle hugs to all of you who are in or just joining the Class of 2009.....we'll fight this together!!

    Sandy

  • jburke1
    jburke1 Member Posts: 258

    Going today at 2pm for dr. appointment to get full path report from surgery. Pretty scared and nervous.Trying to make a list of questions to ask. Any suggestions?

  • BoyMom_2009
    BoyMom_2009 Member Posts: 5

    Hi Ladies,

    This is my first post.  I was diagnosed with IDC and LCIS in my right breast on July 22, 2009.  Since that time, I've undergone a bone scan, CT of the chest, stomach, and pelivs, and a breast MRI.  All scans were negative.  They are telling me that I am a stage 2A.  Since the diagnosis, my nerves have been rocked to their core.  As with most woman who have no history of breast cancer in their family, I was in shock to find out after my very first mammogram at age 40 that I had it. 

    Waiting for test results caused me a great deal of distress. I've had mini panic attacks and moments where I literally shook with fear.  When I felt distressed, I've come to this board and it has helped me greatly.  There are so many brave and wonderful woman on this board.  I am thankful to have found this forum. I really believe that no matter how much a friend or family member loves you, they can not fully understand what we must go through to fight this disease.    

    Although I wish that I never had to deal with this, I'm looking forward to being supported and being a support to others during this journey. 

  • carolehalston
    carolehalston Member Posts: 8,091

    Boymom, thank goodness you had the mammogram at 40.  Good luck with your surgery decisions and treatment.  I wish you the best.  Like you, I appeciate the information and support on this web site. 

  • nancypat
    nancypat Member Posts: 239

    Hi Ladies,

    I just wanted to interject that chemo is not doable to all of us.  Five days out of my 2nd round I was admitted to the hospital suffering from anemia, edema, and pneumonia which developed into pleural effusion.  I had to have twelve blood transfusions and an open decortication of my right lung ( your ribs are separated and the entire surface of your lung is scraped to remove an orange peel coating which developed due to the pleural effusion, tubes nearly the size of garden hoses are placed into your pleura, come out of your side from between your ribs and empty into boxes, not drains).  There is a considerable mortality rate from this procedure and I consider myself lucky to be here.  Ergo, no more chemo.  My hair is coming back black in the back and white in the front with a black question mark from my forehead to my crown so I guess God is still thinking. lol.

    Anyway, I don't want to scare anyone but I would like everyone who is going to do chemo to be fully aware of what they are going to be infused with, the rate, the steroids, the anti allergy drugs and the SE's to be expected.  If you have chills (even without a fever) call your onc immediately.  If you have questions about any other SE's, call your onc no matter how insignificant you think they might be.  Your health is what they and the nurses are being paid for, and that came from the mouth of my nurse. 

    Good luck to all!

    Nancy

    P.S.  I forgot to mention that I spent the entire month of June is the hospital and am still having problems with my lung.  I have to see my pulmonary specialist tomorrow and since I know from the CT scan last week, I have fluid building back up in my lung and am just dreading him draining that.  At least I know from experience that he is very good and extremely gentle.  If it means being rid of this constant pain then I look forward to that aspect.

  • carolehalston
    carolehalston Member Posts: 8,091

    Nancy, what a nightmare!  I'm hoping chemo isn't recommended treatment for me.  I won't know until I get my oncotype dx number.

  • heatherw
    heatherw Member Posts: 2

    Hi everyone,  I'm new at chating and new at breast cancer.  My story is such,  I'm 39 had 1st mam.  2 masses were found on 7-7-09  Biopsied and confirmed on 7-13  followed by onicol. surgen visit 7-24.  On 7-29 portacath was placed and in doing so lung punctured and infection followed.  Moving on 1st chemo. 7-31 .  Hard for me, yes but oh so THANKFULL to know and start to fight this thing.  I am doing chemo. 8 treatments followed by surgery.  Thats as much as I've absorbed at this time.  My hair will be gone this time next week.  Going to get a real short cut to get use to all the face.  I know cancer is scary but I think we are all going to be moved in a big way as we walk throu this.  My prayers and pos. thoughts are coming your way ladies.   I encourage you to not be to hard on yourselves and peace be with you.

  • nancypat
    nancypat Member Posts: 239

    Hi carole,

    If your doctor does recommend chemo then I would suggest that you do it.  Just remember to dot all of the i's and cross all of the t's beforehand.  Know what to expect so there won't be any surprises.  I know I am a fluke but it can happen.  I will be praying for low scores for you.

    Nancy

  • heatherw
    heatherw Member Posts: 2

    Hi,  I also have multifocal with my cancer and I am doing chemo.  I will be doing 2nd treatment on fri.  Be easy on yourself.  You have to see how you respond to it.  I suggest go home and relax.  Unlike myself I felt alright and was outside a little too long and started feeling bad.  Trust me your body will tell you.  This is a time we will learn from our bodies.  Keep crackers or whatever calms your tummy.  Make sure you know how to take antinausea meds and use them!!  It's scary I know and for the hair.  I'm getting my hair cut real short today so I can get use to all this face.  I have a cute long haired wig and a breast cancer baseball cap.  Make sure your meds will make your hair fall out.  I know mine will byetween day 17-20.    Wish me well and I you.  Take care and I'll be watching for your report. 

  • Ainm
    Ainm Member Posts: 362

    Hi to all the new comers. This is a rocky road but the ladies on this board are good to hold your hand over the rough patches - take comfort in knowing that you are not alone. I was diagnosed 8 months ago and life has changed since and I know I still have a lot to get use to. The hair thing isn't too much of an issue with me - I use buffs which are great and I do have a lovely wig which I rarely use!!! 

    My biggest issue is trying to live a life that will help prevent recurrence - that means I have about 100lbs to lose and I must change my lifestyle to include exercise and a healthier diet - that is actually a huge challenge for me!!!

    But I will give it my best - good luck to all!!

  • giantocr
    giantocr Member Posts: 2
    Ok Pam I'm in.  Dx 6/22/09, Lumpectomy 7/30/09, IDC1.6cm, Stage IIA, 2/14 nodes, ER+/PR+, HER2- I have an appointment with an oncologist in 10 days from now.  I guess that means Chemo and Radiation?
  • giantocr
    giantocr Member Posts: 2
    Ok Pam I'm in.  Dx 6/22/09, Lumpectomy 7/30/09, IDC1.6cm, Stage IIA, 2/14 nodes, ER+/PR+, HER2- I have an appointment with an oncologist in 10 days from now.  I guess that means Chemo and Radiation?
  • mrsphilly
    mrsphilly Member Posts: 5

    Tried to go to school to begin setup of my classroom.  No air conditioning in the building because they are doing asbestos removal and using the electricity from my classroom.  So I got out of there as quickly as possible.  I already have enough health issues.  Hopefully we will have air on Thursday night for open house for parents and students.  My room won't be ready, I will let the kids help when they come next week.  Then they will know where everything is.  I teach middle school FACS, we used to call it Home Ec. 

     I just hope I can make it through for the first 3 days next week.  Then get a weekend off.  Luckily I have a great person to subatitute for me who also taught the same class.  Actually it was her classroom before she retired and I took her place.  This really helps me feel better about taking the time off that I will need.

    Hang in there everyone and will will make this journey together.

    Mrs. Philly