Class of 2010

etk02038

Michele- Wow, microfiche...I guess it is a good idea to keep all our own records!

Katie-Sorry about your rough day back. Glad your daughter is better. Pink eye was the worst thing when my son was little. We had to sneak in his room when he was sleeping and try to get the cream in his eyes. It never worked well!

Jackhope- I guess a trip out for some wine is on the list today. 

MzJ- I hope your swelling continues to go down! Positive thoughts to you.

LINDAGARSIDE

Hi PEEPS...nice to know how everyone is doing! 

I think I need something to kick right about now.  You know how I've been patiently WAITING for my Her2 test to come back?  Well, as it turns out the reason it took so long is because it was actually "Equivocal"...which means it could be positive.  Now they have to do something called the "FISH" test to conclude if it is positive or not.  I'm sure that if it IS positive that will mean chemo.  I do not know if Equivocal means yes or no to chemo...does anyone know the answer to this question?  I am guessing that once the FISH test is concluded the oncologist will know if chemo is recommended or not.

When I met with him on Feb 3rd he said, "Your numbers are so good, I'm almost certain your Her2 test will be negative".  On Feb 4th the report came back.  I found out about the adendum report dated Feb 4th from the breast health nurses...not from the cancer agency.  I called the cancer agency (after talking to the breast health nurse) and they said they didn't yet have the report dated Feb 4th!  The cancer clinic said they will track down the report and will see if they can get me a copy.  I asked how long FISH tests took but the person I spoke to wasn't exactly sure...boo hoo for me ....but good soldier that I am...we fight on...right???

KatieMom

Linda - mine was equivocal too and then came back neg.  The fish test took a while I guess, I wasn't too concerned about because I was already headed back to surgery.  I think you will still skate, don't give up the hope.  NEVER give up any hope and if the hope is for no chemo, then don't give up that hope...  

Much better day today, the pink eyes are beginning to clear and I have gotten word that I can finally pick up my mom's death certificates which crassly means that we can start to divy the estate.  Gotta look for the good...

Katie 

LINDAGARSIDE

Hi Katie.  My goodness you are going through SO MUCH!  You are an amazing woman my friend.  Amazing indeed.

Your Her2 test came back equivocal as well?  That's interesting.  And then it came back negative?  I am curious what makes the FISH test more accurate or detailed?  Hmmmm more research needed I fear.  LOL. 

While there is no cancer on either side of my family, I have to say that I am the 4th in my immediate family to be diagnosed with a cancer.  I have 6 siblings and 3 of them have had serious cancers...and I am thinking that I (we) may carry the cancer gene.  I've actually had this thought lurking in the back of my head since I read about the Her2 test to tell you the truth.  I mean...don't you think it strange that out of 7 kids that all of a sudden (in the past 6 years) 4 of them are diagnosed with cancer?  I am the only breast cancer...the others are more serious and unusual.  I have a feeling that me and my siblings (combination of my mom and my dad) may carry the Her2+ gene...that's just my guess right now.  And then I think of my son who has the very unusual auto-immune disease (Adult Onset Stills Disease).  I can't help but wonder if it is all somehow connected if you know what I mean??

KatieMom

Seems like your family would be a haven for some researcher.  It MUST be all related.  I would be so curious as to how the cancer gene test comes back for everyone in your family, son included.  I just don't think whole families have health issues that large.  There is a bunch of cancer in my family, but nothing that serious.  So far nothing in my sibs. I think it is all really interesting.  I just wish I weren't part of it, if you know what I mean

Katie 

me2u

thanks irish47, linda, jeannie and michele for the encouragment and buffet scenario, i have definitely changed my selection on what goes in and OUT of my plate and to be honest, i should be grateful that things are moving fast to get rid of these suckers right

Everything is almost back to normal, hubby back to work, 2 boys to school and me lazing at home, catching up with my long 'to-do' list very slowly....haha.

signing off from a sunny and humid singapore,

jessica

me2u

hi linda, i have HER2 equivocal and was not able to proceed for FISH cos the pathologist said my cancer tissues/cells were too small and insuficient to be tested

so anyway, am gg for chemo and will starts next wed.

LINDAGARSIDE

Hi Me2u,

Well, you may have company!  A few of our 2010 class of soldiers may indeed be assigned to the chemo mission.  I will try to be as positive as possible and keep focus on the fact that this is a life saving mission, right?  Let's hold hands though....LOL!!

jakhope

Hi all- Radiation still going by with no SE. I don't understand. I looked up my paperwork and I had my ER and PR test, and the HER2 test all done, FISH test, all with my biopsy results in December. Before even my surgery! The Oncotype test they told me , do to insurance rules, they could not be sent out until two weeks after my surgery. They do this test, the Oncotype, if there is question whether or not chemo would be beneficial. If your tumor is large or high grade, and you are HER2 positive, there is no sense to the test, as you will need chemo for sure. It makes sense to pay for the test for insurance, as it will save them and the patient the cost of having to go through it with little benefit.I do not understand the HER2 equivocal....means?

Anyone else start any treatment yet?

Linda- anxious to hear your results and treatment planning.

I like the holding hands together...

LINDAGARSIDE

Hi GP!  Glad no SE from Rads!  LOL.  We soldiers talk in code, don't we? 

I read and then re-read your note and it looks like you are saying you had all of your tests before you had your surgery?  How can that be?  How can they test your results/pathology without having the tumor out of your body?  Am I missing something soldier?

My oncologist did not think I was even going to have to take tamoxifen when I first met with him.  He really thought my case was very "minor"...but the Her2 results were still not back.  They came back the day after I say the oncologist.  I think he was a bit surprised...but anyway...he ordered the FISH test and it will take a week to come back.  I should know by next Tues or Wed the results.  Let's hope it is negative.  A positive HER factor doesn't seem to be a good thing in the cancer game. 

Tomorrow I meet with the radiologist for the first time...probably for my tatoo marks?? 

How are you doing?  Everything going well?  We are getting geared up for the Olympics over here...yea Canada!!!!

LauraM

Linda!  Good luck tomorrow at your appt.!

 Jakhope - I also had all of the same test as you as a result of my biopsy.  Found out that I was pr and er + and HER-, also that they found 1 cm of IDC along with the DCIS that was high grade, that I went from stage 0 to stage 1 and that my onc score was intermediate.  I also found out that they didn't get clear margins so I am hoping that they don't fine anything new when I have my dmx in a week and 1/2.   I still am not sure if I have to have Chemo, surgeon didn't think I did but will have to wait to see.

jakhope

LauraM- a stage 0 to a stage 1 is still not high grade the grad is another story.I believe the stage is by the size of the tumor and grade is how aggressive. Did you have your Oncotype testing that you know it is intermediate? do you know your number? 

Pattyfish

Hi, Jakhope and fellow PEEPS and a welcome to me2u,

The way onc docs interpret ONCOTYPE scores sound like they vary.  My ONC score is 16 and the doc said no chemo.  I am finished with rad--I did the 5 day mammosite--and now all I do is take Femara at night.  I see my onc on the 19th and I don't think that will change..  

I received a copy of my path report.  I even have CATs of my mammosite area.  Always ask for copies--all they can say is no.

LauraM

Jakhope - I think I didn't explain it very well.  When i was first diagnosed, I was diagnosed with DCIS and the biopsy in November showed it was Comedo type, high grade.   When they did the lumpectomy the end of November they found about 1 cm of IDC and extensive DCIS, they didn't not get clear margins in 16 out of 20 areas tested of the 4.5 cm of tissue they removed.  When they did the pathology test, they told me that the IDC was PR and ER + and I was HER -.  They also said my Oncotype was a 19. Intermediate, but right on the cusp, so I may not need Chemo.  They are also doing a SNB at the time of my dmx so hopefully that will all be good.   I hope this helps.

etk02038

Jakhope-glad your rads are going well without SE.

Linda-good luck with your appointment tomorrow!

I am now 2 weeks to the day of my second lumpectomy. I am still waiting for results. Since it took 3 weeks from the 1st lumpectomy to get those results I am about to lose my mind. I even dream about it. I know they are having problems again figuring me out. How different can my cells be? I am near Boston, the hub of some of the best medical facilities around! 

If I don't get a call by tomorrow I think I will be calling up screaming/crying or both at someone.

Ellen 

LINDAGARSIDE

Hi PEEPS...I just love it... PEEPS...LOL

I went to the radiologist today and that was an interesting visit.  I really liked her bed side manner and she was clear/frank and honest.  We are waiting for the Her-2 test to come back.  If it is positive, we will need to commence chemo asap.  No rads until chemo started.  But, if HEr-2 test is negative, we can get going on the Cat scans and other preliminary things that need to be done before the rads.  I may be included in a study where they do rads twice a day for a week and only radiate the cancer site, not the whole boob.  This will be compared to the other people in the study who will have their whole breast radiated for 6 weeks, once a day.  They are looking to see if there are better results doing one or the other.  Don't know which group I would get placed with (it's a coin toss)...but perhaps the one week thing would be good.  They are going to do a chest exray and a pelvis/stomach ultra sound as I've been having a few issues all over the darn place it seems like.  LOL!  Tonight, Rod and I are actually going to go to the gym/swimming pool.  I will do the gym and he will do the pool.

Ellen...second lumpectomy!  Ugh...but I can understand why they are doing it...steady on, soldier.

GP...glad you are not having any SE.  Good on ya!!!  Talk to everyone soon...take care my pink peeps.

LINDAGARSIDE

Jakhope!!!  The FLA Panthers are playing my beloved Canucks right now!  It's still the first period and the score is zero zero

jakhope

Linda- Just saw it and now I will be watching your beloved Canucks and our Fl Panthers! So glad I just checked in! Darn you just scored!

 I am glad you are Happy with your Dr. I sure hope your test is negative on the HER. It stinks you have had to wait so long. why is your treatment in a study? Is there an issue for you insurance coverage? My co-pays are coming in like crazy. The bill for the overnight hospital for my surgery, the insurance kicked back and said I needed to fill out the questionnaire they sent. What questionnaire? The bill for $21,000.00. I called and said I do not have any other insurance and they said they would process it again. Nobody wants that bill, I guess!

Ellen- That really stinks to have to have had a second lumpectomy.I hope you get your answers real soon. I know how hard the waiting is. Worse than the treatment. Hope you got some answers today.

Laura- sounds like you are really going through a lot too.  

We are holding hands together.

Jeannie

jakhope

Linda- the Canucks a much better team. Good game!

etk02038

Well, I FINALLY got the call early last night. The good news is the margins are clear just a lot of B9 stuff there. Also the left excisional bx is the same B9 fibrous stuff. The bad news is 1 of the sentinel nodes did come back as having isolated cancer cells   The BS said they do not do further excisional lymph node dissection for isolated cells. Of course, I was searching the internet last night and yes that does seem to be the case. BS said most likely chemo with or without oncotype testing because of my age (I guess they consider 48 still young-unlike my son who thinks I'm old)

I see the Oncologist team next Wed and most likely will be having Chemo. As strange as it seems I am relieved. I won't be in that gray area trying to decide about chemo and always having anxiety about making the wrong choice.  I am so relieved about no more surgery-two lumpectomies and excisional bx and snb was quite enough!

Thanks for listening,

Ellen 

LauraM

Good morning Ellen -  I am glad you got your results and the margins were clear but bummed for you that the node was positive for isolated cells.   When they first did the SNB did it come up negative in surgery and then did they send it to the lab and it came back then as positive?

I am glad that you don't have to have any more surgery coming up, it will give your body the time it needs to heal.

Take care of yourself and get plenty of rest.

etk02038

Thanks Laura. Yes, it came up negative at surgery. I am one of the lucky ones that then it comes back positive after pathology! I think my BS said 2-5%  chance that would happen, so I was a little surprised.  But I feel much calmer today nowing I am going to be moving forward and not still hanging out in wait mode.

Ellen

LINDAGARSIDE

Hi Pink Peeps:

Ellen, yahoo...now you know the game plan and your weapons...start the good fight...we're with you all the way.  Take that...and THAT  you %#!*&=**%&^#  cancer cells!

GP:  The Panthers weren't all that bad...it seems the goal post was their real enemy...hard to believe how many times they almost scored but the goal post got in the way!

Laura...Your surgery is coming up this week...I am thinking about you and hope everything comes out ok for you...hang in there.

Patty Fish...I signed a release form yesterday at the cancer clinic and now they can send me any type of document at all that I want from my file.  I immediately was provided with a copy of the report that shows my Her-2 result was a score of 2+...which makes it equivocal.  This report was given to the agency on January 20th...yet the FISH test was not ordered immediately.  I think that is why I'm waiting so long.  I can't prove my theory though so I have to let it go.  But it's funny, isn't it?  We need to have 100% trust in our oncologist.  Why he didn't say to me on Feb 3rd (when I met with him) that my test result was equivocal and a FISH was needed?  All he said was (when I asked him before he was about to leave) "it's not back yet but I'm sure it's going to be negative with numbers like you've got"...what the heck does that mean??  I don't like to be "talked down to" and I think he thought I might not know what he was talking about if he said the word "equivocal"...LOL..he hasn't heard about our discussion board and how we know gathering knowledge is power...right peeps?

Jessica...how are you and sunny Singapore?  Don't forget to watch the Olympics...I live on Vancouver Island...just across from the mainland where the event is happening...yahoo...Go Canada Go...sure hope we win at least one gold medal.  We suck at a lot of things because we don't get funding for sports or for atheletes.  The atheletes have to work as well as practice their sport so they don't get as much time as others might who get sponsers and can practice all day long.  Oh well...it's about the spirit of the game and not who wins or looses...right?  (But why do they have gold/silver/bronze medals?)  LOL

Michele...did you get all of your results?  You must feel like a detective now.

Irish...how was your path report from your lung biopsy?  I've been thinking about you.

I will be taking part in a study!  Radiation to either the exact area of my cancer site twice a day for a week...OR....radiation to the entire breast, once a day for 6 weeks.  There is evidence that it might be just as effective to treat only the effected area and to zap it twice a day rather than the slow approach.  I have no idea if I will be put into group "A" or "B"...but either way it will be good to feel like I'm helping future pinks sisters. 

I don't know when I will be starting radiation as we are waiting for ther Her2 test results...because if it is positive I will have to start chemo before rads can begin.  I hope they know soon.  I'm afraid Mexico is out as the radiologist doesn't think I'll have time...and thinks the sun will not be good for my skin just before radiation.  Good point.

Tomorrow night we're having a wee party.  Lots of friends in for a smorgassboard...but it is a potluck deal because everyone knows I am NOT up to cooking a lot.  LOL.  We like to entertain and so everyone was very agreeable to a pot luck situation as usually we put on a big spread.  This time I am going to make a turkey..a ham and scalloped potatoes.  Everyone can put their dish on the table and we'll just dig in and walk around the house drinking, eating and telling rude jokes.  LOL.  Should be fun.  I think we'll call the evening "LOVE and LIFE" (Valentines the next day so might as well throw it in there...)  Take care everyone....

LINDAGARSIDE

OK PEEPS....drum roll please: DRUMMMMMMMMMMMMMMMMMMMMM

My oncologist just called and I am Her2 NEGATIVE!   My final score on the FISH test was 1.4.  This is good news and now I feel like celebrating.  Yahoo.  And thank the Lord above.

etk02038

Linda-Awesome news!  Have a great time at your party and celebrate!!!

LauraM

Linda - That is great news!  I hope this sets the stage for the rest of the month!   Have a wonderful weekend!

jakhope

Linda..Just read your final post. YAHOO!!!!!!! I was thinking along that is what it would be. I doubt you will need chemo. Go celebrate girl!! Have an awesome party!

Ellen- I had isolated cells too around my nodes and there was concern but, with my Onco score, I do not need chemo. My radiologist said any isolated cells would be gotten with radiation. I hope that is for you. We have about the same diagnosis and if your grade is low you may not. Glad you are done with the surgeries. That is enough! Will you have an Oncotype test? You are 13 years younger than I, may be a different call.

LAURA- We will be thinking of you this week. What day is your surgery?

Two days off for me for radiation. Still no SE.

Hang in there all you pink Peeps. Enjoy the weekend as best you can.

Jeannie

LINDAGARSIDE

Hi GP...thanks for your words of support...and you can count on me celebrating!  I'm so darn happy right now I could spin in circles if I wasn't afraid of falling and breaking my hip.

Did you hear the sad news about the young Russian boy who was killed on the louge?  It is such a freak accident.  Don't know why they didn't have pads around all the poles or beams near the event...how sad for the family.  I was at the grocery store today and they were talking about the sad accident and I said to the cashier, "Isn't that so sad?" and she said to me, "It must have been his time to go".  I said, "I bet his mom is thinking that. I bet she thinks he was far too young to go".  She didn't disagree with me.  I'm getting a little bit tired of people saying "what will be will be" or "it was meant to happen"  Breast cancer...and fighting this thing...is giving me a different perspective on some things.  I am starting to think we are given information and tools and it is up to us how we use them...or if we choose to use them.  We are not God's little puppets acting like mindless fools, waiting for "our time".  That way of thinking is such a cop out to life.  Anyway, I've had my vent for the day.  Nobody has to agree with me...I'm just saying how I feel about it.  I didn't know I felt that strongly until the cashier said it was "his time" to go...thanks my pink peeps.

etk02038

Jakhope- Yes, my BS was emphasizing my age as a strong indicator for chemo now. I was already discussed at the tumor board once and that seems to be the agreement. Will find out for sure Wed when I meet the the Oncologist. Of course, I have been doing my own research and after finding out about the Danish Study I think I want chemo. Here is a link.

http://articles.sfgate.com/2009-08-13/news/17177515_1_lymph-node-breast

Linda, I so agree with you. I am certainly not waiting for my time. My BC didn't happen "for a reason" other than biological or environmental. I didn't need "a wake up call". I have my priorties in order and have the life I want!  All that said, I think someone was watching out for me while this cancer was becoming so. My husband all of a sudden quite his corporate job last fall to own his own business. It has been and continues to be a struggle but he and we are all less stressed as he his home a lot more and is no longer some corporate puppet! My 9 year old boy has had serious emotional/mental issues since the age of 4. All of a sudden since last summer he seems like an average happy boy. A handful at times but no signs of the bipolar disease 3 therapists tagged on him.  And speaking of "time to go". My mom won't go, bless her. She has late stage Alzheimer's and if it is anyone's time to go it is hers. My sisters and I have lost our Mom years ago and we are just waiting for her body to follow.

Ok...that was my little insight at 5:15 in the morning. See what happens when my dog wakes me up to pee and eat at 4:00 a.m. 

KatieMom

Ellen, Thanks for posting that article.  Very interesting.  I am thrilled to be "getting out " of chemo at this point with 0 nodes positive, but the niggling worry will ALWAYS be there.  As we all know, this worry and wait thing is the very hardest part.  I still haven't met with my radiation onc.  Her office was supposed to call me, but hasn't.  I will call next week and push the show on the road.  

 On a brighter note, the child's eyes have cleared, but the flu set in.  She was home from school all week and miserable.  The hubby and I have a hot date tonight and she is supposed to go to her gymnastics for Parents' Night OUt.  I SO want to go, so I need a few crossed fingers for a good health day.  

Sorry about your mom, Ellen.  I lost mine last month and it has been harder than I thought it would be.  She was in hospice and ready to go, but still mentally all there.  Her body gave out, just the opposite of yours.  It is hard to be without her, especially now through breast cancer, sick kid, kitchen remodel, just the run of the mill stuff you want to talk to your mom about.

Linda - hope the Olympic buzz is fun.  WE loved having the Olympics here in Los Angeles, just a wonderful time of city bonding and FUN.  I will watch the Opening Ceremonies today on DVR.

Have a good day, all.  Happy almost Valentine's Day!

Katie