Class of 2010

Hi Cinamon, I agree with your husband...you are NOT crazy.  Who wouldn't be confused when you are receiving different opinions from experts?  This is your LIFE...right?  Of course you want to be sure the treatment plan or decision is the very best choice for you...and this concept does not make you crazy...it makes you logical and wise....and most of all...a survivor.

I am not an expert...but I will give you what my gut says:  If you are pre-menopausal, throw everything but the kitchen sink at this sucker.  If you are post-menopausal, perhaps a lighter form of chemo mixed with tamoxifen or other hormone blockers? (see a post from snowangel datd Feb 10, 2010 at 3:13 pm).  The topic is "Stage 1 Grade 3  Er- Pr- Her+"   While this particular topic does not reflect your situation, the discussion about different types of chemo options might be intersting for you to consider.  Personally I was going to take that particular post to my oncologist and ask for a similar type of chemo if my Her-2 test came back positive.  (I was equivocal and yesterday the results finally came back after having the FISH test, showing my score as 1.4 which is negative).

Good luck with YOUR decision.  You will get lots of advice here...but at the end of the day it is your life and you are the one who has to live with your decision.  Try to imagine or think each situation out in it's entirety...and that might help you make your choice.

Good luck to you...my fellow peep.

Cinnamon, not only are you not crazy, you and I think alike. Had my oncologist said that I had an option (well, I always have an "option," don't I?), I would have STILL opted for the chemo.

I don't care what a piece of paper says regarding percentages low (onc scores), this is cancer. Cancer doesn't give a shyte about what you oncotype score was. The test results are only "projecting" and, granted, it's an educated "guess," but that's still all it is. Even if it were marginal, and I mean really really really marginal, I would still opt for the chemo.

Every little bit thrown at this to either delay or reduce the chances of it coming back ARE worth my life. Even if I had been a 1-percenter. Chemo is no magic bullet, even then. But it's a darn sight closer than doing nothing else.

I hate the thought of chemo. It wrenches my stomach just thinking about it. But it will pass. Whatever the side effects are, they will pass. It's well worth it to me.

Cinnamon I agree with the ladies. Of course you are not crazy. If you are then I am more so. I was almost relieved that they found isolated cells in 1 sentinel node so I am sure to get chemo instead of being in that grey area. I don't think they will even do the oncotype because it won't influence my or their decision. I am 48 and pre-menopausal so even before the sentinel node came back positive my BS was sure the oncologist would say chemo. I am glad I have a team that is thinking like me and wants to throw everything at it while I am still "young"!  As by Bs said "you have many many years ahead of you to be cancer free". All in all I think we need to make decisions that will give us as much peace of mind as possible.

Ellen 

Cinnamon - You are not crazy.  I think the hardest part of this whole thing has been that there are so many choice that we have to make while fighting this disease.  You need to go with your gut feeling, that is the only way you will know that you are doing everything possible to fight this thing. My thoughts and prayers are with you as you make your decision.

Hi peep...

I wonder if etk2038 is being offered chemo due to having one positive node, combined with her young age?  It would be interesting to hear from her...certainly I for one want to throw everything but the kitchen sink at cancer...but if I don't need chemo...then I'm thankful, that is for sure.  Having said that, if it was recommended to me to take chemo, I might push even you out of the line if you were ahead of me or blocking my way to the chemo line up!  

I don't know if you've every been to a concentration camp bedore?  I went to Terrazin about five years ago (outside of Prague).  It moved me to my inner core.  I still think of the things I saw and felt from that important journey.  God bless you for going...it is important that we never forget so that it will not be repeated.

Oh a happier note...I go to get my first tamoxifen prescription today.  It just struck me how odd it is that I am saying it is happy to go and get my cancer drug for the first time...LOL.  I've come a long way from the first post I ever made to this site...when I thought I was going to die and was planning the music for my funeral.  This site is very helpful, for sure. 

Take care my fellow peeps...! 

Hi Ellen.  I think you've really hit the nail on the head.  I've noticed that some onclolgists recommend chemo when others recommend no chemo and the details of the cases seem almost identical. 

It will be interesting to see what your oncologist says in response to all your questions, for sure.  Hope you don't mind sharing your results?

I now have a crazy thing...a tongue lesion.  Who knows what it is or why it is there...but it may hold up things for a bit. I have to see another Dr tomorrow about it.  (I REFUSE to even think that it might be cancer popping out in strange places all over my body...like a mysterious and evil rash).

Unfortunately, there is no "right" answer. I am 50 and was diagnosed in mid September. I had two lumpectomies and finally a bilateral mastectomy in December. Diagnosis: IDC, 2.5cm, Stage IIb, Grade 3, SNB, 1/20 nodes, ER+/PR+, HER2-. I assumed I would have chemo because of the positive node but based on my oncotype score of 16, which is on the lower side, but still in the gray area, my onc and the tumor board recommended no chemo. I'm taking tamoxifen and just started Lupron shots to suppress my ovaries. I know that if I had demanded chemo they would have given it to me. I did tell my onc that I was confused because there are so many others with no lymph node involvement that end up doing chemo. It depends on the doctors' experience and often comes down to personal choice. Good luck!

Hi Pink Peeps:

I'm happy to say that my tongue lesion is just that...a "boo boo" and now have some sort of ointment to make it all better. 

I received the results of my chest exray...yahoo...all clear.  Started to take tamoxifen today...no SE yet.  I guess it's far too soon to tell.  LOL.

March 1/10 I go in to get my tatoo and a CT in prepartation for my radiation treatments.  Finally things are moving ahead.  I am not a patient person when it comes to waiting for results...waiting for appointments...waiting for phone calls.  UGHHHHHHHHH

GP...so glad you are not having any noteable SE from radiation...and you are 1/3 the way through it!  yahoo.  Did I tell you I've agreed to go into a study?  I may be picked as the group who will get radiation twice a day for a week, just on the cancer site...and not the whole breast.  The other half of the group will be getting radiation for 6 weeks, once a day to the whole breast.  I hope I get in on the one week study.  Wouldn't it be funny if I finished before you even though you started so much sooner?

I am already taking tamoxifen...started today.  How come you are waiting until after your radiation for your estrogen blocker?  Is there a reason why you are not taking tamoxifen?  I hear it is the better drug...but what the heck do I know?  I'm sure you will be grilling your Dr about this...let us know his response.  I have big ta tas as well...42D.  They took out 10 cm (even though the tumor was only 1.8 cm)...and you can hardly tell the difference...LOL.  No wonder I had clean margins...they took out a huge piece of meat there didn't they?

The Olympics are on right now and I'm really enjoying them...even though we are not winning too many medals...but the excitement is so intoxicating don't you think??

Hi Peeps,

I have my second Oncologist appointment tomorrow. He said he would not put me on a pill until after Radiation.Do not know why. We did not have the Onco test results then either, so a lot has changed since the last appointment.He spoke of Arimidex but I will find out why that one and not Tamoxifen. I did not see the Radiologist today but will on Friday.

Linda I am glad your tongue thing is only a boo-boo. I am anxious to hear your outcome of you study. Which direction you will go. You may be done before me. I figure my last Radiation boost will be March 19th, If I do not miss any.

Katie, I know the waiting is the hardest. Having poor staff is really annoying and frustrating. My surgeon's office manager gave me so much wrong information. I sucked it up, as I liked and trusted my surgeon. Then I heard through the grape vine, that is his wife! Poor guy! She was a dragon lady!

Have a good night all you pink sisters.

GP...Jeannie

Hi Katie...I was re-reading your post and wanted to make a comment about some citizens not speaking English that well.  It was a fortunate day for me that an Iranian cab driver who didn't speak English well at all took me to a medical appointment on November 4, 2009.  He actually took me to the wrong place.  As a result of my being in the wrong place...I saw the "Mamogram" sign...and decided "what the heck...I'm here anyway...I will book an appointment and ask the receptionist if she knows the right address".  I booked an appointment for a mamogram the following week and found out from the receptionist that the place I needed to go to was down the block, in another building.  The following week I went back for the mamogram and sure enough...I had a tumor.  Couldn't feel it at all and without the mamogram would not have been able to feel it until it was much more invasive.

I guess the point (especially for me...as I'm usually a little judgemental and impatient) is that you just NEVER know when something good is going to happen...even when the situation seems like it isn't that great.  I was so lucky...and very thankful.  I found out more about the the cab driver...he is from Iran and drives car # 19 for the Yellow Cab company here in Victoria. You may have heard this story of mine before?  I still love to keep telling it...it reminds me to be humble and thankful...as it was by the grace of God that my tumor was found early.  I hadn't been for a mamogram since 2007...and probably wouldn't have gone for another year or longer as my reminider notice got mailed to our previous address and the tennants who were renting our home did not forward it to me. 

On another note...our home that we moved from (in Nanaimo) finally sold!  Yahoo.  We've been trying to sell but the market was just so poor...things are starting to pick up now.  It has been a financial strain (carrying two mortgages) but things will be somewhat easier now.  Phew.

I am glad your daughter has gotten over her bug...but now your husband has it?  I hope you don't get it as well.  Hey...what's going on down there in California anyway? 

Michele...so glad your port is in!  Yahoo...now they won't need to prod you and poke you for your treatments.  Soon it will be behind you.  I agree that when medical professionals all talk about something else while they are doing something to you it makes you feel safe...I mean if they were all saying things like..."Wow...have you ever seen skin this tough before?" or "OMG...look at that"  or "These darn ports...they don't make them like they used to".  LOL.  It must have made you feel so relaxed NOT to have comments such as these being made while you had interesting pieces of material draped across your face. 

GP...nice to hear from you, as always.  When you see your oncologist tomorrow, can you ask him if it is unusual to start tamoxifen before radiation?  Perhaps because my surgery was Jan 8 and the Her-2 test took so long to come back they decided to start me early??  Wow...your last treatment really isn't that far away is it?  Yahoo.

Goodnight everyone...I'm off to the office to set up a "booby trap".  We all had to do some sort of golf hole for a team day event.  Our team has come up with a hole called the "booby trap" and it involves bras with holes in them and large underpants.  I think it is going to be pretty funny.  I won't be participating in the event though as tomorrow I will be assisting at the office across town where social assistance cheques are handed out.  This is called "cheque issue day" and is one of the busiest days of the month for our ministry.  I always help out "in the line" and help clients calm down and not get too excited that their cheque might be a bit delayed or that they have to see a worker etc.  It really helps ground me and reminds me why I do the job that I do...it really is about the people.

OK....talk to you all soon.  Have a good night, Pink Warriors.

Hi Katie...I apologize...I didn't mean it to sound like you did anything wrong...again, please accept my apology.  I can certainly understand your legitimate frustration....it only reminded me of the guy who actually saved my life. 

Isn't it funny that people yell or speak loudly when they are talking to someone who doesn't understand them?  I notice that people also tend to do that when talking to blind people.  It must be human nature...that we amplify ourselves when we think someone doesn't understand us...even if they hear fine.  LOL.

In Canada we have lots and lots of citizens who don't speak English.  In fact for the first time in 200 years the statistics show that English is not the most common language in Canada any longer.  Amazing isn't it?  There are a lot of citizens who come from China, India, Russia and Croatia/Ukraine.  I think you have a lot of citizens from Mexico?  I understand Spanish is a common second language in California.

In Canada we actually have two official languages...English and French.  We have to take French in school, right across Canada.  You can even get into "French Immersion" classes.  Some of my grandchildren take French Immersion and are almost fluent now in both English and French.

Anyway...I once again apologize if I sounded like I was judging you...I honestly wasn't...it just reminded me of my little story.  Thanks for your patience with me.  I often get "foot in the mouth" disease.  LOL

Linda, I think the technical term for foot in the mouth disease is verbal diarrhea. I ought to know, I have a chronic case of it! **snicker**

I had a lumpectomy on Feb. 9. They found a 1.8 cm tumor (IDC) and a 4 mm DCIS in my left breast. The one lymph node they took was first diagnosed negative and later found to be positive for metastatic carcinoma. I  will undergo another surgery on Feb. 25 to take out all my lymph nodes and to do a re-excision on the breast to remove more breast tissue. I am glad I found this forum to learn from other women's experience and to communicate my feelings. I was wondering if any of you had a similar experience as mine regarding the pathology findings during and after surgery. I definitley do not look forward to a 3rd surgery if this 2nd one does not take out all the cancerous cells. At the very least, this whole experience scares me. I have never been seriously ill before. The only time I was in the hospital was when I gave birth to my son 31 years ago. The whole thing has not fully sunk in. I try to think positively, but I end up always thinking about this disease and not knowing what will happen next. The cancer stage has not been fully determined. My doctor says it could be a II or III, but definitely not IV. To all of you in the class of 2010, may we all hang in there and defeat this "monster."

D1947, it's not unusual at all for the post-surgery examination of the material removed to show something that didn't show up during surgery.

During surgery, they immediately freeze and slice off a portion of the various tissues. They examine that for any cancer cells. Many times it will appear "clear" during that review.

Then the tissue is sent to more thorough examination that they are not able to do during the actual surgery. That's why it's not unusual for more cancer cells to be located.

The good news is that your team appears to be on top of it. I completely understand not looking forward to a 3rd surgery -- we are here for you -- we understand your fears completely.

D1947 - Welcome to the group, I am sorry you have to join us, but know that we are all here for you.   My experience was close to yours, they the biopsy then the surgery.  Took out 4.5cm of DCIS during lumpectomy and found almost a cm of IDC in it.  They didn't get clear margins so they told me they needed to go back in take another 2 -3 cm around what they already took out and take out my SNB.  I lab reports showed extensive DCIS I have have been recommended to get a mx.   You will find that the waiting is the hardest.  Many prayers out to you.