Calling all Stage II Sisters!!!

sandy115

I too am stage 2b I am doing chemo@ the moment chemo # 3 tommorow @least I will be half way done.not looking foward to the S/E though fo the next next week or 2.I had a lumpactomey

in June and still having pain in my breast does anyone else have this issue.

Rockym

dixiebell and christine47, Oncotype dx originally was for pre-menopausal, no node women.  Later they used it for post-menopausal node positive women and now it is also used for pre-menopausal 1-3 node positive.  It all depends on the MO as to how they guide you.  My MO is more old school, but my RO is a state of the art women and mentioned this test the first time I met her.

That said, I told the MO what tests I wanted.  MO can give their opinion, but that's all it is.  There is so much information out there and sometimes even the MO doesn't move with the times.  They are safer to just recommend chemo and my BS told me that lots of women get treated with chemo who may not really need to.  The problem is that they really don't know who will benefit and who won't.  I had to also tell my BS that I didn't want an ALND.  I told him if SN was positive I would go from there.  Of course SN was negative, but micromets elsewhere for me :-(.

The Oncotype tests helps a little with the decision making, but of course for me my Oncotype can back a 22 so I get to be the low-intermediate without a cut and dry answer. I also told my MO I wanted a 2nd opinion on my pathology.  He didn't seem as concerned, but at my 2nd appointment agreed that the language was ambiguous.  I guess I see it this way... it's our bodies and the choices are up to us.  We can follow the guidelines for our specific situation, refuse treatment or let someone else make the decisions.  I'm a researcher so I am working with the BS, RO and MO to do what is best for me.  Each of us handles things differently, but I don't want to regret or second guess any of my decisions later.

Dixiebell, looks like you and I were in surgery the same day.

dixiebell

Hi rockym: Great great info. Oh sorry what is ALND. I need a lingo lesson.

dixiebell

Hi All: Met with my new oncologist (yes I loved him) he is at a teaching hospital here in new Orleans. My oncotype score was 5. Here is the kicker. He does not feel there is an adequate data supporting the node positive pts. My oncotype results came with a number and a page specifically for node positive pts. Yet he still recommends chemo. (the test was ordered by a different dr before I was aware I was node positive with a 5mm tumor my chance of node involvement was less than 10%) I'm a numbers girl. This is what I was told today. Forgetting about the oncotype I have a 70% chance to be cancer free and alive in 10 years. But I have a 30% of either having a recurrance or not being here at all. With chemo only that number goes to 77%. With hormone supression therapy that number goes to 77%. With both that number goes to 82% - nothing I do can give me better odds than that. I love statistics so being told all this has been so helpful. Radiation will not help because the entire section and all the nodes were removed (radical mastectomy) . So I said well those numbers do not make me feel like the tx is worth it. He told me this: "if you were forced to play a game of russian roulette and you could take out 1 bullet would you",  I said of course I would, "he said this is no different". It has me thinking. I loved this man! Still not sure if I will do any tx but love the facts so I can make an informed decision!

Sereena

dixiebell, I told myself I would never look back but you and your onc have really got me thinking!!!

dixiebell

Sereena we have extremely similar diagnosis except I was grade 2.. You opted for hormone therapy am I correct? I am 49 are you close to my age? I would love to hear your thoughts!

Sereena

Yes, Dixiebell. It was a tough decision! I spent alot of time doing research and thinking quietly without listening to any opinions from family, friends etc. I had to make the decision on my own and for the right reasons. I was very much on the fence as I wanted to give my self the best chance for never hearing from BC again. I also am a very vain person unfortunately and I had to make sure that my decision to NOT do chemo wasn't based on any fear of losing my hair. I am in the northeast and am being treated at Dana Farber which is very cutting edge. Chief of Oncology did not recommend chemo with an onco score of 10 and infact said chemo would only benefit me 1% and at best 2%. The risk of side effects from chemo was equal if not a little greater. So whats a girl to do???? So 30 rads and arimidex is my treatment. Radiation was no problem other than redness and the arimidex has caused minimal side effects. I have never 2nd guessed my choice but I wish it was a choice I never had to make. If I were a Grade 2 I would have done chemo. Your post on gun roulette really stopped me....and really though, it is true....why wouldn't you take out a bullet! BTW.....I will be 53 in 2 weeks and have been post-menopausal almost 2 years.

christine47

Dixiebell,

Glad you loved your new onc.  I wish this was a cut and dry decision for you.  I believe that what we decide is right for us, you will make the right decision for you, no matter what that is.

Best Wishes,

Christine

dixiebell

Thanks everyone for your comments and support. Serenna I unlike you never think quietly and love to hear opinions in fact I posted on my facebook page my delima with the percentages and asked people to comment knowing not going through this it is easier to say what they would do but still it has made an interesting topic and the comments have been very interesting with about a 50/50 vote at this point. I guess I need to hear it ALL before I make a decision. lol - As of right now I say Praise the Lord for any % chance of living and pass the valium!!!!!!

SpecialK

dixiebell - what is making you struggle with the decision - in other words, what are your concerns about doing chemo? 

dixiebell

Getting sick and dying from the chemo 1st (happened to a friend from infection) 2nd my work schedule, travel mon-thur every week. (my dr said not a good idea being on a plane every week nor would I have the stamina to work the hours I do every week 50-60 easily) 3rd if I cant work due to side effects, fatigue whatever I can't pay bills. I am the sole provider for myself and my son (he's a freshman in college) and now with my daughter (23)  pregnant lives with me  a hairdressor and no insurance I will be paying for that too. (I prayed to God to let me live to see my grandkids, the next day my daughter's boyfriend walked in and told me she was pregnant) I have some savings but only to get me by about 2 more months (not counting the medical bills stacking up but those will just have to wait)! Oh and finally the hair loss and weight gain from steroids (already gained 10 lbs being off the bioidentical hormones) I was dating someone who disappeared once he found out I was sick - so I guess vanity is the final worry. I realize that is ridiculous but true!

SpecialK

dixiebell - those are legit concerns.  I know it is hard because you lost someone to chemo, but that would be quite rare.  Do you have any kind of disability through your work?  You could check with your state disab as well - mine, which was through my employer, paid 2/3 of my income while I was on chemo.  The disab expired 30 days from the last infusion.  I agree chemo and full-time work with flying would be difficult.  I know the hair loss and weight gain are awful, but they are temporary setbacks - and any guy who leaves when he finds out you are sick is not a keeper and doesn't deserve you!  You have a lot to consider - but if you end up in that 30% recurrence/new primary/not here any more category, will you feel like you did all you could to avoid it?

Rockym

dixiebell, ALND is short for Axillary Lymph Node Dissection.  I was way scared of my BS doing this, but we agreed he would take a few. He was okay with doing the SND (common these days), but even thought my SN came back negative, he still took a few others and not a whole bunch. I don't know whether to thank him or yell at him :-).  Since my SN was clear that could have been the end. Of course now it's not :-(.

My Oncologist called today and my 2nd opinion came back from Johns Hopkins.   I too am a big numbers girl.  The 2nd says yes... 2 nodes are positive.  They are micromets, but I believe he said there was extranodal extension which meant the cancer truly spread to the nodes and it wasn't just the nodes near the tumor like I thought.  My tumor was almost under my arm.  Great for keeping my breast looking good, bad for axillary node involvement.   Since my oncotype is a 22, I guess I have no choice.  I want to be around for my kids, I don't want to live with Stage IV later in life.  I will be 47 next month and if this is my one shot at zapping this out of my system... well, I'm way glad all the ladies are here for support because I'm not looking forward to treatment.

I'm glad you like your doctor.  That is way important since you are a team.  I wasn't fond of my guy at first, but he has made a 360 turn around with me and appears to be very appreciative that I am doing my homework.  There is research that says Oncotype can be used with node positive.  You can google this.   Also, oncotype tells how your tumor will react.  Very hard call with positive nodes, but if your tumor is such that chemo won't help kill off possible left over pieces, then you have to use that information as part of your decision.   Also, check out Cancermath.net.  Good numbers there.

It looks like chemo and hormone therapy will take me down from a 17% to a 7% to a 5%.   If there were no nodes, I would be at 17% to 5% to 2%.  Who knows what I would decide then.

Rockym

Dixiebell, my best friend and I were talking (she is a 9 year survivor) and divorced her husband during her illness.  Lots of guys are jerks so consider yourself lucky that the guy disappeared. Can't be having non-supportive jerks around during this time!  I believe vanity can be handled, but crappy men can't!  That goes for unsupportive friends and relatives too.  Of course... that 's just me.

dixiebell

rockym: well your path is clear which is good. I know your not looking forward to tx but as you said its your on chance to zap it! I agree you score says you must do it, Since I had a score of 5 (I do not think I ever heard anyone say theirs was that low) I am so convinced long term side effects would be worse then benefit. Oh and yes good riddance to the crappy man!!! My onc made one other good point today, now is the one shot at cure, if it mets then your managing but curing is out. That statement has me thinking too!!!!

specialk Great points, I unfortunately own my own company so no vacation time or sick time, and La has no state benefits for short term. As for the guy he showed his true colors! But if I need to not work to be treated I'm sure I will find a way!

dixiebell

Anyone in this group went to MD Anderson? Everyone keeps telling me I am crazy not to go get evaluated there. I honestly think though at our stage besides the oncotype score most drs follow the same regimen. And geez I have seen 3 in my area from 3 different facilities.

Cowgirl13

Dixiebell, I threw everythig at it because if I had a recurrence later, I knew I would feel terrible for not throwing the book at it.  And I didn't have children. Good luck.  

bdavis

Hi Ladies... Just found this thread!!!

Betsy

bdavis

Hi Dixie.. I had responded to you on another thread, but wanted to chime in again... I told you that my chemo (taxotere and cytoxin) was not difficult for me... I started chemo in January, and yes, I did lose my hair but did not gain weight... and finished in May. My hair is coming in great by the way... and I wore great wigs all spring... But what I wanted to say is that two weeks after starting chemo, I was promoted at work... more work, more hours, and it was all fine. I missed work on infusion day, although I could have gone in late and had tons of energy from the steroids... then a couple of days after infusion I went to work late as I needed to get my WBC booster shot... and then the next day was my stay at home day... felt tired and achey... but it was just that day and then I was back at it... I did 6 rounds of chemo, every three weeks and found it to be very doable... IN ADDITION, I had planned a vacation to St John for 10 days in March and my oncologist said I should go, so we did and it was great. I was fearful of flying and taking the ferry, getting tired etc... but all was good... I went snorkeling, exercised at the gym, swam, sunned... all the stuff I would normally do... I say all this cuz chemo doesn't have to be what you picture of laying on the sofa for months... that for the most part is chemo from years ago... they have great meds to prevent a lot of side effects... I never had nausea, just fatigue... Taxotere does have other side effects, but I did my homework and avoided them... One being nail issues, where nails can lift and turn black... but thru research learned I could ice them during infusion with bags of peas, and my nails never had a day of problems...

dixiebell

Thanks bdavis another lady just private emailed me saying she is deaf from chemo and has many other problems from the tamoxifen and scared me to death. So any positive outcomes is good!!!!

bdavis

Hmmm.. I think one chemo is different from another, so it may be worth asking which chemo they would recommend... I know a ton of people who've had chemo and no issues.  And tamoxifen affects some people and not others.. I haven't started yet, but I am highly ER/PR positive, so I have no choice... If I end up with bad side effects, I will tackle it then... I think sometimes we need to access our risk and determine whether the odds are greater of getting cancer again vs the risk of a lifelong side effect.. For me, I'd rather live deaf than die and that is how I have approached my fears... So far, it has all worked out for me, and the fear of surgery, chemo etc has far outweighed the reality.... meaning I worried for nothing.

mccrimmon324

dixiebell, just wanted to say that while Chemo has been a very unpleasant experience I never want to do again it isn't nearly as bad as I had originally thought.  I'm having my last treatment in 2 weeks and can't wait for this to be over.  I did lose my hair, I am devasted by it but honestly it's not been as traumatic as I thought it would be.  I can't believe when it came out that I haven't cried over it and now I can actually see the light at the end of the tunnel,  never thought I'd get here when this first started. I'm also get taxotere and I haven't had any problems with my nails but I do get a horrible taste in my mouth that lasts for about a week

coraleliz

Dixiebell-I was told chemo would give me an additional 6% benefit over Tamoxifen alone. My MO didn't want to run the Oncotype on me because he said it would change his mind. I was going to turn down chemo because that wasn't a large enough benefit for me & I felt the risks were too great.  I talked the MO in to running the onco test on me anyway. I was going to do chemo for a high or intermediate score. Mine came back  4. My MO doesn't like the fact that the largest study to date on node+/oncotype is only 367 women. But I needed something more than a 6% benefit to do chemo & I didn't get it from the onco test. I declined chemo,had reasons to do RADs & off to tamoxifen. Some women will do chemo for percentages smaller than 6%

I have grade 1 & IDC which differs from you.

If you are really sitting on the fence, you might consider the Rxponder trial. It is a stage III clinical trial looking at the relationship between oncotype scores/node positive/reoccurence. I didn't qualify for this study for other reasons.  I figured that if I were in a "study" I would be watched more closely=better care. Just my thoughts & mine alone. Good luck on your decision, I really don't know what I would do with your diagnosis & numbers.

FLwarrior

Dixiebell ~ I did not go to MD Anderson for treatment, but my MO did his clinicals and residency at MD Anderson in Houston.  My treatment was their protocol.  Our dx is similar except my tumor size was larger and I was 0/4 nodes. I had neo-adjuvant treatment, consisting of chemo first (FEC and taxotere), surgery - clean margins, no nodes...no rads.

Ralsper

Hello Ladies,

I am 43 years old.  I had a skin-sparing left breast mastectomy with sentinel node biopsy. Since no cancer cells were seen in the sentinel lymph node at the time of the surgery, I did not need a full lymph node dissection. So far good news! I felt great, but the lymph nodes removed were examined again in greater detail over the next several days and they found a macrometastases (0.21 cm) on sentinel lymph node #1. See, micrometastases is < 0.20 cm, so I had to have another surgery to have a full axillary lymph node dissection 15 days later! I feel betrayed! I went from Stage I to Stage IIa Grade 3 in less than 2 minutes.

Well, I just finished 4X AC, and I will begin Taxol every week for 12 weeks. I never consider having bilateral mastectomy because the MRI just showed a 1.2 cm tumor on my left breast, so my radical decision was to have a unilateral mastectomy instead of lumpectomy, but now I am petrified of a possible recurrence on the right breast. Should I consider talking about this with my ON or she would just think I am exaggerating?

dixiebell

Thanks everyone for your thoughts oh and I did apply to be in the study SWOG1007. I am excited problem is the computer picks whether you get chemo or just the hormone tx so I figured I keep praying for an answer now it will not be up to me!!!

Ralston: I did a BMX because I 1) I was scared of a new breast cancer 2) wanted immediate recon had to do the alloderm all in one (did not have enough fat for a flap) and there is no way I could have come close to matching them I was a full natural D cup and you cannot go that big with recon plus the shape would have been so different and 3) I had palpable lumps in the good side I was told was cysts but wasn't taking any chances. 4) Dr said if I had BMX and they found a + lymph he would do a radical on that side so no radiation needed. Just remember a recurrance of breast cancer can be anywhere. And ladies correct me if I'm wrong but I remember my surgeon saying that If I got breast cancer in the other breast it would be considered a new cancer not a recurrance. In a recurrance the breast cancer would come back anywhere else liver bones brain etc. Anyway I did the BMX and do not regret it.

bdavis

Ralston... I too had been told at lumpectomy and SNB last December that my nodes were clean, but then they found a micromet in SN... it was .38mm so it was very small... no more nodes were taken, but I got 6 doses of TC (2 extra over the 4 due to the micromet)... I then decided to have BMX instead of rads... I don't regret it,and now both are done. I went to New Orleans for a GAP and then DIEP flap surgery... I had both because of a complication after the GAP... 2 trips and 3 surgeries in NOLA within five weeks... but I am good and on the mend... Having a UNI or a BI is a hard decision for some people... for me, there was never a doubt... I wanted to be DONE.

Rockym

Ralston, Since you already had the MRI, I'm assuming they looked carefully at BOTH breasts.  Talk to your doc about ANYTHING that you have concerns or questions about.  That is what they are there for.  If you think there is a test out there that will ease your mind, ask them for it.  I requested the Oncotype, I requested the MRI, I requested the 2nd opinion on the pathology.  I had my BS order the MRI after my original dx because I examined my ultrasounds from previous years and although the cancer was in the left, my right looked weird to me in the ultrasound.  I figured I better know from the beginning and not go on my merry way only to find out the right had problems too.

BS said that the MRI would more than likely show false positives and he was correct.  My right breast looked good, but the left lit up with something a few inches away from the dx'ed cancer.  It was biopsied and turned out to be B9.  I didn't care either way since I knew he was already doing a lumpectomy in that area and if it was cancer, well he could just take that piece too.

My SN was also clear while I was in surgery.  When the final path came back, SN was still negative, but micromets in 2 axillary lymph nodes.  My BS and I agreed he would only take a few nodes.  I didn't want an ALND.  I don't know whether to yell at him or thank him when the results came in :-).  I ended up sending my path to Johns Hopkins for a 2nd opinion just to be sure since typically of SN is negative that is the end of the story.

Now that all is said and done... chemo will begin on 9/19 @ 9:00.  Fortunately 9 and 19 are my lucky numbers.  Hope that means something since every other number I've received beginning on 6/9 has been unlucky.  Oh, I also went from Grade 1 to Grade 2 with the more detailed path.

Ralsper

Thank you for all your comments? I had a friend that at 42 had DISC ER/PR+ HER2- (Stage 0) on her right breast. She had lumpectomy and 5 years of Tamoxifen. 15 years later, she discovered she had DISC ER/PR+ HER2- on her left breast. Statistically she is consider a "success" because Tamoxifen will give you 15 year of none recurrence, but at 57 she said that it was way harder (emotionally and physically) to have another lumpectomy and radiation, but she does not want to take Arimedix.

Well, I am 43, Stage II, ER/PR+ HER2-, I had a unilateral mastectomy, but I am seriously considering, after chemo, have my ovaries removed and during reconstruction, if possible have mastectomy in my right breast. Again, am I exaggerating?

By the way, my MRI didn't show anything abnormal on the right breast.

bdavis

Ralston... It has to be what you WANT and can live with... Your friend with DCIS had a non-invasive cancer, you had invasive...Do you worry about the non-cancer side? Can you handle tests and biopsies on your good breast twice a year? Are you willing to go through chemo again if you had a new cancer? When I asked myslef these questions, the answers were NO... so I did both. And my right (good) breast was normal too. It is not exaggerating if it helps you sleep at night.