Do I really need CHEMO?

audreynyc

HELP! My onc told me to get a 2nd opinion while the FISH and Oncotype DX tests are done (will take 3 weeks). I'm triple positive (strongly for all three) but stage 1, grade 1, <1cm. I had a lumpectomy with 0 nodes effected. I'm in my late 30s so I assume the treatment will be more aggressive (?) My onc. said she might suggest taxol, herceptin, radiation, tamoxifen. Do I really need CHEMO? I'm terrified. I don't think I can work through this - have a demanding "public" job!

jill323

Audrey -

First... breathe......  I know this is hard. 

Welcome to the "mushy middle".   I found myself in the exact same place and started a thread a while ago called "the mushy middle".  It is on the IDC forum.   You might want to take a look at that to see how I ended up where I am - which is the "lighter" chemo regimen of Taxol/Herceptin (plus radiation and eventually Tamoxifen).  And yes, the younger you are, the more likely you are to be aggressive with you because your risk for recurrence is higher.   I am 43 which is considered "young" by breast cancer standards. 

That said, you are getting done what you need to.  The FISH will confirm your Her2 status, which is quite key in this case.   However, don't be surprised if the FISH comes back and shows your Her2 to be amplified that your Oncotype will be high.   Usually those two correlate (not always, but usually).   So... if that is the case, you need to think about the end game - which is keeping this little sucker from coming back.   Ask your docs to "model" your recurrence risk once they have all the data.    You will find that your decision on chemo (and it is your decision) will be a matter of risk benefit - how much risk do you want to take for how much benefit.  It is a very personal call.

In my case, I was looking for a regimen that would get me down to single digits in terms of recurrence risk, without risking unusual side effects (like heart risks) with "strong" chemo.   

And if it makes you feel better, I work full time out of the house, also in a demanding job.   When and if you get to that point, I can give you some tips on how to maneuver in the working world while undergoing chemo.   I won't lie to you - it's not fun, but it is manageable.   I suspect, also, with you being "public" you can be inspirational to others (I know, you did not want this notoriety, but hey... it comes with the territory). 

So... when you get your data back, come back here or send me a private message.   We can work through the "process" together.  I just did this for another mushy middle lady, and she is doing great now.  

Jill  

lisettemac

I like the "mushy middle" title, Jill.  I think that really captures it.

Audrey -- my dx sounds similar to yours (and Jill's).  I was 39 at dx.  1.1 cm, Stage 1, poor grade, no nodes, ER+, HER2+.  I argued with my onc about chemo and he said there was a good argument for no chemo.  We agreed to wait to see what the Oncotype showed.  Unfortunately, it came back high (no surprise I guess, given my HER2 status) and I went off to chemo.  Again, onc said given that there would be a "good argument" for less chemo given my dx, but he recommended what he called the "cadillac" of treatment -- 4 rounds of AC dose dense, 4 rounds of T dose dense, followed by herceptin, radiation, Tamoxifen.

At the end of the day, some of it is about how much risk you're comfortable with.  My DH (a numbers guy) just wasn't comfortable with a recurrence number at 10% or more (which is what adjuvant online gave us without the chemo or with chemo light).  I feel good knowing that I didn't "leave anything on the table."  Others might make a different choice in my situation and that's okay too.

I will tell you this, though.  I know why you're afraid of chemo and I can't blame you.  I also had a demanding, public job.  But I managed to work full-time through my treatments and no one was the wiser unless I told them.  Even got several compliments on my wig!

You CAN do this!!

BethNY

If you didn't do chemo, and had a new primary cancer, or a recurrence in 5 years would you be mad at yourself?

It's never an easy decision. And technically, if your FISH is negative, and your cancer is exactly what it is- slow growing, and small, then technically you'd fall into that shady category... HOWEVER, your age changes things in my opinion.

If your FISH comes back positive- you need to do chemo and herceptin.

If its negative you have a harder decision to make, and I can only give you my opinion... which is that even if its negative do chemo. But that's just my opinion, and you have to do whats right for you.

I worked in a crazy public job, and I couldn't work during chemo- and I did end up going on disability for a few months- but once it was over, I was right back in the game.

Don't let fear be your deciding factor- you have to do whats best for your long term life.

ICanDoThis

Audrey - my Her2 test was also equivocal, so they decided with the FISH - It was negative. Hope the same for you.

If you do turn out to be Her-, then I would wait to see what the Oncotype results are.

I'm older than you - but was just post-menopausal, with a larger tumor, and everyone said chemo was a BAD idea. More likely to get side effects than any help. I even went for a second opinion. You can make that choice as well.

I know waiting stinks!!! But see what the results are - if you are strongly ER+, the most important thing you can do is hormonals - keep that estrogen away from your breast tissue.

 Good luck

nicole0714

wow audrey.

we are in the same boat. i am 37 and had originally DCIS and got my path back (after lumpectomy) showing i too was a triple positive. i need to go back for more surgery and lymph nodes (they suspect they will be clear since my cancer was in the lowere medial quad and small). i am terrified of chemo. can't even think about my long thick hair falling out. i am eager to follow your story since i am hoping to hear good news!!

Eileeng

I remember my surgeon telling me that at my stage one with no positive nodes, 80% of people wouldn't need chemo, but 20% would, and they couldn't tell who would be in the 20%, so they chose to give chemo to all, which was fine with me. I ended up being her2+ as well, so I had the whole kitchen sink thrown at me, for which I am glad.

Good luck!

Eileen

nicole0714

oh eileen. i wish i could drop the vanity  and just surrender to chemo. afterall, i have four young sons. a lot to look forward too. i just wish they had better tests, advice then just lumping us all together. if you are her2 pos they really throw the whole kitchen sink at you? is this harsher, more aggressive chemo??

audreynyc

Hi Everyone - thanks for sharing your stories. I'm getting a second opinion this week (Dec 5) so I'll let you all know the latest then. I still don't have the FISH or OncoType test back yet! Ugh!

TammyLou

Actually, in terms of your prognosis...that's pretty good.

ER+  means that the cancer "feeds" on estrogen...so, BLOCKING estrogen could be a good way to "starve" it / suppress growth.

Same with the PR+ (another potential hormone to block)

The HER2+++ aspect means that a targeted biological (Herceptin) is also available to help kill the cancer.

The "triple negs" have to "fly without a net."  Currently, there is no follow-on treatment (after the "traditional" chemo and rads) to help prevent recurrance and / or new cancers.

So, to my way of thinking....you're doing pretty good.  Lots of therapeutic choices.

Stage for stage, ladies with ER+ cancers tend to have better prognosis.  Somewhat because there is a lifetime limit on how much chemotherapy we can take...the stuff is poison.  However, there is no limit to hormonal suppression and it tends not to tear up the body so much.

Tammy Lou

ladyjane54

surgery is done.  results are good no node involvement - clear margins - question now becomes chemo or not and I am very confused.  I do not have any er,pr or her2 (whatever those are) results yet.  Do I need all this info before I can make an educated decision?  I just want to do what's best and no one can seem to tell you what that is!  Totally frustrating.  Will see medical onc on 15th dec. should I just table this until then and stop driving myself crazy? Or should I continue to research and hope I will some how somewhere find the answer?  Not expecting you ladies to give me the answer, but just thought I'd throw out the questions. How does one decide?

audreynyc

Lady Jane - yes, you do need to know if you are ER (estrogen receptor) and PR (progesterone receptor) positive or negative as well as HER 2 (a gene) positive or negative. ER+ is less agressive, while HER2+ is more aggressive, so it can be confusing! You are seeing the onc on Monday, so arm yourself with some info so you can ask smart questions, but don't get too overwhelmed. And your onc may not have an easy answer for you. Good luck - keep us posted!

mattscot

Ladyjane,  great about no nodes... if you dont have it yet call your doctors office and see if you can get a copy of your pathology report and any other reports including HER2 testing before your meeting-- so you can review it.  That will help you to develop good questions  If you are ER/PR positive request then an oncotype dx test be ordered-- (it takes at least 2 weeks to come in)  .  Also check to see (or have your doctor's office check to see that it is covered by insurance) .      you may also want to find a 2nd oncologist for a 2nd opinion...

onenewboob

Hello everybody.  It is almost a full year since what appears to be the last post.  Jill... GREAT response to AudreyNYC to BREATHE.  Exactly!  I completely understand that it is scary and at the least unnerving.  But remember the diagnosis does not mean the end of life tomorrow.  Do not allow yourself to be rushed or delayed outside of what you feel is RIGHT for YOU!

I am one month post-mastectomy (cancer very small, but my choice).  My process began more than 2 years ago and actually when ever I was called back for a second look, it has always been my left breast.  Sort of an initiation process, I guess.  Every waiting period, to me, was a period of respite and I used them to have a wonderful vacation, visit with family, attend the birth of my daughter's first baby, and to DELIBERATELY not think about it all. Was I always happy or calm?  No, but putting yourself at peace is very important and will serve you well.  I have had very little anxiousness and this has helped my family to settle into a peaceful mind and heart about it all, too.  Prayer is vital to me, too.  When I cannot talk to anyone else, I can talk to my Lord Jesus.

By the way, about REGRET OVER YOUR DECISIONS.  If your treatment decisions are YOURS and you make them after having full knowledge and understanding of all the options, make your decisions with the SELF-UNDERSTANDING to NOT second guess yourself down the road.  Even with a full load of ALL the available medicines and treatments, nothing is guaranteed.  Follow peace in your treatment selection for yourself and family. 

I am at the point now were post-surgery treatment will be chosen.  I am critically reviewing my pathology report, reading about all types of treatments, and praying for wisdom.  I will most likely choose hormonal treatment only - but that is what gives me peace.

God bless you all.

dx 09/24/09  DCIS Stage IIa, .6cm, 1/6 nodes, ER/PR+, HER2-, Histology Grade 1

suzieq60

Audrey, I didn't imagine I would have to have chemo either. The nodes were negative 1.1cm lump. All I expected was radiation. Then the HER2+++ came in. I am also highly ER+ and PR+ and luckily post menopausal. I just had my first treatment his week - so far so good but a bit shaky today.

 My oncologist said that we are lucky that herceptin is available. He also said they give TCH regimen here in Australia to node negative HER2+ patients. Only the nasty AC-TH to node positive patients which made me happy as I don't want any heart damage.

 He has treated patients for years before herceptin was available and he calls it the wonder drug. Be glad that they can hit it with more treatment.

If your lump was 5mm or less they might not reccommend chemo - this is still a grey area. However, you guys are lucky over there as we do not have the oncotype dx test here. Not sure how accurate it is but good luck with the results.

joys

My mum is going through the same "should I/ shouldn't I" have chemo debate.

Background: My mum (agd 59) has just had a R breast mastec last week and lab report shows triple positive (although we're waiting for FISH to confirm HER2+). This is a 'recurrence' as she had a lumpectomy in the same breast 5 years ago, almost to the day. That was triple negative so she did the full chemo FAC and 30 days radiation. 14 nodes clear 5 years ago (no more taken out this time). All scans done to date show no mets, although bone scan o/s. Latest tumour 1.2cm, clear margins, Grade 2.

1st onco recommended Femara 5 years only and surgeon added on her recommendation of herceptin for 9 months (no chemo).

2nd onco recommended full works TCH chemo(4-6 cycles), Herceptin for one year and Femara for 5 years.

Mum really doesnt want chemo - too much going on for her next year. My sister is getting married, I'm having 2nd baby, she's submitting her thesis for her DBA and she's turning 60. Also she has no insurance so will be self funding the whole thing, and on top of that, she lives alone in Malaysia while my sis and I live in London.

She has a heart murmur which she has controlled for years with Tenormin so not even sure if she can do Herceptin. I would prefer her to do the full works but I guess I have to let her come to her own conclusions and just be supportive.

noellech

I just wanted to chime in that in the same circumstance I chose to go ahead and have the chemo because of my three young children. I couldn't risk them growing up without their mother. Without kids I probably would have passed on the chemo.

 On the otherhand, if you have not yet had your children, chemo will likely ruin your ovaries and that will be it.

Good luck.

camoedo

Hi Audreynyc I was wondering how it is all going for you now?  How are you finding the treatments?

 I am very confused at the moment and would love some ideas on my situation.  I had a lumpectomy a month ago and my tumor was 5mm with a micro invasion of 0.8 mm grade 3 tumor.  The margins were clear and the 3 nodes were also clear.  They say i am very lucky that I found this so early as I found the lump myself. I am Her2+ but unsure of what grade and also ER+.  The onc and surgeon aren't sure of what the best course of treatment would be as there is no research to back up doing chemo and herceptin.  Of course iI'll have to do the radiotherapy and the tamoxifen. 

I am not sure if I should go ahead and do the chemo and herceptin or if I should just leave it because I am afraid of all the side effects.  And if the risks are so minimal then why should I do the treatment that is so aggressive.

 Is there anyone out there with a similar diagnosis as me and if so have you or are you doing the treatment and how is it going? 

The onco suggested a very light chemo of just 4 treatments and then the herceptin.  But I am still not sure if there is any benefit to doing this treatment

PLEASE HELP!!!

swimangel72

camoedo - Hi there and welcome to the club no one wants to join. It's nearly 1am here in NY - I'm up late because my latest drain is a pain and won't let me sleep, but I refuse to take any more narcotic drugs.

Your best bet for answers to your questions would be to start a brand new thread - some of the women who start these older threads don't return to bc.org..........also you might wish to visit www.her2support.org for help - the women and men there are really up-to-date on all the studies related to Her2+ BC. More and more, the newest studies are showing that for even the tiniest tumors, Herceptin is the way to go - it can cut your relative risk for recurrence by 50%. Have you had a FISH test done to be sure about your Her2 status? What about Oncotype DX? Another consideration is your age. I had a very "light" chemo with the Herceptin - it didn't cause any heart problems or hair loss (Navelbine for 4 months with Herceptin continuing for the entire year.) My SEs were very mild in retrospect........my nails took the worse beating...........my heart took the licking but kept on ticking (all the muga scans and EKGs were fine)..........so this is very doable if you decide to follow your onc's advice. You can also get a second opinion from another oncologist - which I would recommend to give you more peace-of-mind.

Good luck with your difficult decisions and may God's angels watch over you!

Cowgirl13

Camoedo, just speaking for myself--i would do the chemo and herceptin because of the HER2.

Regardless of the HER2 grade.  HER2 is very agressive.  I am HER2 positive. 

joys

Try the taxotere, carboplatin & herceptin thread on this site. All oncologists seem to suggest that chemo + herceptin for HER2+ is the way to go. But do a FISH to confirm your status (and oncotype if you can). My mum was triple positive base on the lab report but FISH came back as HER2 negative which rules of Herceptin.

camoedo

swimangel72-

thank you so much for your advice it has meant a lot.  I was already leaning towards going ahead with the treatment but was uncertain about my heart.  I had an echo done and am now awaiting results as i have a family history of heart conditions.  I am still wanting to go ahead with as much herceptin as my heart will take.  They don't do a FISH here they do a SISH which is much the same thing.  I am in Australia by the way. We dont do the Oncotype test here but i will ask what type of chemo i am doing as it appears i will lose my hair.  But who cares right.  As long as i am ok in the end.  Thanks again for your support and good luck with your treatment.

camoedo

Cowgirl13

it seems you and i are very similar in our diagnosis except your tumour was larger than mine.  Thanks for the advice I will be doing the treatmen as i don't want a recurrence in one or 2 years.  And i want to get rid of those HER2 cells.  Thanks again

jezza

Hi camoedo!

You may like to join the Australian breast cancer forum as well as this great site.There are quite a few Her2+ girls there. Sometimes its good to have some local info and chat with girls from the same area.

I will PM you the link.

Hope you're doing ok.

jezza