Chemo or no Chemo??Confused!

Vegasmom · July 2009

Hello, I'm new to this forum, but need help with some questions. Hoping all you guys will help & its great to talk to others going through the same thing. I am Er+ and HER2+. One oncologist says no chemo but herceptin. The other oncologist says chemo with herceptin. So now I'm very confused. I have no idea the best road to take. Anyone else in my same situation??

Also wondering how bad these treatments will be. If I just do herceptin did you all work while doing these treatments?? What about the chemo with herceptin. Thanks, Tanya

jill323 · July 2009

Tanya - I was in nearly the exact same situation - except I had one doc that wanted to throw the book at me in regards to a very heavy course of chemo/herceptin and the other doc basically wanted to do nothing (no chemo or herceptin). One doctor wanted only to pay attention to the characteristics of the tumor (which were all aggressive markers) and the other doc only wanted to pay attention to the size (which was in the 0.5 cm range).

The other thing you should know is that my ER is not very positive (only 20%). So, the docs essentially treated me like I was negative. Also, technically, herceptin is not "inidicated" yet in a context that does not contain chemo. I have heard some doctors will lean forward and give it without, but it is few, and technically not following the guidelines to do so. In other words, the clinical data is lacking to date to understand the efficacy of herceptin outside of a context that contains chemo (although that will be coming).

Anyway, fast forward - I ended up working with both of these docs to get them somewhere in the middle. When all was said and done, I did do the chemo, but I basically went with the lightest regimen I could get away with in order to get the herceptin (I went with Taxol/Herceptin).

Ironically, after I made that decision, there was a retroactive study from MD Anderson that came out recommending "systemic adjuvant therapy" with ANY Her2 positive tumor, regardless of size due to recurrence stats. Specifically, they were recommending "anti-her2" agents like herceptin. So.. someone or something guided me to the "right" place for me.

Finally, there is a thread over on the IDC forum called "in the Mushy Middle" that I started in the throes of all this. I still hear from people over that thread because there are more of us out here than you might think. I will go over and bump it for you such that you can find it easy and hope it might provide you additional perspective.

I wish you all the best with your decision. Let us know where you come out.

Jill

P.S. You can also feel free to send me a private message if you want more info.

jill323 · July 2009

Tanya - This is going to sound funny, but I when went back an reviewed my original mushy middle post, I realized that it might confuse you in that I say my two docs where right where yours are now (i.e one wanted to give herceptin alone). But, just be aware that I posted that after the one doc who originally did not want to do anything moved toward doing "something" and that something was herceptin alone.

Jill

NanaA · July 2009

My onc insisted on some chemo along with herceptin. It is supposed to give better results if started with chemo. I also did the 12 weekly taxol with the herceptin given every 3 weeks. I am now doing the herceptin alone every 3 weeks and start rads a week from Monday. My onc would not consider not doing any chemo on a her2+. The taxol was managable andI continued to work my part time job. I only called in once to say I could not come in and that was after chemo was over and the fatigue got to me. I takes at least 2 week and maybe 3 to get past the feeling of being so tired you really don't want to do anything. Some insurance companies will only pay for herceptin if started with chemo, I have heard since that is the standard of care. You might need to check because herceptin is expensive.. Hope the info helps. Annette

bwbly · July 2009

My onc said she would give me Herceptin alone, if that was my choice.

After talking with her in depth and doing my own research, I opted for chemo/Herceptin. I did 12 weekly Taxol/Herceptin and now am doing DD Adriamycin/Cytoxin, which will be followed by Herceptin alone for my year of treatment.

I chose this route because I am sure I would kick myself if I did not do all I could to help prevent recurrence of any sort and all the current research indicates chemo with herceptin.

Bunny

idaho · July 2009

Ask the onc that wants to give you chemo what percentage that will raise your survival rate- maybe that will help you decide. He should beable to look it up on his computer. Just a thought. Tami

jenbal · July 2009

Tanya -- You don't say how big your tumor is, whether you have any node or lymphovascular involvement, or your age. These are factors that might be contributing to what you are hearing from your oncs. My tumor (Her2+/ER/PR-) was very small, no nodes, no LVI, and I am 50. My onc pretty much left it up to me to decide whether I wanted to do chemo, and I thrashed about it for a while. I've shared this on another post, but I think it might be helpful: I found myself trying to explain the dilemma to my kid. I said "Imagine a big hairy spider has just crawled out from under your bed, and you've stomped on it, and it's DEAD. But what you don't know is whether before crawling into the light, the spider laid a gazillion eggs. The only way you can be sure to get rid of the eggs is to fumigate the house -- and stay in the house while it's being fumigated! Now, you can take a chance that the spider was a spinster, but if you're wrong, and the eggs hatch, no amount of fumigation will ever get rid of them all." By the time I was done talking, I knew what I had to do.

I have read, too, that herceptin is most effective in combination with chemo. But it is tough -- there just isn't that much data yet on herceptin/chemo with early stage BC.

As to how tough the chemo is, alot will depend on just what cocktail you have. I've had Taxotere/Carboplatin/Herceptin (TCH) x4 so far. The laundry list of possible side effects is frightening, but so far, I haven't had it too bad. I've been able to work throughout, had one bout of neutropenia (a systemic infection when blood counts got too low) but Neulasta injections have handled that. I've had some nausea, some fatigue, some skin irritations -- but pretty much everything has been on the order of annoying rather than debilitating. It's very individual, and there's just no predicting how you will react. The main thing is you have to have confidence in your medical team. Are you going to a National Cancer Institute Comprehensive Cancer Center? If not, and you have one in your area, you might go for a third opinion. I know how tough it is in this stage, before you know what you are going to do, but you want to get it right. Good luck!

Jenbal

Vegasmom · July 2009

Thank-you all for your insight. I forgot to tell you that my tumor was very small .3cm. Er+ and Her2+, nodes were negative. The size of the tumor is what is "borderline" for giving herceptin. And I still have not deceided what I'm going to do. One oncologist really thinks I should do the chemo with herceptin, but the other oncologist is totally adament about not doing the chemo & herceptin-because my tumor was so small. So, not really sure what to do. Does anyone know where I could find research on percentages of survival of chemo/herceptin in small tumors?? Thanks for all you help, Tanya

Vegasmom · July 2009

Thanks so much Jill. I did check out "the muchy middle". There is alot of info. there. I know the decision is ultimetly up to me. I just don't know if all the risks of chemo/herceptin outweigh the %'s of reccurance. I'm still not sure what I will do....Thanks again. Tanya

jenbal · July 2009

Re research and percentages, here's what my onc told me (my tumor was about the same size as yours BTW): the rate of recurrence for HER2+ cancer is somewhere between 4% and 19%. Chemo cuts that in half; herceptin in half again. There are risks of secondary cancers (leukemia, notably) with some chemo and possible severe heart damage with herceptin, especially in combination with adriamycin. These risks are in the 1%-2% range. So with small tumors, no nodes, clean margins, etc., if the risk of recurrence were known to be closer to the 4% end of things, chemo or chemo+herceptin might not be "worth it"; but if it's closer to the 19% -- or even in the 10% range, my onc said -- chemo+herceptin would be absolutely worth it.

From everything I've read and heard, HER2+ cancers are just not something you want to fool around with, especially because the very characteristics that make them scary if not treated also make them very responsive to treatment. I'd be interested to know why the one onc is "adamant" about not doing chemo+herceptin. That's pretty strong. Do you have some heart risk factors that are being considered, for instance? With your stats, you probably wouldn't need adriamycin. Since you are also ER+, has this onc recommended Tamoxifen or any other non-chemo therapy?

You know, you can make this decision with research and numbers, which are helpful but at the end of the day only describe large populations and probabilistic outcomes, or you can consult to your body, your life circumstances, your family, and your god. In the midst of all this, try to get some time alone, in a peaceful/soothing setting, and just be still and listen. There may be an answer for you in the silence. --Jenbal

Vegasmom · July 2009

I was wondering if the odds of surviving are the same even with the double masectomy?? Anyone know. The one oncologist just is going by the size saying the cancer guidelines say not to do chem. He saying the bad effects of chemo outweigh the pros. And the other oncol. is just saying possilbe 25% chance reccurance if no chemo/herceptin is done. And if you start chemo how long after the surgery are you supposed to start? Is there a time frame. I feel like I have wasted so much time already, waiting on these doctors, and lab tests. Thanks for you help guys!!! Tanya

Vegasmom · July 2009

I was wondering if the odds of surviving are the same even with the double masectomy?? Anyone know. The one oncologist just is going by the size saying the cancer guidelines say not to do chem. He saying the bad effects of chemo outweigh the pros. And the other oncol. is just saying possilbe 25% chance reccurance if no chemo/herceptin is done. And if you start chemo how long after the surgery are you supposed to start? Is there a time frame. I feel like I have wasted so much time already, waiting on these doctors, and lab tests. Thanks for you help guys!!! Tanya

orange1 · July 2009

With such a small tumor, if you do chemo, it should be TCH, or some other version of chemo "lite", not AC TH. With TCH, there is a much reduced chance of heart damage. In the large adjuvant trial where TCH was tested, out of 1056 women that had the TCH regimen, there were 0 cardiac deaths, 4 cases of grade 3/4 heart failure, and 89 cases (8.6%) with a >10% decline in LVEF (left ventricular ejection fraction - a measure of the heart's ability to pump). With Herceptin, heart damage tends to reverse itself, with Adriamycin (the A in AC TH) heart damage is often permanent.

TCH is generally a relatively easy regimen to tolerate compared to some others - less nausea and other issues.

Jaimieh · July 2009

Tanya~ Sorry you had to join us I believe the doctor that is saying to do chemo. is not concerned about the size of your tumor but is concerned about the HER2 + aspect of it. I'm not a gambler so I think I would go with the chemo (TC or T)+ herceptin. If you find you can't handle the chemo you can stop it is your choice and then you will know that you have done everything to kick the beast to the curb. JMO..... I wish you the best in whatever you decide.

jill323 · July 2009

Tanya -

Wow... I am really getting a sense of deja vu here. Your case is so eerily similar to my own. I see you say your ER is positive. Do you know the % positive by and chance ? And what was PR ? The reason I am asking is that in my case, the fact that my ER was only a little positive (20%) and the PR was negative was a deciding factor for both docs to be a little more aggressive in my case, despite the small tumor. The reason why is that if I had been highly ER/PR positive, hormone blocking therapy (like tamoxifen) would have really made a dent in my recurrence stats. But, alas, not the case.

Anyway, to answer a couple of your questions:

1) You can ask your doctor to plot out your recurrence statistics with and without chemo and decide if it makes a difference to you. Is the benefit worth the risk? You can also go onto Adjuvant online yourself to do it (let me know if you need how to do that). Just make sure you calibrate your interpretation with your doc.

2) The reason that your one doc is only treating size and the other is treating characteristics is likely because that the MD Anderson study I posted on the other thread only came out in December of this last year. That study basically indicated the recurrence stats for Her2 positive tumors were higher than the non positive population - regardless of tumor size. That is where the 25% number is coming from as that is roughly the number reported in that study. So.. .this doc is more "up to speed" with the latest literature. However, the guidelines have not yet caught up with the studies. So, the other doc is technically correct when he/she says they are following the guidelines. Suggest you might think about getting a print out of that poster from that study and taking it into the doctor who is adamant in his "no way" comment. I did that with the one doc who suggested I do chemo (remember, I had my treatment prior to that study), and she was practically doing back flips in the hallway. It kind of validated her instinct. To help you out, let me go see if I can find the link and post it for you here.

3) All of the above said, given the size of your tumor, I personally would not (and did not) opt for "great guns" in chemo. If you go this route, there are "lighter" chemo regimens that appear to have less damaging side effects and risks. Orange1 mentioned TCH, which a lot of women are opting for and appears to have a manageable side effect profile. Several of us have done Taxol/Herceptin, which was also do-able. But, no reason to go the with big stuff. Oh.. and in case you were wondering, I did work through chemo. I won't lie to you, it was not easy at times. But, I did manage it, and I have a pretty demanding job. It did help that I have a wonderfully caring work place who allowed me some flexibility.

In any case, I hope that helps. I will be back in a minute with the MD Anderson poster link.

Jill

jill323 · July 2009

Tanya - As promised, please find the link to the poster below. After you hit this link, it is the first poster listed. If you have difficulty getting it to work, cut and paste into your browser.

http://www.posters2view.com/sabcs08/search.php?search=do&intMaxHits=10&where%5B%5D=&andornot%5B%5D=&query=md+anderson

In case you have difficulty, the conclusions from the study were:

 10% of tumors 1 cm or less were HER2-positive. The 5- year recurrence rate of HER2-positive patients with tumorsthat were 1 cm or less was 23%. HER2 positivity is a powerful negative prognostic factor for patientswith tumors 1 cm or less (HR: 2.7, 95%CI 1.44-5.0). Systemic treatment with anti-HER2 directed therapies should be stronglyconsidered in this population. Clinical trials should include this

group of patients

I hope this helps. Let us know where you come out !

Jill

Vegasmom · July 2009

Thanks so much for all the info & Jill thanks so much for that link. You have been so helpful in my decision. I am leaning more toward the chemo/hercertin just because I feel I will always have that thought in the back of my mind that I could have done more. So I feel I have to be the most aggressive for me & my kids. I'm only 35, and I have small kids. But I will let you all know what I deceide, waiting for the doctor to call today. I will ask her if it is possible to do a lighter chemo. Thanks, Tanya

jill323 · July 2009

Tanya -

Hi again.... You just revealed a pretty big piece of data in your age - 35. Anything under 50 is "young" in breast cancer terms and anything under 40 is especially young. Typically they are lean toward more rigorous treatment with women under 40 with invasive breast cancer for two reasons - 1) theoretically, younger folks can "take" the chemo better (at least that is what my doc kept telling me), and 2) the recurrence rates go up pretty intensely for folks under 40/50. I have to admit now being a bit surprised at how "adamant" the other doc was given your age.

Again, don't forget it is your decision. Gather as much information as you can and evaluate your risk/benefit ratio. However, don't forget it might be worth your while to have your doc plot out your recurrence stats to give you that grounding. For what it's worth, I think your gut is starting to lead you (based on your last post). And that is not such a bad thing. If you have this little voice gnawing at you in the back of your head, for what ever reason, it is OK to pay attention to it. In the end, I did as well. Sometimes when you fall into the "gray areas", that is really what you have to rely on.

Good luck. I look forward to hearing where you come out and whatever you decide will be the RIGHT decision. One thing I have learned, is that you don't second guess yourself once you decide. Just wasted energy, and does not do any good.

Take care.

Jill

P.S. I am leaving for vacation today and won't be on line for about a week. But, when I get back, I look forward to hearing what it is you have done. Laughing

jenbal · July 2009

Jill323 is right on -- my onc said if I were 35, he'd "throw the book at me" in terms of treatment. On the other hand, if I were 70, he might not recommend chemo, just because of the heart risk. As I was 50, I was in my own "mushy middle" but went for the chemo anyway. The more you say about your situation, the more I have to think the doc who is adamant against chemo is out of step with the latest regimens. --Jenbal

KarenW · July 2009

I had surgery late Feb - and they took, what they said was a 1/4 of the breast. The tumor was about 6 mm .... tested positive 3+ to Her-2 and positive for Estrog. 80% and Prog. 10% .... margins were clear and also the 3 lymph nodes they took were not involved. WHEW!

So, I am pretty close to your same situation and doing it NOW. I'm 44 ... and with no kids. So this has really "sealed" the deal for me to realize I won't have any. Thank god, my fiance is cool with this and we are just happy I am alive - and hoping to stay that way! :-)

I was NOT going to do chemo (before the Her-2 card got dealt me!) but then reconsidered .... I did a bunch of research and from the list of combinations that my Italian doctor gave me of options (she gave me 3 possible combinations and/or drugs that I could read up on in english!) but I ruled out a few of these possibilities because of the side effects and one drug had a bad outcome with Herceptin and had links to heart failure (ahhh no!) ... and then I found information that the lower level chemo drug called "Vinorelbina" when coupled with Herceptin --- had the same results as a higher and more "toxic" chemo combination .... so I chose (QUICKLY!) the lower toxic option.

I took this once a week for 9 weeks - and felt tired, had some nausea but took Kytril to combat this 4 days after the chemo.... AND Also, this chemo is available in a pill --- which I started 3 weeks in --- because someone set up my "drip" too slow and burned my veins up on the left (can't use the right side because of the side of surgery) ... very painful! And I wanted to save those veins - in the future for my once every 21 day Herceptin dose ..... so.... went to the pills and I didn't have as bad of time with the pills - as I felt less tired. I finished chemo a month ago and now am just doing the Herceptin for the next 8 months....

So, to your question .... do some reading on this lower chemo ....

Also, I am drastically changing my eating .... if you are interested I have a HUGE amount of information on this --- but a few of the books that I have read thus far - "The Crazy Sexy Cancer Survivor" by Kris Carr - and "The Cancer BattlePlan" by Anne Frahm. Both talk about "eating to live" - as I call it now. But the key is changing the PH in our bodies to neutral --- cancer can't live - or grow in a neutral PH!

Feel free to email me back here - for more info - or if you want to chat ... thanks! Auguri! Karen

jenbal · July 2009

Tanya -- Take a look at the "How do you know what is your rate of recurrence" thread on this forum. There is some good information there on recurrence statistics with HER2+ small tumors. --Jenbal

jill323 · July 2009

Tanya -

You out there ? Wonder what it is you ended up doing.

Jill

Vegasmom · July 2009

Hi Jill, how was your vaca?? Good I hope. Well, I have deceided to do the chemo. I actually go tomorrow morning to get my port put in then to chem. I will be doing 6 cycles of TCH. And of course 1 yr. total of herceptin. Thanks to all you guys you really helped me make my decision. Not that I want to do chemo(I'm scared ****less!), but I feel I have to. I don't want the cancer to come back & think why didn't I do everything that I could have. I also had a tie breaker, one other oncologist said do the chemo. I'm just really scared & nevous-I think the anticipation of chemo is the worst. I'm just not sure what to expect. How will I feel, can I work, will I be able to take care of my kids?? Anyways, I will keep you posted. PS. If you have any good tips for me I should would appreciate that.......Tanya

jill323 · July 2009

Tanya -

Hi. I had a feeling this is where you were going to come out. AND... you are right.. the anticipation is the worst part. Once you get one under your belt, a lot of the anxiety goes away.

As far as "tips" goes... there is a shopping "list" of sorts on the top of the chemo forum detailing the things you should pick up. Take a look at that. I found it to be very helpful.

I will send you separately a private message detailing what I found useful in dealing with work while on chemo. I am a Research and Development manager for a big company. So, remember that when I send it to you and take from it what might make sense for your work.

Now as far as kids go.... I think mine are a bit older than yours (they were 11 and 14 when I went through chemo). That made it a bit easier as they were actually a help to me during this. Do you have help at home? Everyone is a little different on chemo, but I found that during my three week cycle, there were a couple of days I was toast, but pretty much willed myself to be as "normal" as possible during the rest of the time. I even managed to make Thanksgiving dinner and go to a class reunion while on chemo (luckily, they fell during my second week off in the cycle). You will find what works for you and what does not. But, I will admit that my husband was a real trooper during that time, which is why I asked if you have help at home.

Anyway, I will see if I can find that message about working and chemo and send to you now via PM.

Jill

jenbal · July 2009

Tanya -- Good to hear your news (really -- even if it is scary!). We'll be thinking about you! When do you do your first chemo? For the vast majority of folks, TCH is really very manageable. Keep on top of the fluids and the exercise as they will both really help your strength level and well being throughout. Be sure to ask for help when you need it too! (For the first time in my life, the other day I said yes when the grocery checker asked if I needed help out to the car!) Check back in with us if you run into anything you are unsure about. Consider yourself hugged.

Mocity · August 2009

Tanya,

I just wanted to say good luck to you. I met Jill on this forum because our cases were pretty similar and were in the same spot you are not too long ago. I also did 12 weeks of Taxol/Herceptin and am now getting Herceptin every 3 weeks till end of this year. The decisions are the hard part. I finished up the Taxol in Jan09. I am 38 and worked full time the entire time. It was tough but do-able. My thoughts and prayers are with you and if you have any questions feel free to PM me. Take care!

Dennis · August 2009

Tanya,

Good luck to you. My wife was in similar situation in 2007.

One thing I would like to add is, Chemo, Radiation are only good for destroying tumors.

Herceptin / Taxol is the only one that can destroy cancer stemcell to prevent cancer from comeback.

Ril · August 2009

Hello-

I am also new to this forum and am glad to have found this discussion board. I'm 40 and Jewish (significant regarding BRCA genetic test). There is no history in my family. So far, I've had a lumpectomy, and my nodes are negative (knock on wood). I am a Stage 1A.

I am a Triple Positive, and I will have to check my numbers for ER and PR. My family and I have been conducting a great deal of research on this topic, and I have appointments with three oncologists (and three radiologists, which I would also like to discuss on a future post--I don't qualify for the 5 day balloon option, but from what I can gather there are 3-week, 4-week, and 6-week regiments). I'm definitely inquiring into using Herceptin without chemotherapy.

I so appreciate everyone's honesty and postings, and I will post again when I hear the doctors' opinions.

Vegasmom · August 2009

Thank-you everyone for your support! A big thanks to Jill who has answered alot of my questions. I started the TCH 2 weeks ago. So far so good. I feel great this week. Next week mon the 17th I will go for my 2nd treatment. # 1 down- 5 more to go! I just gotta keep telling myself that! My hair has started to fall out today. But I have my wig all ready to go. If anyone else would like questions answered you can pm me. Thanks again for all your support......Tanya

Ril · August 2009

Is anyone Triple Positive with negative nodes? Has anyone NOT done chemo but has had ONLY Herceptin?

jennsdogs · August 2009

Ril:

I am triple +, with negative nodes. I am going to the onc on Friday to determine what my tx is. I am 40 (young) so I am wondering? How about you?

Chemo or no Chemo??Confused!

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