opinion on chemo

bcisnofun

I know all of you wonderful people on this board will say the decision is mine and my Dr. makes recommendations, but I'm interested in your opinions.  I am stage one, grade one, er/pr+, her2/neu neg, 45 years old and in otherwise good health.  BLMX and reconstruction completed.  Oncotype score of 12, or 8% chance of distant recurrance.  Modeling seems to be about a 2-3% improvement in risk if I do A/C x 4.  Dr. on fence somewhat but more on side of recommending chemo because of my age.  I am willing to do whatever it takes in terms of short term SE's to reduce risk of metastasis - no hesitation.  My concerns are the potential longer term SE's - heart failure and leukemia.  I can't find good numbers on risks for those things.  I don't want to try to be so aggressive with reducing metastasis risk by 2-3% that I give myself some other very difficult diagnosis with a higher likelihood.  What are your thoughts? 

voraciousreader

Why not get a second opinion or have your doctor present your case to a tumor board?  You are young, so that is an especially important consideration.  The good news is that you have a grade 1 cancer but  probably has you sitting on the fence because grade 1 tumors don't respond as well to chemo as grade 2 and 3.  Have you discussed with your physician ovarian suppression if you are still menstruating?  Although it is still in clinical trials, you might get that same percentage reduction from doing O/S as you would if you do chemo.  I would also check out the NCCN 2011 breast cancer treatment guidelines.

Good luck.  Thoughts and prayers to you.

bcisnofun

thanks voracious reader.  NCCN said no chemo if oncotype under 18.  I've read some posts that other docs say under 12, or under 11.  So I know it's a mixed bag of answers.  cancermath.net said 1.1% improvement in risk with chemo.  Other models say 2-4% improvement in risk.  Although I really do think I have a great med onc doc who is very well respected, another doc opinion is probably exactly what I need to do.  Thanks -

Sherbear

I agree with VR, would get a 2nd opinion and see if they can take it to 'tumour board' just so you can get a sense of what everyone is feeling about it.  My one onc recommended me to do AC-T only if my oncotype score was in the intermediate or high range so I just missed it and stuck with TC.  Due to my age (late 30's), I was told chemo was going to be recommended by everyone I saw......and it was.  Checking the NCCN guidelines is a great idea too.  Good luck, you're in good company here and I"m sure you will here from a lot of women

Megadotz

When you're getting the second opinion, ask about TC as an alternative to AC -- It's the adriamycin that is related to the heart health affects.  

There are lots of trade-offs with choosing treatments.  Good luck.

Meg 

Beesie

To your question, here is some information about the risks and side effects of AC, based on the clinical studies:

Adriamycin PFS Side Effects & Drug Interactions 

If this link opens to the first page about the drug, click on page 3 to see the risks and side effects. The table with data is probably most helpful.

ruthbru

My oncologist said that most people who have long term problems with adriamycin are those who have higher or longer doses than the four I had, or that you would have. That being said, TC might be a better choice for you. Ask your oncologist why he/she recommended AC over TC. Best of luck! Ruth

Anonymous

Before I had AC, my first Onc had an echo cardiogram done.  I recently went to a cardiologist myself and had another one.  I found him to be very knowledgeable on chemotherapy and the heart.  I think it will be easier for you to find information (whatever route you choose to go) on the effects to the heart than questions about what the future holds regarding leukemia. 

I feel that the record keeping for long term patients is not good generally.  I would be surprised that anyone could tell you 7 year effects, 10 year effects, on chemotherapy and leukemia.

dlb823

I absolutely second the suggestions for a 2nd and even a 3rd opinion.  As much as you think chemo wil give you an additional edge, if you truly don't need it, then its risk might be more than that 2 to 3% advantage.  Also ask how that 8% changes if, for some reason, you couldn't do Tamoxifen, for example.

I did TCx4, but if I'd had an Oncotype as low as yours, and knowing what I've learned here, I would have asked about CMF, which I believe is even a lighter regimen than TCx4.  I'm not a doctor, so don't know if it or any chemo is really appropriate for you, but it's just one more possible avenue to explore.  I might also ask about the version of Taxotere that they give when women have an allergic reaction to actual Taxotere. I can't think of the name of it at the moment (anyone???), but it seems to have much fewer SEs because of fewer ingredients.  The catch to it is that it's a lot more expensive, so insurance co's are reluctant to approve its use unless you have a problem with Taxotere.

If you're interested, I can also direct you to an on-line presentation by my onc at UCLA, where she explains the hx of chemo for bc, including the most recent research studies and stats on congenitive heart problems and leukemia risk from Adriamycin.  That leukemia risk is very small, but, it's irreversible. -- certainly nothing to gamble with if you don't need it.

It's good you're asking questions, which should help you arrive at the right decision for you!   Deanna 

MarieKelly

I would most definately agree with the other ladies responding here and advise that you get at least 2 more oncologist opinions on the need for chemotherapy.  Considering that your tumor is small at 1.5 cm, grade 1, node negative, hormone receptor positive, Her2 negative and with an oncotype of only 12  AND that you've already had bilateral mastectomy, your risk for distant recurrence is extremely low...and you don't even need to consult graphs or charts to know this  -none of which are all that accurate anyway.  Besides, the oncotype result itself is confirming what was already known - very low risk.

You're never going to be in a position, with or without any further treatment, where you'll be guaranteed 100% smooth sailing from here on out and a RS giving 8% chance of future distant recurrence is very, very good. Since chemo doesn't do much of anything for cancer cells that are dividing slowly, you need to give very serious consideration to risk vs benefit...which in your case, might very well be mostly risk and little to no benefit. I've gotten the impression from reading what you've written that maybe you don't fully understand what a good position you're in.

Is there something else in particular about you cancer that put this oncologist "on the fence" about chemo other than the size of the tumor and your age (actually, not THAT young at 45)?  The reason I'm asking is because I honestly can't imagine any oncologist in this day and age feeling that chemo is the best route to go given your circumstances presented here. How old is this oncologist?  In the not so distant past, they would automatically give chemo to just about anyone who had an invasive tumor greater then 1 cm regardless of any other prognostic information in the equation. More individualized treatment has come a long way since then and they've learned that blanketly treating in this way is overkill and unnecessary. Sometimes you'll run across oncs who get stuck in the comfort zone of old school ways and don't really like to change how they do things. My gut feeling is that you might have one of those.

So please do yourself a big favor and seek out other opinions before you make a final decision on this - preferably from oncologists not directly connected to the current one.  Best wishes to you.

AnnNYC

bcisnofun, I'm joining the chorus recommending a 2nd and even 3rd opinion.  12 seems like a low Oncotype score to me, considering that the TAILORx trial will not give chemo to anyone with a score of 10 or less, and "randomizes" (randomly assigns to either "tamoxifen only" or "chemo+tamoxifen") anyone with a score of 11 to 25.

(TAILORx is an ongoing clinical trial evaluating the outcomes in 9000 women of treatment guided by Oncotype score -- more info here: www.cancer.gov/cancertopics/factsheet/Therapy/Fs7_55.pdf )

SoCalLisa

This is really a hard decision to make...the doctors tend to talk in terms of

reducing risk of recurrance..but they talk very little about side effects, both

short and long term...I wish I had known more about that as I had chemo over ten years

ago and still suffer from the serious  consequences...

Kay_G

I just finished AC 2 months ago, and believe me it was no picnic.  But side effects for 8 weeks are worth reducing the risk of recurrence IMO.  However as SoCalLisa says, the long term effects are a different matter.  I don't know if I'll have any or not.  My tumor was grade 3 and I am Her 2 positive and also have lymph node involvement, so I had no choice.  I would do what the others are suggesting and get some more opinions.  You are in a good position, I'd get the opinions and just get comfortable with a decision and then don't second guess yourself.  Best of luck.

mdg

I am 45 and had an oncotype score of 17 and the rest of my stats are below.  I got two opinions....one said chemo.  The other said no chemo.  I had to decide...I was in a gray area.  Both med oncs agreed if I did chemo they both suggested TCx4.  I decided in the end to do TC for the 4 cycles because I also had angiolymphatic invasion on my pathology report.  That made me very uncertain and scared to not do chemo.  I completed chemo on 5/4 and am glad it's over.  My compromise was to do cold caps to keep my hair.   That helped me emotionally a lot and made it easier since I have a 4 year old.  He never really knew anything about chemo.  It is a hard decision and either way there are no guarantees.  I would seek a second opinion to see what another med onc would say.  If you have any questions about my experience, feel free to PM me...I don't mind.  Good luck!