Chemo or Not

Mandy85

Hi everyone, I am wondering should I have chemo or not. You see, my medical oncologist recommended me to have chemo but I can also chose not to go with chemo, just radiation and tamoxifen is ok too. The dr said that I am in the low score of my bc to be recurrence, but still think that chemo is a best option for me cause considering that I am still young and lots of unknown question that can not be answers.

 Thanks 

Mandy 

ratbait

Mandy,  You are very early stage.  As such, you have time to make an informed decision.  The best advice I can give you, having seen so many friends go through agonizing decisions, is to get a second opinion at a major, comprehensive cancer center.  I'm not sure where you live, but you may have to travel to a large city.  Good places:  MD Anderson in Houston, MayoClinic, Sloan Kettering in New York, Dana Farber in Boson, Fred Hutchinson in Seattle....and there are others.

Outcomes are much, much better at large cancer centers.  They will have seen more cancer, and more premenopausal cancer, which is significantly different than old lady breast cancer.  The fact that you are so young means that you have a long, long life ahead of you.  And quality of life is important.  We aren't qualified and really don't know enough about your case to give you specific advice, but we can give you sound advice.  Run to a major cancer center and get a second opinion.  Your great grand children will thank you for it in 60 years!

raincitygirl

Your tumor is slightly larger than mine, but otherwise our statistics are the same.  I had four opinions, none of which convinced me of anything - there was a "you must do chemo", "you absolutely shouldn't", and two "i could go either ways".

I started the chemo based on fear, and during a pre-meeting with the rad onc, came to learn about NCCN guidelines (you want page 16)., low Ki-67, and lumenal A cancers.  The recommendation is not very strong for chemo.  That said you are probably quite a lot younger than I and perhaps I would have made a different decision if I were 40 rather than 58.

Best wishes to you!

Mandy85

Thanks ratbait , I know what you mean, I was treated in a cancer center, where they only specialize on cancer. The thing is my fiancee and I can not come up with a good choice, given the fact that I will loss my hair during the treatment. Maybe I am greedy, but I really want to have my hair in our wedding day, which is next year. That is what we stuck at, and also about me going menopause early.



Raincitygril, my dr didn't say I have to do chemotherapy, but he is bias toward it because like I mention, he can not answer the unknown question, and given the fact I am young. He really want to prevent the possibility of it coming back.



Thanks,

Mandy

lwarstler

Mandy, 

You have a really hard decision and I do not know your situation. A second opinion might be a good option and you can actuallly ask John Hopkins for their opinion online without having to go there if you give them your age, and the specifics of your cancer. I did that as a third opinion and they explained things to me very well in about 24 hours. This is the link:  http://www.hopkinsbreastcenter.org/services/ask_expert/  They could also talk to you going into early menopause. I am not sure how old you are, but I did read that it was not common in women under 36. 

I don't think it is greedy to worry about your wedding, but you do want to make sure that your future together will be long. They make amazing wigs that look like your natural hair and there is a good chance you will have your own hair in a year, just not as long as you might like. I can certainly understand your concerns though and they are very reasonable. I think getting more info might help you make the decision that is really best for you.  

cookiegal

here's the thing, when I look at the oncotype chart, the low women did not benefit from chemo, maybe you can say the hi ki67s are an exception.

I have participated in so many of these threads, and I get the fact that the prognosis is more dire for young women, but that doesn't mean the chemo will work better, if your cancer is low oncotype and doesn't respond to it.

I sort of wonder if oncs just fall back on chemo, or maybe they don't trust the oncotype test (which is their perogative. ) 

So don't just look at the RS but look if there is benefit for you. To me it looks like the low Oncotype women did very slightly worse on chemo, within the margin of error. 

ringosmommy

Mandy-I would also throw in there the controversial, how willing are you to make any lifestyle changes that you can or might need to?  I don't know you, so obviously, I'm not saying anything personal so please don't think I am or anything like that.  But there is a  lot of convincing research out there that diet, exercise and abstaining from alcohol (for the most part) help prevent recurrence.  So people are totally willing to do all that, and some not.  I'm not judging anyone by any means, I cool with whatever people choose.  but I would say, if someone is really hard core about changing up anything that's 'bad' for them, that would help as well.  especially with er/pr + not brca + cancer, yk?

Cori

ratbait

Mandy, did you have an oncotype? What was the result?



What did your complete path report say?



Also, there is a huge difference between a major cancer center and a place that only treats cancer. They are not the same. A major cancer center has nutritionists, therapists, genetic counselors, and research in addition to the surgeons, oncologists and rad oncs. If you are not at a really, really big place, you are not at a major cancer center.



As for chemo, what type is he recommending? For how long?

ratbait

Also, hair loss is a big thing. But know that some of us deal with side effects from treatment that last forever.



Have you had genetic testing done?



And I agree with Cori that studies are coming out all the time regarding lifestyle.

ICanDoThis

Mandy

I see that you are in Michigan - if you are in SE (which most of us are), you have a choice of Karmonos, Henry Ford, and University of Michigan. St Johns is also very good, and Beaumont has a really cutting edge radiation guy.

 I believe that U of M has specialists in breast cancer in young women. It would make an excellent second opinion if you don't already go there.

Have you gotten your oncotype score yet - from your statistics in general, it looks like you are just at the bottom edge of having a chemo benefit.

A few years ago, all women with cancers over 1 cm got chemo. But, then they started noticing  that this didn't change anything. Then they raised it to over 2cm, yes, but over 1.5 cm, maybe. 

When they first tested tamoxifen, they didn't know about estrogen positivity. So now they do - chemo is a little less likely to help if you are ER/PR+, but some tumors respond well to it. The big gun in our arsenals is tamoxifen, and later, maybe aromatase inhibitors.  Another factor here to consider is that a lot of the reason that young women have poor prognoses is that many of them have triple negative cancer, which is more aggressive and doesn't respond to hormone therapy (tamoxifen and AIs). Studies are starting to show that, if you analyze BC outcomes in young women by type of tumor, that their outcomes are very similar to the outcomes of older women. Various doctors are more or less aware, or more or less comfortable, with being on the cutting edge of these treatment decisions. Remember, I said starting to show.

When you add grades to the mix, Grade 1 - chemo doesn't help much, if at all. Grade 2, chemo likely helps some, Grade 3  chemo likely to help.

One more thing, just in case you aren't totally overwhelmed, is that the chance of  ER/PR+ cancer never really goes away. 1-2% of women with this diagnosis recur every year, with statistics no different from the rest of us. And forget the 5 year thing. Your chances of being here in 5 years are about 100%. But it can, and does recur, mostly in the first few years, and then consistently  in  5,10, 15 etc. years.

The reality is that your prognosis is pretty darned good. The question that you have to answer for yourself is, not, do I want to have hair for my wedding - lots of people look really good in really short hair, and wigs are awesome for 1 day, it's

 if you do not do chemo, and you have a recurrence in 10 or 15 years, how will you feel? For me, I felt that since my odds of damage from chemo were higher than my odds of a benefit, I didn't do it.
But only you can say which scenario scares you more in the middle of the night. But just don;t do it because your doctor doesn't know.

Hugs to you.

Mandy85

rabait, I already have my oncotype done, it is low, at the margin too. That is why the dr give me the choose of either go with chemo or not. The path said my report is negative with all margin, after the lumpetctomy, lump nods is negative too.And I have not have my genetic testing done yet. 

 Like ICanDoThis said, I live around southeast Michigan, and yes, my cancer center is Karmanos. That is why I said my dr is good at what they do. I haven't get a second opinion yet.  I believe I was a great 1, but not too sure about it too. I see that you and I are almost the same, so you didn't go with chemo? 

 ringosmommy, to answer your question, I don't know. Well, I don't smoke, drink (alcohol), I am in a good diet, (I think). So yea, maybe I am willing to change my life style if it help. 

 Also, my dr did mention that if I go with chemo, I will be giving a light, not strong does of the chemo for my treatment, which last about 18 weeks.  I know there is a lot of wigs that look like real hair, still we can not decide, so my fiancee and I need time to talk about it, like the pro and con of each thing you make in life. 

 Thank you, you guy are the best. I really appreciate the insight you guy give me and the support. I will update on my (our) decision. 

 love and hug, 

Mandy

cookiegal

This is how I decided.

My chance of mets without chemo 14%

My chemo benefit 2-4% 

My chance of mets with chemo 10-12%

I don't think even if I got mets I would say, oh if I had had chemo this would not have happened. There is as little as a 1 in 7 chance the chemo would have stopped the mets. If it could have gotten me to 8 or 9 percent I would have done it, but for a 2% benefit? The risk of long term serious complications is around 3-4%.

And I had an oncotype of 22 with a positive node. 

raincitygirl

cookiegal - It is nice to know I am not alone in my thinking   No nodes, but an oncotype 24 produces the same percentages for me.  I did about half of it and I can tell you the peripheral neuropathy and remaining chemo-fog from nearly a year ago, are still side effects that I am glad I didn't allow to go any further.  I was very fortunate to have a conversation with a renowned onc who i met on vacation - he checked out my stats, and after seeing them, told me that as a lumenal A, low Ki-67 BC, he didn't think I would benefit.  I then researched and discussed even more and came away knowing that I needed to stop.  No regrets at all.  And, if you look at current NCCN guidelines, it seems to be in line with their recommendations.

cookiegal

yea rain city girl...

now we keep our fingers crossed! 

raincitygirl

No more than anyone else   We will never know if it was right or wrong, but we would also never know if chemo was right or wrong for us.  For others with different choices, I support your choice and your reasons. 

Mandy85

Hi all, hope everyone is doing good!

Anyway, my family, fiancé and I finally made up our mind about chemotherapy or not. Our answer is no to chemotherapy
, like what cookie gal said, my chance of coming back is 8 percent, and with chemotherapy, it might only lower by 3 percent. The only reason that my dr bias toward chemotherapy was do to my age and did not know if there is any travel to my other organ or not.



Rain, you are right, we might or will not be able to know if the chemotherapy actually work or not. The choice is your (mine) to decide, and I make the choice of not going with chemotherapy. so in the future, if there any regat, that will only be mine, not the doctor or anyone to blame except myself.



Well, good day to everyone. Oh, I just went to the hospital to get my ct for the radiation, the tattoo they marke hurt quit a bit. Ouch!



Mandy

ICanDoThis

Mandy - glad the decision-making is over!

Best of luck for you in rads

raincitygirl

Mandy - either way, it is good to have a decision.  I found decision-making to be very stressful so hope you are somewhat relieved.  (((HUGS))))

Mandy85

Thank you everyone, thanks for the support and suggestion.



Icandothis and rain, when we were making the decision, it is very hard and can't breath. Than after our family get together to talk it over, we meaning my fiancé and I concluded that chemotherapy may or may not helping me, so decided not to go with chemotherapy, which in the back of my mind there this little voice telling me, what if. What if it actually help, but my fiancé said, we may never know or if this "what if" is coming back in the future, we know how to handle and face it.



So yea, we feel like a heavy lift is off us, and we can breath again.



Best of luck to very one that need to go through what we all have to go through, making decision regarding treatment is very hard.



Love,

Mandy

raincitygirl

Mandy - there may always be a little voice but remember that you made a decision based on facts related to your particular cancer and situation.  My onc told me that it was more likely that it wouldn't have value for me than it would - this doesn't happen for everyone.  I figured following the NCCN guidelines would be the best I could do.

Mandy85

Hi raincitygirl, thanks for the support. I agree with you, I am not regretting it, I will stick with my decision. If there is any problem, I will and I should not blame anyone except for myself.



Anyway, I am here to update my treatment, I started my radiation treatment this tuesday, so far so good, except some pains and sore that around the breast and arm. But I can take that pain.



Oh, does anyone have this problem after you done your lumpectomy, your breast, mainly your nipple. Do you gal feel the pain of a needle going in to your nipple? Or some sort of sore/ pain that hurt a lot? My doc said it's the scar that is scaring that is why I feel the pain. Does this happen to any of you?



Best wishes to everyone,

Mandy