What % of help did they tell you chemo will give you?

SophiaMarie

Just trying to get prepared for a decision. Waiting for the oncotype dx results to find out what I should do. Otherwise the onc said chemo would increase my chances of living 10 yrs by 3 - 3.5%. is that typical? Seems so low...

SpecialK

That is because the vast majority with your stats (say at least 85% in most early stage, smallish tumor with no nodes) would live for 10 years with surgery alone.  The problem is that there is no way to know with absolute surety who will, and who won't, need chemo and/or hormonal therapy, and who will, or will not, recur without it.  Oncotype Dx and Mammaprint are a step in the direction of telling us who will not derive as much benefit from chemotherapy, but in my opinion chemo and hormonal therapy are regarded as insurance against recurrence for early stage patients because the mechanism of recurrence is so poorly understood.  Have you looked at Cancermath or PREDICT websites and put in your information for survival rates?

Linda-n3

I am very tired tonight, so this may not make complete sense. But you need to understand how the statistics and estimates are arrived at - they are based on populations, not individuals. For example, if 100 women are given chemo and 100 women with the same kind of cancer did NOT receive chemo, there would be 3 or 4 more in the chemo group who survive 10 years than in the group that did not receive it. Many women look at chemo as an insurance against recurrence, but it is not truly insurance because many women who get chemo still get recurrence (mine returned 6 months after I finished a very toxic chemo).



(My numbers gave an estimate that it would reduce my chances of recurrence by 15%, which seemed to meet my threshold of 10% or better for benefit due to the high risk of toxicity. But I didn't really understand that it really meant that of women given chemo with my type of cancer, 15% got enough benefit to survive 10 years that would not have survived without the chemo; without the chemo 85% of women would have recurrence, but it wasn't known whether that would be in months or years. So I took a chance, and I lost anyway. I actually believe using hormonal treatment at the beginning rather then chemo first would have done as much good for me, if not more, and chemo would have been an option for recurrence (I don't have much available to me now as I cannot take any of the taxanes or anthracyclines due to reactions to both classes of those drugs.)



I hope this helps you understand a little, and I apologize for the editorializing from my own experience. It is NOT what most women experience. You need to really have a good talk with your MO, and you need to TRUST your MO to guide you to a treatment plan that will be in your best interest. (I didn't really trust my MO from the beginning, wish I had gotten another opinion, finally got another MO after 2 years, 3rd recurrence, and mets, so please don't make my mistake - make sure you trust your doc!)

Lenn13ka

Sophia- the results of the Oncotype will be very helpful to you. Make sure your MO goes over the entire report with you because the graphs help you understand the % benefit.

I got a score of 17 . With that I had an 11% chance of recurrence with just Hormone treatment. Chemo only added a 1 - 2 % benefit. I ended up getting several opinions -split 3/3 but ended up opting out of chemo. It is a tough decision but you have to do what feels good to you. My Mo reccomended chemo - standard of care - but when I bowed out she was fine with it. The strongest NO came from a top BC research center. You and I have similar staging but I had a small positive node and am post menopausal. Hope the decision process isn't too draining for you.

SpecialK

It is also important to note that Oncotype Dx gives you a score that assumes you will take hormonal therapy.

TwoHobbies

Yes understand that the oncotype assumes you take hormone therapy.  I think a lot of people misunderstand this.  If you are ER+, you'll be recommended to take hormone therapy.  The oncotype measures whether ADDING chemo to hormone therapy provides a benefit.  If you are highly ER, PR+, it may provide only a small % benefit.

pupmom

In my case, the Oncotype test said chemo would lower my survival percentage. So not taking it was a no-brainer.

SophiaMarie

Wow Yorkiemom - I didn't even realize I could go that way - good for you!



I did not know the oncotype results assumed hormone therapy - that's very good to know. My mo said tamoxifen would increase my odds by 2% - not a huge amt either.



And Twohobbies, my er/pr were both 4+ - could that mean I might have a low oncotype score then?



Linda-n3 - this number thing is hard for my brain to process - I appreciate you taking the time to explain. I'm so sorry to hear what you're dealing with!! (((Hugs)))

TwoHobbies

Please don't misunderstand my post.  I certainly cannot predict your oncotype score. If ER+ and PR+ was the only factor, we wouldn't need the test because doctors already have that information from the pathology. I was trying to explain why your doc may be estimating the 3% benefit for chemo, which as you noted is not so high.

SophiaMarie

Actually the 3% came from an online site he used - and I don't think it asked how er/pr receptive the cancer was. I'm also wondering if this is typically how it's done - if I had the password I could've done it myself. It spit out the chemo regiment too.

coraleliz

SophiaMarie-I think you are talking about the adjuvant online site. If you want to visit you have to register as a medical professional. I'm a nurse so I registered as such. Many have just claimed to be. (Can one still get to heaven if you lie to a website? May have to go to confession.....)

You may have to ask for the oncotype test to be run on your tumor, if you want the additional information. Not all MOs order it routinely.

I was initially told chemo would give me a 6% benefit over Tamoxifen alone. I thought that was small. But I had 2 tumors & involved nodes(which adds to the scariness). I really had to push to get the oncotype test done. I was willing to pay if my insurance didn't(fortunately they paid!). I was going to do chemo for a intermediate or high score. It came back a 4.

Despite my low onco score & benefit of only 6% per adjuvant online, it wasn't a no brainer for me. I struggled with it but ultimately declined chemo. I have no regrets & made that decision 2 years ago.

It will be a relief when you decide & move forward with your treatment plan. I so hated being where you are right now.

SophiaMarie

Actually I'm waiting for the oncotype results now. It was just sent to lab on Fri.

Lenn13ka

Sophia - the web site that someone mentioned above..Cancermath.. Is also very helpful with percentages. Genomic Health, who does the Oncotype, is very receptive to phone calls. I called them several times and they let me know where the test was in their process

Like coraleliz, this was the worst place to be in this whole ordeal. I didn't have any clear cut answers with the 3/3 split but am now totally ok with my decision not to have chemo. This was just in late May. Once you get all the information you will be able to make your decision. Have you gotten a second opinion? It is always good to get one at a different facility. That was the most helpful to me and really helped me make up my mind.

Jasra

I too tried cancer math but I find it so overwhelming. It's so hard to decide if treatment is worth the risk when you are in the grey area. Even the grey area is different for everyone. I wish I knew what my magic number was. I found it disconcerting to read I only had 30 years. Hopefully the oncogene test will add reassurance. 

ruthbru

Sophia, your stats and mine look pretty similar. Chemo reduced my risk 20%, anti-hormonals 40%. I did both. Of course, statistics are one thing, but each of our own personal chances of recurrence are 100% or zero...I wanted to tilt my odds toward the zero as much as I could.

ForMyGranddaughter

Hi,

I met with 2 Oncologists, they both recommended chemo based on my dx (below), my age (49) + the fact that 1 node was involved.  My Onco score was 17 with an 11% 10 year recurrance rate.  The 11% was assuming hormone therapy.

There were no trials or stats to determine whether or not chemo would benefit but recommended it as a course of reducing the risks from 11% to 7.6%.  They both noted that before the Onco test, chemo would have been part of the course of treatment. With the Oncotype DX testing my numbers where right on the line so they gave me a choice.

I decided to go for the chemo, knowing that receiving it does not guarantee there will not be a recurrance.

SophiaMarie

Lenn13ka, they would give you information? I figured they'd only talk to the dr! Hmmmm...

Yeah, waiting yet again is hard - will get harder towards the end of the week.



I'm going to be calling Froederdt in Milw on Monday to set up appt for 2nd opinion. Have to make it for the following week as I want the oncotype test results to be back first. I was told it would take a week and it went out later Friday.

Lenn13ka

Sophia- they won't give you the results but they will tell you where the test is at. I hadn't heard from my MO, so called genomic and they told me the test results had been sent to her the week before. Like you, I needed them for my second opinion visit. Just identify yourself as the patient. I also called at the beginning to make sure they received my sample.



Was you positive node a micromet in the sentinel node?



The waiting sucks but take whatever time you need to make your choice. I am glad you are getting a second opinion. Usually, you get a second read on your pathology. I went to Dana Farber in Boston for mine. It is a research hospital so they offered a different take on my pathology than my Cancer Center.

SophiaMarie

Lenn, thankfully my node was clear!



That is good to know that I could call them - I told my onc that I needed to be called right away, but that doesn't mean they will.



For some reason I'm dealing with this ok right now... It's become kind of like a dream.... I'm aware of the possibilities, but it's all "outside" of me... Not that I don't cry... I did in the shower this morning.



I'm not happy though with the stats though - even though mine are easier than many of you, even my husband got the impression that if I don't die from something else first, I eventually will from this!

Lenn13ka

Sorry, i thought I read where you had 1 node positive, Even with our stats., mine are like yours, our prognosis is pretty good. That is what I am moving forward with. I skipped chemo, have finished rads and am working on getting my energy back and enjoying life. My first MO follow up is Tuesday. It seems a long time ago I sat with her and made the chemo decision, but it really wasn't!
Ps my MO was supposed to call me right away too but said she wanted to pass my case around to other Dr's so that is why she didn't call With onco results. That is how I ended up with So many opinions at my facility. It was the DF visit that was the deciding vote for me for no. Glad toy are doing ok. I was the same way. It was a very busy time for me at work so that was a great distraction. I got a little PTSD when it was all over. Moving past that now thanks to a lot of womenf on these boards!