chemo benefits outweigh chemo adverse SE for tumor < 5 mm

sandyp11

Hello ladies. Is there any one of you get chemo benefits for small tumor 0.4 cm, IDC, nodes 0/2, ER +,PR +, HER2 - and has been survived for more than 5 years? One of my MO recommended for no chemo, even with my oncotype score of 31. He said there are no data out there that shows chemo benefit for small tumor. In the other hands, chemo can cause permanent damage to your healthy body. Thank you so much for your input.

DaraB

Sandy11, my tumor was larger than yours, 1.5 cm, but my onco score was 20. My cancer center requested to do another test specifically for intermediate onco scores. Mine came back high risk. I certainly would never do chemo unless it was highly recommended. Can your MO do the MammoPrint or Prosigna test to check the recurrence rate 10-15 years out? I'm just finishing up my last chemo tomorrow. It hasn't been fun, and I did lose my hair, but it hasn't been all that bad, and it was recommended to make it without recurrence with my IDC.

sandyp11

DaraB, Is it your picture? You 're so beautiful w/ such a healthy long hair. BTW, I did ask my MO that is there any other test to double check on my score. He didn't mention any of those 2 tests you listed. He said he will use a tool called Adjuvant Online to check, but that website has been down for months now. I'll look into MammaPrint test or Prosigna and request my MO. They must be expensive and limited used, compared to oncotype DX. However, it is very necessary test to help me decide for my treatment. Thanks for your info. I wish you all the best on your last cycle of chemo.

Pessa

My tumor was 9mm, Onco score of 28. I had bilat mastectomy and had chemo. That was 6 1/2 yrs ago. I am not aware of any permanent damage from the chemo. Am still on an AI. NED

sandyp11

Pessa, thanks for your encouraging input. The new guideline for early stage BC is CT (cytoxan and taxotere) instead of AC which supposed to have less SE and more tolerable. You had AC and still going strong for the past 6.5 years. That is a great news. Big hug for you.

Lisey

I had the same oncotype as Dara (20).. and did the mammaprint as well and it came back LOW RISK, so no chemo for me. Mammaprint is a very good solution for people with intermediate oncotype scores. It's the biggest test in europe and is gaining traction here in the US. When all is said and done, I'll pay $500 out of pocket for the second test. Well worth it to avoid chemo.

Lisey

Also keep in mind that up to 10% of people using Taxotere have permanent hair loss and it never comes back. Chemo is no joke.

Jackster51

Yep, I never got my hair back after Taxotere, and 5 years later I have crippling neuropathy in my left foot.

Claire_in_Seattle

I did AC + T seven years ago, and am just fine now. My cycling injuries a few years back bother me more than the slight loss of sensation in my finger tips and bottoms of my feet. But I did six dose dense AC as was on a study, and not the usual four.

I am on my game professionally, and I just completed nine days of riding 60 miles or more this past summer. Hoping to get one 60 mile ride more in.

I am saying this, because it really is possible to make a full recovery and live a full life post chemo. I will say that it takes work and discipline, and I think that lots of exercise is very important.

I am thrilled to be here to enjoy this time in my life. Really, really grateful too. - Claire

sandyp11

Thank you all for your opinions.

Lisey, I'm in a process of requesting MammaPrint . $500.00 is worth it if you can avoid chemo. You're absolutely right. You have to be very lucky to go through chemo w/o long term SE. I don't think I can be in that lucky group of people. Thanks for the warning of hair loss.

meg2016

I did cold capping during chemo and didn't have the hair loss. I did acupuncture during chemo to treat my neuropathy and it improved during treatment and is completely gone now. I also found the AC chemo to be much more tolerable and fewer side effects than the taxotere during treatment. I am only a couple months outside of chemo, but already feel very good. So don't assume that all the side effects (permanent or temporary) will affect you, every body is different and reacts differently. If the tests indicate chemo is needed for you, it is very possible to come out the other side and be truly glad you did it. Good luck!

KBeee

Sandy, I would encourage you to get a second and/or third opinion and ask whether or not they recommend chemo, and also ask them WHY? What are the specific benefits versus risks for your particular situation? They need to consider ago, preexisting medical conditions, etc. Tough decisions.

sandyp11

KBeee, did you get oncotype dx back in 2013? I have a similar tumor like your first one. Mine is IDC, stage I, grade 2, 0/2 nodes, ER+, PR+, HER2-, and only 0.4 cm. My first MO said chemo b/c of my score of 31, second MO said NO CHEMO b/c "there is no data shows the benefits of chemo for a small tumor <0.5 cm." I'm waiting to see the third MO on 10/19. However, my gut tell me to do chemo just to be on the safe side, but not sure which decision would be the SAFE SIDE. I'm 47, don't have any other medical condition, but I have a strong history family of CA. One of my sister died 2 yrs ago from BC, stage IV, triple negatives. My other sister is ovarian CA survivor for 1 yrs so far, still alive at the age of 57. I'm scared of having recurrence and not sure if I can enjoy my life wondering what would happen if I don't do chemo now. Thanks for your opinion.

Cowgirl13

Lisey, can you provide a citation for the 10% permanent hair loss with Taxotere? It seems a bit high. Thank you!

beebs2704

you may want to read this study.... http://meetinglibrary.asco.org/content/136861-151

It contradicts what your MO told you about the size of your tumour affecting recurrence. I had a larger tumour, was node negative, and my Oncotype was 26. My report said it would be about 5-6% benefit of distant recurrence so I elected for chemo. (Size or grading wasn't mentioned). If I had a score over 30, my MO said it would be automatic

SandyP..have you done genetics testing given your family history?

Cowgirl13

Thank you, kayb. I had no idea.

sandyp11

Beebs2704, thank you for sending that study..link. As mentioned earlier, I might do chemo. I've been thinking a lot about it. I'd rather suffer from a permanent neuropathy, for examples, than dealing with metastasis of CA . Once you got CA, you can't expect to have a healthy body any more. You will either have chemo's SE, or having a recurrence or something. ... From this website, I see some women still get recurrence even if they caught CA at early stage, had chemo, bilateral mastectomy, on tamoxifen. Basically they did everything according to the guideline and still couldn't avoid having the recurrence. Chemo works for some women, but not for all. About BRCA testing, I had that test done right after I found out about my sister's CA which is 2 yrs ago. Mine BRCA is negative, meaning that my risk of getting BC is about the same with others. It didn't say I got a higher risk, but still I got Dx of BC 2 yrs after that. Looks like you completed the first cycle of TC, and about to get the second cycle. Hope you'll continue to do well.