Chemo or no Chemo? Help!

Jayme33 · April 2012

Hi Ladies. I could really use the advice of all of you wonderfully informed women! I had a UMX last week. Got the drains out yesterday and the surgeon gave me my Path report which stated Stage IIA IDC with 2 DCIS in another quadrant of right breast,left breast had fibrocystic changes with ductal hyperplasis. My largest tumor was 2.5cm, grade 2, no node involvement.

The Surgeon said the effectivemess of chemo at 2.5 is really on the fence, some do it,some don't.The Oncologist was yes for chemo from day 1, without even waiting for the path report. He said the MRI showed multifocal so yes either way. I'm trying to get an appt with another Onco to get a second opinion. The original onco jumped the gun early and said it was larger from his experience...5cm. and stage 3, wanted to do neo adjuvent chemo before surgery even thoughI declined as I wanted UMX.

I'm 50, mother of 2. Can you ladies advise what you have done and if your happy what the decision you made? Appreciate all the advice I could get! Thanks, Jayme!

Anonymous · April 2012

Jayme - your oncologist should order an oncotype test on your tumor. That really helps in this process of deciding chemo, and the risk of not having chemo. When I was diagnosed 3.5 years ago, standard of care with a tumor over 2cm chemo was recommended. I'm not an oncologist, but it would seem that you have a few cancer things going on. They can't predict the effectiveness of chemo based on tumor size, so I'm not sure what your are referring to when you said "the Surgeon said the effectiveness of chemo at 2.5 is really on the fence".Maybe the surgeon was referring to 2cm as the point of which they automatically recommend chemo?

I think it's a great idea to get a second opinion but also get the oncotype test done. They take a tissue sample from the tumor and send it to Genomic Health to have the test performed. It's possible due to the total size of 5cm they won't do the oncotype, but that I don't know.

My tumor was 1.6cm, and my oncotype score was 23. I did chemo, and handled it fine - happy I did it and it's behind me.

I'm happy for you that your surgery is behind you and once this decision is made, you will feel soo much better. Good luck and hugs to you!

Moderators · April 2012

Great information, Aprilgirl1.

Jayme, there's some good info on the main Breastcancer.org site on the Oncotype DX test, if you're curious to learn more.

Hope this helps!

--The Mods

Jayme33 · April 2012

I asked the surgeon for the Oncotype Dx test. hesaid its expensive and up to the Onco. The Onco thought it was unnecessary but I will push the issue this week.

txmomof2 · April 2012

Jayme33 - I'm in the same boat as you so I don't have any advice. My scores are all very low (ki67 - 1%, oncotype 5, grade I) but I had 4 areas of tumors, the largest was 2.5cm. My MO is unsure what to do with me so she's getting a 2nd opinion (I'm waiting anxiously to hear from her today). I'm getting my own 2nd opinion next week. I too would push for the oncotype test but my MO didn't put much weight on it. She said from the biology of my tumor and even my age (I'm 35) she wouldn't do chemo but because it was multifocal, she's on the fence. I expected to go in there and be told what to do, not make medical decisions for myself!! Keep us updated!

Jayme33 · April 2012

Thanks for your input, txmomof2! I agree,being told something conclusive would be nice. May I ask what the ki67 is?

nikola · April 2012

I had three cancers in my right breast, 1.3 cm, 1.1 cm and 0.2 cm. I was 42 and my onc said chemo based on age and three cancers. I did not do oncotype but my guess would be they would need to do all three of them.

Anonymous · April 2012

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txmomof2 · April 2012

I THINK ki67 shows how fast the cells are replicating. I just got a call from the nurse and my MO and the one she consulted with agreed that they would have my other 3 tumors tested for the ki67 number and based on that, would determine if I need chemo. They are all anticipating that I will get low numbers and then therefore would just take tamoxifen. So I am PRAYING for low numbers and will now do lots of research on what maybe the cut-off would be (the nurse wouldn't tell me).

Jayme33 · April 2012

Agreed, Sunflowers....I have crappy insurance. After sitting on hold for 1 hour yesterday, my insurance told me they would cover if the doc sent something in writing thta it is medically necessary (duh!!)

I am going to insis that theyorder it. If they don't, I will look elsewhere for someone new. I just hate the delay in getting answers!

Jayme33 · April 2012

Good luck, praying for low numbers foryou!

crking71 · April 2012

Jayme 33, I don't have the best insurance either, but Genomic Health is very good at appealing on your behalf. At first my insurance wouldn't cover the cost of the test, but Genomic Health was eventually able to get them to pay well over half of it. GH also offers additional assistance and payment options for those who qualify. Hope this helps!

Jayme33 · April 2012

Thanks CRKing, I'm going to give it a try. Do know anything about the ki67 test? Should I ask about that as well?

crking71 · April 2012

Actually, I have a quick update. I sent in my financial assistance form to Genomic Health several weeks ago, and I called them today because I haven't heard from them. They said that I qualified for a zero balance, so I owe nothing! Great news, especially since I have to pay the full balance for my genetic test. No help there, unfortunately!

Jayme 33, as for the Ki-67 score, that should have been included in your original pathology report. At least it was with mine. If you can't find it on your report, maybe you can ask your BS or MO.

coraleliz · April 2012

Jayme-I had to ask 3 times for the Oncotype test. The first time I was told "no" because I had 2 tumors. The 2nd time my MO said "no" because it wouldn't change his mind(but I'm the one that needed to decide!!!!!) I called & left a message with someone in his office that I wanted this test even if I have to pay for it & he reluctantly agreed. It came back "4". As for growing more than 1 tumor, sure they can have different biology(genomics) but some of us can grow more than 1 non-aggresive tumors & we won't benefit from chemo. It was definitely a hard decision for me.

momand2kids · April 2012

I am only going to add that you should absolutely push for the oncotype test. My stats are very similar to yours and we were all going down the "lumpectomy, radiation, hormonal road".. and we did that, but the oncotype, which came back in the"gray" area at the time, added more information for me. I was 48 with two young children--- it took me about 30 seconds to decide to do chemo.... my surgeon and onc both said that is what they would have done, but neither pushed. I think these 2-2.5 lumps with grade 2 and stage 2 are really in a very big gray area.... for me, I had to know I had done all I could. I will be 3 years out full treatment (chemo and radiation) next week and I feel great!!! My potential recurrence rate without chemo was not dramatically high, but the reduction in that potential was high enough to convince me.

Do everything you can to get the test---it will really help you to think about this...

Jayme33 · May 2012

Hi and thank you all for the input. I met with the oncologist today and he agreedto do the Oncotype DX. So 2-3 weeks more to wait and decide. I'm trying to get an appt witha 2nd oncologist for 3 weeks from now for a 2nd opinion. Now, hoping my insurance will come some if not all.

Jayme33 · May 2012

Hi CRKing71,I looked on my original Path report and couldn't find it. The oncologist did say it will be on the Oncotype Dx though, so looking forward to that piece of information as well.

scaredycatwoman · May 2012

Hi I am in a dilemma here I am Stage IIa idc grade 3 with 1 node out of 8 involved--er+pr+her2- My first med oncologist recommended chemo --2months of AC 2 months 0f T, then radiation then 5 years of Tamoxifen like drug. I went to get a second opinion and he threw a me twist--he wanted me to get the Oncotype test done. While I was excited that there might be a possibility of no chemo, the guidelines for the prognostic value of this test are generally for node negative cancer or for nodal involvement under the size 2.0 mm. I am node positve with a 3.0 mm cancer on one node. This test takes 2-3 weeks and so I am worried to wait that long especially since my first onc said she thought chemo was the absolute way to go considering the grade 3 and nodal involvement and size and the evidence of lymphovascular involvement.

anyone have any ideas?

coraleliz · May 2012

My oncotype test came back much quicker than 2 weeks. My MOs office sent my initial inquiry on a Monday, I heard from Genomic health on Thurs regarding insurance. Then on Tues they called me telling me they recieved 2 tumor specimans & asked if I wanted both tested(told them yes). Then 2 days later I got a phone call from my MO giving me my result. It may just depend on how many tests they are running that week. Hope you get a response soon(er)

gracebead · May 2012

Please make sure to check with your pathologist when he/she sent your slides (blocks) to Genomic Health. And then call Genomic Health to see whether they have started the test and when it is going to be done. The usual turnaround time is 7-10 days, and they fax the result to MO's office.

My friend's slides were not sent at all when she checked with Genomic Health delaying her case for 2 weeks. For mine, when I called GH after 2 weeks of waiting to see if they had sent the result to my MO, they hadn't even started since they weren't sure the block was IDC or DCIS... I lost 2 weeks too and it just added extra stress on me. So please check & check!! Good luck with your decision!!!

doxie · May 2012

scaredycatwoman - Grade 2 tumors are usually in the gray zone for chemo. This is why getting the tumor tested by Genomic Health is really important. It's like getting a 2nd opinion on the pathology of it. Always a great idea. Grade, % of ER/PR/HER2, and staining are subjective.

If your ER and/or PR are low % and/or low staining, your HER2 at 1 or 2 +, and/or have a high Ki67, then your oncotype will likely be in the intermediate to high intermediate indicating chemo may be an effective treatment. If these are the opposite, then chemo may not be indicated. Your MO is likely suggesting chemo because of the size of the tumor. That's the norm as a understand it.

Absolutely insist on the oncotype testing, though. You need as much info as possible to make all your treatment decisions.

Lee7 · May 2012

scaredycatwoman,

My one positive node was 3mm. I had to really fight with my first onc to get the Onco test done because of that node and had to wait for those results. I'm glad I did get the score because it gave me better info. I also switched Oncs.

Jayme33 · May 2012

Thank you all for the information. I will definitely stay on top of the Onc's office and Genomic to keep things rolling. I re-read my path report, trying to find a Ki-67 score, didn't find it. It did say the right breast had a "revised posterior margin with skeletal muscle". It gives me 3mm anterior margins from the IDC, but nothing is listed in terms of mm for the posterior margin. Does this mean the margins were not clear in the posterior side?

Chemo or no Chemo? Help!

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