Incremental value of Mammaprint after Oncotype?

Staceybee

Has anyone gotten a Mammaprint after Oncotype and felt it was worth it (and the wait) after getting Oncotype to determine chemo decision?

Lisey

YES!  I did.  I was an intermediate oncotype (20) and the initial biopsy said low PR value, which would be Luminal B, so that doesn't do as well on hormonals alone.  I was right on the edge of to do chemo or not.  I was 41 when diagnosed.  I took the Mammaprint and it came back low risk.  I called Mammaprint and they scheduled an appointment with their head doc in the lab who confirmed that they actually test it twice to verify and both times I was low risk.

I chose not to do chemo due to the Mammaprint result.  I'm very glad I did it. 

Lisey

Here's a post I made two years ago when I was just starting out.  Full of info...

https://community.breastcancer.org/forum/108/topics/845324?page=1

neworleansemerald

Hi to everyone 🙂 I just joined the group. Looking forward to the interaction and learning from all you. This is my story about the Oncotype and Mammaprint/Blueprint tests. It is just my story. All of you have to tome your decisions.

Yes, my Oncotype showed a 4% recurrence in 10 years. So I had decided not to do Chemo. My oncologist suggested I get a second opinion from the head of the Breast Cancer Dept at Moffitt Cancer Center. I had already completed my research about the Mammaprint/Blueprint. The Dr at Moffitt suggested that both tests are ordered. She said that is all she orders. My Mammaprint/Blueprint came back with a 38% recurrence in 5yrs. So them I had to bite the bullet and do Chemo. The problem with the M/B is that most insurances do not cover it. They have become better than when I had my test last May. Drs are stuck on the Oncotype. I found resistance here with my drs. This is my personal Oncotype is an old test. I do not know how many years it took to do the study. The results were favorable. If your Insurance pays for both tests do them. If not call the company and ask for the cost. I suggest you do your research. Ultimately the decision is yours. FYI the process for the MP/BP is long. The pathology dept where your specimen is being held has to talk to MP/BP Pathologist so the specimen is processed as they need and sent for the test. Then you enter the in line. Best wishes to all. This is our Journey. Have faith!!!🌈 I know it is hard!! I have my bad days ‼️‼️😥Some days I think I dreamt all this.😴 God bless🙏❤️ Healing wishes to all‼️

Lisey

New Orleans, on the cost of the Mammaprint…  I was told that if my insurance declined to pay, the max I would pay is $500.  Now this was 2 years ago, but I spoke then to Agendia and they confirmed they'd not bill me more than $500.. so WELL WORTH IT in my opinion.  Two years later, I still haven't received a bill and I know my insurance declined to pay. (stupid of them since I didn't do chemo and saved them a fortune).  

If Anyone has questions on the virtues of this test, please read the link I posted.. yes it's 11 pages.. but it's full of really good info.

edwards750

New Orleans - wow that’s quite a disparity between the Oncotype and Mammaprint results. I’m not sure I agree that Oncotype is a dinosaur in determining treatment or calculating a recurrence.

I have spoken to several radiologists who endorse and encourage women to have the test done. Whichever test you feel confident with should be the one you choose or both if need be. My score came back with an 8% chance of recurrence and I personally don’t feel the need to have an additional test. I’ll be 7 years out in August. I don’t think any test is foolproof anyway.

Diane

PatsyKB

I shouldn’t be but I’m still chewing over my decision not to do chemo and to go straight to letrozole.

My OncotypeDX score was 24, within the range studied by then TailoRx study and within the 11-25 range of women who may safely bypass chemo.

My 10 yr risk of recurrence without chemo is 15% (and assuming tamoxifen- my AI is more effective).

But the absolute benefit of chemo would only be 3%. Given the risks associated with chemo, my decision was No Chemo.

My primary doc agrees. My MO wouldn’t say it directly but let us know through the information, discussion, stats, that he would advise against chemo.

And yet I keep questioning my decision.

Any opinions as to whether or not I should ask for the mamnaprint? Or would that muddy my personal waters...

DebAL

hi everyone, I had just the oncotype because I didn't feel I was on the fence based on the results. (27) Never hurts to ask for mammaprint if undecided. A low PR and slightly high ki 67 put me at luminal b. As lisey said and my MO confirmed with luminal b there is potentially some benefit to chemo along with hormonal therapy. ( I would imagine some low PRs are luminal a, I was not) Nothing is a guarantee as we already know. I just felt comfortable, and still do, with my decision. I was so so unbelievably thankful as 4 rounds of TC was a breeze for me. I will never know if chemo helped but it was worth the risk for the piece of mind. I was also not handed the chemo regimen that younger women are handed which can be more difficult to tolerate Patsy, try hard not to look back at your decision. You did what felt right and what was recommended and you sure seemed to think things through. You are under the care of a great team and none of them seemed to advise chemo. You are doing your part with diet and exercise and taking the PILL. The only other thing I did was ask for the FULL oncotype report. At first it was just 2 pages but I had to ask twice. There is a lot of info there and I wanted it. There are really no bad decisions. Just the unknown that all of us unfortunately need to live with. No looking back Patsy. Hugs and onward!

edwards750

Patsy - it’s s tough call either way. Idk what I would have done if chemo had been recommended. Given I’m a worrier I would probably have done it. Had I decided against it I would most likely be second guessing myself like you are now.

You made the best decision at the time based on information and advice you were given and you are going to drive yourself crazy rehashing your choice. It’s done. Give yourself a break. It will be okay.

Diane

PatsyKB

Yes indeed, DebAL and edwards750, you're both right in that I will drive myself crazy second guessing my decision. It was so close...24. And the TailoRx range of 11-25 put me in that precarious spot. But odds and risks:rewards and being logical are what did it in terms of my decision. It's just the emotional "what ifs" that are tripping me up right now.

But I'll be fine.

Thanks for talking me down!

DebAL

patsy, look at it as another transient moment like we all have from time to time. That's one great thing about this forum is that we "get it". It's nice to have such a safe place to say what's really on our minds. I'm thankful that I'm finally to the place of AI's and that most decisions are behind me, for now anyway. I'm sure you are too. My heart goes out to those that are just starting this journey. I hate it. And to those that are forging through and hurting whether it be physically or emotionally. We will be fine.

PatsyKB

You're absolutely right, DebAL, transient moments happen to all of us. Fortunately, between you and everyone else, I am now finding some equanimity with regard to my choice. As it happens, today I had a call from a the assistant to second MO in the same practice as my MO (mine is in Phoenix, this other MO, a woman, is here in Sedona). I'd called to ask her to look my results over and give me her opinion. Voila, she did: she would not recommend chemo for me. So now, with my MO's implied opinion, the second MO's directly stated opinion, and my primary care physician (he's never shy) weighing in, I can put this choice behind me.

And like you, DebAL, although i still consider myself a "newbie," having been diagnosed so recently - April...yikes! - I see others joining the discussions as brand new breast cancer patients and I have so much empathy for them. Maybe that's one of the great healing rewards of this website: not only can we educate ourselves which is so strengthening and healing, but we can help each other and those who come after us which further spreads the healing.

Onward, right?

Meow13

You guys, listen to your gut instincts. I had a score of 34 and decided no chemo. Doing fine 7 years out. I had a very strong opinion that I shouldn't do chemo. The pathology and the statistics with oncodx just didn't add up for me. On the other hand, there are people that had to fight to get chemo equally convinced it would help them, even though their doctors or oncodx suggested otherwise. Some times doing what you feel is right is the right decidion.

edwards750

You are right Meow about trusting your gut. I’m wondering did your medical team recommend chemo for you? Mine would have with that score. Bottom line is though it’s your call, your body and your life.

Diane

Meow13

Yes they really wanted me to do chemo. I told them why I wasn't convinced on the data presented and they understood. So I did AI therapy.

carmstr835

Yep go with your gut. I did as well; decided I wanted every possible advantage so I did chemo with 17 and 19 onca score and luminal B with mammaprint, then my pathology was redone and I came back Her2+ so gut impressions and decisions do mean something.

Meow13

I know there are no right answers. It really benefits you to do the research consult the experts and make your decision. You always have a choice. Make an informed one doesn't have to agree or for that matter disagree with your oncologist. In this battle, you need to.

Staceybee

To wrap up my initial question on the incremental value of a Mammaprint after an Oncotype of 13. The Mammaprint came back Low Risk and Luminal A, so supports the two MOs recommendations to forego chemo.

There are some numbers on the Mammprint that I am not sure what to do with.

For example the Luminal Type is +0.781 in a big bold circle, but there is no explanation what that means.

On the Low Risk chart, the Mammaprint Index (MPI) is +0.336 on a scale of 0 - 1.0. It clearly looks it would be better farther to the right closer to 1.0.

I plan to call the company to ask for a better explanation, but the takeaways from the report at the front are that chemo would not provide a significant benefit.

Staceybee

To wrap up my initial question on the incremental value of a Mammaprint after an Oncotype of 13. The Mammaprint came back Low Risk and Luminal A, so supports the two MOs recommendations to forego chemo.

There are some numbers on the Mammprint that I am not sure what to do with.

For example the Luminal Type is +0.781 in a big bold circle, but there is no explanation what that means.

On the Low Risk chart, the Mammaprint Index (MPI) is +0.336 on a scale of 0 - 1.0. It clearly looks it would be better farther to the right closer to 1.0.

I plan to call the company to ask for a better explanation, but the takeaways from the report at the front are that chemo would not provide a significant benefit.

Lisey

Staceybee, Here's my results.   I called them because I was freaked out to how close to 0 I was...   The lead doctor spoke to me and said they test the samples twice and make sure both concur... and while there must be something genetically that puts me closer to 0, I am low risk and just need to go with that.   Your Luminal Type is about the estrogen and that's a good thing.. you have estrogen.    Consider yourself much closer to the right than me, and I didn't do chemo.   It's also probably why you got a 13 on oncotype and I got a 20.  But I'm still low risk even at .059%.   

Spoonie77

Just wanted to say thanks for posting this thread. It's helpful to hear that others are in the same boat. Trying to get my MO to order a Mammaprint for me. Have to double check with my Medicare insurance before they will order it. I feel like they are trying to say it's not worth it to do the test, yet time and again, on this board and others, I've seen that it pays to get a Mammaprint when you fall in that borderline area of the ONCO DX. I need peace of mind if I'm going to choose to forego Chemo and this is the only way it seems I'm going to get it.

Hugs and healing to all.....

Lisey

Spoonie, even if Medicare declines it, call mammarpint (Agendia) They will work with you.  I was told never more than $500 out of pocket,  Totally worth that IMO. 

Spoonie77

Thanks Lisey. I did in fact speak with Agendia earlier today. They were very kind, understanding, and they explained basically what you stated in your post. They offer payment plans and will work with you on the final bill.

I let my MO know and am now waiting for them to call me back to let me know if she feels comfortable ordering it.

I kind of feel like my nurse there was REALLY trying to make it scary, that I would end up paying $25,000 out of pocket for the test, in order to keep me from ordering it. That is what she told me - that she looked it up for me and that was the cost. In the end, she did say, no matter what, if I was okay with the cost, she would order it.

I had a hard time believing that, and was glad that Agendia could reassure me that at most for retail (in very few cases) is $4,200. Even at that price, it would be worth it for my peace of mind. But the rep assured me that that is worst case scenario and most likely it is in the range of $1,00-500 on average.

Either way I am determined to get a Mammaprint; either from my MO or from another BC center w/a second opinion.

It's too important to glaze over and I couldn't agree more with you about that Lisey!

Lisey

Spoonie, I totally agree.  It saved me from agonizing over chemo.  I wish all intermediates would do it.  

Spoonie77

Thanks Lisey - I agree. In hindsight, now knowing I'd have to wait and wonder even after getting my ONCO back, I wish I could go back and ask my MO to just order the Mammaprint the first time around. IDK. The milk is spilled and just gotta wait till the new milk arrives I guess.....ie new test results. LOL. Anyway, I got a call from Agendia today. I think my MO ordered the test. Hoping I can connect with them tomorrow and get that test rolling. Fingers crossed.