Breast Cancer Oncotype DX vs. MammaPrint - 1264441

rita84
Posts:4

I am a 47 y/o breast cancer patient, stage 2a -- invasive ductal carcinoma (T2/N0/M0) -- tumor size 3.1 cm, ER+, PR+, and Her2-, BRCA1 -- variant L1844I, BRCA2 -- no mutation.

On April 24th, I underwent a lumpectomy on my right breast plus sentinel lymph node excision. My Oncotype DX score is 20, with a 12% average rate of recurrence. My breast surgeon recommends radiation followed by Tamoxifen. But my oncologist recommends chemo (4 cycles of Taxotere + Cytoxan) followed by radiation and Tamoxifen. Surgeon says at best, chemo would decrease my recurrence rate by only 3 to 5%. Oncologist can't give me any percentages -- says everyone is different, but since I'm relatively young and healthy (besides breast cancer), she thinks I'll tolerate chemo fairly well.

My mom was diagnosed with lung cancer 13 years ago (NonSmoker!) and had a horrible experience with chemo. I don't see the point of enduring chemo's devastating side effects unless it will likely decrease my breast cancer's recurrence rate. Since my Oncotype score of 20 is considered in the low intermediate range, should I seek a MammaPrint test for more definitive results? My oncologist hasn't offered this test. Should I get a second opinion and push for the MammaPrint?

Forums

catdander
Posts:

Hello rita84 and welcome to Grace. I'm very sorry for the uncertainty you're facing. Cancer has so much uncertainty associated with it. Everyone is different. Everyone reacts differently to treatments and everyone's cancer biology is different. For example my husband's subtype of nsclc suggests it should be much more aggressive than it is (but his cancer's individ biology is different than most) and his chemo should not have been as difficult for him than it was (but his individual constitution is more sensitive than most). These individual differences are why it's important for there to be large numbers of people in a data pool to be sure treatments do what we think they'll do. Also most people see the medical oncologists, who have the most experience with the whole of an individs complete treatment program as having the best outlook for the individual. I hope some of that makes sense. It all comes down to "it depends" on the individual. There are just too many variables to make a judgement call without all the info.

It's always good to get a 2nd opinion if you're not confident you have all the info needed. You also can talk to your med onc about the mammaprint. Both are very important self advocate steps to take if you need assurance.

You may breeze through chemo even though your mom didn't. We have a member who just went through over 2 years on a single chemo drug that didn't give him any side effects, my husband took the same drug for 2 years and it made him very sick.

I will contact our breast cancer onc specialists to comment on your questions.

All best,
Janine

dr cianfrocca
Posts: 49

Oncotype DX and Mammaprint are both ways of looking at the genes in a woman's breast cancer to try to determine the risk of recurrence without chemotherapy and to try to predict how much chemotherapy will reduce that risk. One of the limitations of Oncotype DX testing is the "intermediate risk" category. If the score falls into this category, the magnitude of benefit from chemotherapy is uncertain; so uncertain that a trial was conducted randomizing women with scores of 11-25 to chemotherapy vs no chemotherapy. Unfortunately, results from that trial are not available yet. While it is possible that Mammaprint could give you further information (since it does not have an "intermediate" category), it is possible that your insurance won't cover that since Oncotype testing has already been done.

I agree with Janine that second opinions, particularly with a medical oncologist specializing in breast cancer can be very helpful when you feel you need more information and also when you are receiving different opinions from your treating physicians.

Dr Cianfrocca

bigred
Posts: 4

Hi Rita!
So sorry to hear about your recent diagnosis. As though going through all the tests and procedures aren't enough, receiving an inconclusive test can "undo" the strongest of us.

I was diagnosed with Stage 1 bc in Aug 2012, 2 small tumors (13 and 14 mm), nodes were clear, BRCA- no mutation. Due to the location of the 2 tumors, I opted for a mastectomy on the right side which also eliminated the need for radiation.My OncotypeDX score was 21. Given that my tumors were small and contained, and the other tests came back negative, I was heavily leaning towards no chemo. My oncologist recommended the MammaPrint test. Much to all of our surprise, it came back "high risk" for recurrence.

The chemo consisted of 4 rounds of AC and 4 rounds of Taxotere, every two weeks, and am now taking Tamoxifen for 5 years. The chemo was very manageable. Everyone is different, and everyone will have their own set of side effects, but for me the first day or two after, I laid low and then was back to my activities. Likely the chemo your mom got would be very different from what you would receive. And even when you experience side effects, they have recommendations for things to take or do to counteract them!

I would recommend that you seek other opinions (I did and they were all over the board!) Ask for the MammaPrint test, as it will give you a clear indication of how to proceed. I really thought I was done with treatment after my surgery, except for the Tamoxifen, since all my results had come back clear. I'm so glad I took that next step. If insurance won't cover the additional test, let Agendia know (they make the MammaPrint test) and maybe they can help.

Good luck with your decision!! Cari

rita84
Posts: 4

Many thanks to you Janine, Cari, and Dr. Cianfrocca for your very thoughtful responses to my concerns about chemo and MammaPrint testing. I'm seeing another oncologist next week to get a second opinion about my treatment options.

A few days ago, I contacted the MammaPrint company and was informed that they require a fresh tissue sample to conduct the test. But since my lumpectomy was performed over two months ago, that tissue is no longer available. As a result, it looks like the MammaPrint is out for me. I guess, though, I'll know for sure after the consult next week. I have to say this entire situation has been an emotional struggle for me. I'm used to being confident in my decision making, but when it comes to my breast cancer, I feel like I'm stumbling around, lost in the dark and, unfortunately, no one can tell me for sure which way to go.

JimC
Posts: 2753

Rita,

I'm sorry to say that uncertainty is one of the most difficult aspects of cancer, for the patient and their loved ones. All you can do, with the help of your doctors, is make the most informed decisions possible and go with them. It's useless to second guess those decisions later, because they were the best choices you could make at the time, and there is no way to know how you would have fared on a different path.

Having said that, I've done that second guessing myself. From experience, I can tell you it has not helped me.

With regard to chemo and its side effects, as Cari and Janine pointed out chemo can be quite manageable, and over the years doctors have become better at prescribing drugs to minimize chemo side effects.

JimC
Forum moderator

bigred
Posts: 4

Hi Rita!

Regarding the MammaPrint test, it is also available using FFPE
tissue. You don't need fresh tissue for the test!
So don't give up hope on that option!!

Good luck with your second opinion! Please let us know what you decide!!

Wishing you the best, Cari

rita84
Posts: 4

Hi, Cari and Jim.

Just wanted to check back in and let you know where things stand with me and my breast cancer journey.

I received a second opinion back in early July and the second oncologist concurred with first's recommendation that I undergo chemo (4 rounds of Cytoxan + Taxotere). After careful consideration, I decided to do the chemo -- but under the care of the second oncologist, as I liked his manner and personality much better than the first's!

In any case, at this point, I've already undergone two chemo treatments, with the third coming up this Friday. So far, I've managed to survive the side effects, but the nausea, vomiting, and fatigue that I've experienced in the days after have been rough. And twice now I've had to deal with chemo burn on my arm as a result of the Taxotere burning my skin and veins. Not pretty at all, let me tell you. Hopefully, I'll still have fairly good use of my arm after all this is over. :)

Thanks so much to both of you for your encouraging words as I struggled to make a decision about treatment. I'm looking forward not backward, and I'm not second guessing the course I've taken. I honestly believe I've chosen the best path for myself, and I'm greatly appreciative of your insight and support along the way. Thanks again to both of you for taking time to reach out show me that I wasn't alone.

All the best,
Rita

catdander
Posts:

Rita, I'm glad you are seeing an oncologist who has a personality to suite your needs, it's more important than one may think (as long as their as good at treating as they are at communicating :) )

I wonder if you've used all the tricks for managing nausea and vomiting. Staying on top of these side effects help most people. Just in the past 4 or 5 years Emend/Aprepitant, an antiemetic is given completely during infusions of chemo. During my husband's first line he took emend in doses including a pill the day after. If that's the case for you getting it down before getting out of bed is a good idea so to give it time to start working before moving around much. That's also true for the other antiemetics prescribed in the days after chemo. Taking them on a schedule instead of taking them after becoming nauseous helps most people. Dr Harman directs the palliative care team at Stanford and has excellent bag of tricks to help. http://cancergrace.org/cancer-treatments/tag/nausea/

Letting the chemo nurses know about the burning may help, sometimes there are adjustments that can be done to alleviate some of it.

All the best Rita,
Janine

I'll ask Dr. Harman to comment.

bigred
Posts: 4

Rita, Thank you for the update. I had been thinking about you. As Janine said, it is so important to find a doctor that works with your personality. It is a difficult process as it is. And having chosen the chemo path, you won't look back and think what "what if?"

So sorry to hear about the nausea and vomiting. I went through that with my first few treatments. I had the Amend, but realized that it was giving me a nasty headache and made me nauseous, thus a vicious cycle. They changed the meds and had me come in for fluids the next day. Made all the difference!

Best of luck with your last treatments!!

Cari

Dr West
Posts: 4735

Rita,

At many centers, Taxotere (docetaxel) is only given through either a portacath or a PICC line because of the risk of damage to the surrounding tissue if the chemo leads out from the IV site. You can learn more about a portacath or PICC by searching for the terms here, but a PICC would be a strong option, in that it's basically a long IV that can be left in for weeks to a few months at a time. Because the amount of chemo you are to get is limited, but you want to ensure that it goes into the right place and doesn't leak out, a PICC is a more reliable way to get the chemo infused safely than a "peripheral" IV (small IV in the arm/hand).

Good luck.

-Dr. West

catdander
Posts:

Rita, I received a reply from Dr. Harman the palliative care pro. She was unable to log-in (probably due to the problems our site is experiencing. :evil: ) She asked that I paste her reply so here it is below,

"Dear Rita,

I'm sorry for the side effects you are dealing with. I would agree that a preemptive approach is a good one so that you are not playing catch-up or chasing your nausea. Sometimes that means that you are multiple scheduled anti-nausea medications, and that is OK.

Best,
Dr. Harman"

Dr. Cianfrocca, I can't say how good it is to have you follow up on these threads. THANKS a million.

Cari, Many thanks for providing insight. It's good to see so many bases covered for Rita.

All best to all of y'all,
Janine

rita84
Posts: 4

Hi, everyone.

I can't tell you how much I appreciate your replies to my last post.

Update: I tolerated my third round of chemo (Taxotere and Cytoxan) much better than the first two. It was nausea and vomiting free, thanks to my receiving Emend and Aloxi prior to infusion. I also received fluids while the chemo was being administered, so I think that helped as well.

Unfortunately, however, the chemo was once again infused via an IV in my forearm, and once again a nasty burn developed on my arm about a week after treatment. This burn was in fact the worst of any that I've received so far (lots of stinging, peeling, and now scarring), and I wound up having to treat it with Silvadene cream. So for my final round of chemo this Friday, my oncologist wants to insert a PICC line to avoid more damage to my skin.

Previously, Dr. West recommended that I get a PICC line to ensure safe infusion, and although I've read about its benefits, at this point I'm scared that something will go wrong with the insertion of the catheter, and I might suffer complications such as leakage, phlebitis, air embolism, nerve injury, or catheter breakage. I've been told that I have small veins, so I'm thinking that fact will further complicate the PICC insertion.

I'd hate to scar my arm even further with another IV in the arm, but at this final stage of my chemo, I'm not certain that a PICC line is really the best option for me because it, too, has significant risks. Any advice that anyone can offer on what I should do going forward would be greatly appreciated. Thanks so much.

-- Rita

JimC
Posts: 2753

Hi Rita,

You are correct, that every procedure has risks, and it's hard for someone else to tell you whether those risks outweigh the risks and trouble of another tough infusion reaction. I'm sure if you ask any oncologist, they will tell you that they use PICC lines frequently without trouble. But just like any procedure or medication, there are cases where trouble arises.

I can certainly understand you're reluctance if you expect to have just one more infusion. One question which might affect your decision is whether you are likely to need chemo in the future; that might be one to ask your doctor.

Good luck whichever path you choose.

JimC
Forum moderator

Dr West
Posts: 4735

The question is really whether the risk of a PICC line, which is very, very low, exceeds the risk of having the chemo leak out into surrounding tissues. At my center and many others, we don't ever give Taxotere through small peripheral IVs. My perspective is that the risk of NOT doing the PICC is very real and very clearly greater than the very, very low risk of placing a PICC line.

Good luck.

-Dr. West

robina
Posts: 2

Please go for the Mammaprint test and also get the second opinion from super specialty oncologist.

bigred
Posts: 4

Hi Rita!
I just stumbled across this conversation from last year, and wanted to follow up with you. How did the last rounds of your chemo go, and how are you faring now? I'm sure your hair has come back with lots of curls!
Thinking of you and wishing you good health!
Best, Cari