Not sure about Chemo....

Jezikah

Back story - i was diagnosed with BC at the end of July (I found a lump and had a core biopsy done). I had a lymph node resection at the end of August (all clear!) and a bilateral mastectomy with reconstruction at the end of Sept. I am 33 and have 1 child- an almost 4 yr old daughter.

I have an ATM genetic mutation. I had 2 invasive ductal tumors and DCIS in my left breast. Tumors were 1cm & 2cm. Negative margins from surgery. ER+/PR+/HER2 - and Oncotype DX score of 20.

Here's where it gets weird/confusing when talking to the oncologist...

We go see him 2 weeks ago when I'm 3 weeks post-op. He says based on your age, the number and size of tumors, myself and the 'tumor board' recommend you do 4 rounds of chemo. He says, I'll order this Oncotype test, but I'm not convinced of how good a tool it is for someone your age since they don't really have the data, you're an outlier. And because you're so young, I would say let's be aggressive with this so it doesn't spread/recur.

Now this isn't news I want to hear, I don't WANT to do chemo, but knew it was a possibility and everything he said made total sense.

So we went home, talked about it, I came to terms with going ahead and doing chemo, looked into fertility options, should I get eggs/embryos frozen, etc.

He calls last week with the onco type results - 20, so in the low end of the 'moderate risk' gray zone. But like he said, given the other factors he still recommended it. (He says this very thing on the phone).

Then we go see him yesterday- presumably to set up a schedule to start chemo. And he has COMPLETELY changed his tune. Now he's saying he doesn't recommend chemo and thinks the benefit would be minimal and especially if I want functioning ovaries and want more kids and he said his new opinion was based on the numbers from the onco test which showed about a 4-6% better outcome with chemo+tam, vs just Tam. This is the very test he's telling me a couple weeks before that he wouldn't put much stake in.

I am just totally lost with what to do at this point! I'm looking into getting a second option, which I will have to pay for out of pocket since the cancer center where he's at is the only one in network.

I just want to do what's best for myself and my family. Yes I'd like to have another kid and I really don't want to do chemo, but if chemo is my best shot at living a long time for my daughter and husband, then I'll do it. I also hate the rollercoaster of emotions this doctor put me through and now I don't feel I can trust him!

I've read stories of people in similar situations who didn't do chemo, so I guess I just really wantreassurance at this point that no chemo is really the best choice.

Sorry this is so, so long, but if anyone has any comments/advice/insight, I would very much appreciate it!!

inks

What is the grade of your tumors? Would you be mad at yourself if you did not do chemo and the cancer would return? Have you looked into doing zoladex shots during chemo to protect your ovaries?

Younger women have way worse outcomes than older women and that is the reason I chose a harsher of the 2 chemos my oncologist recommended. I did not want to regret not having enough treatment if it were to come back. The oncotype test is based on way older women than you are. There is not enough information and research about you genetic mutation and it's overall effect on survival.

Out of network second opinion will cost you a bit but it would give you peace of mind. Take your time making your descision.

gracie22

Hopefully more posters will chime in with similar stats to give their opinions, but a second opinion is always a good idea, from an NCI designated cancer center if possible. I have HER2+ cancer so oncotype did not come into play. Agree your onc's behavior was confusing. Some feel that tumor biology rules, and that age should not come into the equation, and most of those would likely agree that an oncotype score of 20, no nodes, small tumors, means no chemo. Other docs do weigh the age thing (younger women have faster metabolisms and greater amount of estrogen for a much longer time than older women) and opt for chemo with younger patients despite scores that otherwise would mean no chemo. I am not familiar with your ATM mutation--that may have been a consideration in onc's original recommendation for chemo. I would have understood your doc sticking to his guns, but his reversal understandably made you feel unsure. What was his response when you asked him what changed his mind? Regardless, I would get another opinion. You may also want to get a Mammaprint test done. You may have to pay for it out of pocket, but it tests for a broader array of genes, and indicates either high or low risk for recurrence (no middle.) Good luck!

Jezikah

Tumors are Grade 2. The ATM gene is considered a moderate risk for breast cancer, something like 35 chance of getting bc in your lifetime. Also increased chance of pancreatic cancer. But they don't have a ton of research on it like BRCA.

I asked him the reason for changing his mind and he said it was the oncotype results and numbers they gave for reoccurrence. Which is why it was so bizarre because he specifically said he wouldn't give the test a lot of weight in our first meeting and still recommended chemo on the phone.

He did say if I chose chemo, embryo freezing would be my best option for fertility. He said that had better results than the shots and my health ins does cover IVF, so seems like it would be the way to go. But then we'd be delaying treatments another month or 2 to do that.

It's just the risk vs rewards- plenty of ppl have recurrence even with chemo, but if I did have recurrence it would be hard to think that it could have been prevented with chemo now. I'm sure it would be impossible not to second guess it.

KathyL624

Just wondering why it is often said here that oncotype isn't as reliable for younger women..I was 38 when diagnosed and none of my doctors at Sloane Kettering have said anything like that. They have put a lot of weight on the oncotype test regardless of age. Is there literature that says this about oncotype

gracie22

Thanks for the additional info. Grade is helpful; chemo does little for grade 1--works best on rapidly dividing grade 3 cancer cells. Grade 2 is middle of the road; it does at least give you a better feeling that chemo would have some efficacy if you choose to go with it. With that info, plus your ATM explanation, I would definitely want another opinion and a MammaPrint.

You are right about second guessing; I often hear people on the board say "go with your gut/whatever medical advice you decide on and don't look back", but it really is impossible advice to follow for most. For what it's worth, I get your reluctance to go with chemo. It is a huge decision, and the advice that it's "doable" gets kind of annoying. Yes, it's doable; so is surviving a car accident or getting through the mumps. Doesn't mean anyone wants to sign up for it, particularly when the statistical benefit is sometimes low or unknown.

Get another opinion and go from there. Assuming you are highly ER/PR+, antihormonals seem to be the best weapons for early stage. Some feel that the benefit of chemo for early stage, highly ER/PR+ women is not due to the chemo's action on cancer cells per se, but the fact that it typically puts women into menopause, slowing metabolism and reducing estrogen production. That same benefit (and less collateral damage) can be had with antihormonals and sometimes surgery, depending on what the person is most comfortable with. Sorry you are going through this. I especially hate to see young people with families dealing with these difficult decisions.

gracie22

KathyL, I think it comes from posters' experiences. Reading the posts here, it is easy to see that there are huge differences in treatment preference by various docs. Some still weigh age and other factors, others go strictly by tumor biology. I think all consider family history, as anyone with lots of BC in the family and no known genetic markers likely has a gene we just have not figured out yet. I have been surprised to hear from posters whose docs did not offer (or outright refused) to order Oncotype tests even though the patients appeared to have "qualifying" cancers (ER/PR+, HER-, 3 or fewer nodes suspected positive, early stage.) I don't get, but it appears to happen regularly. Oncotype is a major innovation in treatment guidance, and one that should have happened long ago. It is dismaying to read about patient experiences with docs that, for whatever reason, don't even offer it (U.S. patients).

KBeee

I believe most of the studies on the Oncotype were on post menopausal women so there may not be enough data on it's applicability to younger women. Someone correct me if I am wrong.

I would recommend a second and possibly a third opinion. I'd also recommend the Mammaprint.

This is a very important decision which you should not rush. Make an old fashion T chart listing pros and cons. That may help

Jezikah

Thank you so much for the information so far. I did do more research on the Oncotype test and really the only supporting studies I could find for the test were for Postmenopausal women. They do have data on their website showing test scores for women <40, but the problem that I see with the averages on their report is that they are averaging out all patients in their studies and not taking into account the age or pre-/post-menopausal status of the patient. until we know what that number is, I don't think you can just look at the biology/genetics of the tumor like the oncotype test is doing. I think you also need to have a factor for the age of the patient (especially since <35 at diagnosis is considered a contributing factor for recurrence). I want to see what other women in my age range have for recurrence, not just the average recurrence of everyone with my same tumor biology. I also talked to my genetic counselor to see if she can find any information regarding chemo outcomes or recurrence for women with the ATM mutation. My oncologist didn't even discuss my gene mutation when discussing treatment - I know there's not a ton known about the gene, but to know that he's at least considering/thinking about it would have been reassuring. I've found other threads about the ATM gene and that there seems to be a higher recurrence rate linked with radiation, but I couldn't find anything about chemo. I just really want to make the right decision on this and I feel if I do chemo, the clock is sort of ticking here. I would need to get with the fertility specialist and talk about embryo freezing, my husband needs to get tested to make sure he doesn't have the ATM mutation, and above all, I want to feel confident that I'm making the best choice...

KBeee

I would talk with a fertility specialist to get a consult and get other opinions as well. Hopefully s big university can do that all in one place

barcelonagirl

Jezikah-

I will get you information supporting the need to run a MammaPrint test on you. The recently released data from the MINDACT trial, (just reported in the New England Journal of Medicine) followed almost 6700 women for 5 - 9 years with a primary goal of identifying patients who could safely forgo chemo. These patients ranged widely in age, stage, lymph node status, tumor size, and hormonal status. This data will provide you with what you need to know, independent of the pathological findings from your biopsy.

And as an Oncotype 21, I understand the frustration of an indeterminate result. MammaPrint is binary and FDA cleared

Stay tuned!!

Jezikah

Please do! Thank for you the info - I have looked into the test more and think it would be good to get it done. Do I just ask my onco to submit for that test?

barcelonagirl

Hi Jezikah!

You can ask your oncologist for the test. It would be run on your tumor removed during surgery. If your physician does not use the MammaPrint test, you can call Agendia's offices and they can help you. 888.321.2732

The MammaPrint test is FDA cleared for use on women of all ages.

The MINDACT trial that was recently published in the New England Journal of Medicine followed 6693 women over a minimum of 5 years to compare the MammaPrint test to results from the standard of care clinical factor assessment tool (Adjuvant Online). It was a prospective (following the group over time, rather than looking back), randomized, Phase III study that provided Level 1A evidence.

The characteristics of the patients and tumors studied include 1) age range from 23 to 71; 2) tumor size up to 5 cm; 3) tumor grade range of 1 - 3; 4) up to 3 positive lymph nodes; and 5) ER +/- and HER2 +/- .

The primary endpoint was to look at the discordant group - HIGH risk clinically (younger age, tumor >2 cm, nodal involvement, grade II or III) yet LOW risk genomically (MammaPrint) and evaluate the survival rates over 5 years. That's where the randomization comes in. Half of the discordant group received chemo while the other half did not. After a minimum of five years of evaluation, there was no statistical difference in disease free survival rates. 94.4% without chemo vs 95.9% with chemo. Thus, for all individuals who were categorized HIGH risk clinically, 46% of the time they were found to show little to no benefit to chemotherapy!!

If you look at some of BarredOwl's posts, she provides a lot of good data on this study.

I hope this helps you some!

Have a great weekend!

Jezikah

That is great information! I am calling my Dr this morning to see if we can get that test ordered. Thanks!

Lisey

I had an oncotype of 20 (I'm 41) and ordered the mammaprint. I'll end up paying for it - but it'll only be $500 (still haven't been billed yet). My mammaprint came back low risk. i highly recommend the mammaprint for intermediate Oncotypes. Also, if you look at the SOFT study, it is focused on premenapausal women and is good news for those who are in the lower risks. I also am a grade 2, and I ended up deciding Chemo was not worth the risks... and I'm very optimistic that we are at a new age in cancer research and treatment - and chemo will be completely different within 5 years, so if I do recur, I'll have a lot of better tools to work with then. (I also have this gut feeling, since I'm luminal A, that chemo will actually make my cancer more aggressive if it still is in my body currently.. )

barcelonagirl

Such great information Lisey! Congrats on your LOW risk result!

With my Oncotype score of 21, I didn't know what to do. Fortunately my doctors told me about the MammaPrint test. Despite an early stage, low grade, no nodes, small tumors, and being ER+/HER2- my result came back HIGH risk. I'm so thankful that I had the test (and subsequent chemo) that I otherwise wouldn't have gotten. Being aware of one's options and advocating for yourself is so important. While we trust our doctors to guide us in the right direction regarding treatment, but no one knows our body like we do.

Do you homework, and DON'T be afraid to ask questions. You have a vested interest in the outcome!

Jezikah

Hi Lisey, thanks so much for the response! I've also been thinking about the advancements in technology and that even if I have a recurrence that treatments are getting better all the time, so my prognosis should be better than it was for people 5 or 10 yrs ago - which is what the current survival rates are based on... Also you wonder how many doctors over-prescribe chemo for minimal benefit, but when I see all these ladies in a same/similar situation to me that had chemo it makes me think that I need it too...

So I've been playing phone tag with the Onco's nurse since Wed trying to get some of my follow-up questions answered. So the first question I asked was if he got a consensus from the tumor board on this revised recommendation of no chemo. Apparently no - he didn't even bring up my case this week because he said he knew they would all say "yes" to chemo given the Oncotype score in the "inconclusive" range. So I asked why then he had a different recommendation from the tumor board. Nurse said that his recommendation was based on the fact that I said fertility was a high priority for me. Well, yes, it's a high priority, but no more cancer and being here for the daughter I do have is definitely the HIGHEST priority. Then I asked the nurse to ask him what his recommendation would be with all the info we have without any consideration to fertility. Then he said, yes, I would recommend chemo if you were not concerned about fertility. OMG, why couldn't he just say that on Monday instead of making me more and more confused with each question and I was really trying to understand this change of recommendation, but he was making it so difficult by not explaining it very well. EVERYONE I talk to in this hospital/clinic says that this Onco is THE BEST - it's who they would want themselves or their family member to see, etc,etc. But in my experience, he's been terrible at explaining things and he doesn't seem to have the urgency and desire to make sure that all my questions and concerns are completely answered. Thinking back, I realize he gave me a lot of "half answers" and didn't really fully explain or answer things compared to what I've seen after doing a lot of research and reading about other people's experiences over the last several days. Anyway, my insurance covers IVF, so I have a meeting with a fertility doctor on Monday to see if we can do egg retrieval this month if I do start chemo at the end of the month. This is just soooo stressful and I'm so concerned about making the wrong decision and then if I don't do chemo, I'll regret it if the cancer comes back. But when so many doctors do recommend chemo, it's hard for a layperson to justify making a different choice from the experts... Aren't they supposed to have our best interests in mind? And I want to use any tools I can to fight this thing. A fear I do have is if I forgo chemo and then get pregnant in the next 2 yrs and then have a recurrence while pregnant and have to make even harder decisions at that time! So if I can minimize that situation in any way, it seems like the best choice... But at the same time, I look at the numbers and feel I (like most early stage breast cancers) have a really good chance at NOT having a reoccurrence to begin with. But then I wonder if I'm looking at the same numbers as everyone else - why do so many people do chemo? Do they know things I don't and things I should be considering? Or they just decided that whatever decrease in reoccurrence risk was worth it to go through the chemo??

BarredOwl

Regarding the recent MINDACT results and MammaPrint, please note that the Preview Content available for free on the New England Journal of Medicine (NEJM) website is not the complete publication, and it is not a comprehensive description of the study, the published results, or the limitations of certain findings. This is a highly detailed and technical publication, so I refer others to the original. The documents can be accessed here:

Cardoso (2016): http://www.nejm.org/doi/full/10.1056/NEJMoa1602253

(The complete article, including all Supplementary Materials, is available for purchase.)

Hudis editorial (2016): http://www.nejm.org/doi/pdf/10.1056/NEJMe1607947

(The complete article is available for purchase)

Hunter perspective (2016) (Free): http://www.nejm.org/doi/pdf/10.1056/NEJMp1608282

You can purchase a one-day pass to the NEJM, download and save complete pdf copies of the Cardoso paper and the Hudis editorial (plus any other articles of interest). Be sure to access and save down pdf copies of the Supplementary Appendix to Cardoso and a copy of the MINDACT Protocol. The Supplementary Appendix contains a large amount of additional data and information and is essential material.

The MINDACT trial design incorporated a clinical risk classification (using a MODIFIED version of Adjuant! Online to assign clinical risk as "Clinical ("Clin") Low Risk" or "Clinical High Risk") and a genomic risk classification (MammaPrint ("MP") Low Risk or MammaPrint High Risk), yielding four different risk groups which were separately assessed:

Clin Low / MP Low

Clin Low / MP High

Clin High / MP Low

Clin High / MP High

Patients receiving the MammaPrint test fall into one of these four risk groups, and should probably pay attention to the results (and caveats) applicable to that specific group. They should ask their Medical Oncologist for expert advice regarding their Clinical Risk classification.

According to the NEJM paper, "Details regarding clinical risk assessment according to the modified version of Adjuvant! Online are provided in Table S13 in the Supplementary Appendix." Patients should ask their Medical Oncologist if Table S13 can be used as a surrogate for determining their "Clinical Risk" along the lines of the MINDACT Clinical Trial Protocol, permitting one to focus on the appropriate patient cohort(s) that are relevant to their particular situation and decision.

Always confirm your understanding of any information from such a publication with your Medical Oncologist to ensure accurate understanding and correct application to your situation.

Patients should request copies of all MammaPrint / BluePrint reports and summaries received from the test provider (Agendia) for their review and records.

BarredOwl

---

UPDATE: Cardoso (2016) and all Supplementary Materials, including the Supplementary Appendix, are now available for FREE at the link above.

Jezikah

Wow, HUGE news yesterday.

So last Wednesday, I got a call from my Onco. He did present my case to tumor board again last week and they had a very long discussion/debate about whether I should do chemo. The consensus was that yes, I should do it. Also, I had sent my info to my cousin and his wife who are both pathologists in Chicago and they talked to some highly regarded oncos they work with there who said, yes, she should do chemo. Not a strong like "must do", but a recommendation to do it. So I decided that yes, I'm going to go ahead with chemo. I started the process with the fertility Dr to get my eggs harvested and will be going to Salt Lake this weekend to do that. Anyway, when my Onco was telling me about the tumor board discussion, he said that he decided to have my other smaller tumor tested just to see if it's different and it might change treatment recommendations.

Well, results came back yesterday that the second tumor is an entirely different cancer!! And it's HER2+, so have to do different treatment than I was going to do for my HER2- cancer. So I asked my pathologist cousin how common this is and if my Dr. dropped the ball by not testing it in the first place. Because if they would have just tested the tumor to start with, we wouldn't have had to go through all this back and forth and the Oncotype DX and all that. Well, he said that standard procedure is to NOT test the second tumor. He said they rarely do it and it is rarely requested by the Onco and when they do test, the second one is rarely different - he was actually very surprised by my results. So, apparently, this is very rare!

I guess I should feel lucky that my Onco went against the norm and had the second tumor tested so that I can get the correct treatment for my cancer!

wendymk2016

Your IDC is having HER2 +, in that case, you should go for target therapy along with Chemo. That will works well for your case.

Jezikah

Yes, definitely doing chemo now! Dr. said now I have to do 6 rounds instead of 4 and do Herceptin for 1 yr. I'm planning to start the week after Thanksgiving.

BarredOwl

Hi Jezikah:

You may wish to joint the Triple Positive Group here:

https://community.breastcancer.org/forum/80/topics/764183?page=994#idx_29820

BarredOwl